On Human Dignity and the Sanctity of Life: Part 2

As promised, here is the research paper I wrote last semester on the sanctity of life. It addresses mostly the abortion debate, but also physician-assisted suicide. If you are just joining us, I encourage you to scroll down to yesterday’s post for clarification and context. I also want to add one more clarification. My last post focused exclusively on abortion as that is the issue dominating news and politics right now, but I believe there should be legislation banning physician-assisted suicide because as my paper explains, there are so many ethical problems with this practice unrelated to religion.

Introduction

The biblical perspective of human dignity is a subject of personal significance for me. When my mother was pregnant with me in 1989, a routine blood test revealed abnormal protein levels which she was told indicated an increased risk that I would be born with Down syndrome. Her doctor offered the option of undergoing an amniocentesis, the results of which would be more conclusive. She declined this test because it is a very delicate procedure that carries the small, but in my mother’s view unnecessary risk of causing miscarriage. My parents were both raised with a Christian worldview, so they were going to bring me into the world and love me either way. It turned out that I did not have Down syndrome, but seven months later, I would be diagnosed with a brain tumor which would damage my optic nerve rendering me totally blind.

In the ancient pre-Christian Greek and Roman empires, it was common practice to kill or abandon infants born with deformities, but unfortunately, failure to recognize the sanctity of every human life cannot be dismissed as ancient history. In the early decades of the 20th century, a eugenics movement inspired passage of compulsory sterilization laws in 32 states targeting people deemed “inferior or dangerous” including the poor, the disabled, the mentally ill, criminals, even people of color.1 These laws resulted in the compulsory sterilization of 60,000 people and persisted in some states until the 1970s. The eugenics laws in the United States inspired Hitler to implement the National Socialist compulsory sterilization program in Germany where between 1934 and 1945, 350,000 people were sterilized, and this program would prove to be a “stepping stone to the Holocaust.”2

In 2004, Denmark became one of the first countries in the world to offer all pregnant women prenatal screening for Down syndrome. Since then, 95 percent of women who test positive choose to terminate the pregnancy, and in 2019, only 18 babies were born with Down syndrome in Denmark.3 And of course, the abortion debate is center stage once again in this country following the leak of a Supreme Court draft opinion last week signaling the possible overturn of Roe v. Wade. The sanctity of every human life is not universally recognized at the end of life either. Physician-assisted suicide (which ironically, proponents prefer to be called “death with dignity”) is currently legal in 10 states as well as the District of Columbia.4

Admittedly, secular criticism of the biblical worldview is not entirely unfounded. Some pro-life advocates that garner media attention may speak the truth, but they fail to do so with love and humility and in some cases, I think their motives center more on a desire for power or political influence than a genuine concern for the sanctity of life. But in this paper, I will argue that we cannot let the lack of love and humility, or disingenuous motives on the part of some overshadow the truth, which is that a biblical worldview is essential for a healthy society, and the drift of society away from the biblical worldview will ultimately have devastating implications for everyone. I will first briefly examine personhood theory, and the related philosophy of materialism, emphasizing how these ideas fall short. Then I will zoom in and closely examine the biblical perspective regarding human dignity. I will conclude with an examination of the devastating implications of abandoning the biblical worldview.

Western Philosophy

In her book Love Thy Body, Nancy Pearcey explains that most ancient civilizations believed that reality was based on a “unified system of truth” with an overall unity between the natural order and the moral order.5 But modern Western thought gave rise to a split system of truth. American theologian Francis Schaeffer illustrates this split system with the analogy of a two-story building. The lower story consists of objective, empirically testable facts that everyone must accept regardless of their personal beliefs. The upper story consists of morality and theology which are considered subjective and relative. Therefore, the prevailing view for modern enlightenment philosophy was that reliable knowledge of reality could only be found in the lower story, that which could be empirically tested. Personhood theory is an outworking of this dualistic understanding of reality, and it is the theory often used to justify abortion. Personhood theory argues that human dignity requires “the ability to exercise conscious, deliberate control over our lives,” the equivalent of the upper story.6 Since it is thought that fetuses have not yet acquired this capacity, they are not considered a person, but merely a lower story biological organism.

Robert Wennberg’s even starker explanation of the actuality principle shows it is synonymous with personhood theory. According to the actuality principle, “only beings with a developed capacity for conscious self-reflective intelligence have a right to life.”7 Proponents of this theory argue that rights, by definition are a means for protecting interests. They are invoked by their possessor to “avoid sacrifice of those interests.”8 But anything that lacks a capacity for conscious self-reflective intelligence has no interests to protect, and therefore no rights. By this definition, a fetus, even a newborn infant is no different than a rock. The actuality principle also denies personhood to the irreversibly comatose and the severely retarded. Some animal rights activists even invoke personhood theory arguing that “not all people are persons, but some animals are persons.”9 In other words, some animal rights activists would prefer that medical experiments be done with fetuses, infants, severely retarded or irreversibly comatose people rather than dogs because dogs have a higher cognitive capacity than these people.

Animal rights activists are not wrong in their belief that we should treat animals with respect. Indeed, Proverbs 12:10 says that “a righteous man cares for the needs of his animals.” But the secular perspective is misguided in its reasoning. The biblical perspective is superior to the secular perspective in revealing that respect isn’t contingent on cognitive capacity. All living beings should be treated with respect because they were created by God and have intrinsic value. At the same time, as Kevin Vanhoozer points out, while all other creatures were created according to a generic pattern (after their kind), humans were made according to a divine pattern (in our likeness).10 So although God provides for the birds, Jesus affirms in Matthew 6:26 that humans are more valuable in God’s view than birds simply by virtue of being created according to a divine pattern. Furthermore, Jesus’s example of compassion for women, children, the sick, and people with disabilities, groups deemed inferior in Roman society clearly demonstrates that all people are valuable to God.

Admittedly, Scripture does not comment explicitly on whether fetuses are fully human, but there is enough evidence from Scripture to argue it is highly likely they are. For example, in Exodus 21:22-25, God says that if two men get into a fight and hit a pregnant woman causing her to give birth prematurely but there is no serious injury, the offender must only pay the husband a fine. But if there is serious injury, the community must “take life for life, eye for eye, tooth for tooth” (lex talionis). What is noteworthy about this passage is that it does not specify who must be harmed for lex talionis to be applied, leaving open the possibility that it would apply if either the woman or the premature baby were harmed. In the New Testament, Hebrews 7:10 states that “when Melchizedek met Abraham, Levi was still in the body of his ancestor.” This verse offers compelling evidence that the soul is not infused into a child after birth. The entire human nature (both body and soul) of the child is transmitted directly by the parents. While these verses do not conclusively prove that a fetus is fully human, I agree with Millard Erickson that given how severely Scripture condemns the destruction of human life, “prudence dictates that a conservative course be followed.”11

Another influential worldview in society that derives from personhood theory is the philosophy of materialism which grew out of Charles Darwin’s theory of evolution. The basic premise of materialism is that humans are nothing more than biological organisms motivated only by physical pain and pleasure. This philosophy relies on the same Western split system of truth to argue that since morality is not something that can be seen or empirically tested, it is an illusion, “window dressing to disguise what is really nothing but the human organism’s drive to avoid pain and enhance pleasure.”12 Even from a secular perspective, this view is problematic because even ardent materialists are logically forced to acknowledge the necessity of drawing a line beyond which a person is no longer a lower story biologically human organism, but an upper story person with rights. Without such a line, it would be justifiable to kill anyone. The problem is, apart from the Christian worldview, there is no objective criteria for determining personhood. Some bioethicist like Peter Singer argue that even toddlers are a “gray case” since their cognitive capacity is still quite limited.13

At the end of life, the materialist philosophy is used to justify assisted suicide. The logic of this argument rests on what Ulla Schmidt calls “the general appeal of consequentialism” which argues that an agent ought to have the freedom to choose the action that would yield “the maximum net positive result.”14 For a patient with a terminal illness facing severe pain with no hope of recovery (enhancing pleasure), the maximum net positive result for the patient might mean at least allowing the patient to end her suffering. Even from a secular perspective this theory is problematic because it depends on the ideal situation in which the patient is of sound mind, and is not being coerced by family or healthcare personnel, and documentation has proven that this is not always the reality.15 But even in an ideal situation, assisted suicide is problematic from the biblical perspective. In Genesis 9:6, God explicitly forbids murder because the fact that humans were created in the image of God makes all human life inviolable, so I believe it is safe to presume from this verse that the physician who assists a patient in ending her life would be complicit in committing murder, even if it is what the patient claims to want. In a systematic rejection of suicide, Augustine also argues that Genesis 9:6 forbids the killing of oneself because patience is a fundamental Christian virtue, and therefore the evil and suffering of this world must be patiently endured.16

Another problem with the materialism philosophy’s justification of assisted suicide to end suffering is that a 2014 study found that most people choose assisted suicide not because they are experiencing physical pain or even because they fear such pain in the future, but because they have indirectly absorbed personhood theory and don’t want to be a burden to others when they are no longer a “person” in the upper story sense of the word.17 This is an inconvenient truth for proponents of assisted suicide who portray the practice as a compassionate choice. But even if proponents acknowledged this inconvenient truth and framed assisted suicide as an act of compassion to spare the patient’s family the burden of caring for them, this argument would be a flagrant misuse of the word compassion because Scripture teaches that “true compassion means being willing to suffer on behalf of others, loving them enough to bear the burden of caring for them.”18

Materialism can also reduce human life to a cost-benefit analysis. While proponents of physician-assisted suicide claim there are safeguards against coercion, some cancer patients in states where this practice is legal have reported being pressured by their insurance provider to choose this option because medication to end life is a whole lot cheaper than cancer treatment.19 From a utilitarian perspective, euthanasia of cancer patients might promote the greatest good for the greatest number in terms of sparing the patient’s family enormous medical bills, and lowering healthcare costs for everyone. But the biblical perspective recognizes that “it is God who has called the individual into existence for his purposes and ends, and those purposes cannot be set aside in the name of the collective interests of society.”20

The Biblical Perspective

Kevin Vanhoozer acknowledges that the analysis of our material dimension by the natural sciences is not, in and of itself problematic. After all, Genesis 3:19 states that from dust we were created, and to dust we will return. But Kevin Vanhoozer considers the natural sciences to be “provisional versions of human reality that need to be deepened, or perhaps disciplined by explicitly Christian beliefs” because the natural sciences cannot adequately account for human behavior.21 While philosophical anthropology attempts to explain human behavior, it has difficulty reconciling the simultaneous optimism of human creativity and pessimism of humanity’s destructive potential.22 The proper understanding of human behavior, and by extension the concept of human dignity, can only be understood through the lens of theological anthropology.

The biblical perspective of human dignity centers on the theological statement that humanity was created in God’s image. Scripture does not offer much in the way of an explicit definition of what this means, but there is enough evidence from Scripture to affirm three crucial truths based on this statement. First, the name Adam refers not just to one man, but to humanity as a whole. John Kilner points out that this fact often goes unnoticed by Christians living in individualistic societies such as the United States.23 But the consequences of this oversight have been devastating, as it has led to a flawed understanding of the concepts of freedom and autonomy in these societies. While the secular concept of freedom centers on self-determination, the biblical perspective is what Ulla Schmidt describes as a “paradoxical freedom.”24 We are free in the sense that regardless of our circumstances in this world, this world is not our true home. But we are also bound in relationship to God and to one another, which implies that we are not free to end human life–even a life that is still inside a mother’s womb–or even to kill ourselves, thereby breaking this relationship. Second, the creation-cultural mandate of Genesis 1:28 is a consequence of being created in God’s image, but it is not the image itself. According to John Kilner, misunderstanding of this truth has led many to define the concept of being in God’s image as currently possessing attributes of God such as the capacity for reasoning.25 It should be obvious how this misinterpretation opens the door to acceptance of personhood theory, leading even supposed Christians to justify the exploitation or murder of fetuses, infants, or the irreversibly comatose on grounds that since these people lack attributes of God, they are not in God’s image. Finally, although sin has severely damaged people, it has not destroyed, damaged or even twisted the image itself because the true image of God is Christ. Paul states in Ephesians 4:24 that we are “created to be like God in true righteousness and holiness.” While John Kilner acknowledges the honest intentions of theologians who use the metaphorical language of God’s image being damaged to drive home the devastating consequences of human sin, he argues that this idea has robbed people of their dignity by implying a sense of hopelessness, causing people to abandon any sense of accountability to God for their actions. Christ is currently the only true image of God, but we are all called to become this image of righteousness and holiness, which in practical terms entails a re-framing of the concept of our dominion over creation. There is no human dignity in Western philosophies whose valuing of human life is based on subjective criteria, and whose idea of dominion is a “strategy for acquiring, increasing and securing power over others.”26 True human dignity is only achieved when we conform to Christ’s idea of dominion, a dominion of peace based on the objective premise that all human life has intrinsic value.

Conclusion

Some opponents of Christianity can respect a Christian’s personal conviction that practices like abortion and euthanasia are wrong, but resent having the Christian view imposed on them. On the surface, this is a fair argument. But the problem according to Nancy Pearcey is that “when society accepts the practice, it absorbs the worldview that justifies it.”27 Currently, abortion and prenatal screening for conditions like Down syndrome are framed as a choice. But if such practices become widely accepted, it may only be a matter of time before insurance companies and taxpayers resent the cost of medical care, special education services and accommodations for these children, and view parents who bring these children into the world as irresponsible. At worst, this could mean that genetic screening and abortion of children with Down syndrome (or any other disability for which a prenatal test is developed in the future) may no longer be optional. At the very least, it would result in a much more hostile world for all people with disabilities, with public accommodations and technological innovation becoming a lower priority, especially for “preventable” disabilities. Society could also come to view abortion as the best option for poor families, which would lead to disinvestment in social welfare services. If assisted suicide is widely accepted, the suffering for people who choose to live would also increase as innovation related to palliative care would also become a low priority. As already mentioned, the coercion of cancer patients in states where assisted suicide is legal proves that if assisted suicide becomes a widely accepted practice, it may only be a matter of time before euthanasia is no longer optional for people with conditions that incur high medical costs.

Perhaps these stark implications could be driven home for opponents of Christianity by co-opting the utilitarian philosophy. Sometimes, it is necessary to forfeit individual rights to promote the greatest good for the greatest number, especially since we are all–regardless of race,education or socio-economic status–potentially just one unexpected illness or horrific accident away from this discussion no longer being hypothetical. The Christian with righteous motives does not impose their views on others out of a selfish desire for power or political influence. We do so because individual choices eventually add up to a society’s worldview, and out of love for our neighbor, we wish to protect society from becoming a more technologically advanced, but no less brutal version of societies like ancient Rome whose pre-Christian worldview ultimately had devastating consequences for everyone.

In addition to the practical reasons for promoting the God-given dignity of all human life, even Laura Hercher, a genetic counselor at Sarah Lawrence College raised the rhetorical question, “if the world didn’t have people with special needs and these vulnerabilities, would we be missing a part of our humanity?”28 From a theological perspective, my answer is that we absolutely would. When Jesus and his disciples encounter the man blind from birth, Jesus said “this happened so that the work of God might be displayed in his life” (John 9:3). Personally, I believe this passage indicates that people with disabilities are a part of God’s plan and he has a purpose for them which could not be accomplished any other way. Even though I have a disability myself, I have become so accustomed to living with it that even I take my blessings for granted and can easily become self-absorbed. But when I visit my grandma in the nursing home who is confined to a wheelchair and can barely speak now due to Parkinsons disease, my capacity for compassion and empathy is renewed. Whenever I meet new people, I love witnessing their amazement when I show them how I read and write using braille. Perhaps God allowed a world with vulnerable people and people with disabilities to teach us how to be compassionate and open-minded to other ways of living, making the tapestry of humanity infinitely more beautiful.

Notes

  1. Lisa Ko, “Unwanted Sterilization and Eugenics Programs in the United States,” Independent Lens: Beyond the Films, January 29, 2016, https://www.pbs.org/independentlens/blog/unwanted-sterilization-and-eugenics-programs-in-the-United-states.html.
  2. Ko, “Unwanted.”
  3. Sarah Zhang, “Prenatal Testing and the Future of Down Syndrome,” The Atlantic, December 2020, https://www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928.
  4. “States Where Medical aid in Dying is Authorized,” Compassion and Choices, Accessed May 9, 2022, https://compassionandchoices.org/resources/states-where-medical-aid-in-dying-is-authorized.
  5. Nancy Pearcey, Love thy Body, (Grand Rapids: Baker Books, 2018), 12.
  6. Pearcey, Love thy Body, 86.
  7. Robert Wennberg, “The Right to Life: Three Theories,” Christian Scholar’s Review 13, no. 4 (1984): 317.
  8. Wennberg, ”The Right to Life,” 318.
  9. Pearcey, Love thy Body, 103.
  10. Kevin Vanhoozer, “Human Being, Individual and Social,” in The Cambridge Companion to Christian Doctrine, (Cambridge: Cambridge University Press, 1997), 163.
  11. Millard Erickson, Christian Theology, (Grand Rapids: Baker Books, 2013), 508.
  12. Pearcey, Love thy Body, 89.
  13. Pearcey, Love thy Body, 54.
  14. Ulla Schmidt, “Euthanasia, Autonomy and Beneficence,” Studia Theologica 56, no. 2 (2002), 316.
  15. Schmidt, “Euthanasia,” 137.
  16. Schmidt, “Euthanasia,” 315.
  17. Pearcey, Love thy Body, 90.
  18. Pearcey, Love thy Body, 91.
  19. Pearcey, Love thy Body, 91.
  20. Wennberg, “The Right to Life,” 317.
  21. Vanhoozer, “Human Being,” 160.
  22. Vanhoozer, “Human Being,” 162.
  23. John Kilner, Dignity and Destiny: Humanity in the Image of God, (Grand Rapids: Eerdmans Pub. Company, 2015), 196.
  24. Schmidt, “Euthanasia,” 142.
  25. Kilner, Dignity and Destiny, 22.
  26. Vanhoozer, “Human Being,” 162.
  27. Pearcey, Love thy Body, 93.
  28. Zhang, “Prenatal Testing.”

Bibliography

Erickson, Millard J.
Christian Theology. Third edition.
Grand Rapids: Baker Books, 2013.

Kaelber, Lutz. “Eugenics: Compulsory Sterilization in 50 American States
University of Vermont
Updated 2011
https://www.uvm.edu/~lkaelber/eugenics/

Kilner, John Frederic.
Dignity and Destiny: Humanity in the Image of God.
Grand Rapids, Michigan: Eerdmans Pub. Company, 2015.

Ko, Lisa. “Unwanted Sterilization and Eugenics Programs in the United States.”
Independent Lens: Beyond the Films.
January 29, 2016
https://www.pbs.org/independentlens/blog/unwanted-sterilization-and-eugenics-programs-in-the-united-states/

Pearcey, Nancy.
Love Thy Body: Answering Hard Questions About Life and Sexuality.
Grand Rapids, MI: Baker Books, 2018.

Schmidt, Ulla. “Euthanasia, Autonomy and Beneficence.”
Studia Theologica 56, no. 2 (2002): 132-51.

“States Where Medical aid in Dying is Authorized,” Compassion and Choices, accessed May 9, 2022, https://compassionandchoices.org/resources/states-or-territories-where-medical-aid-in-dying-is-authorized

Wennberg Robert N. “The Right to Life: Three Theories.”
Christian Scholar’s Review 13, no. 4 (1984): 315-32.

Vanhoozer, Kevin. “Human Being, Individual and Social.” In The Cambridge Companion to Christian Doctrine, 158–188. Cambridge: Cambridge University Press, 1997.

Zhang, Sarah. “Prenatal Testing and the Future of Down Syndrome.”
The Atlantic
December 2020
https://www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928/

On Human Dignity and the Sanctity of Life: Part 1

Well readers, I am a woman of my word, and given that the Fall semester of seminary school officially starts this week, and the abortion debate will probably dominate the news cycle until midterms, it is almost time that I share the research paper I wrote last semester on the biblical perspective on human dignity. As I mentioned, I earned an 84%, not the greatest grade but in retrospect I realize it was a fair grade as I got too emotionally invested in the paper and thus it was too narrowly focused on the sanctity of life when the concept of human dignity also involves a more broadly defined inclusion of groups both society and the church tend to marginalize such as the aged, or people who choose to remain single. I also share this paper with the caveat that because of its narrow focus, abortion as it relates to genetic screening for disabilities like Down Syndrome, my true views on the broader abortion debate are not as black-and-white as portrayed in this paper. Hence, the reason this post is in two parts. Since my paper is over 3,000 words, I am giving it a post of its own tomorrow. But before sharing my paper, I wanted to clarify my views on this issue because although I believe there is compelling biblical evidence that God regards the unborn as fully human, the extreme degree to which many fundamentalists have weaponized Scripture related to this subject, sadly but understandably explains why so few people in my generation, and the younger generations want to associate with Christianity, and I want to make sure readers understand that these are not my views. Furthermore, since Scripture does not explicitly address abortion, it is important that theologians approach this subject with humility.

