Well readers, I have been doing some writing for a Spiritual Writing class I just finished with the Creative Nonfiction Foundation, the same organization from which I took the memoir writing class I wrote about back in January. I have known for awhile that I wanted a future career that involved writing from the Christian perspective, and got excited when I heard about this class last summer. But unfortunately, this class is only offered once a year, and by the time I saw it last summer, it was sold out. So I made sure to sign up for it right away when I saw it offered again this summer. I really enjoyed this class, especially because unlike a previous Foundations of Creative Writing Class I took at the end of March where my classmates were relatively quiet, my classmates for this spiritual writing class were really enthusiastic and engaged. I definitely plan to share the primary essay I wrote for this class in some form, though I haven’t decided if I will post it to this blog, self-publish it in a book, or try to submit it to a magazine. But besides the writing for this class, and a couple of essays I had to write for my seminary school application, I haven’t been able to find the ambition to write for this blog. But I have been drawn to reading, and have read several compelling essays in light of the senseless murder of George Floyd, as well as several compelling essays written by people with disabilities for the 30th anniversary of the Americans with Disabilities Act, which was signed into law July 26, 1990. In reading these essays, it occurred to me there are interesting parallels between the challenges experienced by minority populations, and people with disabilities. By no means am I implying that being in a minority population is the same as having a disability. What I am saying is that just as we have no control over what race we are born into, we have no control over whether we are born with a disability, nor for the most part, whether we develop a disability later in life. Just as people from minority populations have to put up with systemic and unconscious racism, people with disabilities still have to put up with systemic, and unconscious ableism. And while tremendous progress has been made to improve life for both populations via the Civil Rights movement, and the Americans with Disabilities Act, for both populations, there is still room for improvement.
I don’t have all the answers for how racism or ableism could be addressed on a systemic level. Both are complex issues that will require a multi-faceted approach when it comes to legislation. But as I have written before, laws alone cannot change the world, so equally, if not more important than changing laws is changing hearts.
A frequent theme of the essays I have read regarding racism is the defensive reaction of white people when the subject of white privilege is broached. “But I am not racist,” is a common response from white people like myself, and one I also had at first. While it is true that the vast majority of white people find our country’s history of slavery, Jim Crow laws and lynching abhorrent, are appalled by the rhetoric of white supremacist groups that still persist today, and fully support legislation like Affirmative Action meant to rectify this shameful history, the fact is white people take their history of privilege for granted and still inadvertently say and do things that are racist, still influenced by generations of engrained prejudice against other races.
I grew up in an affluent suburb that was probably created by “white flight.” A few black students took a bus from Milwaukee to attend school in our district, but I rarely had a black student in my class, especially by the time I got to high school. Then I would come home from school and watch the news with my parents which was full of shootings and other gang violence in predominantly black neighborhoods in Milwaukee. From interviews with witnesses or survivors on the news, I learned to recognize the dialect of black people which to me felt intimidating: “rough around the edges” is the best way I can think of to describe it. The bus that took the black students home after school always came a little later than the rest of the buses. (the Special Ed bus which my parents insisted I ride left five minutes earlier than everyone else, so most days, I had to leave my last class, Chamber Choir, a little early to catch it. But on Wednesdays, my mom would pick me up since I had piano lessons at 3:30 most Wednesdays. Sometimes, Mom would get caught in traffic and be a little late picking me up, and while waiting for her, I would hear black students being really loud, yelling, slamming doors. I found their behavior disconcerting, and sometimes couldn’t tell if they were fighting or just goofing around. I remember quietly getting further away if I felt like they were coming close to me, and thinking, “Come on Mom, hurry up and get here, so I can get out of here before a gun is drawn.” One time when it was obvious that I was lost in a hallway in my high school, a black student approached me and asked me if I needed help. I politely told her no thanks, that my teacher wanted me to figure things out on my own, which was true. But the truth is, had the student been white, I might have cheated and let her help me: the real reason for declining help from the black student was my engrained, subconscious fear of black people and their rougher dialect. Even at the liberal arts college I attended, it was rare that I had a black student in class. My freshman year, there was a black student in my Communication 101 class, and when he was in my group for a project and he said something about stabbing his brother when he was a kid, my fear was only reenforced. It was reenforced again the following semester in a News Writing class when a black student got in an argument with the professor after which some classmates heard her make a veiled threat under her breath: “this is how things like Virginia Tech happen.” I had an amazing, charismatic professor who was black for several of my Paralegal classes, but my classmates were mostly white, and black students I would pass in the hallway of this urban technical college sometimes made me uneasy when I heard them shouting or cursing at each other or to someone on the phone. It wasn’t until I started my job at a Social Security law firm and worked alongside several case managers who were black who I became good friends with that I fully appreciated how silly my fear was. I know saying you have black friends is itself racist, but what I am trying to say is based on my experience, I think it is because of our country’s persisting unofficial segregation that racially based fear still persists.
