20 Things Not to Say or Do to a Someone in a Wheelchair

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As a wheelchair user, I’ve experienced quite a varied reaction from the able-bodied public, so I thought I’d share a few things you shouldn’t say or do to those of us who use wheels.

1. “I’m only parking here for five minutes.” 

No, you’re really not. It’s a disabled bay and you don’t have a permit, so get out of my space. I need this larger bay to get my wheelchair out of my car. Move.

2. “What have you done to your leg?”

Why would you ask a stranger such a personal question? It’s extremely rude and intrusive, and why assume I’m using a wheelchair because my legs don’t work?

3. “You’re too pretty to be in a wheelchair.”

Now, that’s a backhanded compliment if I’ve ever heard one. Disability doesn’t discriminate. I can still be fabulous and use a wheelchair.

4. “Can I have a go?”

Oh, of course, I’ll just go for a run while you go for a ride in my wheelchair. No. No. No.

5. Don’t speak to the person pushing me instead of me.

I have a voice, I’m an intelligent person and I can answer for myself.

6. “At least you don’t have to walk anywhere, I’m knackered.”

Yeah, because who would want to walk places and not be in agony?

7. “You’re such an inspiration.”

I never understand this one. How am I inspirational? I’m shopping for food — so inspirational.

8. “I’d rather be dead than in a wheelchair.”

Bloody hell, calm down, it’s not that bad. It takes some getting used to and it’s difficult, but surely living a life with adaptions is better than not living at all.

9. Don’t bend down to talk to me.

I’m not a child. Do you know how patronizing that is?

10. “Oh god, you can walk? What are you using that for then?”

Shock horror! We all use wheelchairs for various reasons; I use a wheelchair due to pain, fatigue and dislocations. I can’t walk that far, I can’t stand for long. Don’t assume that because someone is using a wheelchair their legs don’t work.

11. “How do you drive a car?”

I have an adapted vehicle and my legs work, just not as well as I’d like them to. Don’t look shocked when you see me getting out of my wheelchair and into the driver’s seat of a car.

12. Don’t move me out of your way.

Don’t ever think it’s OK to grab my wheelchair and move me without my consent. If I am in your way, don’t push my chair. Ask me politely and I’ll gladly make some space.

13. “Do you know Dave? He uses a wheelchair, too.”

Yes, every single person in the whole world who uses a wheelchair knows each other. How naive.

14. “I used a wheelchair when I broke my leg. I know exactly how you feel.”

You have no idea how I feel. You were wearing a plaster cast, and others would have been able to acknowledge you’ve suffered from an acute injury. You wouldn’t have experienced ableism or the grief, sadness and acceptance of having to use a wheelchair full-time.

15. Don’t pat me on the head.

Oh my days, do not do this or I will run you over. I’m not an animal; it’s so rude and patronizing.

16. “Your partner must be a saint for putting up with you in that.”

No, he’s not a saint, he’s a normal guy who loves a girl who happens to be in a wheelchair.

17. Don’t lean on my wheelchair.

It’s not worth it. I will punch you.

18. “Bloody hell, slow down or you’ll get a speeding ticket.”

What a comedian. If only your motor-mouth could get a ticket.

19. “You’re too young to be in a wheelchair.”

There’s no age limit. Wheelchairs aren’t only for the elderly; my body is broken and hates me, therefore I need this to live a “normal” life.

20. Don’t take a picture of me when I stand up from my wheelchair.

Don’t assume everyone in a wheelchair can’t walk, and do not take pictures or make memes of disabled people.

A wheelchair is freedom. It means I can go out and do things. I wouldn’t be able to walk around a shopping center; I can barely walk to my car from my house. My current wheelchair is a pacing strategy that helps me do things without excessive pain or fatigue.

A wheelchair can be used for various reasons, so please think because you say something ridiculous.

Author’s note (added Jan. 28, 2016): This post is in no way meant to offend anyone. It was directed at able-bodied, non-disabled people who have said or done these things to me and my friends who are wheelchair users. If someone had hearing difficulties, of course I wouldn’t mind them getting closer to me. Apologies if caused offense; it was not intended. 