Abortion is a very sensitive and complicated subject, so much so that when I was a junior in high school and a Social Studies class required us to research an issue and present our views on the issue, the teacher said abortion was the only topic that was off limits. (I chose the topic of capital punishment, an issue that I feared the teacher wouldn’t accept because it also has to do with sanctity of life. But he allowed it because it wasn’t abortion). So it is with a little trepidation that I am devoting a blog to this issue. (My paper will also address physician-assisted suicide.) But in these times, bravery–which I define as doing your best to speak truth and stand up for what is right regardless of political or social consequences–is becoming ever more essential, so I am going to be brave.

When I was a senior in high school, I heard some of my peers from an advanced literature class talking about The Handmaid’s Tale. Out of curiosity, I downloaded it from Bookshare, but at the time didn’t get very far because the plot moves very slowly and I just couldn’t stay engaged with it. But then a few years later, around the time Donald Trump was elected and society at-large was raving about it, I decided I ought to give it another try, and this time I could hardly put it down. I finished it shortly before the first season of the TV show was released on Hulu, and I engaged in much lively conversation with other female coworkers at the Social Security disability law firm where I worked at the time about how scary the show was when you considered that real life seemed to be getting perilously close to resembling Gilead. Around that time, Mom found a YouTube video–unfortunately I could not find it again–in which Laura Ingraham was asked by the host of the Fox show immediately following her whether she would consider running for President, and she responded that she would, accept for the fact that she believes women shouldn’t work outside the home! Of course, the hypocrisy of this statement was glaring, given that she hosted a TV show and made millions of dollars, making her a real life Serena Joy! What is even more astounding is that in an articlethe author, Margaret Atwood wrote for The Atlantic, she said she stopped writing the book several times, thinking that the plot was too far-fetched!

I do stand by my belief that the genetic testing industry should be regarded with a healthy degree of wariness because as my paper will explain, if society comes to accept abortion of embryos likely to be born with disabilities (high-tech eugenics) the implications would ultimately be devastating for everyone. But my paper overlooked three important truths. First, the presence of a genetic abnormality is not the reason behind most abortions. Second, people in privileged positions–men who will never experience pregnancy firsthand, as well as women whose wealth/whiteness insolates them–really have no business weighing in on all of the scenarios which for them are merely hypothetical. While I am qualified to advocate for children with disabilities, in retrospect, I realize I am not really even qualified to judge mothers who choose to abort a child likely to be born with a disability because I am in a position of privilege as a white woman born into a comfortably middle-class family who has never gone a day without excellent health insurance, and attended an affluent school district that was able and willing to provide all of the support I needed. One subject that was briefly discussed in the Shake the Dust interview with Dr. Amy Kennywhich I mentioned in a previous post, is the idea that mothers who choose to abort babies with genetic abnormalities are not necessarily cold-hearted proponents for eugenics. Systemic racism, generations of poverty and constant cuts or threats of cuts to welfare programs trigger the legitimate fear for expecting mothers from less privileged backgrounds that they will not be able to properly provide for a child with disabilities. Ideally, we should prioritize robust legislation that rectifies our history of systemic racism and strengthens social safety nets, which would assuage the fears of these mothers, but in the meantime, no one has the right to judge them for choosing abortion. But most importantly, all of the hypothetical scenarios bandied about by politicians are what my paralegal textbooks would call red herrings, rabbit trails the opposing party coaxes you down to distract you from the real issue at play. In The Color of Compromise which I read last semester, the primary focus is racism, but Jemar Tisby also briefly discusses the history of the abortion debate because it is actually relevant to systemic racism. When Roe v. Wade was ruled in 1973, Christians’ views on abortion were mixed, and the Southern Baptist convention, the largest Protestant denomination in the United States even passed a resolution stating that legislation should allow for abortion in cases of rape, incest, severe fetal deformity, and the physical, mental and emotional health of the mother. But when Christian fundamentalists were unsuccessful in their efforts to resist racial integration of schools, they needed a new issue to coalesce a voter base around to maintain their power and influence. The issue they ultimately decided to focus on was abortion. And while the pro-choice platform of Democrats seems kinder on the surface, the truth is that both sides now use the abortion issue to raise money and gain power and influence. Personally, I wish culture influencers would do more to promote responsible behavior BY BOTH PARTIES in a consenting relationship to avoid unwanted pregnancies rather than getting an abortion after the fact. At the same time, earthly governments have no business legislating morality.

I look forward to the day when the whole world lives under a righteous, Christian government, but given our fallen state, we cannot and should not establish such a government by our own power. In 18th century America, many feared that government disestablishment from religion would mean the end of religion and moral disaster. While I don’t have official statistics on how many Americans became religious nones immediately following disestablishment, there were no doubt some people who chose this path. There were definitely Deists, influenced by enlightenment philosophy such as Thomas Paine’s Age of Reason who respected Jesus’s teaching related to morality, but rejected the supernatural. But overall after disestablishment, Christianity actually flourished like never before as people could chose the denomination that most spoke to their hearts, and attending church was a choice. (All mainstream Christian denominations basically agree on essential doctrine. Their differences lie in how to interpret ordinances (for example, Infant baptism or believer baptism?) and worship style. The more I reflect on the overturning of Roe v. Wade and the extreme state laws this decision triggered, I cannot help but wonder if these laws are the modern manifestation of a desire of some to return to the status quo for most of our overall bleak human history when people in positions of power usurped God, denying the masses the chance to exercise the free will God intended. Under this system, a king could boast that his territory had been “Christianized” but no one’s heart was really in it. This is suggested in the introduction to a primary source from 17th-century Europe which I read for my Church History course, which cited regulations prohibitting walking around or gosiping during prayers, and one distinguished theologian was praised at his funeral for never having slept during church! Thomas Jefferson had many flaws–most notably his hypocrisy in championing freedom while owning slaves–but we should all be grateful for his wisdom in pointing out that “if an all-wise and all-powerful God chose not to coerce the bodies or minds of men and women” what gives us “fallible, uninspired men” the right to do so (Schmidt and Gaustad, Religious History of America Chapter 6)?

When fundamentalists of any religion seek to implement a theocratic government, the fact that all earthly governments are under the influence of Satan means that any righteous intentions that may have existed to begin with always and inevitably give way to hypocrisy, and a complete misrepresentation of the true tenets of the faith, as addiction to power takes precedence over genuine faith. Margaret Atwood illustrates these shortcomings of theocracy brilliantly in The Handmaid’s Tale, as well as its sequel, The Testaments. In The Handmaid’s Tale, June becomes aware of the hypocrisy of Gilead when after being forced to adhere to strict 17th-century purity standards, the commander Fred Waterford takes her to a former hotel converted into an underground brothel to satisfy the needs of high-status commanders and officers. In The Testaments, Aunt Vidala, the religion teacher at the “school” for girls in Gilead takes the story of the Levite and his concubine from Judges 19 and 20 completely out of context. But there are plenty of real-life examples, both historic and current, of hypocrisy and the cherry-picking of Scripture, from the conduct of Jerry Falwell Jr., to white pastors in 19th-century America who took Scripture out of context to justify chattel slavery. The abortion issue is just another example of hypocrisy, given that the same politicians who are vehemently pro-life as it relates to abortion resist any efforts to control who has access to guns, or strengthen social safety nets to protect children after they are born. It also bothers me that pro-life dialog around this topic seems to put all of the blame and shame of an unintended pregnancy on the shoulders of women when as far as I am aware, the virgin Mary is the only woman in human history who became pregnant without the involvement of a man.

Because of my medical history, I most likely will never be pregnant, which occasionally gives me twinges of sadness because I would love the opportunity to raise a child from infancy someday. So I must admit I could kind of empathize when I heard that some protestors stand outside abortion clinics with signs that say, “I will adopt your baby.” But I am now beginning to understand why women seeking abortions find such signs offensive. As my paper will explain, the Bible never explicitly addresses abortion, but there is compelling evidence to suggest that God cherishes the unborn, and that they may possess souls long before birth. But there is also much more direct evidence in Scripture that God values women as more than mere incubators. Carrying an unwanted pregnancy can be traumatic, even dangerous, especially for women of color, and the motives of people like me are actually quite selfish given that there are already thousands of older children, even teenagers in the foster care system who need loving forever homes.

All this is to say that as I have learned more about the abortion issue since the overturn of Roe v. Wade, my views on abortion have become more nuanced since I wrote my paper. Politicians whose Christianity and pro-life position is genuine would support positive legislation that indirectly encourages women to choose life, such as legislation that strengthens social safety nets and garantees universal access to health care, while having the humility to recognize that as politicians, they are not experts in all of the difficult real-world situations that lead to abortion, and therefore should not enact rigid laws banning it. Since science and medicine are aspects of God’s general revelation to all of humanity, doctors should have no fear providing medical care that technically involves abortion, and legislators should trust women and their doctors to privately decide what is in the best interest of all parties on a case-by-case basis rather than setting arbitrary limits on when abortion is permissible.

I am pro-life, and I believe that from the moment of conception, embryos should be respected as far more sacred than just a clump of cells. But I also believe that sincere Christianity should define pro-life in far broader terms than the abortion issue. Furthermore, Christians also need to have the humility to recognize that as compelling as passages like Luke 1:41 (when John the Baptist leaped in Elizabeth’s womb at the sound of Mary’s voice) are for us in-house, theologians disagree on how literally to interpret this, and other passages related to the unborn. So we must accept that this idea that life begins at conception is not a universal view imparted through general revelation on the consciences of all humanity, but a perspective gleaned from God’s special revelation in Scripture. As Christians, we can and should share the gospel on an individual level by praying to the Holy Spirit for guidance in gently, lovingly encouraging friends, family, coworkers who may reach out to us to choose life. Yet there is no ambiguity as to how to interpret verses where Jesus calls us to have compassion for the poor, the refugee seeking asylum, women, and these values have also been imparted on the conscience of the vast majority of humanity, as evidenced by the Universal Declaration of Human Rights which was drafted by people from diverse nationalities and religious backgrounds, and was passed in 1948 by the United Nations in response to the atrocities of World War II and the Holocaust. Legislation should focus on these universal human rights, many of which the United States has room for improvement in recognizing. But we should leave the judgment of women who seek abortion to God. Jesus, who was all-powerful and without sin, never coerced people to adhere to his teachings, but drew people to him through love, mercy, compassion. If the Christian faith and pro-life views of politicians and pro-life lobbyists were sincere, they would do the same.

What I Would Tell the Teenage Girl Who Wrote a Letter to President Bush

This past year, Mom deep-cleaned the basement, put in new flooring (by herself), donated/threw away things we no longer used and reorganized special items we wanted to keep. One day several months ago, shortly after this massive undertaking was complete, I had just finished walking on the treadmill one Tuesday evening when I grabbed my phone off the shelf where I set it to play music, and in so doing noticed a folder with braille sticking out of it. Curious, I carefully pulled out the folder to look inside, and discovered she had saved the letter I wrote on Wednesday November 3, 2004, the day after the 2004 election, to President George W. Bush.

I remember that day vividly. I was a freshman in high school, too young to vote, but I voted for John Kerry in a mock school election during lunch period on the eve of the real election. To my dismay, George W. Bush was declared the winner of the mock election. But my parents weren’t surprised at all. We were independent voters, but they told me our county is a very Republican-leaning county. Looking back on it, high school was an interesting time. My peers and I were taking more interest in current events, as we realized how rapidly adulthood was approaching, and were starting to form our own opinions, and yet we were still largely sheltered, our opinions heavily influenced by our family values. The bus ride to school on Election Day was interesting, as I witnessed a boy from a conservative family get into a somewhat heated argument with the bus driver, a Black woman. A couple days later, on the bus ride home, I voiced my disappointment with Republican opposition to stem-cell research to a boy in a wheelchair due to muscular dystrophy whom I had ridden the bus with since elementary school. We had a casual friendship. One monday morning in middle school, he told me that a big project for Social Studies was due that day when I thought we had another week to work on it. When he saw my panicked face, he laughed and said, “Just kidding!” I liked teasing him for his unfair advantage in gym class when he would cruise around the perimeter of the gym in his wheelchair while the rest of us had to walk the laps. (He had his own exercises appropriate to his situation later).

On the bus home a couple days after Election Day, I told him how my sister and her boyfriend (now husband), were pursuing science degrees at the University of Wisconsin-Madison and pointed out that this field of research could one day repair my optic nerve and restore my sight, but Republican opposition was slowing this research. He responded that stem-cell research might hold the cure to his muscular dystrophy too, but he would rather remain handicapped than benefit from research that killed embryos. I didn’t have a response to this compelling argument. This conversation, and the interesting tension between self-interest and ethics it raised came back to mind on June 24 when Roe v. Wade was overturned. I will talk more about this issue specifically in another post, but that conversation was my first awareness of the reality that these sensitive issues are not black-and-white, and to pass legislation at either extreme that does not recognize this reality is counter-productive. (It would be really interesting to know where these bus friends stand on these issues now that they have experienced the broader adult world.)

The winner of the real election had not been called as of 7:30 Wednesday morning when I left for school. But one of my friends who somehow had access to the news came up to me in the hall between second and third hour, and informed me, with an excited tone of voice that indicated she had voted for Bush in the mock election, that George W. Bush was declared the winner, and John Kerry had just conceded. I think I smiled and uttered a neutral, “That’s cool!” Good sportsmanship was heavily emphasized in my family, and our school, so it never occurred to me to question the integrity of the election, or that one day, an insurrection would be instigated by adults who could not accept the outcome of an election. But after talking to my friend, a burning inspiration welled up in me, a sense that I needed to get civically engaged. I was going to write a letter to the president voicing my concerns. I have heard of people doing this. I have even heard of children being invited to the State of the Union address and being recognized for their activism. Maybe I would be recognized for my activism too, not just any teenager, but a blind teenager writing a letter to the president! Maybe shaking hands with one of my senators would fast-track me to an internship program and I would one day be president of the United States. Yes, I had a really big ego! In fact, my ego was so big that the following Saturday, realizing that I would no longer own the BrailleNote that composed this letter once I graduated high school, and even before then the digital file could be lost, I spent the morning re-typing the letter on my Perkins Brailler so that it would be preserved for posterity. It clocked in at 1,431 words according to my BrailleNote, 3 print pages, 8.5 braille pages. 

I must have given my Math homework short-shrift that night because I remember typing feverishly on my letter that evening. I finished it during study hall the following afternoon, and printed it at school. The following day, Friday, there was no school, as we always had a long weekend at the end of each quarter to give teachers time for grading. This meant Mom could take me to the post office first thing in the morning, I realized as I got on the bus that afternoon!

Mom laughed a little uneasily about the pointed language in my letter–no veiled threats or anything like that, just a very snarky tone–but she was fully supportive of my activism. So that evening, she helped me re-type the letter on our desktop computer to correct some formatting issues and make minor edits, but the final letter ended up being pretty close to my original inspiration, and on Friday morning, it was signed and sealed and Mom promised we would drop it off at the post office on the way to a garden center with Grandma.

I forget the specifics of why the post office mailbox was blocked, but Mom said she couldn’t pull the car up to it as she usually does, and she thought it would be easier if I just give her the envelope and let her get out of the car and drop it in the mailbox. So I gave her the letter, but when two months passed with no response, despite knowing that Mom is a person of impeccable integrity whom I still trust to fill out my ballots on Election Days–and we have on a few occasions voted differently–I had to ask, “you really did drop it in the box, right?” In my teenage mind, it dawned on me that given the contentious political climate–though child’s play compared to the political climate today–her understandable motherly instinct to protect me from possible negative repercussions could have prompted an uncharacteristic one-time act of deception that would have been very easy to pull off given I am blind. She could have gotten out of the car, walked to the mailbox, maybe even stuck her hand in the mailbox without actually releasing the envelope from her grip, and walked back to the car.

Much later–I think it might have been March or April–I did receive a terse, generic form letter. No invitations to the State of the Union Address, no fast-tracking to an internship, but it still ended up being a valuable learning experience that still influences how I think about politics today.

My cynical attitude toward politics was cemented during my time studying with my Jehovah’s Witness friends. When they explained why they do not vote or run for political office, I remember challenging, “but if we had more people of good character in government, this world could be better?” They responded that there are good people in office, but they are ineffective because all earthly governments are influenced by Satan. When they went home, and I watched news coverage of Donald Trump’s meteoric rise in popularity despite a complete absence of morals, or Republicans so out-of-touch with average people, so beholden to lobbyists, and so addicted to power that they championed denial of health coverage to people with pre-existing conditions and refused to pass sensible gun control legislation even after hearing emotional testimony from grieving families, when Hillary Clinton, despite having character far superior to Trump, was nonetheless also beholden to large donors and wasn’t entirely transparent, especially when it was revealed she used a private e-mail server for government correspondences, it occurred to me, “oh my goodness! The Jehovah’s Witnesses are right!” But the seed of cynicism was planted with that letter back in 2004, my first realization that politicians really don’t care what the average teenager in middle-America thinks.

To be fair, like I said it wasn’t the greatest letter. I laughed hysterically when I found this letter. I cannot believe what a snarky teenager I was! To get a taste of my tone, here is the first paragraph: “My name is Allison Nastoff and I am fourteen years old. I am also blind. I am writing to you on behalf of me as well as my parents, siblings and friends to inform you that I am very disappointed that you were reelected. Let me tell you why since apparently, you haven’t been listening to the news or the pleas of half the American people.” The rest of the letter is pretty much parroting rhetoric from hyper-partisan sources like Michael Moore’s movie Fahrenheit 9/11, or arguments I overheard from friends and family. My ignorance of history was also on full display, as I unfairly attributed economic policies that encouraged the outsourcing of jobs, and opposition to abortion and stem-cell research to George W. Bush personally, not fully understanding the concept of party platforms, and unaware that the modern positions of the Republican Party actually originated with Ronald Reagan, and the Moral Majority Campaign of Christian fundamentalists that got him elected.

What is interesting about this letter though is that despite having a much better grasp of history, and eighteen additional years of life experience and exposure to people with different views, my positions on the issues I address remain largely unchanged. If I were writing this letter today, my reasoning would simply be more nuanced, and of course, I would write more conscientiously and seek constructive feedback to ensure my tone would be less off-putting. For example, when criticizing his opposition to same-sex marriage and abortion, I write, “I am definitely against gay marriage and abortion because marriage should be between a man and a woman, and having an abortion does take the life of an unborn child, but I strongly oppose outlawing abortion, and passing a constitutional amendment prohibiting gay marriage. This is because, as John Kerry said, you can’t legislate your religious beliefs.” I laughed at my teenage self for being so partisan that I appealed to John Kerry as if he were God. Today, if I chose to appeal to a person, I would choose someone more illustrious like Thomas Jefferson who stated in the Virginia Statute for Religious Freedom that, “Almighty God hath created the mind free.” But while we should not go as far as totally demonizing Thomas Jefferson, we should acknowledge the hypocrisy of this and other statements he made regarding liberty in light of the reality that he owned many slaves. Perhaps a more impactful argument would simply be to respectfully point out that while we are free to have our own personal convictions on these subjects, we really have no right to broadcast our opinions, much less legislate on them unless we have had firsthand experience with these circumstances.

One fundamental aspect of my letter has evolved significantly however. In my critique of the war in Iraq, in my critique of his opposition to stem-cell research, and in the conclusion of the letter, I give considerable attention to America’s stature in the world. Perhaps embracing the idea of American exceptionalism was understandable in 2004, just three years after 9/11. The way I remember it, although there was certainly division in 2004, there was also still a lingering sense of patriotism in those days. But as an adult, I have come to believe that the concept of American exceptionalism is problematic. Even if you don’t ascribe to Christianity, I would submit to you that American exceptionalism is harmful because it actually hinders our progress toward becoming more exceptional (a more perfect union). It’s like when I was in chamber choir in high school. Chamber choir was the highest-level choir in the school. Auditions were required to get in, and not everyone who auditioned was accepted. We all loved to sing, and knew what we had signed up for, more challenging music. But this choir met the last hour of the day, so we were tired from a long school day. I think we would have loved to just come to choir, sing our songs straight through, be told we were awesome, and go home refreshed from an hour of carefree singing and the stroking of our egos as the students privileged to be in the highest-level choir in the school. But that is not how Mrs. B operated. She did not care that it was the last hour of the day. She expected excellence from us, and there were many days when we couldn’t sing more than one note without her stopping to nitpick the tiniest improperly pronounced vowel, or tone that wasn’t locked. One day when she could sense that the class was exasperated by this, she stopped and explained that her nitpicking was out of love. We were excellent, but while the choir director who doesn’t have high expectations, doesn’t call out when students could do better may be the more fun teacher in the short-term, long-term, such teachers ultimately do their students a disservice. I believe the same metaphor is appropriate for our country. We do have a lot to be proud of as a country. No other civilization in human history has enjoyed the same degree of freedom, especially regarding speech and religion, as the United States. But we also have a lot to be ashamed of, especially our history of slavery, systemic racism, and the murder and oppression of indigenous people. Instead of reflexively accusing people like Nicole Hannah Jones (author of The 1619 Project) of hating America, we should recognize that people like her are comparable to Mrs. B. It is because they love this country that they challenge us to actually live up to the ideals espoused in our Constitution, which cannot happen until we are willing to take the extremely uncomfortable but necessary first step of exposing our ugly history to full sunlight.