The history of people with disabilities in this country was never part of the curriculum in school. I watched a brief video on the disability movement as part of a brain disorders class I took my freshman year of college, but most of my education on this history is thanks to an NPR podcast I listened to just this past Sunday. Like our country’s history of racism, our history of ableism is also pretty ugly.
For most of our country’s history, people with disabilities were also segregated, due to fear, driven by persistent myths that people with disabilities were cursed, or being punished by God. People with disabilities were often institutionalized, and there were actually “ugly laws” on the books all across the country. Joseph Shapiro, an investigative journalist featured on this podcast cited a portion of Chicago’s municipal code from 1881 which said “any person who is diseased, maimed, mutilated or deformed so as to be an unsightly or disgusting object” could be fined if spotted in public. It was practically unheard of for blind people like me to be educated in a mainstream school. If they were educated at all, it was almost always in a special school for the blind. If a person with disabilities wanted to attend a mainstream school, it was up to the person with the disability to figure out how to make it work. One adult interviewed on the podcast was paralyzed by polio as a child, but wanted to return to school. The principal arranged for some football players to carry her up the stairs to her classes on the second or third floor, but they couldn’t help her with the bathroom, so she had to make sure she didn’t drink too much so she wouldn’t have to go until she got home! Public establishments could deny service to people with disabilities if they felt the person’s appearance could be upsetting to other customers, and as recently as the 1970s, forced sterilization of people with disabilities was legal!
The first signs of change on the horizon came after World War II, when more soldiers survived with wounds that would have been fatal in previous wars, and wanted to live independent, full lives. Around that time, pictures of horrific conditions inside many institutions for the disabled emerged, images strikingly similar to the images that emerged from the Nazi concentration camps, where in addition to the murder of six million Jewish people, the Nazis also killed millions of people with disabilities. Over the following decades, many institutions closed and federal funding was shifted to helping people with disabilities live in the community. Programs also emerged to teach people with disabilities how to overcome their disabilities and live independently. But even in these years, the burden rested on the person with the disability to figure out how to navigate a world that wasn’t designed for them. The idea of simply relocating a class to the first floor was never considered. If a person unable to walk could crawl up stairs to get to a class, that was what was expected. Most buses did not have wheelchair lifts, and cabs routinely sped by if they saw a wheelchair.
In the 1970s, many in the disability community started to realize that the prejudice and discrimination they faced was no different than the struggle faced by Black Americans. People with disabilities recognized they were a minority whose civil rights were being violated. In 1973, the Rehabilitation Act was signed into law, but it didn’t really have teeth because it only applied to agencies and entities that received federal funding. People with disabilities staged protests, modeled after the peaceful protests of the Civil Rights movement, protests that could not be ignored. All across the country, people with disabilities organized to lay in the street blocking buses that were not accessible to them, and most notably in 1990, sixty activists in wheelchairs gathered to crawl up the steps into the United States Capitol. On July 26, 1990, the Americans with Disabilities Act was signed into law by President George H. W. Bush whose son was dyslexic, hoping it would lead to a “kinder, gentler society.” The law was written with much the same language as the legislation brought about by the Civil Rights movement and the Women’s Suffrage movement. It banned discrimination based on a person’s disability, and also shifted the burden of accommodation from the person with the disability, to communities and businesses. Mainstream public schools were now required to make reasonable accommodations to educate children with disabilities. Communities were required to make modifications like installing curb cuts so that people in wheelchairs could cross streets. Most buildings were required to add modifications like elevators, and braille signage.
