I’ve been called many things in my life. Some good, some bad. I’d love to hold with me some kind words and comments, while others I’d like to push away. Our identities are so integral to us that we spend years carving them out, just for them to change again. Yet, there are some elements we can’t change. One of these, for me, is my disability. It has shaped me since birth and, yet, I’m often shocked by how little people know or understand disability. If you’d rather not end up like those people, you’re in luck. I’m disabled, here’s what I want you to know.
- I may not look „disabled“, but I am. Besides— what does it mean to „look disabled“? Just because I am not usually a wheelchair user or have a visible impairment does not mean that I am not disabled. Disability does not look like one thing. It is so diverse and, even within one condition, its impact can present in a variety of ways. The whole notion that there is a look to disability is, quite frankly, abhorrent and serves to do nothing but perpetuate stereotypes around disability. It often causes disabled people like myself to develop complex relationships with their bodies.
- I don’t owe you an explanation. As someone with an invisible disability, people often ask me why or how I’m disabled. There is this expectation, this love for secrets (and sometimes gossip) that leads everyone to feel entitled to our medical history, especially if the disability is not one typically obvious. You are not our doctors. While disability is nothing to hide and be ashamed of, telling someone about your disability can often make you vulnerable and will take time, especially if it’s a result of trauma. If you’re never told, that’s not a big deal and it’s not personal. You’re not entitled to that information.
- My wheelchair is an extension of my body. While I am not usually a wheelchair user, no one has the right to touch my wheelchair or mobility aid unless they have my express permission. They are our lifelines for independence. Someone else using them or controlling them without permission infringes on these freedoms and is a breach of privacy.
- Accommodations aren’t shortcuts. They level the playing field. I‘m sure many of you read the Oxfess. The author complained about extra time and how it simply accounts for laziness and is effectively cheating. This could not be further from the truth and comes from a place of ignorance of disability and the reality of being disabled.
- Being disabled can be lonely in an able bodied world. This world was not made for disabled people, it’s inaccessible. Oxford being a case in point. Even besides this, being disabled can be draining. It often feels like no one really understands you and what you’re going through. I’m so grateful for the community and friends I have found here who understand this and who always have my back, but things are difficult sometimes and a fluctuation in the severity of your disability can throw off even the smallest things. Which makes a supportive community all the more valuable when things get tough.
- Consider your language and the right to self-describe. So often people tell us what we can and can’t say and try and define our disabilities for us. First and foremost, we are human beings, who deserve to be treated with respect like anyone else. Our struggles should not be inspiring to you, we do not exist to be objects of pity or comparison.
- Just because I am disabled, doesn’t mean the only thing I am is disabled. My disability is a part of me and my life. Nothing will ever take that away, but I’m so much more than it too: I’m kind, loyal, I love Shakespeare, I enjoy a debate, I’m obsessed with theatre. I may be disabled but there’s still so much more to me.
I am disabled, here’s what I want you to know. It’s not my responsibility to educate you or inspire you. It’s your responsibility to try to understand and break down your biases. Disabled people, disabled bodies and disabled minds are and have always been beautiful. At the same time, disabled people have always been more than disabled. We are caring, capable, determined and human. We laugh and we cry and we pick ourselves up time and time again. I am proud of what my disability has taught me, but I know who I am and that’s so much more than disabled. And if I’m ok with that, you should be too.