But for those of us who are Christian, American exceptionalism is especially dangerous because we have a tendency to merge this exceptionalism with Christianity (Christian Nationalism) which is actually a form of idolatry that ultimately leads people to worship country before God. It should come as no surprise that this attitude leads to the implementation of policies that are anything but Christian, but which people justify using Scripture.

Thus if I were writing this letter today, I would radically reform the following problematic passage related to the war in Iraq: “But perhaps the most saddening aspect of this war in Iraq is our declining stature in the world. Before you took office, America was a super-power, a dream land which many immigrants saved all their earnings to immigrate to. Yet I have heard many predictions, even from optimistic adults predict that in four years, America will no longer be a super-power, or a dream place that people will immigrate to.” First, the most saddening aspect of this war was the death of thousands of American soldiers and Iraqi civilians in a war that could not even be justified as self-defense provoked by a direct attack. But today I would ask, what gives us the right to appoint ourselves policemen of the world, toppling regimes like Saddam Hussein (evil as he was) when we have our own cruel history? I would also completely abandon the concern over our country no longer being a super-power because now I realize, so what if we are no longer a super-power. All once-revered empires in history–Ancient Egypt, Assyria, Babylon, Rome–and in modern times Great Britain, eventually fell. Even God’s chosen people Israel were ultimately divided and scattered. The Bible says that kings are set up and deposed according to God’s sovereign will (Daniel 2:21), and numerous Bible verses make it clear that only Christ’s kingdom will endure forever. Some Bible scholars speculate that perhaps the United States is represented in the feet of the statue envisioned in King Nebachadnezar’s dream, made from a mix of iron and clay, an empire that is strong because of the iron, but also divided (Daniel 2:41). But there is far from universal agreement about this, and in any case, such speculation is counter-productive. What matters is that no great empire of human history has endured forever, and to think that the United States will end up being some kind of divinely ordained exception to this pattern is a form of idolatry.

As I mentioned back in June when I felt inspired to write about the gun violence epidemic, I had planned to read Jesus and John Wayne this summer, a book introduced to me in a discussion from my American Church History course. Unfortunately, I haven’t gotten very far, and realistically won’t have it finished by the time school starts again in a week and a half as it reads like a textbook so I have had difficulty staying focused on it. But in chapter 1, the author discusses how liberal Protestants and Fundamentalist Christians disagreed over whether the United States should get involved in World War I. While liberal Protestants saw the war as a war to end all wars, and an opportunity for the United States to extend Democracy and Christianity across the globe, fundamentalists questioned the very notion that the United States is or ever was a Christian nation. Unfortunately, it wouldn’t take long for the attitudes of fundamentalists to radically change, but I would have agreed with a quote from the November 1914 edition of The King’s Business, a monthly publication of the Bible Institute of Los Angeles. “A Christian nation” the editors argued, “is a nation which, as a nation has accepted Christ as its Savior and as its Lord in its commerce, in its politics, in its international relations and in all the departments of its life. Such a nation does not exist on Earth, and never has existed, and never will exist until our Lord comes again.” Thus if I were writing this letter to George W. Bush today, I would no longer embrace the attitude of American exceptionalism, and would respectfully urge President Bush to return to the true tenants of the Christian faith, to seek peace, not war, to implement policies that honor the human dignity of all, even at the cost of political power, wealth or our dominance on the world stage.

The political polarization today is such that during the Trump administration when I helped friends and family compose respectful letters to our representatives voicing our concerns, the letters were completely disregarded. I believe we are much safer as a nation under President Biden, a man whose integrity, character and competence is far superior to Donald Trump. But he is by no means perfect. I especially disagree with his decision to step back from his bold promises to invest in clean energy and issue new permits for oil drilling to lower gas prices, putting short-term economic interests ahead of the long-term existential threat of climate change. And Joe Biden is still part of a political system beholden to money and special interests such that I think even today if the teenage me said she wanted to write a letter to the president or her representatives, I would say, “Don’t waste your time.”

This past Tuesday, Wisconsin held its primary election, and one of the races on the ballot was the race for the Democratic candidate who would run against–and hopefully unseat–Ron Johnson, a horrific embodiment of Christian nationalism. One of the candidates that ran was Steven Olikara. It just so happens that I went to school with him from kindergarten through high school, but that had nothing to do with why I supported him. His campaign was radical, and a refreshing departure from traditional politics. He wanted to represent the “exhausted majority,” the vast majority of Americans who no longer trust that government can work for them. On Sunday July 17, a debate was televised statewide, and while the other candidates gave the traditional canned political responses to issues–assuring viewers of their pro-choice stance for example–Steven Olikara recognized the abortion debate had nothing to do with genuine concern for women or babies. It was an example of the political-industrial complex, an issue that both sides use to raise money and gain political power. He promised he would work to get money out of politics, even promising that he would not fundraise while Congress was in session. His website also advocated for term limits, and a citizen-legislature such that ordinary people could have access to politics, and thus the interests of ordinary people would be better represented. But ironically and unfortunately, because of his impeccable integrity, his refusal to participate in “the system” by accepting money from special interests, his campaign budget was only $500,000 compared with the multiple millions of the candidate the party establishment decided to coalesce behind, Mandella Barns. Many Wisconsinites likely were unaware of Steven Olikara because I only saw one very brief commercial last Sunday morning, and it frustrated me to hear that even many voters who were impressed by him decided to vote for other candidates, succumbing to concerns over “electability.” Thus to my astonishment, while Mandella Barns won with over 389,000 votes, Steven Olikara received only 5,611 votes statewide! At least I can proudly say I was one of them. This is not to say that Mandella Barns isn’t a good person. While he is wealthy now, as a black man raised by working-class parents, I am confident he understands and will represent ordinary people far better than Ron Johnson has. I also recognize that even if Steven Olikara won the primary race and the general election in November, his effectiveness would have been hindered by “the system.” The Bible is clear that no earthly mortal–not even Steven Olikara–can truly reform our fallen world. Thus, I would tell the teenage me that while Ronald Reagan’s racist rhetoric regarding welfare, and “law and order,” and his flawed belief in trickle-down economics have done immeasurable harm to this country, he did get one thing right. Government is not the solution to our problems. Government is the problem. As such, far more productive than running for political office or writing letters to your representatives will be your decision to study to become a chaplain.

Chapter 8: A Complicated Question

It is 2010, and I am standing in front of a classroom of thirty college students at Carroll University where I am a student myself. But I am not in this class. My classes are in the communication and english departments. This is a class for business majors studying diversity in the workplace, and I have been invited as a guest speaker. Presentations like this are second nature to me. I have been giving presentations like this since I was in second grade and was invited to speak to a third grade class. When you have such a rare disability, you are an ambassador whether you want to be or not, but I do genuinely enjoy giving these presentations.

    In front of me, the professor has graciously placed a big table where I set up as the class chats amongst themselves and gets situated. I have brought along my BrailleNote, the Perkins Brailler which I used for math, the one subject that is not as feasible on the BrailleNote where you can only see one line at a time, some braille promotion cards I bought from the National Federation of the Blind that have the alphabet in print and braille, a grocery bag with boxes of cereal, milk and utensils–later in the class, students will put on blindfolds and attempt to make themselves a bowl of cereal–and of course, Gilbert who lies snoring at my feet.

    I introduce myself and give a brief history of how I became blind, and how I adapted, at school and at home. Then for the next hour or so, I open up the floor for questions. Most of the time is spent on the garden variety questions like how I accomplish various tasks, whether I enjoy watching television. But without fail, the big question always comes, usually toward the end like a grand finale: “if advancements in science allowed you to see again one day, would you want to?”

    I am not offended by the question. It is a valid question I am sure I would have asked if our roles were reversed, and something I have wondered about when listening to people with other disabilities I cannot imagine living with, such as people confined to a wheelchair. The problem is, this question always leads to internal conflict for me. These presentations are not job interviews, but indirectly, they are. After graduation, many of these student will go on to careers in business, possibly conducting job interviews themselves. If they see that a candidate for a job is visually impaired, their interaction with me will almost certainly come back to mind, and with it, the attitude I conveyed toward living with blindness. There is an unwritten rule in the disability community that to wish for your disability to be healed is unseemly, a sign of low self-esteem. So the same advice experts give for job interviews applies. Be honest, but accentuate the positives. Project confidence. So I respond with a half-truth, that it would be neat to experience what it would be like to see for maybe ten minutes, like if there were goggles I could put on like the ones used for drunk driving simulations in high school. But really, being blind is normal for me as I was too young to remember when I had sight, so having sight restored someday isn’t something I think about a lot. But the full, unvarnished truth is way too complicated to sum up in a job interview or class presentation.

 

    It is a Sunday morning when I am five or six years old. I am standing with my family at Saint Dominic’s Catholic church listening to Father Kurt read from the Gospel of John. Like most children that age, I was fidgety and often tuned out the church service, just wanting to get home. But that day’s reading piqued my interest. It was the story of Jesus encountering a man blind from birth, begging by the side of the road. Jesus puts mud on the man’s eyes, telling him to go wash in the Pool of Siloam, at which point his sight would be restored. Mom must have sensed what my little mind was thinking as an excited smile spread on my face. Usually preferring that us kids hold our questions until we are in the car, Mom leans over to me on the spot and explains to me in a whisper how this story was actually a metaphor for spiritual blindness. Now that I am an adult, I believe her explanation was also a half-truth. Jesus absolutely does use this healing to expose the spiritual blindness, the hardness of heart exhibited by the Pharisees. But Jesus did literally restore sight to the blind. I respect Mom’s intentions. She didn’t want me to become disheartened toward Jesus, or develop bitterness toward my literal blindness when in my innocence, I prayed for Jesus to restore my sight and nothing happened.

    So in the years that followed, I rarely thought about whether I would wish to see one day, and when I did, it was more in terms of mere curiosity than a real longing to see. I think the word normal is such a funny word. It is defined as “conforming to an expected standard,” but everyone’s life is unique in some way. Normal means something different to everyone. My peers, who could see making them “normal” by society’s definition would be fascinated by how I could read and write braille. To me, braille is normal, but I would find myself fascinated by the tiny wrinkles made by the pens of my peers on the pages of their spiral notebooks. If we were sharing a desk for a group project or something, I sometimes couldn’t help reaching over and sliding my fingers along those lines of tiny wrinkles wondering how they can read and write a language that looks so complicated. Not understanding my fascination because print is normal for them, they would often move their notebook saying, “sorry my notebook was in your way.”

    Another mantra emphasized by the disability community is to not let the disability define you, and to an extent, I agree. No one with any kind of disability should let people tell them they cannot do something, cannot pursue a dream because of their disability. More than at any other time in history, technological innovations have opened so many doors for people with disabilities. But I have often wondered if in some ways, I would be a different person if I could see. I often think about how interesting it would be if I could clone myself, and then be a fly on the wall and watch her grow up, just to find out to what extent my personality is influenced by my blindness. Would she enjoy watching and participating in sports, or would she, like me find the cacophony of screaming fans, whistles and buzzers obnoxious, even if she could see what was going on with the game? Would she still find museums boring even if she could see what was behind the glass? Would she enjoy helping Mom select a paint color and be excited about how clean and cheery the newly painted room looks, or would she, like me, groan when Mom wanted to re-paint a room because all she would notice is the stinky paint fumes, and the annoyance of having to move about carefully for a few days so as not to accidentally touch the wet paint, or stub her toe or bang her shin on the furniture that had to be re-arranged for the project?

    When I was in middle school, a close friend who had to endure bullying confided in me that she loved having me for a friend because I didn’t cast judgment about her physical appearance. This warmed my heart, and most likely, I wouldn’t have said anything mean to her if I could see as kindness toward others was engrained in my siblings and me. But would my clone, whose personality would be identical to mine except for her ability to see, reveal that my heart wasn’t really as pure as my blindness allowed it to be?

    With no concept of physical appearance, I never rebelled, trusting my parents to choose respectable clothing for me, and accepting their guidance when they taught me how to comb my hair. But would my clone have chosen to rebel, wearing short skirts, dreadlocks, maybe even a nose piercing or tattoo?

    But all these questions really aren’t important in the grand scheme of life, just curiosities to daydream about. Blindness is normal for me, and I live a fulfilled life.

    In 2015 while taking a walk with my dad one summer evening, I met Eda, a neighbor who was one of Jehovah’s Witnesses, and out of genuine curiosity dating back to childhood when Jehovah’s Witnesses would knock on our door, I said yes when she asked if I would be interested in a weekly bible study. I didn’t become a Jehovah’s Witness, as much of their theology I disagreed with. But studying with them deepened my own faith in incredible ways, and one belief that both of our faiths share, although mainstream Christianity does not emphasize as much, is that Christ will return and all disabilities will be healed. Given my lifelong indoctrination with positive attitudes toward my disability, I was conflicted at first as to how I should feel when Eda talked so passionately about this. Part of me wanted to reprimand Eda for implying that my disability was a problem that would be cured one day, when I was living a happy fulfilled life. And yet, that excitement at the prospect of sight being restored from when I heard that story from the Gospel of John, returned, this time multiplied exponentially as it dawned on me this story was more than just a metaphor. In spite of myself, I found myself verbalizing to Eda and her friend Jane, daydreams of running with both hands swinging at my side, no longer needing to hold on to a white cane, guide dog or sighted person to guide me, daydreams of exciting solo excursions to wherever the spirit led me, again no longer needing the assistance of a sighted person. Was my self-esteem lower than I thought? What would other people with disabilities think if I confided in them the freedom I imagined experiencing if my disability could be healed?

    A few months later in a training meeting at the Social Security disability firm where I was a paralegal, an attorney was explaining that if there is strong medical evidence that a person’s disability could be cured, but the person chooses not to get the necessary treatment, they could be denied disability. On one level, this makes sense. But it also made me wonder, if a cure for my disability were discovered, would I have a choice whether to receive it? On the surface, of course it would be my choice. No one can handcuff me and drag me to the hospital for the stem cell infusion or chip implant that could restore my sight. I can empathize with the perspective that taxpayers should not have to pay welfare to someone whose disability could be cured. I am a bit of a prideful person who for several years didn’t even want to apply for disability since I am college educated and capable of working. Since there is no cure for my blindness right now, I was able to find an employer willing to accommodate me, assigning the visual aspects of the job to others. But business people are always talking about efficiency. Would any employer still accommodate me if I chose not to be cured? Thus, practically speaking, I may not have much choice. With my disability benefits cut off, and business no longer interested in making accommodations, choosing not to take the cure would mean choosing poverty. Recognizing this risk, I think I would still choose not to take the cure. I never rebelled when it came to dress and hairstyle, but I love the idea of rebelling when it matters. I want to live in a society where people are accepted as they are, where diversity is cherished. I have nothing against people who see things differently, especially those whose disability began later in life when it wouldn’t have formed a core part of their identity, shaped their personality. But I wouldn’t want to send a message to young people whose disabilities cannot yet be cured that, “for now you can hold your head high, enjoy the opportunity you have to be an ambassador, but if a cure is found, you are going to have to cave to the pressure of taxpayers and businesses, conform to society’s standard for normal in the name of financial security.”

    In addition to financial concerns, I hesitate to have my disability cured in this life because in regaining my sight, my life would lose some of its richness. Don’t get me wrong. Not every day of life as a blind person is sunny. In fact, life as a blind person can sometimes be a real pain in the ass. It took me hours longer to complete math homework than my peers, especially when the assignments involved graphs or geometric figures. When I flirted with the idea of law school in 2013, I couldn’t believe the hours of paperwork I had to fill out proving I was blind to get the LSAT in braille. Would a sighted person really request the LSAT in braille just for the heck of it? And despite growing up with parents and teachers who had me chanting “yes I can!” long before Barack Obama, it is hard not to have a crisis of confidence when you are looking for employment, and every company’s website has that canned statement that they don’t discriminate on the basis of disability, and yet all their job postings have at least one essential duty that is visual in nature, like taking photos, or overseeing layout and design.

   But I cherish the many wonderful moments my disability has brought about. These include hillarious misconceptions which sighted people take for granted, like how until middle school, I thought that airplanes flew by flapping their wings like birds, as well as commical moments of irony like the time I got a letter pre-approving me for an auto loan. Blind people do not have supersonic hearing, but the brains of people who are blind compensate by being more attuned to the other senses, so I have been known to hear or smell things that others miss. Being blind also has a few perks, like being able to read when it is pitch dark, and being able to have a guide dog who has been an unofficial therapy dog as well, keeping me smiling when life got tough. But most importantly, I have enjoyed the opportunities I have had to enlighten people by showing them there is more than one way to complete tasks like reading, writing and traveling.

In the story of the blind man from the gospel of John, the apostles ask Jesus if this man is blind due to sin by him or his parents, to which Jesus responds in John 9:3 that neither him nor his parents have sinned. His blindness happened so that God’s work could be displayed in his life. For this blind man, God’s work was displayed through healing him so that he could expose the spiritual blindness of the pharisees. For my life, I believe God has a purpose in me remaining blind to show what a rich, fulfilling life is possible even when you cannot meet society’s standard of normal, to be a friend to those that everyone else puts down because of physical appearance. And yet as it says in Ecclesiastes, to everything there is a season, so in those moments when being blind can be a real pain in the ass, I love to daydream of a day when I might be able to run with both arms swinging at my side.

Chapter 7: The Rivers of Faith and Life Come Together

The first seeds of awareness that seminary school might be in my future were planted every time we went to Elmbrook Church, where I would be on the edge of my seat, fully engaged with the academic nature of each sermon that brought the Bible to life, and then fertilized one Sunday in 2013 when the senior pastor at the time remarked that as a child, he was terrified of public speaking, and yet God called him to be a pastor, proving that with God, anything is possible. I even visited Trinity Evangelical Divinity School, the school I now attend which at that time had an extension site at Elmbrook Church. But after that visit, I determined I wasn’t ready to commit to seminary school at that time. For one thing, I wasn’t mature enough at the time to know what I wanted to study, or what kind of career God was calling me to. Even though the senior pastor’s testimony got me thinking about career possibilities I had never considered before, I still wasn’t feeling called to the demanding career of a pastor. In addition, I was embarrassed when as part of the visit, my mom and I had lunch with an admissions counselor. My family always said grace before dinner at home, but felt awkward praying in public, so at restaurants or school cafeterias, we would just dig right in. So I was embarrassed when I had already started eating, and the admissions counselor wanted to say grace. Maybe I wasn’t even “religious enough” to fit into the culture of seminary school at that present moment. So I decided to focus on gaining real-world work experience.

    During the years I worked at the Social Security disability law firm, I never explicitly talked about God with people outside family or Bible study. Most of my coworkers were not religious, and on the rare occasion when I saw opportunities to mention my faith, like when someone randomly confided to their fear of death on a slow day, I always chickened out, unable to find the right words. But my coworkers respected me for my compassion when handling clients, and one woman told me she admired how she never heard me use profanity. Sometimes people would even apologize to me when they used profanity, as if I were their pastor. But Mom told me that living by example is the best way to attract people to the Gospel, and she said her parents used to say, “if you have to tell someone you are Christian, maybe your faith isn’t authentic. It should be obvious just by the way you live.”

    By this point in the book, readers who don’t know me intimately likely have an inflated view of me, so I think it is time to quell that and confess here that while my example was respected at work, and while I want to live a life that counts for God, by no means is my behavior always becoming of a student in seminary school. Despite intellectually knowing that God has a purpose for everything, including my blindness, sometimes I find myself envious of the freedom and autonomy sighted people take for granted. More on that in the next chapter. Somewhat related to that, despite knowing how blessed I am to live with my parents, especially during this pandemic as I witnessed friends who live alone spiral into depression and anxiety, sometimes I find myself frustrated with God that I am not out in the world living the adult life, contributing to the world like my siblings. Because I don’t pray often enough about this, this frustration sometimes manifests itself in angry outbursts at my parents which I always regret after the fact.