I was born in March of 1990, and just three months after the Americans with Disabilities Act became law, I would be diagnosed with a brain tumor that would destroy my optic nerve leaving me totally blind. I have never known life without the Americans with Disabilities Act, something I took for granted as a child. I owe a debt of gratitude to the people with disabilities who fought for this civil rights legislation which has given me such a blessed life: education in my home school district with all the accommodations and support I needed, a disability services department that allowed me to thrive at a private liberal arts college, the opportunity to pursue a career, earn income of my own and contribute to society. But in the same way there is still much work yet to be done to achieve a more perfect union for people of color, there is also much work to be done for people with disabilities.
Movies and TV shows still perpetuate negative stereotypes about people with disabilities because people with disabilities rarely have the opportunity to write or produce these shows and movies. Businesses still deny blind people access with their guide dogs, and cab drivers speed past guide dog teams. While most large corporations are mindful of accessibility, I still occasionally encounter apps and websites that did not take accessibility into consideration. Life is still difficult at times for people in wheelchairs because some old buildings were exempt from the Americans with Disabilities Act, and most homes are not wheelchair accessible, which is especially difficult for children and teens confined to wheelchairs who often cannot attend a party at a nondisabled friend’s house. As hard as my classroom aide tried to remind teachers, they often couldn’t plan ahead and give the aide class materials in advance for transcription into braille, so I would have to just listen and follow along as best I could until my aide could braille it. My first semester of college, Disability Services didn’t have my books transcribed until the semester was already well underway, so my parents read to me so I wouldn’t fall behind. I would later find out this is a commonplace occurrence for blind college students. Even before the pandemic, the unemployment rate for people with disabilities was about 70 percent, a figure that I imagine will get worse as companies facing financial uncertainty will “play it safe” hiring the person without disabilities they will perceive as more capable, and less of a risk. As schools adjust to the unprecedented need for distance learning, children with special needs have often been overlooked, denied the support they need. And most disturbing of all, I have read that some hospitals created guidelines that basically said if there were not enough ventilators, they should prioritize those who have the best prognosis of recovery and return to a productive life, which many in the disability community feared was akin to giving hospitals permission to sacrifice people with disabilities.
But similar to the awakening of many to the racism that still exists in this country, I am optimistic that reform is on the horizon to combat ableism as well. One essay I read expressed the hope that now that people without disabilities have gotten a small taste of the loss of freedom, the inconvenience that people with disabilities live with every day, they will be more empathetic toward people with disabilities, resulting in much-needed reform. For example, many people with disabilities have been pleading for more flexibility to work or attend classes remotely due to lack of transportation, or health concerns, a request that was often denied. People with disabilities were rightfully perturbed that it took a pandemic for people without disabilities to accept something they have wanted for years, but while many are looking forward to returning to offices and receiving in-person instruction, many with disabilities hope that schools and employers will have learned from the pandemic that working remotely is possible, and will be more accommodating. The consciences of many have also been shocked by the number of people in nursing homes, a large segment of the disabled population, who have died of COVID-19, which I think will inspire more investment in senior care.