Follow this journey at Sarah in Wonderland.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Condition That Makes Words Literally Hurt Me

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I never really thought about it, but recently it hit me hard. It all started with a debate on a Facebook page where one particular word kept coming up. I learned the following things: I don’t understand the meaning of the word, and it is a sharp, red word that makes me dizzy and nauseous

Wait, what!?

Yep, I see and feel words. I always have since I was a child, but only recently did I realize how strongly it affected me. Synesthesia (also spelled synaesthesia) is the official word for it, and it is most likely part of my sensory mix-up caused by my autism.

My sensory mix-up doesn’t stop at words. In fact, it was while I was playing my Grandma’s piano at age 5 that my mum noticed my unusual description of a note being “brown.” I also called sunshine “loud” and had a meltdown in a shop because Mum took me through the “spiky pain section,” more commonly known as the perfume department!

I have lost important points on English writing assignments due to the discomfort of writing “my friends and I” instead of “me and my friends” and failed a math test because the number three gave me a headache. Many meltdowns have been caused because a carer has said a word that hurts me, and I’ve been unable to explain why I have ended up lying on the floor, acting like I have been stabbed in the leg.

It’s not all bad, though. I get good mix-up too. There is something so comforting about words that have diphthongs, such as “ae” and “oe,” which may also explain my strong interest in Dutch. I am a talented (but amateur) musician thanks to the strong visual images that come alongside different pitches and sounds, and I’ve shocked people with my ability to copy a song from beginning to end on a keyboard. It’s just a shame my short little fingers can’t keep up with my brain; I’d be one of those prodigies! Prodigy tastes like jam…

So the saying “sticks and stones may break my bones, but words will never hurt me” is not correct. Some words really hurt me! Now excuse me while I go and pace for 20 minutes to calm my senses down from writing a painful word.

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A visual depiction of Lucy’s experience with synesthesia and a particular word

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When Writing an IEP Gave Me an ‘Aha’ Moment About Special Needs Parenting

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My son has special needs, and I have been a special education teacher since 2000 (with a two-year break after having my son, Evan). I also have my certification to be a learning disabilities teacher consultant (the learning consultant on a child study team). I taught for 11 years before having my son (who is now 4 years old), and all of those years were spent with elementary-school-age children with varying degrees of need.

I gained a truckload of patience I did not possess before becoming a teacher. I learned how to see the talents in a child rather than focus on the deficits. I learned how to pick my battles with oppositional students. I discovered that a huge part of being an educator are the relationships you develop with the parents of your students. Contacting parents and having difficult conversations about their children has never been my strong point. I tend to avoid confrontation, and I have never felt confident making those difficult phone calls — even when I know my points are valid.

But I never imagined how different I would feel when I sat down this past spring to write an IEP for one of the students I teach. I hadn’t written one since before I delivered Evan. I typed up a sentence about this particular student, one that described his dependence on his teachers and one of his weaknesses. After my fingers clicked away, entering the sentence into the system, I found myself feeling uncomfortable. I reread the sentence approximately five times. I realized I was trying to imagine what I would feel like if Evan had that sentence written in his IEP.

Would I appreciate the wording?

Would I agree with the observation?

Is it necessary?

Here I was wearing my teacher hat, but my mama bear hat was sewn into the brim and there was no stopping her.

This same feeling occurred with each IEP I wrote. I thought longer about each objective. I scrutinized each comment. Was I being thorough? Is the objective measurable and clear? I also found myself feeling more guilty when I would become frustrated with one of my students. After giving the same direction numerous times, and day after day needing to give the same reminders, I found myself becoming short and visibly agitated with one of my students. This particular student is not easily ruffled, and it didn’t seem to phase him one bit, which of course led me to feel more guilt.

boy wearing superman costume
Erin’s son Evan wearing a Superman costume

I can remember sitting at my desk, eating my lunch and thinking, “Erin, that child is doing the best he can with what he has.” My next thought was, “God, please let Evan’s teachers realize that about him. “Please let him try his best, and let his best be enough for his teachers.”

Boom.

One of those moments when you feel like Oprah should appear in the doorway saying, “There it is!”

Your “Aha!” moment.

I need to listen to that little voice inside me that prayed Evan’s best would be enough for his teachers at school. I need to accept Evan’s best efforts as well. Not to say that I should not have high expectations for him and help him to strive to rise to the occasion,  but when he does, when he is trying his very best to use all he has to accomplish something and it is just not working out the way it is supposed to… I need to realize that it is enough.