    But while I didn’t talk about faith, and still don’t live out my faith as fully as I should, in recent years I have been filled with inspiration to write about it on my blog. In 2009, I started a blog to chronicle my experience training with Gilbert and navigating college life. In those days, I rarely mentioned my faith. Between June 2013 and February 2018, I did not write at all on my blog. In 2014 and 2015, I felt so devoid of purpose in my life that I couldn’t find the motivation to write, and in 2016 and 2017, I was too emotionally drained from my job to write. But looking back on when I felt inspired to resurrect the blog in 2018, I noticed that my writing had transformed. I felt compelled to share my faith in most of my posts, and on a couple occasions, I would be hit with waves of inspiration to write about faith as it relates to politics, current events or mental health in our society, waves which were so intense that I couldn’t sleep until these thoughts were written.

In 2019, I started feeling restless, longing for a job that was more intellectually stimulating, where I could better utilize the gifts God has given me, and I sensed God nudging me to revisit the idea of taking seminary courses. But since school work takes longer for me, I knew I would need to quit my job to do well, and it took a lot of sweat and tears to get the job I had. Life was humming along smoothly, and I just couldn’t bring myself to resign. But then the pandemic hit, and my family did not want me going to work given that I have underlying medical conditions. I had no idea when it would be safe to return. My manager said he could hold my position for as long as necessary, but after much prayer, I realized the pandemic was just the kick I needed to respond to God’s call. So on April 24, 2020, I officially resigned from the law firm, and now here I am, about to start my second year of seminary school. Like everyone, the forced isolation of this pandemic has driven me crazy to some extent, and occasionally, I find my mind racing down a rabbit hole of anxiety over whether resigning from the law firm was a smart move for my future financial security. But this isolation is different from 2012 because seminary courses have given my days structure and purpose, and even on days when I feel lonely or anxious, it only takes a little prayer to get me back on track. I think the isolation of 2012 prepared me well for this season by strengthening my patience and trust in God. So while this pandemic forced many people to cope with isolation and uncertainty for the first time in their lives, I recognize this pandemic as a season that will one day be a distant memory, a patch of choppy water in a river that will smooth out. As for the uncertainty, I don’t know what direction my life will take after completing my seminary education, but I trust that God has a plan.

Chapter 6: Coming to Faith

It is one of many Sunday mornings growing up. Most of the family is in the car, which is idling in the driveway. I say most because we were always waiting on one pokey sibling.

    BEEEP! Dad lays on the car horn.

    “Where is he?” Dad would mutter angrily.

    “I don’t know, but I’m tired of always being late,” Mom said with an exasperated sigh, “I almost don’t even want to go if we cannot get there on time.”

    That would have been fine with us kids. We almost always went to the 11:00 mass, also referred to as the drunkard’s mass because it was the latest mass offered. But even 11:00 seemed early when we were enjoying a leisurely breakfast–Mom often made her family-famous, fluffy waffles on Sunday morning–and we would have loved to stay in lazy mode. But alas, my parents felt it was their duty to raise us Catholic, and so they drove us to Saint Dominic’s church, figuratively kicking, and literally screaming at each other about whose fault it was that we were late again, or why someone had to take a cold shower because one sibling or another used up the hot water.

    Once we arrived at church, the atmosphere, from the aroma of incense to the organ playing calmed us down so that by the time we took our seats, no one would have known we had been fighting just minutes earlier. But my siblings and I loved it when sometimes, the usher would tell us there were no seats left in the main sanctuary and direct us to some pews in the hallway. Mass was piped out to the hallway so we could still participate, but since it was the hallway, my siblings and I felt less guilty about horsing around.

    During the week, my siblings went to Saint Dominic’s school, but because of my special needs, I had to go to public school. All of my siblings switched to public school for high school, but the closest sibling in age to me was my brother Brice who was four years older than me, so he graduated high school as I graduated eighth grade. As a child, this sometimes made me sad. I would see friends meet up with their siblings to ride home together on the bus, or say hi to a sibling in the hallway and I would wonder what it would be like to have a sibling in the same school, to be in the same world as them. As it was, I sometimes felt isolated. Saint Dominic’s let out an hour earlier than Burleigh Elementary, so my siblings were always home and well immersed in after school snacks and a television show by the time I got home, and occasionally, they would have off when I had school. I always felt especially left out at weekend sports tournaments or social events. There was a tight-knit group of parents talking about Saint Dominic’s life, while my older siblings and the other kids played together. And then there was me, not part of the club, and thus not sure how to fit in.

    While my siblings received their Catholic education in Religion class during their regular school day, public school students like me attended CFC (Catholic Formation Class) for an hour and a half one evening a week. Saint Dominic’s was not able to provide the workbooks for CFC in Braille, and family life was too hectic to deal with figuring out how to get them in Braille on our own, but I would listen along as other students were called on to read out loud from these books, and each year during elementary school, either my sister or another older kid would be appointed to assist me with visual activities, and to take me to the restroom as my medicine often wore off around CFC time. By middle school, I was able to just partner with another classmate for visual activities, and in middle school, CFC met on Sunday mornings when my medicine was more reliable.

    If you had known me as a child, you never would have guessed that one day, I would be taking seminary courses. I was the typical kid who found church tedious, from the Catholic rituals of standing and kneeling, to the sermons that when you are little, you actually believe could last forever, and you could become the age of Grandma sitting there in the pew, and the priest would still be droning. I remember one Sunday when I was six or seven years old, I was in a particularly bad mood and as we were walking out of church, I said nice and loud “I hate church!” Unbeknownst to me, right as I said that, the priest was walking by. My mom was a registered nurse and at the time worked at a rehab facility, which sometimes required her to work weekends. This was one of those weekends she had to work, and my sister couldn’t wait to rat me out to Mom when she got home that evening.

    To keep myself from going crazy when I was really young, I would sometimes pass the time by taking a hymn book from the pew rack in front of me and counting the pages. These books were made of those thin, onion skin pages that would stick together, so separating the pages kept my little fingers occupied even longer. My parents never took the book away or reprimanded me for this. I guess they figured hey, she’s being quiet. I think it served the same purpose for me as the fidget spinner for kids today. As I got older, I followed in the footsteps of my older siblings and just daydreamed. Occasionally, Dad would light-heartedly quiz us about the sermon, and our covers would be blown when we couldn’t think fast enough. But my parents generally didn’t make a big deal of our inattentiveness in church, especially since Mom would often catch Dad dozing off in church and have to elbow him to wake up. They took us to church out of a sense of duty, but they viewed the daily example of Christian values at home as more important than that one hour a week anyway.

    I wasn’t all that fond of CFC either. The workbooks were boring, and we had homework, which infuriated me because I thought I got enough homework during the regular school day. As another example of how irreverent I used to be, each week in CFC, someone was assigned to bring a treat to share halfway through class. Every teacher would have us say a brief prayer of thanks to God before we ate, which normally I didn’t mind. Our family said grace before dinner each night too, so I was used to that. But one year, we had a teacher who wanted us to recite the Nicene Creed before snack time. I remember finding this incredibly annoying because this is such a long prayer when you are eight or nine years old and hungry. But externally, I was a good girl so I kept my mouth shut. But one week, a mischievous boy in the class echoed my sentiments out loud, and I remember smiling at his audacity.

   Although I did not take church or CFC seriously as a child, looking back I realize that all along, God was working on my heart, nudging me toward a personal faith commitment. Starting in about third grade, Dad started going to Indiana once a month to help his parents with yard work. After selling their motel business in 1986, Grandma and Grandpa built a big house on a five-acre lot, not anticipating the difficulty maintaining this property as they aged. Sometimes my siblings also came along, but since they were teenagers by that point, Dad allowed them to stay home most of the time. But I loved these monthly trips. I loved the one-on-one time with Dad, driving through Chicago singing along to oldies on the radio as we drove down on Saturday mornings, and then listening to 60 Minutes on a news station as we drove home Sunday evenings. When we got there, Grandma doted on me, letting me eat whatever unhealthy treats I wanted for lunch, and taking me for rides around their property, with me sitting next to her on a motorized scooter. During this time, Grandma also taught me to pray the rosary, and praying the rosary together became a part of every monthly visit. 

    In one sense, I hated praying the rosary, especially the tedium of having to pray the Hail Mary fifty times. But I never protested when Grandma wanted to pray the rosary because I think on some level, I actually enjoyed it, as the repetition of these prayers quieted my mind, gave me a sense of peace which I now recognize as God’s presence. I also think something in my heart was stirred by witnessing my Grandma’s dedication to her faith, the sincerity with which she prayed even though I did not feel drawn to God yet myself.

    Then one Wednesday night during my freshman year of high school, I was sitting at the kitchen table working on homework, listening to Dateline which my parents were watching in the living room. That night, the show featured the authors of the Left Behind Series, and the longer I listened to their interview, I had this strange urge to get ahold of these books as soon as possible. So that Friday after school, Mom took me to the library where I checked out the first book of the series which was available on tape. Just a couple chapters into the book, I had decided I wanted my life to count for Christ, and my passion only grew over the following year as I obtained and listened to all the books in the series. Skeptics might say I was “scared straight” by these books, and maybe I was a little. But more than that, I think that until reading these books, I just never gave any thought to that line in the Nicene Creed which says, “He will come again in glory to judge the living and the dead, and his kingdom will have no end.” It wasn’t until reading these books that something clicked in my mind and I realized the story of Christianity wasn’t a story that ended long ago which we merely drew moral lessons from on Sunday mornings. Jesus was coming again. The story was still unfolding, and I was a part of it, and this was thrilling to me.

    I found myself taking mass much more seriously, and as a “baby Christian”, I had a couple thrilling situations where I said a prayer during a difficult circumstance, and I felt a “peace that passes understanding” and could hear God’s voice in my conscience guiding me through the situation. My favorite character in the Left Behind series was Buck Williams, a journalist who was “left behind” but repented, left his position at a prestigious newspaper, and started an underground publication exposing the truth about the anti-Christ. Although I didn’t mention this on my college application, nor on my application for a mentorship program my junior year of high school where I had the opportunity to intern with the Waukesha Freeman, a local newspaper, Buck Williams was largely behind my decision to study journalism. I enjoyed writing, had won a couple essay contests, and was told by family and teachers that I was a talented writer. Maybe I too could expose the truth, and in that way make my life count for God!

    My freshman year of high school also marked a wonderful turning point in accessible technology when I received my first BrailleNote, and the following year, I learned about, and subsequently subscribed to Bookshare.org, a website where people who are blind or dyslexic can download thousands of digital books to listen to or read in braille. My subscription to Bookshare meant that for the first time, I could download the Bible in braille and read it for myself. I could have ordered a braille Bible as a child, but given that it takes up six feet of shelf space, I would not have been able to bring it to CFC to look up Bible verses, and probably would never have cracked it open at home either given that I hadn’t made a personal faith decision. As an enthusiastic baby Christian, I had noble intentions of reading the entire Bible cover to cover. I remember telling my mom how the Bible feels like that movie you have seen bits and pieces of at different times, but you have never managed to sit down and see the whole movie so it never fully makes sense. After school, and even during free moments during school, I would open up my Bible, and in the first week or so of having my own Bible, had gotten through Genesis and Exodus. I have since learned that this noble intention is shared by many baby Christians, as is the reality of ultimately falling off the wagon as without guidance, the Bible quickly becomes overwhelming as it is comprised of several different genres, and is not actually arranged in perfect chronological order. But I still cherished just having it on my BrailleNote, and knew someday I would get back to it.

    Shortly after I started reading the Left Behind Series, Mom started reading it herself, and it inspired her to re-dedicate herself to faith as well. When I started middle school, she signed onto a weekend program where she worked twelve hour days at the hospital every Saturday and Sunday, and then could be off all week. This schedule worked wonderfully with school schedules, but it meant she was rarely able to go to church. But she and Mrs. Lillie heard about a dynamic Women’s Bible study program that met at Elmbrook Church, a large nondenominational church on Tuesday mornings. I couldn’t wait to get home from school on Tuesdays to hear all about Mom’s Bible study that morning, and in this way became more aware of the Protestant world. It seemed like there was a zeal for faith that was lacking in the Catholic tradition, and began to question Catholic practices like confessing sins to a priest rather than directly to Jesus, or reciting scripted prayers rather than just praying from the heart. It also bothered me that all too often during mass, I would hear a reading that I found confusing or challenging, and yearned for a sermon that addressed it. But instead the priest would go off on a tangent that had nothing to do with the readings. This was not unique to Saint Dominic’s. I noticed this when I occasionally visited other Catholic churches or watched Catholic masses on television. The age at which young people receive the sacrament of Confirmation and are subsequently recognized as full adult members of the church, is determined by each individual diocese. In the Milwaukee diocese where I grew up, the sacrament took place junior year of high school. As my junior year approached, I felt a little disingenuous going through with the final year of preparation for Confirmation, but while my parents said they would respect boundaries and allow us to make our own faith decisions as adults, they wanted us all to go through with Confirmation. I decided to take the sacrament seriously, framing it in my mind as a commitment to follow Christ, even if I eventually chose a Protestant church. I even asked Grandma to be my Confirmation sponsor. She was honored and delighted, but in retrospect, given how upset she was when I did eventually switch to a Protestant church, maybe I should have chosen someone else. But at that age, I didn’t fully appreciate how much it meant to Grandma that the family was not just Christian, but Catholic. We are still on speaking terms, and I know she loves me. Every time I see her, she gives me a big hug and says “God bless you sweetie.” But we no longer say the rosary together, and we have an unspoken agreement between us to just not talk about religion.

    On Sunday August 31, 2008, during the one week I lasted in the college dorm, an older student who had been showing me the ropes of college invited me to Elmbrook Church with her, and I jumped at the chance. I loved everything from the livelier modern music, to the unscripted prayers, and even the sermon. Although it was longer than the Catholic homily, it didn’t seem long because it was so inspiring. Instead of a random tangent, it was a teaching directly related to the Bible. I couldn’t wait to go back, but it was awhile before I was able to return. Although returning home was the best decision overall, I kicked myself internally every Sunday morning, wondering if I could have persevered and stuck things out in the dorm because moving back home meant I no longer had a ride to Elmbrook Church. Mom still worked weekends at that time, and Dad was not comfortable leaving the Catholic church. We didn’t know of anyone in our neighborhood who went to Elmbrook Church, and cab fare would have cost a fortune. So I resigned myself to the reality that for the time being, I would have to go to Saint Dominic’s if I wanted to go to church. In 2011, Mom got a new job that no longer required her to work weekends, so she was able to go to church again. For the sake of family unity, Mom was not comfortable completely leaving the Catholic church, but Mom and I would attend Elmbrook Church periodically, and every time we left feeling inspired and sensing God’s presence. After every visit to Elmbrook, the contrast between that experience, and the Catholic tradition became more pronounced to the point that shortly after college graduation when I expressed to my mom how I was seriously considering trying to live on my own again in an apartment closer to Elmbrook Church, Mom confided that she really wanted to switch to Elmbrook Church permanently herself. So in March 2013, we took the membership class and officially switched to Elmbrook Church.

    In 2012, I graduated from Carroll University with a Bachelors degree in Communication with a journalism emphasis. But during my college years, the economy, and the journalism landscape changed and I could not find a job. But that summer, I also suffered debilitating migraines and fatigue, and tests revealed I had a severe case of Celiac disease. Mom pointed out that perhaps it was by God’s grace that I hadn’t found a job because I would have had to miss a lot of work with all the migraines and doctor visits I had that summer, and I would have started out with a bad work reputation. During the thick of my illness, I agreed with her, but when my symptoms resolved with a strict gluten free diet and I still couldn’t find a job, the sense of isolation, having no job or school to give my life routine and a sense of purpose, drove me crazy. I think I prayed a few times, but when I didn’t get the instantaneous response from God I had as a “baby Christian” in high school, depression started to set in and I found myself questioning whether God really had a purpose for me. Was all my hard work all these years for nothing?

In the summer of 2013, the Wisconsin Department of Workforce Development helped me land an internship with Audio & Braille Literacy Enhancement, a local charity that provides braille and audio books and classroom materials to blind people in the community, and during this internship, I met a blind woman who suggested I look into paralegal courses because while she didn’t pursue a paralegal career, she took some classes, enjoyed them and said it seemed like an accessible field for blind people. After reading a paper I wrote my freshman year of college in which I argued that U.S. soldiers in Vietnam should have refused to carry out the Mi Lai massacre because conscience takes precedence over orders from a superior, my parents thought I would make a great lawyer. While my parents may have been right, I wasn’t passionate enough about law to commit to the expense and academic rigor of law school. But a paralegal certificate from the local technical college was a lot more financially reasonable, and could be completed in one year. Maybe I could still put some of my writing skills to use assisting a lawyer. So in 2014, I earned a paralegal certificate, and in April 2015, I was glowing with joy as I landed a job at the Social Security disability law firm where I would work until March 2020. But this joy was short-lived. A few months into the job, I realized the software the company used wasn’t as accessible as I thought it would be, and I often made mistakes that drew angry calls from clients, and even caused hardship for the attorneys on a few occasions. Again, I was gripped by intense depression and anxiety. Pride kept me from being fully honest with the manager about how much I was struggling, and while I applied and even interviewed for other jobs with no success, something kept me from quitting. Just when I felt like I had reached the end of my patience, a sermon or a conversation with a friend would give me encouragement to get through one more day. God rewarded my patience in December 2016 when my manager gave me a simpler position that was far more accessible, and in February 2017, the manager allowed me to switch to a part-time schedule.

Chapter 5: School Days

I am in first grade, and it is toward the beginning of the school year. The classroom consists of six short round tables, around which are four tiny plastic chairs. I sit in one of these chairs, and next to me in an adult chair sits Mrs. Zahn, the full-time teacher’s aid that helps me keep up with the class.

    “Hi Allison,” my friend Katie says as she takes her place at the table.

    “Hi Katie,” I say.

    “How does she know it’s me?” Katie asks Mrs. Zahn in amazement.

    “I don’t know. Ask her,” Mrs. Zahn says.

    So she asks me, and I say, “I can tell by the sound of your voice.”

    Later it is time to read a book. As the teacher passes out books to the other students, books which I reach for and stroke in amazement as they look like blank pages to me, Mrs. Zahn places my book in front of me. My version of the same book is on thick cardstock-type 8.5 by 11 pages of raised dots, spiral-bound with plastic binding.

    “How does she read that?” another classmate asks, fascinated.

    “I don’t know,” says Mrs. Zahn, “Ask her.”

    A few days later, Mrs. Becky comes to pull me out of class for Occupational therapy.

    “Use your cane,” she gently reminds me as she trails behind me as I make my way to her room. Sometimes, I would walk forgetting to swing my cane properly, resulting in me bumping into doors or tripping over boots left outside lockers.

    “It looks like a class of fifth graders is coming our way,” Mrs. Becky said a few minutes into our walk. “Let’s stop and let them pass.”

    Sure enough, I hear a cacophony of footsteps and whispered chatter of a class walking single-file behind their teacher on their way to lunch or a “special” class like art or music. As I was taught, I stop and tuck my cane in close to my body so as not to trip anyone, and wait the way a car waits for a train to pass. But instead of walking past quietly as I thought they would, the passing train of students calls out “Hi Allison!” “Hi Allison!” “Hi Allison!” one after the other. I cannot respond to each hi fast enough! When the class has passed, I ask Mrs. Becky in bewilderment, “How did they know who I was? They are not in my class!”

    “You’re famous,” she replied with a smile in her tone of voice, “everyone in this school knows about you because you are the first blind person to go to this school.” The following year, a reporter from our local newspaper followed me for the day and wrote an article about me.

 

    It is a Monday morning in October of my third grade year, and over the weekend, the teacher had graded our first Social Studies test which we had taken on Friday. The test covered basic geography concepts like the names of the seven continents and four oceans, the differences between a map and a globe. I got my test back at the same time as the rest of the class, but before handing them back, the teacher showed my grade to Mrs. Zahn, who affixed a little braille sticker in the upper right corner of my answer sheet with the grade on it so I could see it for myself. I had written my answers in Braille, and Mrs. Zahn transcribed them verbatim into print for the teacher. My grade on this first test was a C.

    Third grade was the first year of “real school” with letter grades, and this was the first major test of the year. When I saw that C, I didn’t think anything of it. I knew what the letter grades meant and although of course, an A would have been better, a C meant average. I was okay with being average. I had heard my parents yell at my older brothers when they occasionally brought home Ds, but they seemed okay with Cs. So I wasn’t expecting the reaction I got from Mrs. Reich when I saw her later that day. Her reaction resembled the plot of Ms. Nelson Is Missing, one of my favorite children’s books from the previous year.

