The 25th anniversary of the signing into law of the Americans with Disabilities Act is this week. Disability, accessibility, and usability are frequent topics in this blog. I can’t let this pass without a post (despite being rather delinquent with posting since our move into our new library, but more on that another time). But what do I have to offer? There are countless people around the country writing about what has changed since the ADA came into effect, and how much remains to do. There are organizations devoted to #ADA25 with toolkits for organizing your own events. There are celebrations at the White House and most of the state capitals, and beyond. (Resources and links towards the end of this post.) So what can I do? Perhaps just share my own stories of disability experiences in my own life.
MY PERSONAL DISABILITY EXPERIENCE TIMELINE
These are mostly stories from long before the ADA was signed into law. Back then, having a disability was shameful and stigmatized, denied and hidden if at all possible. Accommodations wasn’t even a concept that most people could hold in their mind. The language used to discuss disabilities was stigmatizing and hurtful, at best. You had to have a thick skin. Then, as far as we knew, my family was all able-bodied. We know better now. Several of us in my family have something not quite right with our bodies or minds. I suspect this is true for many families. The families I’ve met with extreme good health are often from cultures where disabilities is still heavily stigmatized, so I’m never quite sure if they are truly as healthy as they say, or if they are also in denial.
Eating sorrel at recess
I was in grade school, probably 2nd grade. There was a red-headed boy with freckles who was new to our class and a lot bigger than everyone else. He had been held back because he couldn’t pass the grade, so he was taking 2nd grade over again. His parents had transferred him to the Catholic school hoping that he’d get more support at a private school than in the public school system. These days we wouldn’t hold the kid back, but would have them tested for a learning disability, get a diagnosis, figure out the accommodations, and design an IEP. No one would play with him. He was new, big, a little scary, and people thought there was something wrong with him. No one was sure what, but they didn’t want to get too close. It was the contagion theory of disability. “Oops! He has cooties! It’s catching!”
I was a victim of the same contagion theory. My brother also had some undiagnosed disability (later discovered to be on the autism spectrum). The other kids wanted to steer clear of him, and by association, me as well. Not every one, and not all the time. Sometimes people would play with me. Not like the red-headed boy. No one EVER played with him. So I took him under my wing. At recess we’d go over to a big tree, sit in the dirt, and talk. I was really smart, and he wasn’t, at least in the same way, but he thought hard about things and had good questions. I’d answer his questions, and I enjoyed playing teacher. One of the things I showed him was the sorrel growing wild in the grass under the tree, that tasted tart and salty at the same time. At the end of the year, he didn’t pass again, and was held back again, or transferred again. I don’t know. I never saw him after that year.
One leg shorter
A few years later, my family transferred all of us to a public school because we couldn’t afford the fees. In my new class there was a boy who had one leg that was shorter than the other. He’d had polio when he was little, and almost died, I was told. But he didn’t die, it just messed up his leg. Even so, he was taller than me. Quiet. I mean, REALLY quiet. I don’t remember him ever talking without being ordered to. He wore glasses, had dark hair that he wore almost down to his shoulders (which just wasn’t done then), with long bangs that fell over his face. In those days, we wouldn’t have called him disabled, it was just there were things he couldn’t do. He was that little bit ‘different,’ and boy, did he know it! I wanted to talk to him and get to know him (I thought he was kind of cute), but he didn’t talk to anyone.
Smart as a whip, too bad about the wheelchair
There were two Anderson families in my town that had large families. Mine was one, and there was another one. In middle school, I got to meet one of the kids from the other Anderson family. Ken Anderson was in a wheelchair, I didn’t know why. His disability was big and obvious and he couldn’t hide it. He was smart, social, and people liked him. There was never a shortage of folk who would help push his chair. Ken went on to found a student organization for people with “handicaps” (that was the lingo then) at the University of Iowa. It was called Restrict Us Not (RUN). He had a successful accounting career, and founded his own business. Ken died last winter.
Put the pedal to the metal
In high school, Jeff Benson was a year ahead of me. Jeff had also had polio (I’m old enough to remember getting the vaccine on sugar cubes). For him, it wasn’t just one leg, and not just a little. Both legs were effected. He could have used a wheelchair, but I remember him walking with arm braces. Bright, shiny light hair, gritty and determined, and always the life of the party. He was a live wire! He was a drummer for a popular band, and really belted it out. I remember when he got his first set of wheels. At that age, I didn’t know it was possible for people with wheelchairs to drive. I’m not sure anyone in town had seen a car like this before! His parents had the red hotrod modified to use hand brakes, and I remember him waving to his audience, as he’d roar out of the parking lot with the top down. We lost Jeff just a couple months ago.