His effort is enough. He is enough.

The word combinations he is making today are enough.

The attention span that causes him to flit from one activity to the next — it is enough.

The sensitive hearing that has increased in the past month — it is enough.

I just don’t want him to lose his spark. Please let his teachers fuel the spark. Inspire him to try his best.

And let me do so with my students.

Let my best be enough.

Follow this journey on Musings by Mama.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the People With Chronic Illness Who’ve Had Friends Leave

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To those who have lost friends due to chronic illness,

There will be people in your life who you think are forever friends; those you dream about being in your wedding party, or the fun aunt your future children will tell all their secrets to. But some of those forever friends decide to leave your life without an explanation or a second guess. This has been an all too familiar feeling throughout my battle with chronic illness.

Woman sitting in the hospital wearing a hospital gown

When a friend leaves, especially one you grew particularly close with, it can be a big blow to your self-confidence and overall happiness. I would often ask myself if I did something wrong. But I didn’t do anything wrong; chronic illness was not my fault. Those friends left because my chronic illness was too much for them, and who could really blame them. I have cancelled plans on more than one occasion due to pain; I have turned sour when I struggled to cope with all my emotions, and who could forget the constant medical talk.

For some people, this was a scary reality they could not handle, and that is OK. I’ve learned that if people are not able to handle the true reality of my life with chronic illness, then those people will also miss out on the other amazing aspects of my never-dull life.

The good news is, when one friend leaves, an even more amazing friend can appear. I soon found myself surrounded by the most amazing group of friends who are more than I could have ever wished for. They save photos of my x-rays on their phones, they call after every doctor’s appointment and they especially put up with my Snapchats of blood tests and funny appointment stories that could only seem to happen to me. These girls are hard to find, and trust me, I searched high and low for girls as amazing as them. And just as I have found my true forever friends, so will you.

Once you learn to accept yourself, chronic illness and all, I believe friends will be lining out the door, hoping to bask in the ray of positivity and strength that you now possess. They will be there for every good appointment and bad, ready to catch you when you fall and lift you back up when you’re having your bi-weekly pity party. As you sit in your bedroom, hospital bed or waiting room, know that your forever friend is also out there somewhere, waiting to be your friend and share in the life of chronic illness.

Just be patient, be true to yourself and put yourself out there, and I believe you will meet someone who will show you that friendship means sticking by when you are at your lowest and celebrating every small victory in life.

Sincerely,

A chronic illness fighter with the most wonderful friends

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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I’m Disabled and I Wear Makeup. So What?

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I’m disabled and I wear makeup. What’s the problem?

I leave the house on crutches but mostly in a wheelchair these days. Does that mean I’m not allowed to care about how I look? Should I scrap the smoky eye and winged eye liner because I’m in pain and not the stereotypical ideal of “beauty”? Does my disability define how I should look? How I should dress? Should I become invisible like my condition? 

On the odd occasion that I go outside, I want to make an effort. I want to look presentable. I’m in a wheelchair, and I have makeup on. I don’t see why people give me a second glance — unless they’re admiring my contouring skills. Honestly though, what’s the big deal?

First and foremost, I’m a woman, and whether I wear nothing on my face or plaster every product you could possibly think of on it, being disabled doesn’t hinder the way I express myself through cosmetics. I’m a girlie-girl (I’d never have admitted that a few years ago), I love hair, makeup, nails, lashes; it’s my way of feeling “normal,” embracing my sexuality and rolling with it.

I’ve been told that I’m too pretty to be in wheelchair, and that’s really what fueled this post. At the time I laughed it off because I didn’t want to get into something, but when I reflected on the comment, it annoyed me a lot. What exactly was this person trying to say? Disability doesn’t discriminate; my physical appearance has nothing to do with my health. And do you know why I look “pretty”? Because I’m wearing a ton of makeup. If I wasn’t, you’d be afraid. I don’t sleep, the bags under my eyes are suitcases, my skin is breaking out due to new medication and my lips are cracked and sore. I wouldn’t leave the house like that. I’m certainly not condemning anyone who does — you do you — but I just love makeup. It makes me feel better about myself, and it’s my armor.