    This perpetually cheerful teacher who rewarded me with M&Ms on Fridays based on how many braille pages I read, who took me on fun field trips to the mall or the grocery store, had suddenly become Ms. Viola Swamp. After an interrogation in which I admitted I had not studied for the test as I was supposed to, with the flimsy excuse that we were celebrating Mom’s birthday that night, and some relatives came to visit, she said, “I don’t care what you have going on at home in the evening, how much fun you are having. I don’t care if the whole house is full of company for a party. You are going to go upstairs and study. School is only going to get tougher in the years ahead, and if you don’t study, you are going to be in trouble.”

    It is Monday June 11, 2000, the second-to-last day of fifth grade. My work ethic hadn’t improved much since third grade. Just a couple months earlier, the class was reading Johnny Tremaine. Normally I loved to read, and have been known to stay up late into the night, well aware I would be tired the next day, but unable to put down a good book. But I found Johnny Tremaine excruciatingly long and boring, so one week, I just just couldn’t stand it anymore and stopped reading. That year, I had a new aid, Mrs. Hobson, as Mrs. Zahn was transferred to a younger student. She would be my aid from fifth grade all the way through first semester of my senior year of high school. The fifth grade teacher was a big fan of pop quizzes, and because Mrs. Hobson received things ahead of time to get them in braille for me, she knew there was going to be a quiz on the chapters I neglected to read. So in an act of mercy she told me she would never show again for as long as she was my aid, an act of mercy she reminded me of years later too, she pulled me out of class for a marathon catch-up session. Overall though, my grades were decent, and I had met all the requirements to graduate fifth grade. Tomorrow, there would be a small ceremony in the school gym, and then it was off to middle school. But on June 11, during a period of quiet work time to tie up the last academic loose ends, I heard the principal walk in and whisper something to the teacher, then come up to my desk. For a moment, my heart skipped a beat. Was I in trouble?

    “Hi Allison,” Mr. Zahn whispered, “I just wanted to tell you congratulations on your graduation tomorrow. I’m so proud of you.”

    “Thank you,” I said, a little caught off guard but grinning ear-to-ear.

    “You were an experiment, did you know that?” he asked. I don’t remember what I said, but I remember being puzzled by this statement.

    “You are the first blind person to ever attend this school district,” he explained. I had not known that. I knew I was the only blind student currently in the school, but at that age, I was too young to grasp the significance of the Americans with Disabilities Act, or the decision my parents and teachers had made on my behalf.

    It’s funny to think how when I was a kid, it seemed as though school would be my routine for eternity. Now that this chapter of my life is over, it feels as though it passed in a flash. But these snapshots stand out in my memory and illustrate my school experience well.

    I feel so blessed that I wasn’t sent to a boarding school for the blind, not only because I was spared the heartache of having to say goodbye to my family every week, but also because I cannot imagine that I would have felt as natural, at ease in a sighted world as I do today. In fact, I actually feel more at ease in the sighted world than with a gathering of blind people, and even forget what it means to be blind. As a funny example of what I mean, once when I was in high school, I was invited by a friend to a meeting of the Wisconsin Association of Blind Students at the state convention for the National Federation of the Blind. We needed to vote on something–I don’t even remember what it was now–so the student president said she was going to pass around a bag, and asked us to throw in a dime if we wanted to vote one way, and a nickel to vote the other way. When the bag got to me, I put in my coin, but when I held the bag out to the next person, he didn’t take it.

    My first thought was “hello! are you awake!” before remembering, “oh yeah, all these people are blind like me!” So I tapped the person on the shoulder and told him I was passing him the bag, shaking it so he could find it. But my interaction with sighted people is so natural. They see me and seamlessly put items right into my hand. They see me reaching for them and intuitively take the item from my hand. When I went to these events, I could understand the allure of going to a school for the blind when I casually chatted with other students about technology or braille without having to preface anything with explanation, or to not have to explain your disability and the accommodations you need to teachers unfamiliar with blindness. I know some very successful older blind adults who would have gone to the state school for the blind growing up, and they are very confident in the sighted world and have even mentored me on how I could advocate better for myself. This important skill must have been built into the curriculum, or else they did a great job figuring it out on their own. But I feel so blessed to have gotten the chance to advocate for myself at such an early age when Mrs. Zahn responded to the questions of my classmates with, “I don’t know. Ask her!” Whether or not my classmates remember these interactions today, I don’t know. But maybe by having me in class, they at least subconsciously benefitted, by seeing that blind people are no less intelligent than anyone else and can speak for themselves. I have heard blind adults lament that if a sighted person is with them, there is still a segment of the public that will direct questions to the sighted person, assuming this person is the blind person’s guardian. For me, having the opportunity to practice speaking for myself at a young age meant that as I got older and was progressively given more responsibility advocating for myself with teachers, I was confident and comfortable doing so, and by the time I started college and had to advocate for myself completely on my own, it felt as natural as breathing.

    Mrs. Zahn also emphasized the importance of precise language. In third grade, my best friend was Amber and we liked to hold hands and walk together to “special” classes. Sometimes, the teacher would want me to walk on my own to practice orientation and mobility, so Amber was asked to seek permission first. But the first time when she asked Mrs. Zahn “can I walk Allison to Music class?” Mrs. Zahn gently corrected her and asked that Amber say “can I walk WITH Allison?” I overheard this conversation and was puzzled about why Mrs. Zahn wanted Amber to phrase the question this way. She explained to me how she didn’t want my peers to view me like a pet. They didn’t need to walk me to class like a dog. I was perfectly capable of walking to class by myself, but they were welcome to walk with me as friends. As an adult, I find it disheartening when people mock the idea of political correctness. Words really do matter, and just a small, seemingly petty difference in wording can have profound implications for how a demographic is perceived and treated.

    Overall, I remember Burleigh Elementary School as a warm nurturing environment that emphasized kindness and inclusion, so much so that sometimes, I felt like a rockstar! It was not unusual, especially in the early grades to have whole classes say hi to me as they filed down the hallway. There was a small underbelly of bullies that I had to deal with at before-school daycare from third through fifth grade when my parents felt they shouldn’t impose on Mrs. Lillie to babysit me when they had to get to work early. When I would try to join in one of their games, I was pointedly ignored, and if I was playing with legos or something they wanted, they would just come up and snatch them away as if I weren’t even there. But when the school day actually started and I went to my regular class, it was as if I went to a whole different school. I never lacked peers clamoring to partner with me for an assignment, or friends to play with at recess or sit with for lunch. In first and second grade, I would try to sit off by myself because the cafeteria was so noisy it overwhelmed me and I didn’t want to talk. So to ensure I had a healthy social life, I was allowed to stay in the classroom for lunch with three peers. Everyone in the class wanted a turn to eat lunch with me. This began to change in middle school, a phenomenon which I had not anticipated. I had a group of girls I sat with for lunch, and there were many days in which I genuinely enjoyed meaningful conversation with them. But some days, I felt so out of place, even with these friends because I found typical junior high antics like screaming over a cute guy, stupid and annoying. To these girls’ credit though, they were extremely respectful in that when I would be startled by an especially piercing shriek, they would apologize to me and try not to act so ridiculous. They couldn’t fully resist acting like junior high girls, but I sensed in them a little more maturity, an awareness that they knew they were being obnoxious even if puberty made this behavior hard to resist. Maybe they admired and respected my ability to just smile and eat quietly, staying above it all. Most of these girls were also in choir with me, so I have happy memories with them in choir too.

    I feel fortunate in that I was never bullied outright in middle school or high school, but I often felt ignored. Gone were the sweet elementary school days when people clamored to partner with me for a project. In middle school, when the teacher would ask us to find a partner or divide ourselves into groups, it seemed even if I stood up from my desk and walked toward the throng of students with a hand raised like an awkward beggar, asking if anyone would partner with me, I heard only crickets. Sometimes I could get a group’s attention and get a lukewarm yes when I asked to join them, but sometimes the teacher would have to help me find a group. If I had to do a group project with two or more people, it felt like there was the rest of the group, a cohesive clique, and then me, just along for the ride like a third wheel. I appreciated the occasional teachers like my seventh grade science teacher who really made sure that the group was interacting with me and giving me a meaningful role in the building of our Rube Goldberg machine. I have met blind people who are very comfortable being loud and assertive, but that was never me. I think I did a great job of advocating for myself when it came to explaining my blindness and the adaptations I used, but I never quite figured out how I was supposed to assert myself in a group that I could tell wasn’t really interested in working with me.

    In the hall between classes, it was very rare for a student to say hi to me, and if none of my friends were in class with me, I just sat quietly at my desk while it seemed everyone else was chatting during the lag time before class started. In the awkward insecurity of middle school where image is everything, the old lady clothes I had to wear because of my back brace were certainly a hindrance to making a lot of friends, as well as possibly the white cane I swung in front of me, the cart I had to pull behind me to carry my supplies between classes, and the suitcase I had to take home each night because no traditional backpack was large enough for my braille textbooks and 3-inch binders bursting at the seams with my assignments. But these weren’t the only factors. In hindsight, I realize I was a bit of a weird kid.

    Mrs. Reich started worrying about my social life when I was only in third grade. I showed no interest in popular culture, hadn’t seen any of the movies or television shows children my age were talking about, but I still enjoyed playing house with baby dolls.

    “Just so you know, when you are twelve, if you invite a friend over and suggest playing with dolls, they will never come over again,” Mrs. Reich warned. I did lose interest in dolls on my own shortly thereafter. I enjoyed collecting American Girl dolls for a few more years, not so much to play with but to display and read the books that came with them, but by seventh grade, I had outgrown that too. But when I got to middle school, I still had no interest in popular culture, and after a visit to my grandma’s house in sixth grade, I fell in love with old country music from legends like Bob Wills and the Texas Playboys, Merl Haggard, Marty Robins and Johnny Cash. As someone who got so much joy from singing that I couldn’t get it out of my system in choir, I would sing these old country songs on the bus, and while pulling my cart through the hallways. I guess I figured as long as I look weird, I might as well fully embrace my true personality!

    Occasionally, I would have friends over to play braille board games, or card games with a deck of braille cards. It was difficult for me to have friends over because there were no kids my age in our neighborhood, so I would have to coordinate with my parents, the friends and their parents about when was convenient for everyone and who would pick them up and bring them home. But even if there were kids my own age in the neighborhood, since I found most of my peers annoying, and most of my peers probably saw me as the weird blind kid, I still doubt I would have had much interaction with peers after school.

    By sophomore year of high school, to my relief, some of my peers were starting to grow up and show a genuine interest in partnering with me, but other factors kept me relatively isolated. In middle school, each grade had the same lunch period, but in high school, lunch periods were not grade specific. There were three lunch periods available, and everyone’s lunch period could change each semester based on when it fit into their class schedule. It was very rare that I could find a friend with the same lunch period, and by high school when academic demands were more rigorous in preparation for college, my friends and I often had to cut lunch short to speak with a teacher about an assignment, or in my case, get math tutoring from Mrs. Hobson. After school, homework usually took so long I didn’t have time to socialize with friends. I pulled many all-nighters so I could be in the Milwaukee Children’s Choir which I would do all over again because it was good for my soul, and I had several close friends in this choir whom I socialized with during the break we always got halfway through rehearsal. But beyond that, I didn’t have the time or energy for anything else. So oftentimes, my only interaction with peers was small talk during partner or group assignments, and if there were no such assignments, I could go whole days feeling as though I lived inside a bubble, silently, robotically going from class to class, doing my own thing. Perhaps due to this lack of a social life growing up, I have a little social anxiety now, especially if friends from bible study invite me to their houses. On the other hand, since I am used to being isolated, I think I have fared better in quarantine than many of my peers. Everyone’s life has challenges in some form, and I suppose each circumstance has its advantages and disadvantages in the larger context of life.

    When I was in middle school, I remember feeling almost betrayed by students I thought were my friends in elementary school, but in retrospect, I hold no bitterness toward them. I have since read studies which show that a child’s personality takes shape at about age six, so although I have lost touch with most of them, I sincerely believe that if I met them at a reunion now, they would be the goodhearted people they showed themselves to be in Ms. Gnacinski’s class. But I also believe that while character is something innate that cannot be taught, it can be nurtured by adults through activities that encourage kindness and inclusion.

    In first grade, every student got the chance to be “star of the week.” When it was your turn, you brought in a poster to promote yourself. My mom helped me create a poster with pictures of me reading braille, using my cane, playing on the swing set in our yard. I made braille labels which Mom glued next to each picture. The “star of the week” also got a few classroom privileges, like the opportunity to call out groups when we needed to line up, and to sit on the comfy couch in the library corner during story time rather than on the floor. To practice writing letters, the rest of the class sent “fan mail” to the star of the week, letters complementing what they are good at and why they make a great friend. I remember figuring that when it was my turn, my classmates would write print letters that Mrs. Zahn or my mom would read to me. My classmates didn’t know braille after all. So I was amazed when I noticed that week that Mrs. Zahn was taking students aside one by one and helping them transcribe their letters into braille for me. It felt like Christmas morning when I received that bag of 23 letters from my classmates, all of which I could read for myself. Similar activities like this occurred all through elementary school.

    Incidentally, sophomore year of high school when it seemed like classmates were more receptive to partnering with me, everyone was required to take a speech class. In this class, we talked about communication in general and the many different means of communication. The teacher invited a guest speaker, the teacher for students who are deaf or hard of hearing who showed the class a little sign language. The teacher also asked me to give a presentation on braille, and it seemed like after this presentation, more classmates paid attention to me. But in middle school, the No Child Left Behind initiative had just been enacted, and all the teachers were freaking out. So much time was redirected toward making sure we met academic standards set by the state, even learning testing strategies, that there was no time for things like presentations on braille. Even if there had been, I am not saying it would have eliminated the teenage insecurity that resulted in my exclusion, but even when the seventh grade science teacher reminded my group to include me in the Rube Goldberg project, their acceptance of me seemed genuine. I think teenagers just get so caught up in their own world, their insecurity that they just need to be reminded to stop and take notice of people with disabilities. Education reform is a complex issue I don’t want to get into in this book, nor is it a career I am interested in, but I think society would benefit from education reform that incorporates into the curriculum age-appropriate activities for all grade levels that encourage acceptance and inclusion of people with disabilities.

    To the extent possible, I was held to the same academic standards as my peers. In elementary school, I attended the regular gym class with my peers, but also had on-on-one instruction with a gym teacher twice a week. Starting in middle school, it was determined that many of the gym requirements for the sighted students were inappropriate for me, so I had gym class with the Special Ed students. I think the only academic requirement I was exempted from was high school chemistry because it was very visual in nature, and I had no interest in any career that would involve Chemistry anyway. In exchange, I took Earth Science, also known as Rocks for Jocks. I was walking to this class one day when the wrestling coach with whom I was casually acquainted because he was friends with Mrs. Hobson, said hi and casually asked me what class I was headed to. When I told him I was headed to Earth Science, he said, “Ah! Rocks for Jocks!” This still makes me laugh, partly because I admire witty people, and partly because after looking up what a jock is on my BrailleNote’s dictionary, I realized it was such an accurate assessment of the class. I really felt out of place in this class because I was one of only a few other girls, and all the boys really were jocks. But it was an easy class where I remember getting my homework done relatively quickly, and for someone whose second least favorite subject is Science, that was all I cared about.

    Sometimes, I even felt like I was held to a higher standard than my peers. I remember envying my sighted peers sometimes, not because I wished I could see, but because when they didn’t do their homework, they only had to deal with lecturing by the classroom teacher and their parents. But because I had an education team, when I didn’t do my homework, I was lectured by the classroom teacher, my parents, my aid and Mrs. Reich. The lectures from Mrs. Reich were especially memorable because normally, she really is perpetually cheerful, and she still found ways to make lessons fun and rewarding as I got older. In middle school, she started teaching me basic cooking skills, and while some vision rehabilitation teachers follow a prescribed curriculum of foods blind students should learn to cook, Mrs. Reich was more laid-back and believed the same skills could be learned cooking foods the student likes. So I knew that if she felt the need to lecture me, I had really messed up.

    By high school, I was a serious student who was invited to Academic Honors Night every year. Academic Honors Night was an annual event rewarding students with a GPA of 3.5 or higher. This dedication was mostly due to genuine maturity, as I was becoming an adult who understood the importance of education for my future, a future that I realized was much closer at hand than it was in elementary school, and I had developed a passion for writing and politics that compensated for my hatred of Math. It also helped that by the time I got to high school, technology was available that made homework completion much less tedious. In addition to the BrailleNote which made writing papers and doing research so much easier, the horrible 4-track cassette player and a box of cassette tapes for each textbook, was replaced with one CD for each book, and a special CD player to play it. Each box of cassettes came with a braille reference sheet to look up which cassette, and which track on that cassette contained an assigned textbook chapter. The volunteer readers for these books announced every page and chapter heading, but once you found the right track, you had to fast-forward, stop every few seconds, listen for a little bit to hear what page you were on, then fast-forward more until you got to the right spot. I didn’t have the patience for this tedium, so unless I could talk someone into giving me a print book and convince my parents to just read the chapter to me, I often found the consequences of giving a flimsy excuse to the teacher for not doing the assignment more bearable than messing with the 4-track player. But the new CD player had a keypad where I could just enter the page number and boom, I was there!

    But if I am being honest, this dedication was also partly fueled by a conversation with Mrs. Reich in eighth grade when she worried about how I would handle the academic rigor of high school, and suggested the possibility that I could spread high school over five years, or because of my disability, I could legally stay in high school until I was 21. I don’t remember my exact response, but I remember the spirit of it was “Oh heck no!” Many nights at 1:00 in the morning when I was still creating a graph or trying to figure out a complex equation and I was so tempted to just go to bed and forget it, this veiled threat was enough to motivate me to persevere until the assignment was done, even correcting mistakes I had made on my homework the night before.

    A couple years ago, I had a chance to catch up with Mrs. Reich over lunch. She told me then that a lot of aids request that teachers only assign the blind student half the homework assigned to everyone else because some subjects, especially Math are more difficult to grasp as a blind person. But Mrs. Hobson believed that I should have the same homework as my peers. She wanted me to be well-prepared for the real world, which she believed could not happen if I had the expectation of only having to do half the work as my peers. Maybe it’s a good thing Mrs. Reich didn’t tell me this until I was well into adulthood because had I known this as a teenager, I might have been furious with Mrs. Hobson. Because homework took me so long, sometimes I feel like I didn’t fully get the chance to be a kid. For example, every time I listen to a political debate, I think about how neat it would have been to try out Debate Club, but when this opportunity was offered, I knew joining this club would be biting off more than I could chew. My only extra-curricular activities in high school were weekly piano lessons with a sweet nun who taught me by ear, although I was often too burnt out from homework to practice as much as I should have, and the Milwaukee Children’s Choir which rehearsed at a church downtown two hours one evening a week. Even with just these activities, I was often living on four hours of sleep at night. But if I had it to do all over, I definitely would not have exchanged choir for debate club, as singing was, and still is a true passion of mine, and the friendships, opportunities and joy this choir brought to my childhood could not have been matched by debate club. And as cliche as it may sound, with maturity I have come to agree with the sentiment that adversity builds character. If I went through school having plenty of time to pursue every childhood opportunity, but accustomed to having only half the homework as my peers, college might have been a much bigger culture shock than it was, and I may not have been as tenacious when challenges came my way in college, in my first job as a paralegal at a Social Security disability law firm, or in seminary school where I am currently pursuing a Masters certificate in Christian studies.

    At every school I attended, I was given a private room designated the Braille Room. At Burleigh Elementary, I was pulled out of class when my peers were practicing penmanship, and taken to this room to practice Braille. I was also sometimes taken to this room when the class was given time to work on assignments independently. The teacher often played music during this time, and classmates would talk which made it difficult for me to concentrate. I was also periodically pulled out of class during story time just after lunch. This was the only time I was ever sad about meeting with Mrs. Reich as I loved everything about story time, especially in Ms. Gnacinski’s class. Ms. Gnacinski was my teacher for first and second grade. She never chose a story I didn’t love, and just listening to her sweet, expressive reading voice made me smile. Instead of listening to her from our desks, we would sit in a circle on carpet squares in the corner of the classroom. After a long morning learning to read for ourselves, followed by the noisiness and craziness of lunch and recess, this cozy story time was just what I needed. When I expressed sadness about having to miss story time, Ms. Gnacinski tried tape recording the class story time for me to listen to at home which I tried to do a couple of times, but it just wasn’t the same.

