When I was 16 years old, I was accidentally shot in the back and paralyzed from the waist down. I remember approaching my ‘rehabilitation’ with vigor – looking forward to the date I would be released; I wanted to resume my life. The rehab process took a few months; near the end, I was sitting on the absolute top floor of the hospital, looking down on the streets below – and suddenly, it hit me. I was going to be released, but the world below was now different and no longer made for me. Going home wasn’t going to make my disability disappear. To say it was a stark, lonely moment would be an understatement.
While I knew the world would be different, I did not appreciate the depth of that difference – how complete and utter it would be. Nor was I going to give in to it – even then, I bristled at some of the stereotypes. I wouldn’t wear the lap belt to keep me from falling out of my chair – I had played sports all my life, and the idea that I couldn’t keep my balance right away was ridiculous to me. I wouldn’t use ‘invacare’ brand wheelchairs, because of what that prefix meant to me. It was insulting.
I didn’t know it then – but what I was sensing and what I felt coming for me like a beast in the night was varying forms of Ableism – defined as the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior.
Ableism can take many forms. After I was shot, I tried going back to high school, but people would just grab my chair and forcibly roll me around like I was their toy. It embarrassed me, but I knew they were just trying to relate to me or make things easier, so I didn’t get angry about it. But that and other issues, such as not being able to access the bathroom properly, bothered me enough that I left school and received a GED.
I graduated from college with a decent GPA (3.32) and a plan: I wanted to be an attorney. I went to get a checkup before leaving for SMU law school, and my doctor asked me what I’d been up to. Bear in mind, this is a man who had been my doctor for years, both before and after my injury. I said I just graduated from college; before I could tell him I was leaving for law school, he asked me if I was going to ‘fix phones.’ By that he meant, was I going to take one of the ‘disabled’ jobs at Goodwill or some such. He completely diminished all my accomplishments, all that I had overcome, all of my potential – based solely on my injury. To experience such from an educated, professional person and not some dipstick on the street made an impression on me: it showed me how much better I would have to be than ‘normal’ people to be taken seriously.
Ableism also isn’t just about attitudes and perceptions – it also manifests itself in physical reality. I would like to say that the passage of the Americans with Disabilities Act fixed all of that – but it didn’t. Relatively recently, in fact, I took my dog to the vet and discovered they had no ramp – so every time I went, they basically had to treat me like an industrial dolly and have someone pull me, back tires first, up their steps and into their office, where there was an additional steep incline. One fine day they managed to drop me during this process. So that’s where all my understanding and goodwill left me – I didn’t want to be disruptive; didn’t want to complain about t heir lack of access. And now I’m wheels up, flat on my back, banging my head on the ground.
Parents of special needs children/adults face many of those same issues in various forms: The fear that comes with embarking on that journey; the conflict between demanding what’s necessary and not wanting to be a crybaby; wanting personhood for your loved ones without pity; the conflict between not wanting to be identified by a disability and the recognition that you will need some special accommodations.
My recommendation for treading that ground effectively is simple: Understanding what is Ableism and what isn’t. I will admit that my definitions differ somewhat from most tracts you will read on the subject. For example, I don’t expect people to plan around me. If they want to have a party at a venue that is inaccessible to me, I don’t expect them to change their plans – it isn’t my party. While it would be nice of them, it is not my expectation. If someone asks me an intrusive question about my disability, I am happy to answer it and do not consider it an offense.
I think many of those occasions that seem rude on the outside – things like not making eye contact, talking around someone with a disability, shifting to the other side of an aisle so as not to get too close, etc., are often the result of ignorance rather than malice: they want to interact, they want to be friendly, but they just don’t know how. And a large part of helping them know ‘how’ is to not manufacture outrage over perceived slights; rather, it is to help them understand the intricacies of whatever disability you or yours possess. In my case, people see a wheelchair and think oh no, he can’t walk! When not walking is the least of my concerns. Once they know all there is to know about my disability, they don’t feel awkward; they know what I need to go to a given place (bathroom space, reasonably level ground, accessibility, etc). And it helps all of our interactions be what we want them to be: Normal. I’m not a hero for surviving; nor am I pitiful because I have a wheelchair. I’m just a person, like everyone else. Like you and your children.
In encouraging you not to manufacture outrage I am not saying that outrage isn’t sometimes required. It is important that parents and caregivers of special needs people advocate for what is necessary. You don’t want to be like me at the aforementioned vet – putting myself in danger because I was too polite to request what is required by law. And while I do think many things cited as Ableism are more awkwardness and ignorance, there are many aspects of Ableism that are every bit as egregious as racism, sexism, ageism, or any other negative ‘ism.’ Some people will think you are broken and want to fix you; some will talk to you like you’re a toddler; some will think you are a medical liability and will hire someone else to avoid dealing with any potential issues. Others will automatically think you don’t want to work – that you somehow enjoy living on the poverty level subsistence that is disability.
Some things to understand as you navigate all of these fine lines and distinctions: It is not being ‘whiny’ to ask for the accommodations necessary to have equal opportunity. There is no shame in asking for resources necessary for day to day living. It is not entitlement to demand the services that are in place to help you. It is not being overly sensitive to recognize when someone is diminishing you or your child’s abilities based on their preconceived notions of what they are and can be.
Ultimately, as a disabled person, I do literally everything I can do on my own. I will push my own cart; I will change my own tire. I will do all that I can because I feel it is dangerous for a disabled person to depend on help – help isn’t always available. I also understand that I am fortunate to be able to do those things; mainly I am speaking about reaching full potential, whatever that may be. That said, I’m not too proud to admit that I can’t do everything. Being an advocate means understanding what can and can’t be done on our own, and acting accordingly to make sure all needs are met. Sometimes it is easy – sometimes it isn’t. Sometimes a little understanding and explanation can remedy a problem; other times, outrage is necessary to be heard. Being able to do both is a skill disabled people and/or their parents/caretakers will need to develop to advocate effectively.