1. I am a human being.
My diagnosis is just a label that tells part of my story. Yes I have a disability that makes it harder to do some things. My disability also gives me a unique perspective that I wouldn’t have without it.
2. Just because I use a wheelchair…
doesn’t mean I know everybody who uses a wheelchair, or that we should meet because we’re sure to be friends. When I went to college I had another person who used a wheelchair declare me his mortal enemy. I’m still not quite sure why.
Everyone is unique. Even though two people share a disability which gives us something in common on the surface, I promise we’re very different people underneath.
3. Please don’t think my disability is the most important thing about me.
I’m an introvert. I like science fiction. I like to read and write. Stories are my passion. I prefer a day at the movies to going outside. I prefer to socialize with people in a one-on-one basis.
4. I wish people wouldn’t talk to each other about me when I’m in the room like I’m not there.
It’s not rude to ask me about my disability. It is rude to assume that because I’m in a wheelchair it’s OK to be asking people questions I can answer myself.
This happens a lot in doctor’s offices. A new doctor will come in and start asking my aide questions about my medical conditions.
Talking around me instead of to me is the fastest way to really annoy me.
5. Please don’t say, “When I look at you I don’t see your wheelchair.”
I know you’re trying to say something like, “your disability isn’t important to me.” But when you say, “I don’t see your wheelchair,” I hear, “Your wheelchair makes you less than human.” And I know that’s not what you mean to say. ??
6.I wish crawling were more socially acceptable.
For me crawling isn’t painful or humiliating, it’s simply the safest and easiest way for me to get up a flight of stairs when there is no elevator. Offering me a piggyback ride isn’t safe or dignified for anyone. Having a group of people carry me up a flight of stairs in my chair isn’t really safe either (although I did it many times in college.)
One of the nicest things you can do as my friend is let me crawl up your stairs.
7. One of the hardest things to deal with is feeling excluded from things.
Once when I was little my friend invited me to his birthday party at Applebees, which I thought was really nice. Until I realized that they were going to have ice cream and cake (the best part of the party) back at his place and I wasn’t invited because his parents were afraid I’d hurt myself at their house and they’d be responsible.
Another time I was planning to go to a movie with some friends, until they realized my chair wouldn’t fit in their car and they went without me, and blasted all over facebook how great the movie was. That felt super crappy
Look, I know there are places you can go that I can’t. There are going to be times when you don’t invite me to things because the logistics don’t work out.
All I ask is that you consider my feelings. Talk to me about the situation first. If you can’t find an accessible party venue, talk to me about it. I might be able to help. But even if I can’t, I’ll know that you thought enough about my feelings to talk to me about it. That’s much better than feeling like an afterthought.
8. Quit using politically correct phrases.
Phrases like “Disabled means Differently Able,” and “My Ability is stronger than my Disability,” and “You’re handicapable!” all miss the point.
Every single person on the planet has strengths and weaknesses. We all have things we’re good at, and things we struggle with. In this way we’re all differently able.
My abilities aren’t stronger than my disabilities. My abilities are different than my disabilities. And all of them work together to make up a small part of who I am as a person.
Anyone who uses the word “handicapable” is too focused on my disability and how they think I feel about it to ever be able to make a genuine connection with me.
Again, my disability is a diagnosis, that tells part of my story, and not the most interesting part. If you want to know my abilities, ask me. As long as you’re genuinely interested in learning about me I’ll be happy to answer.
9. My disabilities are not something I need to overcome.
My disabilities are a part of my life that has shaped who I am. If I could wave a magic wand and take away all of my disabilities instantly, they’d still be a part of me because they helped make me who I am.
10. Most disabilities aren’t visible.
There are many conditions both physical and mental that you can’t see just by looking at someone. Invisible disabilities are often the hardest to cope with because if people can’t see a disability, they often underestimate how much effort it takes to cope with it.
11. Accessibility is a big deal. It’s something I have to consider whenever I travel anywhere.
Even though it’s 2017, and the Americans with Disabilities Act was passed in 1990, there are still a lot of places that aren’t accessible.
