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Making Accessibility More Accessible

How disability advocacy benefits everyone, including you

Photo: Josh Appel

Life is made up of tension and release. When we're stressed, we try to relax; when we're sick, we wait to get better. This applies physically, psychologically, emotionally—any way you can think of. But while tension and trouble is something anyone can understand, the release bit looks different for everyone. For example, how do you experience catharsis when the thing that's causing you angst is permanent, like full-body paralysis or a dissociative disorder? How do you find peace when you're told that you just have to "wait out" something that probably won't ever end? When you're desperate to experience reprieve from a permanent disability, there are two options: either you need to change—which is impossible—or the world around you does. 

People who live with disabilities often feel useless for being unable to do what others can. We live in a world where worth is tied to productivity, so those that can't work or function "normally" are often thrown to the wayside and labeled as useless. When they do try to work, getting accommodations for their disability can feel as productive as trying to break reinforced glass with a BB gun. We've designed our world in such a way that getting accommodations for disabilities often feels cumbersome, embarrassing, and unnecessary, even when it is entirely necessary—the good news is, able-bodied advocates have the power to change that, and what's more, it's probable that what progress we do make is likely to benefit all of us, disabled or not. 

How? Well, up to one in four Americans are already seriously disabled, and five percent of American adults experience temporary disability every year (occurrences such as being pregnant, breaking a leg, or having an arm in a sling all qualify as temporary physical disabilities that make life more difficult for those that experience them). Physiologically speaking, severe migraines, persistent panic attacks, and traumatic brain injuries (TBIs) can also qualify as temporary disabilities because of their power to seriously incapacitate people. What if they didn't have to, though? What if we lived in a world that had spaces and systems that were designed specifically for accommodating disabilities, permanent and temporary alike? And what would that look like?

To answer some of these questions, I spoke to a friend of mine named Lauren Gidley. Lauren has fibromyalgia, a chronic nerve disorder that causes near-constant physical pain. "It's really just a coin flip," she told me. "It's a gamble on whether I'll be able to walk that day, hold a pencil, carry books... one of the many symptoms is having dizzy spells, too, so I have a habit of falling over, running into things, stuff like that—needless to say, it's not easy to deal with." When asked if she felt shame and embarrassment regarding her disability, Lauren gave a definitive yes: "I definitely need a walker at some points," she said. "I definitely need a cane. But I don't feel comfortable going into a school building with a walker at eighteen—it makes me feel weak and uncomfortable, because I can't stand the thought of people judging me for something I can't control. So I just suffer." 

I also wanted to know if Lauren had ever had experiences where she had advocated for herself or her needs and the people around her hadn't adjusted. She knew what I meant. "I've been attempting for a while now to switch from using a pencil, which is damaging to my nerves, to having all of my assignments online," she said. "I actually attempted to set up a meeting about this four months ago and have yet to hear back about it." What was that like for her? Exhausting, she said. "It's exhausting trying to explain myself all the time." 

That, I think, is a fair point—it's undeniable that we have a limited awareness of disabilities as a culture, which makes it difficult to accommodate for people. This is where the frequency of temporary disabilities becomes helpful. Not a lot of people know what fibromyalgia or functional neurologic disorders are, but everyone's had experience with a broken bone or short-term impairments after a surgery. There are also entire groups of people who are more prone to the occurrences that require accommodations: dancers or athletes, who are more likely to be seriously injured; women over thirty-five, who are more likely to have birth complications; and the elderly, who are more likely to experience post-surgery problems and issues during surgery, to give a few examples.

Because of the frequency of these situations, it's possible to get through to able-bodied folks about the importance of disability advocacy, since whether or not they realize it, it's likely that they've had experience being disabled at one point or another in their lives. When they recognize and remember the difficulties of that experience, people are more likely to sympathize with and advocate for permanently disabled people, who often have trouble advocating for themselves—and for good reason. Along with assigning lesser worth to those with disabilities, we also tend to take disabled people less seriously, especially when they're mentally impaired. 

Yet some of our most beloved thinkers, performers, and businesspeople suffered from mental and psychological afflictions—Steve Jobs was dyslexic, for example, and actor Daniel Radcliffe has dyspraxia. Elton John had epilepsy, renowned mathematician John Nash had paranoid schizophrenia, and it's widely thought that the brilliant minds of Albert Einstein, Emily Dickinson, and Charles Darwin were all autistic. Many disabled people from the past would likely attest that their success would have been hindered had the world known of their "problems"—but where would the academic world be if it hadn't had the knowledge and theories of Einstein or Nash? If we think of disabilities as an automatic way of being worth less, whether we think this consciously or not, we're instantly writing off some of the most incredible humans that have existed. And that's not even mentioning the physically disabled geniuses like Stephen Hawking, Franklin Roosevelt, and Frida Kahlo, to name a small few.

Have you ever been temporarily disabled? Have you ever tried to speak up for yourself, only to be shut down because your concern wasn't viable or "valid"? Remember that however difficult those experiences were, chronically disabled people go through these situations every day, and they need help to remedy that—help that you can provide through vigilance, advocacy, and sympathy that spurs action. Having a disability doesn't have to mean that you're going to struggle and work harder than others for the same things; it shouldn't be a death sentence, a problem, or an embarrassment. If we want to live in a world where that's the case, we have to work together to create it. The good news is, if you're reading this, you've already completed the first step.

What will you do to follow through with the next ones?