Living with a disability is hard. Often, disabilities are invisible or misunderstood by people that don’t experience them. Pulling together my experiences, here are 5 things I’ve found about disability that most people don’t understand.
1) Someone Else Has It Worse
This is probably my biggest pet peeve with my disability. People will tell me that I don’t have it that bad or that someone else has it worse. Neither of these are helpful to anyone at all. Just because someone may have it worse doesn’t mean that I am struggling any less. Someone else being fully paralyzed does not erase the difficulties I have with my hand becoming paralyzed for an hour. Life is not a contest. Stop trying to make it one.
2) Oh but this (other task I see as similar) was fine
If you have a disabled person in your life, you may find that you think they are okay to do something when, in reality, that thing is an enormous struggle. A good example is that for a recent family trip, the idea of going to the zoo and the idea of going to a farm were both tossed out. Most people won’t see a difference between these two tasks. You are going to do stuff with animals and maybe plants and have lots of outdoor activities. But when I look at the tasks, the zoo seems doable, and the farm seems like it would be extremely challenging. I would venture that I couldn’t do the farm without help. Why? Because the zoo takes more measures to be friendly to people with disabilities. They have more paved roads instead of gravel paths. This can make a difference to people who walk with help or people who use wheelchairs as gravel is just harder to manage than a paved road.
Different days can also play a factor. For instance, someone may have a therapy appointment on Tuesday and need a break after where Wednesday, they would be perfectly fine to go out. Different events take up our limited energy and sometimes just how the week gets to us can play an impact. If you are looking to spend time with someone with a disability, be willing to listen and accommodate their needs.
3) Why can’t you just eat this?
I get this belief. I ask myself this belief every time I want to have fries. Here, I’d rather destroy the fact than the belief but since I can’t, I want to destroy the belief that I should just be able to eat something. I can’t do peppers, eggplants, tomatoes, or potatoes without paying for it in pain. Combing through the menu to find something I can eat at a restaurant is a pain. When I ask for alterations that aren’t hard to make and the restaurant doesn’t honor them, it can destroy my ability to eat a meal. Trying to force ketchup on my hamburger makes it so I can’t eat it. Neither of us enjoys that fact, so don’t be the asshole who tries to force things on someone else. Sometimes there is an excellent reason that they aren’t eating what you are making.
4) Oh You Just Did (Insert Particular Activity Here), I Guess You Aren’t Actually Disabled
I hate disability policing. Yes, there are a few people in the world who abuse the system and ignore disabled needs. But more often than not, disability policing hurts disabled people more than it helps. When people question our disability, it’s exhausting to add proving our disability (especially if it’s hard to see) to whatever task we have set out to do. If we have a wheelchair, it is an expensive tool we likely paid for on our own. If we stand up from a wheelchair, that doesn’t mean we are faking it. I use a wheelchair when I go out for day trips although I can technically walk. The reason I have the wheelchair is that I have more strength in my arms than my legs. When I get tired, I have strong tremors in the fatigued body part or seizures. Using my arms to get around instead of my legs makes it so I can do something that requires a lot of walking without getting as tired. I paid a good amount of money for a wheelchair so I could go out and do things with my family and for my work. I don’t need you scoffing at me because I stood up to look at a trinket in the gift shop before settling back in my chair and wheeling off to the next event. It’s none of your business what I use to make life accessible for me. Stop judging!
5) Oh You Don’t Need (Insert Accessibility Device or Technique Here)
This ties back into my last point. With my wheelchair, I can go to writing conferences and do day trips with my family. With my earplugs, I can go to soccer games and rowdy family gatherings without having a seizure. Having little things that help us handle a situation can make or break if we can do it at all. Without my earplugs, I wouldn’t be able to handle the soccer game or the yelling kids that are my nieces and nephews. Without my wheelchair, I wouldn’t be able to go to conferences unless they were virtual or spend time with my family when they are going out to interesting places. The simple little things we add to our lives allow us to be present and enjoy these events. If you really want to do something with a disabled person, look into ways that you may accommodate them taking part. Some activities aren’t possible anymore, but you can have more options when things are accessible.
6) You Are So Strong/Brave/Admirable For Doing (Insert Normal Thing Here) With Your Disability
Remember how telling me that other people having it worse doesn’t change that my struggle is a struggle? This is the other side of that extreme. People love to tell me I’m so brave for building a writing career while dealing with my disability. For me, it was the next logical conclusion. I wasn’t able to go back to working with kids as I had done before my disability and I suddenly had time that needed something to fill it. When I was a child, I wanted to be a writer, and I had things I needed to say and teach. I started writing to get those things out of my head. I joined a writer’s group so I could talk to people outside of my family and feel less isolated. The writer’s group provided business advice and publishing opportunities. I decided after I got published in a few of those that I could make some money by putting my effort in the right places. With that, my writing career was born. It felt perfect as I could work when I felt good and I could take it easy when my symptoms were flaring up. My computer and notebook also don’t care if I have a seizure in front of them where a small child or their parent may be terrified. People think your life stops when you become disabled. But the truth is it just changes your life. You may need to do things differently, but disability doesn’t have to stop your life from having meaning. Don’t praise people for having a life. We can lift each other up in better ways.
7) Well, since you can do it, I can do it
Forbes Magazine did an entire piece about inspiration porn, the idea behind this point. Check it out if you want to see more specifics of what inspiration porn is. I’m going to assume you know what it is if you are still reading. Just because I adapted and have a life, doesn’t mean that an able-bodied person should take it as a reason that they can do whatever they want. Their struggles are still a real problem for them. Hmm, sounds like my first point about competition. Trying to use my disability to motivate yourself is just hurtful unless you are trying to make life with my disability better or easier. I’m a real person with skills, thoughts, feelings, and struggles of my own. Boiling my life down to my struggles with my disability is demeaning and exploitive. Stop it!