Any building built after 1990 has to comply with certain standards to make it accessible. And there were new standards passed in 2010. But there are still exemptions. The most frustrating one is the idea that a business only needs to make themselves accessible if it’s “readily achievable” which means “easily accomplishable and able to be carried out without much difficulty or expense.”
This allows more places than you’d think to pay lip service to accessibility without actually being accessible.
12. A business isn’t really accessible if I can’t use their public bathroom.
I’ve been in many bathrooms where the bathroom stall is too small to fit my wheelchair.
I’ve been in some bathroom stalls where the stall was made too small because of the grab bars put into the stall, meaning I have to stand up using the grab bars and leave my wheelchair outside the stall, go the bathroom and then try to get back into my chair from when it’s sitting outside a stall that’s too narrow for it. Not fun.
13. A place isn’t accessible if the ramp is too steep.
Under most circumstances a ramp should have a slope of 1 inch of rise to 1 foot of run. So if you’re building a ramp to a landing that’s 2 feet high, the ramp should be 24 feet long. This is so it is easy for me to push myself up the ramp and it’s easy for me to control my descent down the ramp. If the ramp is too steep it’s dangerous for everyone.
14. In order for a crosswalk to be accessible there need to be sidewalk cutouts on both sides of the street.
If there aren’t curb cutouts on both sides of the street I can’t safely cross the street. And if I don’t realize there’s not a cutout, I’m stuck in the street until I turn myself around and get back on the sidewalk. It’s a very dangerous situation. I was actually hit by a car one time while trying to cross the street.
15. A lot of people think being disabled is the worst thing that can happen to you…
I love my life.
Sure, I have bad days and there are times where I wish I could go places that aren’t accessible. There are times when people have been mean to me. I’ve been bullied, and I’ve had more than one girl say they don’t know how a relationship would work with someone in a wheelchair. None of that was fun.
But I once sat onstage at a Pussycat Dolls show in Vegas because nobody told me I had to move. (The venue was all one level. The “stage” was behind a velvet rope. It was my first time in Vegas and I got on the “wrong” side of the rope by accident. When I go to amusement parks like Six Flags and Disney World, once I get on a ride I’ve been able to stay on the ride as long as I want, because it’s so hard for me to get on and off.
And the best part of being a disabled person is that 9/10 people want to like you. They want to help you. They want to make your life easier if they can. When I went to college, at least twice a week one of my shoes would fall off because I couldn’t fasten my Velcro shoes tight enough. In the hundreds of times this happened over four years, I only had one person ever say they weren’t comfortable helping me because they didn’t like touching feet. I just asked the next person. It wasn’t any kind of big deal.
To know that the vast majority of people on the earth are looking for a way to be helpful and kind is an incredible gift that I wouldn’t trade for anything.
16. There are as many disabilities as there are people in the world.
Everyone has something that is hard for them to do. Everybody is human. Nobody is perfect. The most important thing that everybody needs is acceptance of their humanity, and the love of their family and friends.
Everybody has something they struggle with. Some days you’ll be able to help me with my struggles, like when I lost my best-dog-friend Trucker. Some days I’ll be able to help you with your struggles, like when you need someone to talk to about things going on in your life. Some days we’ll both be too wrapped up in our own problems to be able to help anyone else. But no matter what, we’re friends because we care about the person underneath the labels that society uses to define, categorize and separate us.
Thanks for taking the time to read this blog post. I tried to mention the most important stuff and still keep it relatively short. If you have any questions please feel free to contact me at [email protected]
This post was inspired by a conversation with my friend Marzi Wilson connect with her in the links below.
https://adata.org/ — is the best website I’ve found on the Americans With Disabilities Act
https://www.facebook.com/introvertdoodles/ — Check out Marzi’s Facebook Page
http://introvertdoodles.com/ — Check out Marzi’s website
Buy the Introvert Doodles Book
Order the introvert doodles activity book