But just as is the case with racism, equally if not more important than practical reform is a change of heart. I believe for the most part, we are a kinder, gentler society. I have yet to meet anyone who gave me the impression they thought I was a drain on society and my life should not have been saved when I had my brain tumor, or that I should be locked away in an institution, out of their sight, out of mind. People like Donald Trump who makes fun of people with disabilities, and tried to demand that architectural engineers violate the Americans with Disabilities Act and get rid of the braille in the Trump Tower elevator are a small minority. But just as we are all racists without meaning to be, we all have ableist attitudes, including me. Yes you read that right. I have a disability, yet I realize I have ableist attitudes.
In a book I have been reading written by a blind woman who trains her own guide dogs, she mentions that people have told her if they ever went blind, they would shoot themselves. This struck her as deeply offensive, as if her life wasn’t valued, almost implying she should shoot herself. But I didn’t see this remark that way. I thought of it more in terms of trying to express the sentiment that they depend on their vision so much they cannot imagine how they could ever live without it. They admire how she has adapted to her disability, but this is a resilience they don’t believe they would have. They are unfamiliar with all the technology and resources available that allow blind people to live full, independent lives, and so believe if they went blind, their quality of life would be so diminished they wouldn’t want to live anymore. I am a little shocked that people would be so crass as to actually say that to her face. But I have thought the same thing about the prospect of living with other disabilities I am not familiar with.
I remember finding it a little weird, almost comical when in third grade, we learned about Helen Keller. My classmates and teacher loved getting my input on discussion questions as I understood firsthand some of the challenges Helen Keller faced. I didn’t know how to tell them I was just as, if not more amazed, and terrified by Helen Keller as they were. I was accustomed to being blind. But to be blind and deaf? I know Helen Keller adapted and lived a full, happy life long before the Americans with Disabilities Act, and all kinds of technological innovations that have made life a little easier for people with disabilities. But people have tried to show me sign language for fun over the years, and I don’t understand it. Even when people have tried to make braille dots in the palm of my hand for fun, I cannot make out what they are writing. I know there is technology that helps people who are deaf/blind to communicate, but I imagine social interaction is still difficult, and limited to close friends and family familiar with it. And I cannot imagine life without music. Every day during that Helen Keller unit, I remember thanking God that I was only blind. Almost a year later, I went to visit my paternal grandma and grandpa. Grandpa was hard of haring and had the television turned up pretty loud, but I didn’t think anything of it. Then my dad came in and whisked me out of the room, which was uncharacteristic. My parents did not believe in much censorship, so I was used to scary crime shows and movies with foul language. Then I heard Dad whispering to Grandma that he didn’t want me exposed to such loud noise for fear I could go deaf. I thought I was safe from going deaf because the cause of Helen Keller’s deafness was Scarlet Fever, which there is a vaccine for nowadays. The possibility that I could go deaf just from too much exposure to loud noise never occurred to me. To this day, I am careful to make sure I am cognizant of noise. I only use headphones when I have to, and I get a sick feeling in my stomach when I go to a concert or play that I didn’t think to bring earplugs for because I didn’t know how loud it would be. I even backed out of one of the plays my parents bought season tickets for at a local theatre when a letter seeking to get patrons excited about the show stated that earplugs would be provided. I have inadvertently attended shows that were pretty loud, but earplugs weren’t provided. If the theatre was actually providing earplugs, the show must be really loud, maybe to the point of posing a legal liability for the theatre, and sometimes when I have worn earplugs, I have discovered during the show that the earplugs slipped out of my genetically waxy ears and thus weren’t able to do me any good. You can judge me as irrational if you want, but I wasn’t willing to take a chance with this show. If I am unfortunate and become deaf/blind one day, my deafness will not be due to irresponsible behavior on my part.