Do you know what else annoys me? When people say, “Wow, you look amazing, are you better?” I don’t know how I’ve stopped myself from punching people in the face (maybe because I’d injure myself more). Thanks for the first part; I’m glad you think I look good, but I’m not better. I’m still in a wheelchair, I’m still dislocating every day and in chronic pain. I’m just a huge fan of cosmetics, and they’re saving me from looking like a zombie.

Despite these comments, I also battle with myself and imagined stigma. There’s a little devil on my shoulder at all times, whispering things in my ear about other people’s thoughts. This notably takes hold when I’m wearing a full face of makeup and out in my wheelchair. Why’s she bothering? Who’s she trying to impress? She’s in a wheelchair, what’s the point? Clearly nothing wrong with her if she looks like that? I let all these imagined thoughts build up and replay them whenever a stranger looks at me for longer than a few seconds. How can I possibly know what anyone else is thinking? I’m not Professor X; I don’t have mind-reading powers. This is something I’m slowly trying to get over, but it’s hard.

Especially when we live in a world where we’re constantly bombarded by images of beautiful people with beautiful bodies, perfect glowing skin and thick, glossy hair. But what we’re not showing the younger generation is real people. Young men/women in wheelchairs/disabled/not wearing makeup — it’s real. Until the perception of disability alters (in all aspects), there’s going to be people like me feeling criticized for simply being.

I wear makeup for me, not for you or anyone else. I wear it to look and feel good. There’s always going to be people who judge you, no matter what you do. But as long as you’re being true to yourself and are confident, who cares what anyone else thinks? Here’s hoping I become more apathetic to ignorance soon.

A black and white photo of a woman wearing glasses
A black and white photo of Sarah

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The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the Surgeon I'm Trusting With My Most Precious Possession

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This letter was written from the point of view of two hospital moms, Carla and Michelle. Their children, a little girl and little boy, have both undergone numerous surgical procedures and dedicate these words to the incredible surgeons who saved their lives.

Dear Surgeon:

You just brought my baby from the operating room. You may have met us a few days ago, but that little one is my whole life. Before you leave, there are a few things I want you to know. When we finally met, the nerves I felt made me sick. My heart filled with worry; would I want you to operate on my child? But then you spoke. You spoke with such confidence and knew you could do the impossible, what everyone else doubted.

Forgive me for staring, but your hands… I stared at them for a long time when we first met. Maybe even more than making eye contact. What gift were you born with that makes your hands so brilliant? Your hands have saved so many babies. I know that because I Googled you and asked other moms about you. Spent hours and hours reading anything related to you, your hospital, where you studied, what you majored in. Is that strange? How else could I put my child’s life in your hands?

I’m really sorry to tell you this, but I also know you have lost patients. Not every battle can be won, even though I know you try. Invincible, that’s the vibe I get from you. But you’re human, I know. That’s OK.

Did I tell you how long I traveled to get here, for you? Hours and hours just to get here and have you do this, this incredible surgery on my child. We traveled miles from our home hospital to get here and place my daughter, my son, in your hands. I spent hours looking for pictures of you so I could put a name to the face of the person I was trusting with my most precious possession.

Literally, you opened my son’s body’s and touched things, made them work better or even right. I’m his mother and not even I have done that. He lived in me, and he knows what I look like on the inside. Yet, I can’t say the same about him. You can, though. We waited for hours while your hands were inside my little boy’s body, seeing things and parts of him that I have never seen and just prayed and waited.

Your such a different type of person, a surgeon, a fixer, a giver. That goes without saying. Me saying that I trust you is a bit of a understatement. So when I hand over my son’s tiny, frail, dying body, know that I trust you. To the point that I know you’ll do whatever it takes to make it better. Remember his name and mine; he has a beautiful family, all rooting for you today.

Surgeon, you did a work of art on my daughter’s precious little body. The moment you walked down the white halls after surgery and told me she survived? That moment changed my life. A part of me felt like those weren’t the words that were going to come out of your mouth, but they were.

surgeon with baby

Please, tell your wife/husband that I said thank you when you came home later than you promised… again. Thank you for your commitment, dedication and confidence in doing the impossible. Surgeon, thank you for being different, for standing out in life, for following your calling. Thank you for doing what so many can’t.

Dear surgeon, thank you for working through sleep, hunger and dinner parties. You changed my life that day you stepped in the operating room.

With love,

Your Patient’s Mom

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