    I attended half-day kindergarten in the afternoons, but every Monday, Mom would take me to school early for physical and occupational therapy. Once I started first grade, I was pulled from art class, another largely visual subject, for this therapy. I didn’t cry in therapy as I did in preschool, but I wasn’t fond of it. I especially hated the balance beam, and having to stand on one foot without holding onto anything. I actually don’t know how I managed to graduate physical therapy by the end of second grade because I still couldn’t stand on one foot if my life depended on it. Maybe Mrs. Judy just decided I was a lost cause. I received Occupational Therapy through fifth grade. In kindergarten, the focus was learning to use silverware. Mom would send me to school with a Tupperware container of macaroni and cheese, which Mrs. Becky would heat for me. I should not have graduated from that either, as I still don’t have patience for forks. During these lunches with Mrs. Becky, I would either manage to only catch one or two noodles when I tried to spear them blindly with my fork, or I would get too many noodles and spill them all down the front of me while bringing the fork up to my mouth. My well-meaning older siblings have tried various times over the years to make me practice, but the bossy way they went about it, and the way they nitpicked everything from my posture to the way I held the fork only made me feel more frustrated, discouraged and rebellious. Meals are supposed to be enjoyable, and I don’t understand why it is so taboo in the sighted world to get a little bit of assistance from the hands God gave us. As an adult, I developed Celiac Disease, which has turned out to be advantageous as I have a legitimate excuse to avoid eating at formal events, and on the rare occasion I do eat out with friends, I have found them to be true friends who accept me as I am, even saying if they lost their sight, they would need to use their hands too!

    In first and second grade, I remember the focus shifting to learning to dress myself. Mrs. Becky showed me how I could tell my shirt and pants were on the right way by making sure the tag was in back. Nowadays most clothing does not have tags, a well-intentioned remedy to the annoyance of being poked by tags, but a change which has made it a little more difficult to ensure I am not putting anything on backwards. Fortunately, most clothing has a tiny imprint I can feel where the tag used to be, and of course, if the shirts have anything tactile like a painted design, beads or glitter, it is pretty obvious that goes in front. Mrs. Becky also showed me how to work zippers, snaps and buttons, and how to tie my shoes.

    Then toward the end of second grade through fifth grade, the focus shifted to learning to type on a qwerty keyboard and use a computer equipped with screen-reading software. I caught on to typing pretty easily. In the very early days of learning this skill, there were braille letters on every key, but I didn’t need them for long. I don’t know if the engineers behind the creation of the keyboard were consciously thinking about accessibility for the blind, but nevertheless, the little bumps on the f and j really helped orient me. The only thing I hated about learning to type were the frequent trips to the computer lab to take typing tests with my class. The tests required entering long, complicated sentences that Mrs. Zahn would have to read to me, and then a software program would assess our speed and accuracy. On these tests, my typing speed was slow which concerned teachers at first. But Mrs. Becky quickly figured out that when I could type my own sentences, cutting out the awkwardness of trying to re-type sentences read to me, my speed improved dramatically. But while my typing ability on the Qwerty keyboard was acceptable, I much preferred typing on the braille keyboard where I amazed classmates and teachers over the years with how fast my fingers could fly. To sighted people, the braille code that is based entirely around just six keys seems complicated, and I can understand where they are coming from. But once you memorize the code, the braille keyboard is so much more efficient in my opinion than the qwerty keyboard. But I am so glad I learned to type on a qwerty keyboard, not only because it is a vital skill to have when using a braille keyboard isn’t possible, but also because by middle school when spelling was no longer an official subject, the qwerty keyboard provided a much-needed opportunity to practice spelling.

    My computer skills regressed again when I got to high school because I loved my BrailleNote so much that I came to despise the regular computer. I not only hated the computer because of the inefficiency of navigating through a zillion menus and toolbars and windows with tabs and arrows when the BrailleNote was so much more straight-forward, or having to listen to text read, and sometimes mis-pronounced, in a monotonous computer voice when on my BrailleNote, I could read silently using the braille display. I also hated the fact that because the laptop equipped with the Window-Eyes screen reader was a shared computer, the screen reader did not come on by default, so I had to go through a whole procedure to get the screen reader open. For a brief time in elementary school, we had Window-Eyes installed on the family computer. My family, understandably didn’t want this on all the time, but once they figured out how to turn it off, they couldn’t figure out how to get it back on again, and family life was very hectic during those years such that no one had the time or energy to figure that out. In middle school, assignments that required typing were rare enough that I could either get them done at school, or I would write the paper on my Perkins Brailler and dictate it to Mom or Dad who would type it.

    At school, getting Window-Eyes open involved a relatively simple procedure that Mrs. Hobson wrote out for me. After holding down the power button for couple seconds and waiting for some clicking and a chime to indicate the computer was ready to go, I think I had to tab three times, enter my username, tab again, enter my password, press enter, then tab ten times to find the screen reader, press enter and it would come on. The problem was that this procedure almost never worked for me, and when Mrs. Hobson would check in on me and I would tell her I couldn’t get it open, and she would see I was completely on the wrong screen, I think she assumed I just didn’t follow the directions, especially when, of course, the procedure would work perfectly for her. It was my intention to follow the directions exactly, but I could have mis-counted the tabs, or even mis-typed my username or password. But with no screen reader, I had no way of knowing where I went wrong. In preparation for college, I found out that most colleges use the JAWS screen reader, which was fine with me because given the frustration using the computer provoked, I kind of wanted a fresh start, and I never was really proficient with Window-Eyes anyway. So in August 2008, as soon as my guide dog training was complete, I scheduled some training sessions with JAWS through Vision Forward. I am a proficient computer user with JAWS now, but more importantly, now that I am an adult, I have my own computer set with the screen reader to come on instantly and no one is allowed to touch it!

    The BrailleNote could connect to the Internet, but back in those days, not every website was compatible with the BrailleNote. One Tuesday in December my senior year of high school, Mrs. Hobson gave me two days advance notice of an upcoming unit in Algebra 2 that would require a special calculator to multiply matrices. The other students had advanced hand-held calculators for this, and my BrailleNote had a built-in calculator, but it was not capable of this particular task.

    “I want you to think about how you could do this assignment,” she told me that Tuesday.

    By then, I had been working with her so long I knew exactly what she was getting at. There was a website with a calculator program I could use. I think I did a half-hearted Google search on my BrailleNote that evening, but when I clicked on the links to a couple sites and they didn’t work with my BrailleNote, I reported to Mrs. Hobson the next day that I couldn’t find any websites. With a sigh of disappointment at my lack of initiative, she gave me the name of a website she had found. I hadn’t found that particular site in my half-hearted search, so I held out hope all day that this website would work with my BrailleNote, but alas it did not, and my anxiety about dealing with the Laptop was so intense that, in an uncharacteristic reversion to my slacker childhood ways, I lied to the Math teacher the next morning and basically told him the assignment was inaccessible for me. By then, interaction with teachers was pretty much exclusively my responsibility, and this teacher was really kind and laid-back. But Mrs. Hobson found out, and needless to say, she was not pleased with me. She marched me down to the Braille room, walked me through the procedure of opening the computer again, and showed me the website, ending with, “This should have been done days ago.”

    It so happened that the following two days, Mrs. Hobson had an emergency to attend to. But she told me in no uncertain terms that I had Friday to practice using the computer, and by the end of the day Monday, I was expected to complete the Math assignment. I forget now if I had to ask a teacher or librarian for help, or if I managed to get Window-Eyes open myself by being extra cautious, and paying meticulous attention to every keystroke. But I got through that assignment without further incident, and all was forgiven.

    Then one Friday afternoon about a month later, I walked out of choir rehearsal, my last class of the day to find Mrs. Hobson and Mrs. Reich waiting for me. My stomach dropped as my mind raced. I hadn’t tried any more shenanigans like telling a teacher an assignment wasn’t accessible. What could I have done to be in so much trouble? Usually, I got myself to the bus after choir. Sometimes Mrs. Hobson would meet me to ask me a last minute question about an assignment or something. But I had never been greeted by both of them.

    “We’ve got a bombshell for you,” Mrs. Reich said, “Mrs. Hobson got offered another position, so she will no longer be your aid.” They determined that I was mature enough to advocate for myself on my own, and what better way to practice for college. At that point, Mrs. Hobson only adapted a few Math materials and tests in braille for me. The vast majority of my assignments were e-mailed to me ahead of time directly from the teachers, and I e-mailed completed assignments directly to them. Mrs. Reich would handle the few things that still needed to be brailled or transcribed into print for the Math teacher, but basically, I was now on my own.

    To even my own surprise, I was not anxious. I was excited. I tried to be professional and hide it. I think I said something like “Oh, wow congratulations.” But Mrs. Hobson laughed. She could always tell what I was really thinking, and she knew I was like the office employee who found out they would no longer have a boss.

    For the most part, I handled this new independence with maturity. Shortly after gaining this independence, there was a Spanish project where the teacher wanted us to write a paragraph in Spanish color coding different words to indicate which were adjectives, nouns, verbs etc. Since I couldn’t color code words with my technology, I spoke with the teacher, and we worked out an adaptation where I would put the nouns in bold, underline the verbs, italicize the adjectives. But when I sat down to do the assignment, senioritis got the better of me and the tedium of navigating to all these different fonts was more than I could take. So I wrote the paragraph with no special fonts and turned it in. Disappointed, my teacher returned it with a D.

    In one sense, you could say my wish to experience what it would be like to be treated like the sighted kids, to not be lectured by a whole education team when I messed up, was granted. But when I saw that grade, my maturity returned and I found no pleasure in it. In fact, I even told Mrs. Reich of my laziness and the bad grade that resulted even though I wouldn’t have had to. I don’t think I fully comprehended until then that all the years of being tough on me, holding me to high expectations, was not for their benefit but mine. It was then that I understood the love component of tough love. They knew that this world is rough, and if a blind person is going to thrive, she needs to have a strong work ethic and set high expectations for herself, and they knew they wouldn’t always be there to help me along. So they held me to high expectations, and called me out when they knew I was capable of doing better, in the hopes that when they said goodbye, I would be self-motivated and have high expectations of myself and live a fulfilling life. As an adult, I find myself thanking Mrs. Hobson and Mrs. Reich often for their tough love, especially when I am faced with challenging situations and find that I am able to resist the temptation to just give up.

    After that wake-up call, I shaped up, and proudly accepted my final certificate at Academic Honors night that spring.

On June 8, 2008, I graduated with the same senior class I would have been in without a disability. I knew Mrs. Hobson would be there, and I couldn’t wait to grant a wish she expressed at the start of senior year, to see me cross the stage to accept my diploma independently. Despite practicing the route with Mrs. Reich at a rehearsal three days earlier, I was embarrassed when my cane disrupted the dignified occasion by clanging loudly against a podium that hadn’t been there in rehearsal. I wasn’t quite sure how to get around it, but my embarrassment melted away when Mrs. Hobson, whom I could tell was crying, ran onto the stage, gave me a hug and guided me around the podium. I didn’t know what the uncharted waters of college had in store for me, but that day, I knew I was well prepared. After the ceremony, Mrs. Hobson came to the cookout at my house, where she presented me with a ceramic plaque. Carved on this plaque in giant print letters was a mantra she said to me often over the years. “NEVER NEVER NEVER GIVE UP.”

Chapter 4: A Tangent on Braille

Before I continue, perhaps you readers would appreciate a primer. I am so accustomed to being blind, and so familiar with braille and all of the technology I use that it is easy to forget how foreign and “amazing” it is to the general public. You have likely heard the name Louis Braille, an icon in the blind community. In second grade during one of my private braille lessons with Mrs. Reich, I remember reading a braille biography about Louis Braille, but he may not have been part of the mainstream school curriculum. Louis Braille was born in 1809, in a town near Paris, France. When he was three years old, he lost his sight in an accident while playing with tools in his father’s harness shop. But he excelled as an organist, and in 1819, received a scholarship to attend the National Institute for Blind Children in Paris. At this school, he took interest in  a tactile code created by French Army officer Charles Barbier called night writing, which allowed soldiers to communicate with one another in the dark. When Louis Braille was fifteen, he simplified the twelve-dot night writing code, cutting it in half to just six dots. The most basic unit of the braille code is referred to as a cell. A full braille cell is arranged in three rows, two columns. Going down the left-hand column are dots 1, 2 and 3, and down the right-hand column dots 4, 5 and 6. There are 63 possible combinations that can be made using these six dots to indicate letters, numbers, punctuation, and even some shorthand symbols for words called contractions. Over the centuries, the combinations have been modified to meet the linguistic needs of different countries, and modifications are continually being made as language and technology evolves. Louis Braille taught at the Institute starting in 1826. He also adapted the code for musical notation, published a treatise, and produced a three-volume history book in braille before his death from Tuberculosis in 1852.

    For most of my school years, there were two ways braille could be transcribed: grade 1 braille in which every word is spelled out, and grade 2 braille which has all kinds of symbols and abbreviations to allow for more efficient transcription, and to save paper, as braille cells require a lot more space than print characters. In every other subject, my aides wanted me to use grade 2 braille, but for spelling tests, they told me to use grade 1 braille. Normally, there was nothing wrong with using the braille symbol for “the”, but they also recognized the importance of ensuring I understood that “the” was spelled t-h-e.

    My parents bought our first computer in 1995 when I was in kindergarten. At that age, I didn’t understand how revolutionary personal computers were, but I remember how excited my teenage siblings were to join the modern age. They thought we were the last family on Earth to finally cave and get a computer. But even when I was in middle school, computers weren’t as ubiquitous in education as they are today. Maybe once a quarter, a teacher would require us to type the final draft of a paper, but for the most part, my peers still hand-wrote most assignments, and I still did most of my assignments on a Perkins Brailler. The Perkins Brailler is the blind equivalent to the pencil. It is a heavy, manual metal typewriter that you have to roll paper into. You have to press down hard on the keys to produce crisp, readable braille, so hard that when I was really young, I hated when it was time to write because it was physically exhausting. To address this, the school district bought me an electric, Mountbatten braillewriter, but it was prone to glitches, and because it was very expensive, it had to be kept at school, so I would have to do homework on the manual braillewriter, another reason I didn’t always do my homework those early years. There was also no way to fully erase mistakes on the manual braillewriter. If I made a small mistake, I could squash the dots as best I could with my fingernail, but if there was a large amount of text that I wanted to erase, I often found it easier just to start the page over. Despite these drawbacks, I still felt more at ease using the braille writer than the qwerty keyboard (the technical name for the standard computer keyboard) because six keys felt so much more natural to me. So in middle school when I did have to type something, I had gotten kind of slow, not only because I was out of practice with the qwerty keyboard itself, but also because I had to stop and think about how to spell some words, especially less commonly used words like knowledge, which is just the letter k in grade 2 braille.

    These days, my favorite way to type is computer braille on my BrailleNote, a special kind of tablet with a braille display, technology which first became available when I was in high school. My junior year of high school, I started taking Spanish, and I think because some of the grade 2 contractions for English are used to represent other symbols in Spanish, Spanish required me to get used to a slightly different braille code called computer braille. It required typing in grade 1 braille, and many of the key combinations that used to be grade 2 contractions were now used to indicate punctuation. I found this annoying at first, as if my wings had been clipped even on the braille keyboard, but I adjusted relatively quickly, and then as my writing for other subjects became more complex, it occurred to me there were advantages to using computer braille in these subjects as well. For instance, I had to write a paper about Al-qaeda for a current events class. I usually didn’t show my parents my schoolwork as by then I was a conscientious student who made the honor roll every semester and my parents trusted me. But my mom asked if she could read this particular paper because like me, she finds the study of current events interesting. She thought my paper was really well-written, which made me happy, but more importantly, she noticed what would have been a really embarrassing mistake. By using grade 2 braille, when I went to print the paper, Al-qaeda came out Also-qaeda as al is the grade 2 abbreviation for also! I thanked Mom profusely and was able to correct and reprint the paper by putting a letter sign (dots 5-6) in front of the al. But it occurred to me that it would be wise to switch to computer braille all the time so I wouldn’t have to worry about missing silly things like that which would detract from my writing and confuse the heck out of teachers unfamiliar with braille. Ironically nowadays, my fingers fly on the braille keyboard typing computer braille, and I have noticed I have gotten a little rusty when I need to type grade 2 braille every now and then!

    But as language and technology are constantly evolving, so is braille. In 2016, the Braille Authority of North America began the transition to a new code called Unified English Braille. I didn’t need to attend any training sessions in this new code: the basics of braille remain unchanged, and the modifications I quickly figured out as I started receiving my braille magazines in the new code. When I bought an updated BrailleNote a couple years ago, I was able to continue typing in computer braille, but the symbols that were different, most notably the parenthesis symbols, appear on the braille display in Unified English Braille. If I ever have to start typing in Unified English Braille, there will be a tiny learning curve, just as getting used to computer braille was, but nothing I cannot get used to.

    This code is actually more consistent with other english speaking countries. (While we were at it, I think we should have switched to the metric system of measurement as well, but that’s an argument for another book.) This code developed new dot combinations for symbols like bullet points which have become more commonly used, and created separate combinations to indicate whether a passage of text is underlined or italicized, rather than using the same combination to represent both which made reading a little confusing sometimes. According to an articlepublished by the Perkins Institute, there is room in the code for the addition of new symbols, making this a forward-thinking code that can evolve as language and technology continue to evolve in the future.

    Unified English Braille also removes some contractions, making it a little less complex. Experts hope that this change will improve the braille literacy rate for blind children today. I was shocked and sad to learn in 2009 that only 10 percent of blind children were being taught to read braille, a statistic which as far as I know, has not changed. School administrators overseeing tight budgets often don’t see the value of hiring braille instructors, especially for children with some vision who can read large print, and often even for children who are totally blind given the availability of screen reading software and audio books. I am not sure what the braille literacy rate was back in 1994-1995 when I would have started learning braille, but even then, if one of my siblings’ teachers is any indication, there were signs of trouble for the future of braille literacy.

    Because of my special needs, I had to attend public school, but my siblings attended a Catholic school through eighth grade. My mom can still recall the bewilderment she felt when in conversation with a teacher at this school, the teacher asked why I was learning braille given the availability of audio books. Before she could even think what to say, my mom recalls saying slowly, I imagine in a tone of astonishment that this wasn’t obvious to a teacher, “because, she, would be, illiterate.” I feel so blessed to grow up with parents and a district administration that never questioned the value of braille. I listened to a lot of audio books over my school years too, as some books were not available in braille, and especially by middle school, audio books were more practical as braille books require a lot of shelf space. But I cannot imagine a life where simple things like finding the right bathroom or elevator button are more difficult, especially if someone’s vision gets worse–as it often does–and the person can no longer read large print. I cannot imagine never knowing the pleasure of reading silently in bed or outside on a beautiful summer day.

    The National Federation of the Blind is a very rhetorically militant advocacy organization whom I disagree with on many things. But I agree with their position that every totally blind child, and in many cases even children with partial vision, especially those with progressive eye conditions should be taught braille.

    In 2009, this organization used the 200th anniversary of Louis Braille’s birth to highlight this literacy crisis by publishing a book of 200 letters written by blind people to President Obama urging him to address the crisis. Many were from people like me, blessed to have learned braille as children, but there were also numerous letters from people who were never taught braille. Many recounted childhoods filled with needless hardship, like suffering headaches from the eye strain of reading large print they really couldn’t see that well, and falling behind in their school work. Some learned braille in high school or college. Some never learned braille. But all said if they would have been taught braille as children, everything from finding employment and succeeding in a job, to just daily living would have been easier. So if you happen to be the parent of a child you found out is legally blind and you found my book, I urge you, make sure they learn braille.

    A common misperception about braille is that it is slow. For sighted adults who feel called to a career teaching visually impaired children, or adults who lose their sight, learning braille is understandably more difficult. Just as is the case with learning a foreign language, braille is easier to learn as a child when the brain is more plastic. Mrs. Reich told me she reads braille with her eyes because her brain is so wired to using vision, her fingers alone cannot distinguish braille dots. And because braille wasn’t second-nature for her as it would have been had she learned it as a child, she sometimes made typos in materials she brailled for me, typos which I delighted in pointing out as I became fluent in braille. Teachers who read braille with their eyes also find it especially difficult to read braille embossed on both sides of a page, and when she introduced me to double-sided books in second grade, I remember Mrs. Reich warning me that I might find reading these books a little more difficult at first. But I had no problem adjusting at all. To me–and I think I can speak for all blind people fluent in braille here–you can barely feel the dots on the opposite side of the page. In fact, they are so faint they aren’t even legible to me, whereas the dots on the side I am reading are crisp and very easy to read. But Mom could no longer help me with homework when I started reading double-sided braille, and Mrs. Reich said this is difficult for her as well because sighted people can clearly see the dots on the opposite side of the page, so much so that they are confusing and distracting. But with practice, children and adults can improve their reading speed, and children can become fluent in the language of braille.