I have heard many adults the age of my parents express some form of the sentiment of “when I can no longer care for myself, become a vegetable, have to live in a nursing home, just shoot me.” I cannot say I blame them. My grandfather had to live in a nursing home the final six months or so of his life. He passed away in January 2008. While the staff that cared for him was extremely compassionate–a couple of them even came to his funeral–I remember thanking God that after visiting a few hours, I would be able to get out of there, and was sad for everyone who couldn’t leave. The whole place stunk, as I’m sure all nursing homes do because they are so underfunded they don’t have the staffing to clean up accidents as promptly as they should be, and because a large proportion of nursing home residents end up relying on Medicaid to cover their care, and Medicaid will only pay for one bath a week. Occasionally a local singer or performance group would come in and sing for the residents, but most days it seemed like the routine was the staff would get the residents up and help them dress, only to sit in their wheelchairs either in their rooms, or parked in the hallway if they needed supervision. Three times a day, they received low-quality food reminiscent of my lunches in the school cafeteria, food that was pureed for residents who couldn’t chew. Then the evening staff would put the residents to bed, and the same routine would begin again the next day. On our summer visits, we would take my grandfather outside, and he enjoyed the fresh air and sunshine. But for residents who don’t have family, they never get to go outside. I know I have complained some on this blog about not having the freedom and autonomy sighted people have because I cannot drive, and cannot leave the house without either a cane, guide dog or sighted guide. But I can choose when I wake up, bathe and go to bed. I can prepare my own delicious meals using wonderful fresh fruits and vegetables, no pepperoni pizza and canned pineapple, the dinner given to my grandma at her assisted living facility one day recently. On beautiful days, I can take myself out to the patio and read a braille book on the porch swing. I wonder how I would cope emotionally if/when I lose these basic freedoms. In all seriousness, I wouldn’t actually shoot myself, but I cannot say I wouldn’t get pretty depressed. But I remember a sermon one day awhile back in church when the pastor talked about people who seem so positive, and have an incredible joy about them despite going through hardship. People will often say they cannot imagine how they would go on if faced with hardship like an illness or permanent disability, but the pastor said those people that have a joy about them couldn’t imagine they would be in the difficult situation they are facing either, but when we need it, God gives us the strength to cope with the unimaginable. Hopefully, I would draw on the experience I already have coping with a disability to help me accept and adjust to a new one, trust that God is in control, and focus on all the things I can still enjoy. If nothing else, hopefully I would remember that for those who accept Christ, all disabilities are ultimately only temporary. But if someone ever told me they would shoot themselves if they ever went blind, I wouldn’t take it personally, as I have thought the same thing about other disabilities.
Even though I have a disability, I wonder if I would discriminate against people with other disabilities I am less familiar with if I had a job in human resources. I have been influenced by inaccurate representations of disabilities in the media. When I was in seventh grade, I attended a braille competition hosted by the Wisconsin state school for the blind, the school I likely would have attended if I had grown up before the Americans with Disabilities Act was passed, which sparked a trend toward keeping most blind students in their home school districts. Most of the students at the state school post-1990 have cognitive disabilities in addition to their blindness. This was a really fun camp-like event held on a Thursday and Friday each March. We would arrive around lunchtime on Thursday, and then have an opening ceremony and an afternoon of games involving braille, followed by a pizza party and time to swim in the pool or watch a movie. A prom was also held for high school students during this time. Then we would spend the night in the school dormitories, play a few more games in the morning, and then receive medals in a closing ceremony before heading home Friday afternoon. I attended this event in fifth and sixth grade, and I think those years, I tagged along with a group of other blind students and a teacher I knew well who attended another local school with a resource room for the blind, but seventh grade for some reason, they couldn’t attend, so my mom decided to accompany me. I was sure glad to have Mom with me when Thursday evening at dinner, a teenager with cognitive disabilities enthusiastically sat down inappropriately close to me and said something like, “Hi! I take meds for paranoid schizophrenia! What do you have?” My jaw dropped, not just because I was taken by surprise at such inappropriate social behavior, but also because I had recently watched a documentary on TV about people with schizophrenia acting on voices that told them to kill people. Mom still laughs when she remembers the look on my face, how I scooted toward her for protection, and made sure the door to our dorm room was locked that night. I have since learned that the vast majority of people with schizophrenia are not violent, and of those that are, it is almost always because their schizophrenia isn’t getting treated properly. Even so, that first impression was powerful, and even in my job at the Social Security law firm where I occasionally talked to clients with schizophrenia, I remember thinking, “I’m glad all of our interaction is over the phone.” So I wonder if I would still have misgivings about hiring someone if I knew they had a mental illness like schizophrenia.