Hiding in plain sight
In college, one year, I took Italian. It was a small class. The university didn’t allow classes to be taught unless they had a minimum of six students. We managed to barely scrape by with just the required number to allow us to take the class for the full year. There was one young man who was a senior for the second time. He was in engineering, and they wouldn’t allow him to graduate until he had a full year of a foreign language. He had already flunked out of every other foreign language taught at the school, and this was his last chance to graduate. He struggled, but we all helped him along. Towards the end of the year, the rest of us went off to the side and had a conversation. We had all figured out that he had dyslexia. Did he know? Did he know there are resources to help? Should we talk to him about it? Life could be easier, you know! So we did. We brought it up the last day of class. We mentioned that we knew he had to be absolutely brilliant to have gotten along this far with good grades and no one knowing. He completely panicked. He’d been trying to hide it for his entire school career, and was terrified that we would tell someone and he’d never be able to get a job.
Keeping her safe from romance
After college, I worked at the university library. Someone brought in one of the faculty who was blind to talk about how she used information resources. She was brilliant, obviously, sturdy, and with a huge sense of humor, but life wasn’t built for people with visual impairments, and she had no vision at all. How had she gotten through school and become a faculty member? What struck us the most about her story was when she complained that they had no audiobooks of Harlequin romances. She explained that people with disabilities were considered too fragile to have any interest in sex or romance, and so the organizations that would pay to make audio copies of her academic research information needs would not pay for “smut.” A couple of the gals took matters into their own hands and corralled a group of volunteers. We all took a chapter, and recorded a “smutty” romance novel for her.
I could go on. There are many more stories. As the time of the ADA came closer, I have more and more stories of people wanting to learn more and understand about the barriers. After the ADA was signed, I have stories of some incredibly bone-headed things people did in the name of “accommodation.” When I moved here to Ann Arbor, I was initially shocked by the lack of accessibility for the library I was to manage, and how difficult it was to find people on campus aware of web accessibility. We got an elevator for my library, and then we got a campus web accessibility working group.
There is still a lot to do, but we keep trying. Meanwhile, over the years, many if my friends and family have been diagnosed with temporary, chronic, or permanent health issues ofone sort or another. Disability advocacy started out for me as something I wanted to do for others, because I love to help people. Now it is personal. As I age, it becomes more and more personal. Without the ADA, I probably wouldn’t even have a job. I wouldn’t have been able to get past a few major health hurdles in the past few decades. Because of the protection of the law, I was able to get accommodations and keep working. I hope that what I do will continue to be useful for years to come.
RESOURCES AND LINKS
ADA Anniversary Toolkit: http://adaanniversary.org/
– Proclamation (Organizations & Government Entities)
– Pledge for Individuals
– Faith Communities
ADA Information: http://www.adainformation.org/
ADA Legacy Project: http://www.adalegacy.com/ada25
ADA National Network (Great Plains ADA Center): https://adata.org/ada-anniversary
– Timeline of the American with Disabilities Act
– National ADA Systematic Review
ADA 25 Celebrate: https://www.youtube.com/channel/UCbUCwPT82s4WnKwnc-vEQyw
Disability.gov ADA25 Social Media Toolkit: https://www.disability.gov/newsroom/ada-25-social-media-toolkit/
Smithsonian: EveryBody: An Artifact History of Disability in America: https://everybody.si.edu/
– Access to resources often comes through technology
– Communication, Transportation, Medicine, War
Senator Harkin Delivers Floor Speech in American Sign Language Upon Passage of the ADA: https://www.youtube.com/watch?v=BomPo6fPOOo
ADA History Playlist: https://www.youtube.com/playlist?list=PLhUAlIEq4gbqCK_3_ls2K2Rtiq6hPumHa
The ADA at 25: Promise, Progress, Opportunity U.S. Senate Bill Sponsor Hon. Tom Harkin https://www.youtube.com/watch?v=yToAav3qqBU
National Center on Health, Physical Activity and Disability (NCHPAD): Real People, Real Stories: Celebrating 25 Years of the ADA https://www.youtube.com/playlist?list=PLwMObYmlSHaNT-gke7PoQqkc_k22dYqN5
What has changed since the ADA was passed 25 years ago? https://www.youtube.com/watch?v=mW4hB2hcPBM