    One accommodation I did receive in school was extra time for tests. This was especially necessary for math tests, as it takes longer to make meaning of a tactile graph or figure than it does for a sighted student to look at it, and for reading comprehension tests because referring back to a passage and skimming it for the answer takes longer in braille. But for everyday reading and writing, I could use braille just as efficiently as my peers used print. Hard-copy braille books are expensive to produce but Seedlings Braille Books for Children, and the National Braille Press, the most well-known producers of braille books for children, have programs for parents or teachers to get free braille books. They do take up a lot of shelf space, but there has been incredible innovation in recent years, with BrailleNotes, and even stand-alone braille displays that can connect to an iPhone or computer. This technology is currently very expensive, with a stand-alone braille display costing around $1,000, and a full BrailleNote costing over $5,000. Dirty/sticky fingers can also damage the braille display, so your school district may understandably want to opt for hard-copy books until the child is mature enough to treat this technology with care. But as an adult, I only have a couple prized hard-copy books. With my BrailleNote, I can download books and read them in braille just like sighted people who download books to a phone or tablet.

As is the case with most children learning to read, I was slow at first, but this wasn’t a braille problem. I was just a child who needed to practice, just like my sighted peers. I think in the early years learning braille–kindergarten through second grade–I would see Mrs. Reich for an hour a day three days a week for intensive braille practice. The rest of the time, I slowly sounded out words right alongside my peers in class, Ms. Gnacinski calling on me to read just as often as any other student. By the end of second grade, I was reading so confidently that I found pleasure in reading. When my siblings and I were growing up, my parents were strict about bedtime when it came to putting away video games, turning off the television, but we could stay up as late as we wanted reading. I took full advantage of this, especially since I didn’t even need the light on to read.

Chapter 3: A Rogue Wave Just Before Kindergarten

While I was playing and learning at the Center, conscious only of the present moment, my parents and teachers were thinking about my future. My parents had a big decision to make, one that would effect the course of my entire life. Where would I attend elementary school?

    My older siblings attended a Catholic school, but going to school with them was out of the question as that school, and private schools in general, simply don’t have the resources to accommodate children with disabilities. Just a generation or two earlier, it would have simply been a given that I would attend the state school for the blind in Janesville. Children who live too far away to come home every night board there during the week, take a bus (or plane if they live really far up north) home on Friday evening and come back to school Monday morning.

    When I was first made aware that some children still do this, it broke my heart. I remembered being homesick just going to camp for a week. I couldn’t imagine having to say goodbye to my family for the week every week, and on the bus ride back, thinking of all the family memories that were probably made during the week that I wasn’t a part of. I couldn’t imagine enduring the loneliness of going back to a dorm room after a long day, rather than walking into a friendly home, getting a hug from Mom and telling her about my day. But Mom told me I never would have had to endure that homesickness because if it turned out the state school was the best option for my education, the family would have packed up and moved to Janesville so I could come home every night. But after a visit to this school, everyone, especially my siblings, knew there were better options.

    My mom loves to tell the story of that day. My older siblings must have had the day off from school because they all rode along on the visit. As the whole family toured the school, Mom and Dad didn’t like the atmosphere at all. It was basically a stereotypical, cold institutional setting with none of the warmth and genuine compassion of the Center. Meanwhile, Mom noticed the staff talking up the school to my siblings like expert salesmen, parading their best and brightest students in front of them and trying to convince them what a wonderful place it would be for me. The entire time, Mom noticed that all three of my siblings were impeccably courteous and polite to these people, and were even smiling. It was so convincing that Mom remembered thinking, “I really hope they don’t beg me to send her here.”

    But the moment we were all back in the car, and the doors were closed, my siblings let loose. “You cannot send her there! Please Mom, promise you won’t send her there!”

    When I heard this story for the first time, I almost cried. Like all sibling relationships, my relationship with my siblings had its share of rivalry and petty fights. Let’s just say they didn’t give me special treatment because I was blind, and I was no angel either. But this story made me realize that when you get right down to it, they love me and have my back. I hope I would respond the same way if one of my siblings ever needed an advocate.

    I do not remember this first visit to the state school at all, but five years later, I would get the opportunity to visit this school when they hosted the Braille Olympics. Blind students from all over the state were invited. I went to this event every year for three years, and overall, I had a blast. The event started on a Thursday morning and ended the following afternoon. I was an excellent braille reader so I dominated in the activities and always went home with medals. In the evening, there was a pizza party, games, a dance and time to swim in their pool. But as much fun as I had, I was always glad to get home. Even at that young age, I could tell this school was the kind of place that was fine for a short trip, but which would not be a pleasant place to actually live.

    The brick walls, hard linoleum floors and many huge echoing hallways radiated loneliness, and since the trend toward keeping students in their own districts took hold in my generation, the vast majority of students there were severely disabled. Among their handicaps was vision impairment, but it was obvious by the way many of them behaved that their vision impairment was a secondary concern.

    The one and only thing I would have loved about living at the state school was the library. I had a chance to visit it one year, and it was floor to ceiling bookshelves like you would see in a typical library, except all those books were in braille! I know this is cliche, but I really did feel like a kid in a candy store. At Burleigh Elementary School, there was one designated shelf in the school library for braille books, and in middle school, there were no braille books at all. Middle school had books on tape which I listened to, but there is nothing quite as magical as the old-fashioned pleasure of holding a real book and enjoying it silently in braille. But as wonderful as access to so many braille books might have been, it wouldn’t have been worth the loneliness or the lack of peers I could relate to.

    Another option for my elementary school was a school about half an hour from home that had a resource room. It was a mainstream school so I would have had some classes with sighted peers, but there was also a resource room specifically for blind students. Many of the children that graduated the Center at the same time I did ended up going to this school, and when I was in third grade, my vision teacher would take me to this school for lunch once a week to socialize with these students. This school wasn’t in the district where we lived, but there was a special bus that would have picked me up and brought me home every day. It would have been a long bus ride though, and for that reason, my parents hoped there was a better option.

    It turned out there was. With the passage of the Americans with Disabilities Act in August 1990–again, what perfect timing–came an increasing trend toward keeping students with disabilities in their home districts and mainstreaming their education as much as possible. It was a trend Mr. Zahn, the principal of Burleigh Elementary School fully embraced. He said the school had never had a blind student before, but he was open to the challenge.

    Many of the children at the Center had autism or other cognitive disabilities in addition to blindness, but my parents, and the staff at the Center–including Mrs. Reich who would transition to my school district and be my vision rehabilitation teacher from kindergarten through high school–could tell that blindness was the only disability that would effect my education. Therefore, with just a few accommodations, I could succeed in a mainstream classroom learning alongside sighted peers, go to college, and live a full, normal life. But before entering kindergarten, all children with special needs are evaluated by a school psychologist to determine their academic readiness, and to the shock of my team at the Center, the psychologist determined that I was nowhere near ready for kindergarten. But looking at the results, one of the teachers at the center realized that I had not been given a fair evaluation, and tipped my parents off right away. The teacher said she could fight for me at meetings, but parents really have more power. So Mom contacted the school psychologist, who, sure enough, told her that the test did not correct for visual impairment. On one hand, I can empathize with this psychologist who had likely never encountered a totally blind child because it is a low-incidence disability, and it would only have been four years or so since the passage of the Americans with Disabilities Act that began the trend of integrating blind children into mainstream classrooms. But rather than consulting with my teachers at the Center about how the evaluation could be modified, or at the very least, administering the visual components of the test as is but not counting the results, she administered the test as is, and counted the results against me! One component of the test for example had four pictures, three of which went together and one that did not relate to the others, such as an umbrella, raincoat, rain boots and an apple. The child was asked to point to the picture that did not belong.  

    I don’t remember taking this evaluation, but Mom says I was a very cooperative kid, so she imagines I just pointed to something at random on the blank-to-me page of pictures put in front of me.

   “Couldn’t you have told her what the pictures were and asked her to name the object that did not fit with the others?” Mom asked. 

    “No, that would have skewed the test,” the psychologist said.

    “Well, what about handing her a real umbrella, raincoat, rain boots and apple?” Mom asked.

    “No, that too would have skewed the test,” the psychologist replied, “it is a standardized test and to be fair to all children, we have to administer it the same way.”

    Mom didn’t have a good feeling about this psychologist, but she also knew of parents who lived in denial, unable to accept the severity of their child’s disability, and she didn’t want to be that kind of parent. So she consulted my other teachers at the Center, who were all just as surprised as she was.

    “She’s definitely ready for kindergarten. In fact, she is beyond pre-braille and starting to learn braille,” Janet said.

   If this psychologist would have had her way, I would have been placed into a class for children who were cognitively impaired. Given that children with disabilities are assigned a team of experts to monitor their education, I think eventually, someone would have noticed that a mistake was made, but just as with my delayed medical care because of the dishonest neurologist, the start of a proper education for me may have been delayed. But Mom stepped in to ensure that didn’t happen, demanding that this psychologist be removed from my team. She was taken off my team, and for the next eight years, we didn’t hear a word from her. Eventually, she was nothing but a distant bad memory for my parents. A fair evaluation that accurately reflected my abilities was administered, and I began kindergarten at the same age I would have if I weren’t blind. 

    For the next nine years, I did well overall. I was a typical kid who got in trouble because I didn’t always do my homework. I especially hated Math homework, a hatred that lasted through college statistics. My brain just didn’t get Math, or I would master a concept at school with the teacher holding my hand, but when I got home, I completely forgot how to do the problems. As early as third grade, I remember my teachers wanting me to use the abacus to solve complex multiplication and division problems, the equivalent to my peers who were learning to borrow and carry numbers using pencil and paper. But I would quickly lose patience with the abacus and just punch the equations into my talking calculator.

    Midway through the first quarter of seventh grade when midterm report cards came out, report cards we were supposed to take home for parents to sign, but which I admitted upon interrogation by my classroom aid and Mrs. Reich that I didn’t take home because I was failing Math so miserably, my teachers determined I needed to be in a slower-paced Math class. In this slower Math class, my grades improved dramatically. By eighth grade, I was maturing, physically in that I was developing a mature soprano singing voice that prompted one boy who passed me singing in the hallway to say, “see you on American Idol”, and intellectually in that I was discovering a passion for writing and national politics. 

    But in February of eighth grade, it was time to update my Individualized Education Plan (IEP) again as I was about to transition to high school. One Friday morning following choir rehearsal third period, I arrived back at the resource room the school set aside for me and all my braille equipment for study hall time as I did every day, when waiting for me outside the door was a person I didn’t recognize. She introduced herself and explained to me that she was a school psychologist and that as part of my education plan, an evaluation needed to be done. She handed me a fat business envelope she said contained important information my parents needed to review and sign. I politely thanked her, took the envelope, put it in my backpack and promised I would get it signed and returned right away.

    That afternoon when I walked into the house from the school bus, Mom and my sister who happened to be home from college for the weekend to recover from surgery to remove wisdom teeth, were all shook up. It turned out this psychologist had also called and left a voice message, actually two messages, in which she stammered and didn’t make sense. My parents suspect that she was so clearly nervous while leaving these messages because she remembered who I was, and maybe realized what a terrible mistake she had made. That evening, all the memories came back to Mom, and I learned the story of this ridiculous evaluation. Mom went ahead and signed the papers and let this psychologist administer the evaluation because at that point, she no longer would have had the power to jeopardize my education. I was comfortable with it too because I was old enough to know how to speak up for myself if she asked me to do something impossible.

    On the day of the evaluation, I was polite and did not mention that I knew this backstory. But I will confess that perhaps my heart was a little smug, as I remember going to extra effort to dazzle her with my brilliance, using bigger words, and trying to come off sounding more sophisticated than I might have otherwise.

The closest the psychologist came to acknowledging the mistake she made was gushing to my parents at the IEP meeting about how well I had done. I hold no bitterness toward this psychologist, especially now that I have been in the workforce, working as a paralegal at a Social Security disability firm for almost five years. Despite having a disability myself, that job humbled me, revealing how much I don’t know about other disabilities, and how out-of-touch I must have come off to clients from disadvantaged backgrounds. We all make mistakes, and we all have moments when we let our pride get in the way of common sense. I share this story not to malign the psychologist, but as a reminder, to myself as much as anyone, of the importance of humility, of asking for help when faced with an unfamiliar situation, and most importantly, of admitting when you made a mistake.

Chapter 2: Rough Waters From the Start

“I know you’re an adult now and I shouldn’t drag you to things anymore, but I’m dragging you to this. I think it’s important,” Mom said.

    It was October 2011 and I was complaining because I had just found out that Mom, Grandma and I would be going to a grand opening event for Vision Forward. This organization, formerly known as the Badger Association for the Blind, is a nonprofit that primarily provided services like technology training, Orientation and Mobility training, and social opportunities to blind adults. The name change to Vision Forward was only part of the organization’s restructuring. The other part was a decision to merge with the Center for Blind and Visually Impaired Children, so that the blind and visually impaired in the community could come to one organization for all the services they would need their whole lives. The facility that this organization was headquartered in underwent major renovation to accommodate this consolidation and it was this grand opening to showcase these renovations that Mom wanted me to attend.

    Don’t get me wrong. I was extremely grateful for all of the services I received from both the Badger Association and the Center for Blind and Visually Impaired Children. But I had been to grand openings before and figured this celebration would just entail having to listen to big donors and executive directors giving boring speeches, and I was a busy college student who didn’t have time for such things.

    On that day, there were some boring speeches, but all was forgotten when we entered the newly added wing that would house the children’s services.

    “There’s Erica!” Mom exclaimed as we entered the room.

    “Hi Erica, do you remember who we are?” Mom said. Erica, the social worker for the Center for Blind and Visually Impaired Children, is also blind.

    Erica remembered us as if she had worked with me only yesterday, and wrapped me and my mom in a hug.

    “You’re all grown up,” she exclaimed referring to me, “you’re in college now, right?”

    I told her I was and she was genuinely thrilled to see I had done so well since I was that little kid in her program. And then she proceeded to give us a walk down memory lane.

    Mom showed me a little cubby for babies to lay in that had objects like plates, spoons and string that would dangle above them to foster sensory experiences. Mom said I laid in that very cubby, and Erica said it is still used today.

    She introduced me to Carmen and Janet, two other teachers I had who were still there, and they too hugged me and were thrilled to see who their little girl had become.

    “And look at this,” Erica said. It was a beautiful piece of wood with holes carved into it to represent a braille cell. Papaw (my maternal grandfather) made it for the Center when I went there, and it is still used to introduce children to braille today.

    “What was I like when I went here?” I asked Erica. It was so long ago my memories were random fragments, mostly of field trips to a ranch to go horseback riding, or fun sensory experiences like playing in a tub of rice or water. I really had no memory of how I acted and what I did on a day-to-day basis.

    “Oh you were precocious,” Erica said, “you were almost always happy, and sometimes goofy.” For example, she proceeded to tell me how I once stomped my feet really loud and fast to imitate someone running and then announced to everyone “Shhh! Someone’s coming!” Upon hearing this story, I laughed so hard tears were streaming from my eyes. It was then that I realized why Mom dragged me to this event, and I was really glad she did. My preschool days were so long ago for me, and the memories so vague. She knew that some of the staff who taught me were still there today, and she wanted me to see them, not only to make their day, but I think also to show me how much of a blessing these people, and this program were on my life. These people, this program helped my parents navigate my vessel when the prospect of raising a blind child was a little overwhelming, and when I was too young to even realize I was different. These people, this program built a foundation of happy, even if fragmented memories, and gave me a great start on the journey to the successful college student I had become.

 

    I came into the world a healthy baby who, for the first six months of life, I am told, was able to look right at the camera when pictures were taken. But when I was around six months old, my parents started noticing that I was using my left hand a lot more than my right when playing or reaching for things. When Mom mentioned it to the pediatrician, he merely said, “Huh, that’s interesting.” Since he wasn’t concerned, Mom wasn’t either at first, concluding that perhaps I would just be a lefty. She also noticed I would cry when she drove over big bumps, which she thought was unusual, but at the time, it didn’t seem to warrant calling the doctor. But the turning point came the weekend of Halloween 1990 when I cried because my right arm got stuck under me while trying to roll over. That’s when my parents knew something was wrong. Ironically, this inability to roll over was noticed during a weekend trip to Indiana to visit my paternal grandma and grandpa, and to attend a fundraiser Grandpa organized for a little boy suffering a brain tumor. So first thing Monday morning when we got home from the trip, she called the pediatrician who immediately referred me to a neurologist.

    In hindsight, my parents discovered that this neurologist wasn’t the most honest doctor. They first suspected this when he came to visit me at Children’s Hospital because he was “curious to see how I was doing”, and then billed our insurance company for the visit despite the fact that upon being referred to Children’s Hospital, I was technically no longer his patient!

    But originally, they didn’t know anything about this doctor, and so went along when after an office examination, he ordered an MRI to be done at a particular diagnostic center which he told my parents had better equipment than Children’s Hospital. Unfortunately, the center couldn’t get me in for a week, which was an agonizing wait for my family. But when the MRI revealed a mass on my brain, I was immediately referred to Children’s Hospital, where it turned out the scan done by the Diagnostic Center was insufficient, and therefore had to be repeated. The mass was later determined to be a Pilocytic Astrocytoma, a rare brain tumor which originated from the hypothalamus and was crushing my optic nerve. In hindsight my mom told me, she wishes she would have brought me to Children’s Hospital right away. Sometimes, it still makes Mom sad to think that my treatment could have started a week earlier had she not waited to get into the diagnostic center. But doctors were pretty sure this week would not have made a difference in the outcome.

    It is difficult to tell whether an infant can see or not, but thinking back on it, Mom remembered that long before the paralysis surfaced, I would stare intensely at people. At the time, she thought it was an adoring stare, but when she told an opthalmologist about it later, he indicated this staring could have been the first sign that I was having difficulty seeing people, and thus, the first sign of the brain tumor. During the week waiting to get into the diagnostic center, no new symptoms emerged. This indicates to me that the tumor was a slow-growing tumor.

    This first neurologist was our one and only negative experience with doctors. All the other doctors that would treat me were outstanding. Upon review of my new MRI at Children’s Hospital, I was referred in to the skilled, compassionate hands of Dr. Dunn, a neurosurgeon.

    Even when I was officially considered cured, I would visit Dr. Dunn every year for follow-up until my seventh grade year when he retired. I actually looked forward to visiting this doctor all year. While most of the zillion doctors I had to see due to the complications of my tumor were in the sterile, stale atmosphere of the busy Children’s Hospital, Dr. Dunn’s office was in a quiet old building downtown that had that distinct wood fragrance that old buildings have, and where I heard a secretary clicking away on the keys of an old fashioned typewriter instead of a computer.

    The neurological tests he did were more interesting than the poking and prodding of other doctors. In one test for example, he would ask me to tell him when I thought a minute had passed to test my brain’s perception of time. So I would sit quietly and try to count the seconds, “one one thousand, two one thousand,” in my head. The last time I visited him, I was ten seconds late, but he said this was an acceptable and normal margin of error without a clock to watch. When I was in second grade, he brought a model of a brain where you could peel away the different layers to show me how deep the tumor was in my brain. Every year, he also did the test for reflexes that all general physicians do where they tap that sweet spot on your knee with a special hammer to see if it bounces, but I think Dr. Dunn had a special touch with that hammer because it seemed like my knee bounced harder when he did it which always made me laugh.

    He was the kind of doctor whose passion for his job and compassion for his patients was genuine. In other words, unlike the previous neurologist, this doctor clearly did not choose the profession for the money. Mom said when I was a baby, he referred to me as his little princess, and he was always genuinely thrilled to see how far I had come over the years of follow-up. After my grim diagnosis, his skill and compassion were a blessing for which my parents and I will forever be grateful.

    As awful and scary as this diagnosis was, the silver lining was that if you are going to get this kind of tumor, infancy is the best time to get it, according to Dr. Dunn. In infancy, the skull and brain are not fully developed, so the brain can expand to accommodate a tumor, whereas in a fully developed skull, the tumor puts pressure on the brain causing horrible headaches. It is also much riskier to operate on a fully developed brain.

    This was brought home when I was fifteen years old. Four years before that, my vision teacher started working with a girl who was newly blind at the age of nine from a brain tumor. I don’t know if her tumor was classified as a Pilocytic Astrocytoma like mine, but my teacher told me about her because the tumor bore an eerie resemblance to mine, destroying the optic nerve and the pituitary. But perhaps because her brain was fully developed, it was inoperable and she had to endure chemo treatments. For awhile, the cancer appeared to be in remission, but a couple of years later, the tumor came back with a vengeance and nothing more could be done. She passed away just a few months later, not long after her thirteenth birthday.

    I did not know this girl because she lived in a different school district, but when my teacher told me her tumor came back and was going to be terminal, the news shocked and haunted me. When I found and read a blog the family created to write about her suffering and how she handled it with grace, and recounted sad events like the celebration of what everyone knew would be her last birthday, I almost cried. I have read other accounts of people suffering with cancer, but none of them haunted me the way her story did because but for the grace of God, I could have suffered as this girl had and my parents could have been the grieving parents.