Recently, I also read an excellent article reflecting on the Americans with Disabilities Act. The woman who wrote this article has cerebral palsy and like all people with disabilities, struggled to find employment after college. She recounts walking out of mock job interviews where she was told that what she said seemed intelligent but she should consider speech therapy because her voice sounded “a little sleepy.” This convicted me because as a blind person–not that this is an excuse–I not only identify people by the sound of their voice, but judge them as well. When Michael Jackson was on trial several years ago, accused of molesting children at his Neverland Ranch amusement park, I was convinced of his guilt just by the sound of his voice, a gross high-pitch, sweet voice I couldn’t stand to listen to. I could never have been on the jury for this reason. I also cannot stand the sound of Senator Mitch McConnell’s voice. There is plenty of other evidence of his corruption and insincerity even if you never heard him speak, but his voice seals the deal for me. These famous people don’t have disabilities, but my point is, I wonder if it shows that if I were in human resources and this woman with cerebral palsy came in for an interview, I would have a hard time looking past a voice that sounds sleepy, which I would interpret as bored or disengaged, no matter how capable and qualified she was for the job, even if she couldn’t help talking this way due to her disability. This story also brought back memories of my own long search for employment, and even a couple unsuccessful interviews I landed when I tried to find a different job in 2016. There is no way to prove I was denied jobs because of my blindness, nor will I ever know for sure if I would have even landed the job at the Social Security disability law firm where I worked for five years without the job developer who accompanied me to the interview, talking up my intelligence and wonderful personality and giving the employer information on a state program that would pay my wages for a three month trial period, and half my wage for another three months if I was officially hired. Maybe I’m irrational, but the fact that incentive programs like this are necessary for employers to give people with disabilities a chance makes me a little angry. But is it really fair to fault someone in human resources who may have felt uneasy about my inability to make perfect eye contact, or didn’t think I would be able to do the job because they were unfamiliar with all of the technology that makes many visual tasks possible, when I would be reluctant to hire someone with a mental illness, cognitive disabilities, or a speech impediment?
A term that has become popular in light of the racial unrest in this country is anti-racist. It acknowledges that all white people have unintentionally said and done racist things because of prejudices engrained in us for generations, but that we want to change for the better. I want to make it my goal to be anti-racist, and anti-ableist. I don’t have all the answers for how to achieve these goals, and change of heart is a process that doesn’t happen overnight. But I think some of the solutions proposed to move away from racism are very applicable to addressing ableism as well. The school curriculum should spend more time teaching children about the racism in our country’s history, as well as our country’s dark history for people with disabilities. I think schools should also have more programs where children in mainstream classrooms collaborate with Special Ed students for activities so that students are exposed to peers with a diversity of disabilities. Just as publishers and studios that produce movies and TV shows are recognizing the importance of better ethnic diversity, they should also strive to encourage more books, shows and movies written and directed by people with disabilities, and if someone without disabilities writes a plot that depicts people with disabilities, it should be reviewed by people with the particular disability to ensure that the characters are depicted in an accurate and realistic manner, and if possible, the character should be played by someone with said disability. It is also essential that more people with disabilities hold positions in government, and in product development because when people with disabilities aren’t represented, their needs become an afterthought. I think gradually, with better education and greater representation of minorities and people with disabilities in government, product development and all forms of media, we can move toward a “more perfect union” for both populations. For my part, I will make a greater effort to educate myself on disabilities I am not familiar with, and if I encounter people with disabilities in my next career, or land a position where I make hiring decisions, I will make a stronger effort to treat all people with disabilities, and people of all races, the way I would want to be treated.
Gilbert and Me 