I Am More Than An Empty Wheelchair: Speaking Up Against Ableism

When you want to address a person, the next step should be to find a way to convey your message that person, right? So, if your message is intended for me, but you convey it to me by addressing a person I’m with who appears to be non-disabled, it makes me wonder if you perceive me as a person, or as nothing more than an empty wheelchair. What is it about a simple mobility aid that causes so many people I encounter to hesitate to direct communication towards me? All too often, my wheelchair use is perceived as a symbol that I’m incapable of processing what a person says to me, and it’s time for the world to wake up and realize this isn’t true.

But, it’s also time for me to start confronting these issues head on when they happen, rather than waiting until after the fact when I can put fingers to the keyboard and write about what I should have said in response. Unfortunately, an opportunity to put my money where my mouth is recently presented itself while I was at a disability-themed event, of all places.

A group of friends and I (all with disabilities) went on an adventure to see a screening of a documentary called Cinemability at amazing film festival called Reelabilities, held in New York City. With the exception of one of us, we all use some form of mobility aid to get around. Of course, this meant we caused quite the traffic jam while waiting outside the auditorium before the film.

I figured we were in a safe space, one so full of people from the disability community that we wouldn’t be subjected to common ignorance. I was wrong…

“Can you move them over there?” It was such an innocent question. The woman volunteering as an usher looked at the only one in my group of friends who doesn’t use a wheelchair or a walker, hoping he would herd us, “them,” to the back of the lobby to get out of the way for other people using mobility aids. My friend doesn’t appear to have a physical disability when he’s just standing still, so the usher directed her request at him as though he was our chaperone. And while this simple, blatant ableism so often renders me speechless until I come up with the perfect reply in the middle of the night, I just wasn’t willing to sit there and take it that day.

After my friends and I got over the initial frustration, we debated if one of us should say something. Initially, I joked that the comment would make for a great blog post later on. But my reluctance to say something weighed heavily on my mind. If I really want to be an advocate, then I have to do more than advocate from behind a computer screen. So, with my heart racing at the thought of confrontation, I pushed my way through the wheelchair traffic jam straight towards the woman.

I don’t recall exactly what I said, because nerves and anxiety kicked in, but it went something like: “Excuse me, when you told my friend to move ‘them’ over there before, I know you probably didn’t mean anything by it, but I just wanted to let you know for future reference that if your comment is towards someone disabled, you should speak directly to the person. This is especially important since you’re working a disability film festival for the next few days.” The woman looked at me like a deer in headlights and then said “Oh, uh, sorry, I didn’t know. I didn’t mean to.” And then someone else tried to get her attention, and she couldn’t have spun away from me any faster, acting completely engrossed in what the other person was saying.

As I rolled away, I felt a pang of guilt because I knew I had embarrassed the woman and put her on the spot. Then I realized this compulsion to be apologetic, as though displays of ableism are somehow my fault because I exist, just isn’t fair. By confronting ableism in a way that’s firm but polite, then maybe, just maybe, the person will think twice next time they’re in a similar situation.

Or, maybe they’ll go on with their lives and do the same thing again in the future. I’m realistic enough to realize it’ll take more than a response to an isolated instance of ableism – no, more than a million responses – to effect change in society. But I am more than an empty wheelchair; I am a complete human being who sits between a set of wheels, and I deserve to be spoken to directly. So I, for one, am making a promise to myself that I won’t be taking ableism sitting down. Well, at least metaphorically, that is!

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Comments

  1. This is so true. I’ve seen it first-hand. They had a special area at the Hong Kong airport where they put all the disabled people, and they were monitored and not supposed to leave. I tried to get some food and someone wheeled me back to the area.

