- First and foremost, don’t assume someone in a wheelchair has a mental disability. Like me, there are many, MANY people in wheelchairs who are completely aware of what is going on around them and chances are they understand exactly what you are saying about them even if they are physically unable to respond.
- Most people in wheelchairs are not deaf. I don’t know why, but a lot of strangers have this innate need to speak loudly and slowly to me when they first meet me. It’s true that I do have a little hearing loss, but not to that extent!
- Don’t lean on someone’s wheelchair without asking. That’s just obnoxious. My wheelchair is an extension of myself, and when you lean on it, you are getting in my personal space. It’s kind of like if someone leans on your shoulder without your consent. It’s very annoying.
- Do not EVER try to drive my chair with me in it or without my permission. Again, it is an extension of myself, and it makes me very nervous if someone else is controlling it while I’m still sitting in it. And really, don’t ever attempt to drive one at all if you don’t know what you are doing. It takes A LOT of practice to be able to adeptly drive an electric chair, and moving one without knowing what you are doing can be dangerous. I have seen so many of my family and friends who halfway know what they are doing run themselves over. My mother still runs herself over on occasion, and she is almost as good as I am at driving them!
- This may be surprising, but it’s kind of weird when people squat down to talk to me. I’m used to looking up (pun intended) at people to talk to them, and it’s a normal thing for me. When people squat down, it’s not only hard to look down at them, but it also feels a little condescending in a way. I realize that most people don’t mean it like that and I never say anything about it, but it’s a little weird from my perspective.
- If you are a nurse, doctor, or are any sort of medical professional, DO NOT assume you know everything there is to know about someone’s condition just by looking at them. I can’t tell you how many times I have heard, “Oh, don’t worry, I’m a nurse. I know all about OI. If you get hurt I can help.” First of all, the likelihood that every random nurse has interacted, let alone seen a patient with my type of OI is incredibly low. I’m sure they go over what Osteogenesis Imperfecta is in nursing school, but from what I have heard, it’s one line in a textbook. Even if you are an orthopedist, you have no idea how I work, how I specifically deal with broken bones. I have a good friend who was a nurse, and she says I treat broken bones completely oppositely of how they are taught to in school. It’s what works for me. Those in the medical profession tend to assume they automatically know what is best for me because of their education, when in reality they don’t.
- This should go without saying, but don’t stare at people in wheelchairs. It absolutely infuriates me when I catch adults doing it, and I usually try to freak them out by staring back long and hard. It’s actually quite entertaining watching their reactions. Kids are different. I get that kids are curious and sometimes just don’t know better, but if you are a parent and catch your child staring at a wheelchair user, don’t just drag them away fussing at them or ignore it. Use that situation as a teachable moment and explain to them what’s going on. Most of the time the person in the wheelchair would be happy to say hi to your kids and help them understand why they are the way they are. It’ll make their reaction more appropriate the next time they encounter someone with a physical disability.
- You can’t just pick up my chair. When there are accessibility issues (like a lack of ramps) in a public venue, I have had countless people offer to simply pick up my chair and move it to wherever I need to go. Up a flight of stairs, over bumps, up a step, etc. As kind as that is, this wheelchair weighs 400 pounds and costs $78K. I realize this offer is never meant as rude, but it comes from a place of ignorance, which is what I am trying to minimize with this blog.
- Don’t say things like “You’re speeding in that thing!” or “Watch out or you’ll get a ticket!” It’s really not cute or original, and every wheelchair user has heard it a gazillion times. It does not score you points, trust me.
- If you pass someone in a wheelchair and have questions, politely ask them what you are curious about. Chances are they, like me, want to educate people and would be happy to answer any questions you may have. I personally would rather someone ask me what disease I have, how long I’ve been in a wheelchair, how many bones I’ve broken, or how old I am rather than them making the wrong assumptions. I think most wheelchair users probably feel the same.
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“Hashing It Out” with Jane Hash: An Activist With Osteogenesis Imperfecta
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Susan T.
You continue to educate me- always!
How proud I am when the “student” becomes the “teacher”- keep blooming, Katherine!
Rhonda
#6 and #8 especially had me rolling! I am glad that I am “relieved” from #6 duties….and yes, #8 that chair is really heavy!!
Dionne Viosca
Love your blogs ~ you are so insightful and funny too. I can picture you staring back at some dummy who’s staring at you! Way to go, kiddo!
Janet Schneider
Katharine, I can’t tell you how much I am enjoying your blog (I just found it)! I work in the NICU and PICU (as a respiratory therapist) so I have worked with all levels of OI patients yet I learned a long time ago to respect the fact that anyone with a chronic condition knows much more about themselves and their condition than we (meaning the medical community) do. I often see medical staff l”lecturing” patients and/or families when they are failing to see that obviously what the pt is doing is working for them! Your mother is my vet because I was drawn to using “Natural” treatments/lifestyle for myself and my pets. Your blog accomplished exactly what you intended, and more. I’m definitely buying the book!
Katherine Klimitas
Janet SchneiderThank you so much!!!