    Given that brain tumors are rare in children, pediatric neurosurgery is a highly specialized field. So most of the other neurosurgeons Dr. Dunn consulted with in preparation for my surgery only had experience treating adults, and based on their experience, they would have been hesitant to operate, fearing it was too risky. But Dr. Dunn was optimistic that in my case, an operation could be successful. If I had been referred to a general neurosurgeon rather than Dr. Dunn, a highly skilled pediatric neurosurgeon, there is a good chance I wouldn’t be here today.

    Of course, it would be a risky operation. I came to a better appreciation of this risk when I was old enough to study the complexity of the brain in school. The brain does more than think and store knowledge and memories. It also governs vital, involuntary bodily processes like breathing and digestion, makes meaning of all five of our senses, and produces hormones that regulate everything from stress, to fluid and electrolyte balance to puberty and reproduction. The inside of the brain resembles a bowl of spaghetti and many components are tiny and very close together. So even though infancy gave me a better prognosis, when you are talking about an organ as complex and important as the brain is, I don’t think there is such a thing as a low-risk surgery. Dr. Dunn acknowledged the risks to my parents. There was a chance that I wouldn’t survive the operation, or that I would survive, but in a permanent vegetative state. But without the surgery, I would have little chance of survival at all. So my parents made the heart-rending decision to literally put my life in Dr. Dunn’s hands. Surgery was scheduled for November 12, 1990.

    The surgery lasted ten agonizing hours, all of which Mom said she spent in the waiting room praying for me. Relief washed over her when she found out that surgery had gone well, and when she was allowed to see me, she said I looked like my normal happy self. But I would have a long way to go before I was out of the woods. After any kind of brain trauma, which brain surgery is, it is natural for the brain to swell. Another advantage to infancy was that the doctor didn’t have to remove part of my skull to allow room for the brain to swell, which has to be done for fully developed brains. But my brain swelling was still a scary event for my parents to watch. In fact, Mom told me that if she hadn’t personally witnessed the swelling, she would not have recognized me if she had just walked in to the room and seen me that way. The swelling didn’t last long, but that was only the first of many scary moments.

    The pituitary gland, despite only being the size of a pea, is a vital component of the brain which produces hormones that regulate all kinds of bodily processes including such things as coping with physical stress (stress caused by an illness like the flu or time spent outside on a really hot summer’s day), managing the growth of bone and muscle tissue, and keeping fluids and electrolytes balanced. After surgery, it was discovered that the tumor had damaged this gland when my electrolytes swung wildly for awhile. One moment I would be listless and dehydrated and the next I would be over-hydrated, which can cause sodium levels to get dangerously low, which causes seizures. I also wasn’t producing the hormone that helps the body cope with physical stress. Eventually, doctors figured out the right doses of synthetic hormones for me, but for awhile, life was scary for my parents who said it seemed like I would take one step forward and then two steps back. I was also put on seizure medication until I was about two years old as a precaution since just the trauma of brain surgery can cause seizures.

    My first Thanksgiving was spent in the hospital with Mom watching the Macey’s Day Parade at my bedside. I was able to come home for my first Christmas, but I was sick with a fever that day.

    Then in January, Mom noticed new swelling around the surgical site. At first, she didn’t know what to make of it and just kept me home and watched it. But when she noticed it getting worse, she took me back to Dr. Dunn who said this was caused by fluid building up in the brain and it would need to be drained. So at the age of ten months, I had to be wheeled in to the operating room for a second brain surgery in which a shunt was placed to drain the fluid. Some brain tumor survivors require the shunt permanently, but in October of 1991 when fluid had stopped draining, Dr. Dunn and my parents decided to remove the shunt so I would not have to live with the risk of infection that comes with having foreign objects inside the body. So by the time I was a year and a half, I had undergone three brain surgeries, more than most people will undergo in their lifetime.

    From a medical standpoint, my river would continue to be a little choppy for several more years. Every six months for several years, I would continue to need scans to make sure the tumor didn’t come back. When I was old enough to be aware of things, these scans were procedures I dreaded as it is frightening at any age, but especially as a child, to be strapped down and wheeled in to those machines that made strange knocking and humming noises, and of course like all children, I dreaded the needle that had to be poked into a vein to administer dye. For my parents these procedures were scary because the possibility of devastating news from one of these scans always lurked in the back of their mind. My odds for survival were improved dramatically by the fact that Dr. Dunn was able to remove all of the tumor, but when you are talking about cancer, you don’t want to get overly confident because it can return with a vengeance.

    Even after the threat of my brain tumor’s return had abated, the river hasn’t always been smooth. I have to take synthetic hormones for the rest of my life as a result of the damage to my pituitary gland and I have had to deal with occasional medical complications because as wonderful as modern medicine is, synthetic hormones don’t work quite as seamlessly as naturally produced hormones. Hot, humid summer days take a lot out of me, sometimes requiring me to take an extra dose of the stress hormone, and my parents have had to call 911 three times over the years when three different stomach bugs threw my electrolytes out of whack. So needless to say, I take extra precautions to reduce the risk of stomach viruses or food poisoning.

    Most of the replacement hormones I needed were available in pill form. When I was really little, Mom would crush these pills in applesauce, but I mastered swallowing pills by the time I was eight years old. But one of the underlying conditions my tumor caused was diabetes insipidus. It has no relation to sugar diabetes at all. This condition means that my body does not produce a hormone that allows the body to store fluid. The endocrinologist told my parents this hormone wasn’t absolutely necessary to sustain life, but certainly improves the quality of life. Without this hormone, I would be in a constant state of thirst, and would need to use the restroom very frequently. But unfortunately during childhood, even though I was prescribed this medicine, I frequently got to taste what life would be like without it. This medicine had to be dosed very carefully, as too much of this medicine in the system could cause the body to retain too much fluid, leading to low sodium and seizures. This medicine was available in pill form when I was a child, but the pill only came in adult-size doses, so I had to take it in a nasal spray form that required my parents to blow it into my nose through a tube. But this medicine wasn’t very reliable. Sometimes, it just wouldn’t absorb, and if I had a cold, and sometimes even if I didn’t, I would sneeze the medicine out. But my parents could not administer more because there was no way of knowing if some of it still got absorbed, and the consequences of too much medicine in the system were too dangerous to take any chances. So it was not uncommon for this medicine to wear off in the middle of a school day, or for me to have to get up multiple times at night. For many years, I could not reach the kitchen cupboards to get a glass, or the faucet in the kitchen sink. Mom didn’t want me drinking out of the bathroom sink, so until I was in second grade, I would have to wake my poor parents up to give me water. Once I had woken them up three or four times, they could be confident that my medicine had worn off and it was safe to give me another dose so we could get back to bed for good. Then in second grade, my parents decided to rent a water cooler, which I could easily reach, and I was designated my own plastic cup which I kept on top of the water cooler and re-used all day. Although my situation was the impetus for renting the water cooler, the whole family loved it. At that time, we had well water that was safe to drink, but didn’t taste great, and because it was hard water, it made Mom’s tea and coffee a gross, cloudy color. The only downside to the water cooler was the chore of carrying in the five-gallon bottles of water and hoisting them onto the water cooler, a chore usually assigned to Dad or my older brothers, but I don’t remember anyone complaining about this chore because I think they realized the water tasted so wonderful it was worth the effort of replacing the bottle.

    Because of the unreliability of this medicine, one of the accommodations in my education plan was that I had to be allowed to keep a water bottle with me at all times, and to be granted permission to use the restroom any time. When I was in seventh grade, I had an unempathetic math teacher, and one day, my medicine wore off and I needed to use the restroom during her class. I raised my hand, and she granted me permission, but grudgingly, saying I should have gone during lunch. Lunch was just the period before, so under normal circumstances, she would have been right, but from her response, it was clear she didn’t read the letter given to all teachers about my condition, or didn’t take it seriously. In any case, when I told my mom about it, she was furious and wrote this teacher a civil but angry letter. (Not long after that incident, due to other difficulties I was having in her class, I was transferred to the slower-paced Math class.) But what a blessing it was my freshman year of high school when my body chemistry changed such that I could start taking a half tablet of this medicine in pill form!

    Another hormone the pituitary normally produces is growth hormone, but this hormone doesn’t normally kick in until children are around four years old. Until then, their bodies grow naturally. But when I was seven and still the size of a four-year-old, my doctor realized we had a problem. Sure enough, a test revealed I was not producing this hormone, and the only means of getting this hormone was a daily shot, which I was not at all thrilled to hear. But I quickly learned to cooperate because my mom did a great job explaining how without this shot, my quality of life would be diminished. She reminded me of how I needed a family member to get me a glass for water because the cupboard where the glasses were stored was out of my reach. If I cooperated for the shot, I would be able to reach this cupboard one day. The bitter pill of finding out I would need a daily shot was also eased considerably by the fact that Mom was a registered nurse, so administering shots was nothing new for her. I may not have liked having to get a shot, but I couldn’t have asked for more skilled, loving hands to administer it. With this shot, I reached a normal, functional height of 5`4. Normally, adults produce a small amount of growth hormone their entire lives, and my pediatric endocrinologist, an excellent doctor who kept up with the latest research related to my condition, thought I may need to take growth hormone my entire life because some research at that time indicated that people with my condition who stopped taking it were at higher risk of heart problems. When it was time for me to graduate to an adult endocrinologist, my pediatric endocrinologist referred me to a colleague whom he knew would continue to keep up with the latest research. A few years into adulthood, new research indicated there really is no difference in health outcomes, so I no longer have to take shots!

    But while growth hormone got my growth back on track, it caused other problems in the beginning. It caused me to grow so quickly that my body went haywire. The summer between second and third grade, I became severely anemic and had no appetite. The result was that when I started third grade, I was so skinny I am told I looked like a starved child from a third-world country. With a daily iron supplement, this situation gradually resolved, but when my appetite came back, my parents were so relieved to see me eating that they allowed me to fall into bad habits so I became a little overweight as an adolescent. The doctor also discovered that I had severe Scoliosis, so from January of third grade until the fall of my freshman year in high school, I had to wear a back brace, ideally for 22 hours a day. I am not sure if the spine doctor officially endorsed it, but my parents blessedly made exceptions occasionally so that I could enjoy swimming at camp, or fit into my munchkin costume when I wanted to participate in the school production of The Wizard of Oz in fourth grade. But in order to prevent spine issues later in life, it was important that I wear the brace as much as possible. The day the doctor thought I would no longer need this brace is high in the running for the happiest day of my life. I rarely have back aches now, but I had back aches often sitting in the hard plastic brace on hard, plastic school chairs all day, and it was very difficult to find a comfortable position for sleeping at night. While not the only factor, the brace may have contributed to my not having many friends in middle school, because the only clothing that could fit over the brace were “old lady clothes” with elastic waist bands. I felt like an old lady too as the brace made it more difficult to bend over, or stand up from the floor. I briefly attended physical therapy in fourth grade and my parents were given a list of abdominal exercises to preserve muscle tone which would have addressed this very issue, but I lacked the self-motivation back then to stick with these exercises, or any exercise for that matter, and life was too hectic for my parents to fight me. But a positive attitude about the brace was largely restored by Mrs. Lillie, a neighbor and close family friend. Her sister also had Scoliosis while growing up in the 1960s and had to wear a brace, but it was nothing like my brace. One time when I went to visit her, she showed it to me. It looked more like a torture contraption, with metal bars that came all the way up to her neck. I wasn’t religious at all back then, but after seeing that, I remember silently thanking God for modern medicine, and my custom-fitted, plastic brace with foam padding on the inside that only went around the middle/lower region of my spine.

    And then of course, my family and I all had to learn to navigate life with blindness. Mom admitted that it was emotionally difficult to find out that I would be blind, as it would be for any parent.

    “For a short time, I would get kind of sad when I would think about all the beautiful wonders you would never get to experience, like the changing colors in fall, sunrises and sunsets,” said my mom, “but then I realized there were so many wonders you could still enjoy like the sound of birds singing, the smell of flowers and the feel of a warm breeze.” Around the same time I lost my sight, Aunt Bootsy, an elderly relative on my mom’s side had lost most of her sight and had been struggling with depression. I don’t remember Aunt Bootsy, as she passed away when I was around two years old. But Mom said when Aunt Bootsy saw what a happy child I was despite being totally blind, her attitude toward her vision loss changed.

    Around the time Mom found out I was blind, she read a couple scary stories in the newspaper. In one story, a local blind man fell into an elevator shaft. Apparently, the elevator door opened, and he proceeded to step into the elevator, but due to a malfunction, the elevator wasn’t there yet. He ended up being okay, but the thought of this potentially happening to me someday made Mom shutter. In another story published shortly thereafter, another blind person was struck by a car. Reading these stories so soon after finding out I was blind did lead to some over-protectiveness my entire childhood. But all in all, my parents have always amazed me by how they have accepted and embraced the fact that I am blind, and faced the challenges that came our way with confidence. They have also done an excellent job teaching me to do the same.

    Growing up totally blind, I have had to overcome significant challenges to achieve things my peers take for granted. But the older I get, the more I have come to recognize and appreciate the grace of God in my life right from the start. When it became apparent that I would be blind permanently, a doctor informed my parents of a state-of-the-art preschool program specifically designed to meet the unique developmental needs of blind children. At the time, my parents thought all major metropolitan areas had programs like this, but they later learned this program was the only one like it in the Midwest! At that time, the Center did not have a permanent location. They would rent space in various office buildings, and it seemed like every few years, they would have to move. Just before my time there, and the year after I graduated, the Center was located in buildings that my mom said she would have driven to, but it would have posed more of an inconvenience as they were relatively far away. But in another stroke of what my parents and I now recognize as divine intervention, during the years that I received services from the Center, it was located just a ten minute drive from our house!

    I started receiving services from the Center when I was around ten months old. A few years ago when Mom and Dad told me I should consider graduate school, I jokingly replied, “I’m tired of school. I’ve been going to school since I was ten months old.” They laughed because it was kind of true. In these early months, I think my education consisted primarily of physical therapy. Physical therapy was very important in my case because I had two strikes against me. Because my right side had been paralyzed for awhile, I lost muscle tone on that side and had to regain my strength. Then, because I was blind, I couldn’t learn to crawl or walk by watching others as typical children do, so I had to be taught these things. This is probably the age when I would have laid in that cubby with the dangling plates and spoons, so I did get some early sensory experiences as well.

    Mom says that physical therapy was the only time when I did cry a little at school. The activities weren’t always fun, and I absolutely hated the idea of crawling. In fact, I actually have snippets of memory of me sitting and scooting on my bottom to get around the house, which I much preferred over crawling. The physical therapists told my mom that crawling is a critical developmental milestone that could not be skipped, but Mom suspects she knew why I hated it.

    “You were no dummy! You knew that if you crawled, the first thing that would find an obstacle would be your head. Why would anyone want to get around that way?” Mom told me once.

    It’s funny how although we change a lot as we mature, some things never change. I still hate to crawl. Of course, now that I can walk, crawling is no longer necessary on an everyday basis. But if I drop something, I will first utter a swear word, then pull off a shoe, search for the item with my foot, and pull it back to me so I can bend over and pick it right up. If I cannot find it with my foot and have to get on my hands and knees to search more intensively, I utter another swear word. Getting on my hands and knees to look for something is only done as a last resort! But just as with Math later in life, I eventually sucked it up and crawled just enough to graduate.

    In these early years, my physical development was delayed, which was to be expected for the simple reason that my brain tumor came to light right around the age when most children start crawling, so because I was paralyzed and sick most of those months, development was put on hold. Therefore, I didn’t crawl until I was almost two and didn’t really master walking until I was four years old.

    Until I was around two and a half years old, my mom had been a stay-at-home mom, but because my dad was uncertain about his job security, Mom decided to take a job as a home care nurse for another child with a disability. She would work second shift, and I remember her picking me up from my morning at the Center, which ended at 11:30, bringing me home, fixing lunch, greeting my siblings when they came home from school and heading off to work.

    Legally, my brother Ben was the babysitter because he was old enough, but my sister Rebecca–who it’s crazy to think would have only been eight or nine at the time–was a natural when it came to babysitting, and she became like my second mom when Mom was at work.

    I don’t personally remember this, but Mom said Rebecca would practice what I had been doing in therapy with me. Somehow, Mom came to realize that I would walk for the therapists, and I would walk for my sister, but I would not walk for her and Dad.

    Mom asked the physical therapist about this one day, and she said this is natural behavior for children my age. I guess psychologically, children at that age believe that if they demonstrate too much independence, their parents will abandon them. I don’t remember what the professionals did to overcome this, but I was walking without a second thought by the time I was four. But when I heard that I would walk for my sister, it warmed my heart and made me realize we have a special bond.

    It was through my sister that Mom also discovered I wasn’t sleeping at night. This, my mom was told, is also common with blind children. Since they cannot tell time, nor can they tell light from dark, it is not uncommon for their circadian rhythm to become completely messed up, which is what happened with me. I would basically sleep all day and want to stay up all night and play! I shared a bedroom with my sister until one night when my mom heard noise in the bathroom, woke up and almost tripped over me, who was casually playing on the floor as if it were the middle of the day.

    “She does that every night,” my sister confided to Mom, “I try to coax her back to bed.” Upon learning this, I was given my own room, and when I couldn’t sleep, Mom stayed up with me, passing the time by ordering supplies the family needed over the phone from Sears catalogs. For some blind people, this problem persists into adulthood. It is actually a recognized medical condition called Non24, and I have seen commercials advertising a medication for this condition. A few years ago when the medication was in clinical trials, I received several letters in braille trying to recruit me, but I declined because once I started having a more consistent school routine, and thus a better perception of time, this issue resolved on its own. I am still a bit of a night-owl. When my parents are sleepy and hit the sack by 10:00, I have been known to stay up reading or writing until 1:30 in the morning. But Mom says this has nothing to do with the fact that I am blind. It’s genetic. I take after my brother Ben.

    In those early years, feeding me was also a challenge. The Center worked on this issue quite a bit, but it was an ongoing problem that continued to require patience when I graduated to elementary school. In those few years, there were only three things I would reliably eat: spaghetti-os, applesauce and milk. Mom suspects that because I was blind, my other senses were heightened and thus I had aversions to many textures. So I am told many hours of my time at the Center were spent cajoling me to try a variety of foods.

    Despite all the challenges I had to overcome in those years, there was plenty of time left for fun, and I have fond memories of fun times at the Center. The classroom was full of delightful sensory toys, from a tub that was filled with rice on some days, and water on others, to braille books with tactile pictures, to tambourines and drums. I remember having a blast when we were free to play. On occasion, a local musician named Tony would visit our classroom and play drums for us.

    The Center had school year-round, but at that age, I had no conception of time anyway. When the weather was warm, we often took field trips, and looking back, these field trips probably coincided with summer vacation for regular schools because my siblings often came along to help out on these trips. Sometimes, we would go to a nearby park to play in the sand and swim in the lake. It was on one of these trips I vaguely remember throwing a tantrum because we were going to go for a boat ride and I wanted to ride the boat but didn’t like the feel of the lifejacket. I’m not sure how that ended up getting resolved. When I was a little older, I remember using my cane to walk to a nearby Walgreens and bringing back animal crackers for the principal. I remember visiting farms and petting animals, but I especially enjoyed horseback riding. In our community, there is a place simply called The Ranch, which caters to people with special needs. Sometimes we would go there, and sometimes, they even brought horses to the Center. The horses they used with us were older and extremely well-trained, so well-trained that Mom said I had absolutely no fear of the horse. In fact, as someone who had ridden a horse as a child that was wild and tried to buck her off, she was a little terrified when she saw me sitting on a giant horse, calm as can be, not even holding onto the saddle. I was definitely ignorant of how big horses are and how far I would fall if I fell. Ignorance really is bliss.

    Perhaps if we lived on a farm, I could have become an expert rider, but as it was, horseback riding was such a rare activity once I left the Center that if I got on a horse now, I would be terrified.

    Those were my preschool days, idyllic days my five-year-old self didn’t understand were about to end. But on a Friday in August, just two weeks before I would start kindergarten, I celebrated my first graduation. I didn’t really understand what graduation meant. I knew it was something special because Granny and Papaw came to be there for it, and I got cake and presents. I feel like one of my presents was a rain stick, which I enjoyed playing with that day. But while I was oblivious to the significance of this milestone, I think for my parents, this graduation was akin to celebrating survival following a brutal storm. Sure, they knew the waters ahead were uncertain. But given that I was graduating pre-school at the same age as my sighted peers when just a few years earlier, doctors weren’t sure I would live to experience pre-school, they were optimistic that my future could only get brighter.

I think these early challenges brought my parents closer to God, but I was too young to remember the brain surgeries, and the challenges associated with being blind were just a normal part of life for me. It wasn’t until high school that I began to discern that I wanted my life to count for God for reasons completely unrelated to these challenges. But as an adult looking back on all the “coincidences” that fell into place that prove God’s grace and sovereign intervention in my life, I see these blessings as all the more reason to want my life to count for God.