  2. I used to speak up about people assuming I was unable to do things I can do, but then ultimately I ushedrealized my coments were ableist in their own way. For example, if people pushed me towards an epty seat on transportation, rather than saying I didn’t want to be pushed, I said “My legs work fine”. This is ableist because of course it isn’tokay to push someone with a mobility impairment without their permission either. Now I just leave it and dont’feel capable of sying I’d rather not be shoved as I do have a slight mobility impairment and could really use the empty seat. I do remember when I was a child, I used to often speak up when people asked my younger sister if I’m blind. “Yes, I am,” I would say.

  3. Great message Emily! I want to say that you shouldn’t be worried about embarrassing someone who doesn’t know that they are doing/saying. The only way to make changes is to speak up. Don’t think of it as being confrontational, think of it as being educational. I know, easier said than done. Something that really irks me is when people park in the handicapped spot to “run in” to get something from the store. (I even wrote about it here http://theseed9811.blogspot.com/2012/09/handicapped-parking.html) There are times where I decide NOT to say something because I feel intimidated by the person – I certainly don’t want to get beat up over a spot! But with those that I DO decide to call out, often my heart is racing as I’m talking to them, even if it’s not a heated discussion (which has happened twice). It’s just something that I feel very strongly about so I push through it even though it often feels uncomfortable. I try to think about how the agitators of the 1960’s civil rights movement must’ve felt sitting at those lunch counters and marching down the streets. I can’t imagine how hard their hearts must’ve been beating. And look at the change they were able to bring about. <3

    1. Thank you for the kind words and encouragement, Melissa! I love your point about considering how activists felt during the civil rights movement. Disability rights is definitely the next wave of civil rights that we have to work to achieve. And I’m so glad you speak up about people unnecessarily using handicap parking spots. I’m heading over to check out the post you wrote about it right now! 🙂

  4. Hi Emily,

    Nice story. I am glad you picked up the courage to tell that lady off. I don’t think you should feel anxious before or full of guilt after you said whatever you said. people should be told when they don’t respect us.

    I have the most wonderful wife. She is right there with me when it comes to activism (even though she is disabled here by being able bodied) She ha found the perfect reply to those sorts of people. She simply listens to them and when they are done she looks at me silently as if she either has not heard them or she doesn’t understand them. I will then look up and force the person to address me. So far I have not met one single person who bashfully now have to start over explaining to me what they want. I highly recommend this approach from those of who are out with us in public.

    1. Hi Henning! So glad you stopped by to read my post. I’ve read your blog before; I’m a fan! I just love how your wife handles people who don’t address you directly. Such a great idea. I may just have to get some of my friends and family to do that as well!

  5. I’m proud of you for speaking up, these type of situations occur all too often. Like Astrid in her comment above, I tend to get defensive and snarky. Because my illness is “invisible” I haven’t had to really deal with Ableism directly. But, when my hair fell out in November 2012, I noticed everyone around me (not friends, just people in my surroundings) treated me differently and gave me looks of sympathy.

    1. I appreciate that you’re proud of me since it was nervewracking for sure! Also, I totally get the “looks.” It’s like just because something appears somehow “wrong” with you, people don’t quite know how to handle it.

  6. Prior to being in a wheelchair for only a brief part of my life, I didn’t think about situations like these. I don’t know if I was unintentionally rude like that before, but I do know after being in a wheelchair I understand it more. Many people don’t understand or even know how you feel until you tell them. Even then, to be truthful, they still can’t unless they’ve lived it.
    I love your message here. I do feel that she was wrong for going up to him instead of asking all of you wonderful people to move herself. Yet, she may not have known “how to” address you all without offending you so she went to him, and ironically, may have instead offended you more.

    1. Crystal, thank you for making me think about the situation from another perspective. You’re right – it could have been possible the woman just wasn’t sure how to handle the situation. I do hope we can all work to educate people and change this!

  7. The whole point is – why do people feel they have to address us any differently than anyone else? It’s so ridiculous. NEVER feel bad for confronting or addressing ableism – NEVER. These people need to be educated and no one else is going to accomplish that but us.

