Confronting Ableism as a Disabled Person
By Christine Miles
I’ve never been shy about the fact that I’m incredibly proud of my identity as a disabled woman. There’s no hiding it. It’s in my Twitter handle for goodness sake. I own it. As I enter the last year of my twenties later this summer, I have been reflecting on my identity quite a bit. Honestly, I think I owe that in part to Sean and his writing – which you all get to read my perspectives on. In combination with other things, it’s gotten me thinking about how my disabilities are pretty awesome. Ok, fine, NOT all the time, as pain and feeling like a walking pharmacy is pretty stinky, but still. I have pride in raising awareness and helping others see the positives of disability. Ableism, and especially internalizing it, is a pretty nasty beast. The rest of this post will show the ugly side, and would likely offend the people I refer to because of how hard it is to confront it. I hope by sharing both ableism and pride, readers will learn something or think more critically about disability.
I was raised with an unconscious idea that using a wheelchair made you lesser, or that proudly identifying as disabled wasn’t something you did. I’m sure other people born with disabilities can relate to the idea that somewhere in early life someone mentioned to family that the potential of never walking was a fate worse than death. I’m fairly certain this conversation happened in my own family — what if she can never walk?! How will she be normal if she can’t walk! For the record, I walk just fine- other than my body moving through space in a way that is different to most. These days, I see friends in powerchairs zipping along and wish my legs could keep up! 🙂 However, this is how stigmas start, how children struggle with disability identity, and why I still know adults who would give up their disabilities if it were possible.
My left arm likes to, as best as I can tell, unconsciously bend and hang in mid air like a “teapot.” I think this is pretty common in people with CP, as I know others whose arms do this. When I was young, I was constantly told “put your arm down, you’re not a teapot/coat hanger.” Only now do I see the unconscious and veiled ableism in that statement. What was likely intended to be a statement surrounding my lessons from PT, comes across to me now as “you can’t leave your arm hanging like that! That’s not normal!” That’s where the idea of internalized ableism comes from. Even today, I’ll occasionally catch my arm bent, and the voice of that person telling me to put my arm down runs through my head. It’s hard to deal with. I think I’m beginning to break the habit though, as I recently saw a friend standing like this and I wasn’t thinking he should put his arm down. If it’s not that, it’s those times I tried to hide my CP by trying to change my walk. Which, naturally, didn’t work. My gait felt like a target on my back. If it’s not feelings about CP, it’s what friends called “disability hierarchy.”
The idea of this hierarchy is pretty simple. Because I’m not cognitively affected by my CP and I walk, I’m viewed as “better off” than friends with CP who do have academic struggles, use a chair, or need constant support. There’s this idea that intellectual disabilities are “worse” than others, or that people with disabilities like ADHD or depression are “not as disabled.” I’ll admit, with some unhappiness about it, that there are portions of this that I used to agree with. This is because my idea of disability used to be limited to conditions you typically think about- CP, autism, Down’s Syndrome, multi-ortho, d/Deaf, blindness etc. Disability wasn’t “that other stuff.” What I find troubling about this is how easily, I, as a disabled person, could be influenced to have ableist beliefs. Since then, I’ve discovered by being exposed to the whole picture of disability that the hierarchy is garbage. ALL disabilities are valid, those of us who identify are all disabled, but it looks different for each of us.
There’s an interesting project about implicit bias that has a place in this discussion. Implicit bias is the idea that “attitudes or stereotypes that affect our understanding, actions, and decisions in an unconscious manner.”. With that in mind, some universities have come together to create Project Implicit which is a series of tests which measures implicit bias to different situations such as race, gender, sexuality, gender and career, weapons and race, and even Donald Trump! It is probably fair to say there are many implicit biases that make up ableism and the disabled experience/interpretation. I’m glad there are tools like Project Implicit that are available to educate about bias. Hopefully in conjunction with other forms of education, the role of bias in ableism will help change the conversation. I don’t think it will surprise anyone to learn that I have a bias towards disability. The tests are fascinating though, and worth some of your time if you are curious about such things.
Moving from ableism to pride, a while ago, I was reading a letter from a family member in relation to my disability. This is the same person who made the comment about my arm. “I try not to think of [her] as disabled.” It read. Hearing this when I was younger felt positive, like I was “normal,” or something, in spite of this CP thing. All I felt reading it that day was sadness, and a strange sort of betrayal. I cried as I wrote back demanding to know where this came from and why they thought saying such a thing was ok. I know it’s a very literal way of thinking, but being born with a disability means I wouldn’t be who I am without it. I’ve learned to be very proud of that.
These stories of growing up disabled show me where I may have learned insecuritIes about disability. Add to that general peer pressures/challenges, bullying, and adolescence, and it’s a wonder I accept my disability as a point of pride at all.
So, how did I get to this point? Becoming involved in the disability community really changed my life. I started out volunteering with a disabled art class put on by a local nonprofit. There I felt truly comfortable because I was surrounded by people I related to. I eventually worked a stint in special education preschool and learned that was not the job for me. Though, witnessing a little boy with developmental disabilities dancing with and engaging the little girl who was blind will always be a highlight. One thing I can take from that time was reading a memoir by a woman with CP; Harilyn Rousso’s Don’t Call Me Inspirational. This was a defining moment for me in a way. She was in a helping profession, was an advocate and activist, and made art. She felt like me. In many ways, her story could’ve been mine. My favorite thought about disability comes from her book:
Having a disability has helped shaped some important parts of my identity that I value – like being open to differences of all kinds in other people (I’m often more open to others’ differences than my own), like being a fighter for social justice (any type of prejudice or discrimination infuriates me), and like having a knack for creative problem solving (you have to become creative when you can’t do things in the usual ways).
THIS. This was me. This was how I felt. The lightbulb went off. Having a disability means pride in those types of things. After happily leaving the preschool, I moved onto a job with disabled people and youth. That immersion into disability culture only took the bubbling feelings of pride and made them explode. Suddenly I was having discussions about the quirks of disability, and other people did the same. I owe a lot to my friends and peers. They helped me see that disability can be cool and inspire my advocacy/activism. These days, I find a lot of community with all the folks on Twitter for the same reasons.
If you’re disabled, and my story feels like yours, even a little, the best thing you can do, in my opinion, is get involved and immersed into disability culture. The little things that happen suddenly don’t seem so weird, you start to feel like yourself, and can begin to see disability doesn’t suck all the time. If you’re unable to be involved in an in person setting, I highly recommend Twitter or social media. I’ve learned about different diseases, disability hacks, different chats, and issues through social media. Yes, we all rant a lot about healthcare, Trump, and the like, but we also share stories, tips, and life.
I don’t want kids, youth, or even adults to feel the weight of internalizing ableism, and of feeling like disability is something to hide or hate. They don’t necessarily need to be bursting with pride, but I’d love to see more positivity or acceptance. To get there though, I believe, starts with us. If we can’t accept our disabilities, how can we expect others to?
I’d love to hear your thoughts – using #EnlightenNotInspire and have you join us on July 14th at 6pm pacific to chat!
Basics on implicit bias
Interview with Harilyn Rousso from 2014 by Rooted in Rights