  8. I don’t get to go out much because of my particular chronic illness/disability so I’ve not had a lot of experiences of this kind of ableism. I do know that on the odd days that I don’t spend an hour on my makeup & getting carefully dressed in stylish clothes people ignore me a lot more.
    I don’t know why but I remember trying to explain what it was like to one of my doctors & she just couldn’t understand it…. Stood up I am 5ft 9 & a curvy uk 14 so I was very used to being seen….not in a bad way but people noticed me. As soon as I started having to use the wheelchair that all stopped. My doctor was surprised by this, she thought people would see me more but they don’t, they see the chair all the time but they don’t see me. You guys know what I mean.

    Sally

    P.S. Even for wheelchair users who would struggle with replying or perhaps understanding when they are spoken to, it’s still better to speak to them. The career can hear anyway & it is so much more polite.

    1. That’s really interesting that you’ve noticed people respond to you differently based on how you appear on a certain day. It’s a shame we have to somehow assert authority through appearance to get people to address us. Also, I completely agree – even if a person has a disability that makes it difficult for them to reply, still speak directly to them!

  9. so proud of how well you express yourself Emily. ok…..my comment really does not count because I am your Mom but i do have one relevant story about how education is key in all areas concerning care and treatment of people with disabilities. As you know, I
    occasionally ride our county paratransit bus. when i take my Hoveround powerchair with me i transfer to a bus seat because my Hoveround does not have wheelchair
    tiedowns. when the bus arrived at my destination i got up to get into my power chair but the driver turned it on first. i debated for a second whether i
    I should tell him he should not have turned it on….he thought he was being helpful but in the transfer process i could have hit the joystick, thus causing the chair to move and causing injury to myself or another passenger. I did decide to politely tell him he should let passengers control their own chairs unless otherwise directed. The driver seemed genuinely appreciative that I educated him and i was glad I spoke up too. we in the disabled community do need to speak up for ourselves and when done in a polite manner our messages will be heard.

  10. I think you did the right thing, Emily. I think it took guts, but you did it in a way that wasn’t overly harsh – it was simply the truth. If we don’t do this, then how can we expect people to know better? Nobody can read minds.
    I don’t think I have ever stood up so well but I hope when the day comes I will have the courage to

  11. You were brave to say something! I would have been too nervous. My disabilities are “invisible,” so I don’t face as much ableism, although my uncle says he’s noticed that people tend to talk down to me as if I were a little kid. I did experience a version of ableism when I was in college and had just started the program to become a special ed teacher. I had turned in some important papers late. The professor took me aside and asked me if I had problems with organization. I told him I have ADHD and Aspergers. He nodded knowingly and said, “You may have to rethink this whole thing. Teachers need to be very organized. I don’t know if you’ll be able to handle it.”
    Years later, I still find myself thinking about ways I could have responded, by giving him a strong, assertive response. But instead I just sort of slunk away, and I ended up dropping out at the end of the semester. (But I did find another university after that, so it had a happy ending I guess.)

    1. Most of the time I tend to clam up or shrug it off because I get nervous, but I’m trying to focus on asserting myself more! While I totally get how you feel when you think about what you could have said in your situation, I’m so happy to hear things worked out for you in the end!

  12. I have encountered well-intentioned ableism many times. It annoys me even though I know these people mean well.

  13. Wonderful post, Emily. Thank you so much for sharing! You are a courageous woman. I imagine you get tired of hearing that, but it’s true.

    Personally I rarely manage to think of the right thing to say until I’m on the way home!

    Right now I’m kind of between a cane, a walker, and a wheelchair when I go out, depending on the project at hand. I can’t possibly manage without a wheelchair if the distance to cover or the duration of the trek is more than a couple of minutes; it’s a painful struggle for me to be upright.

    But nevertheless, no matter what mobility device I use, I’ve noticed that when I go into a restaurant, the hostess almost always tries to make me schlep to the furthest table possible from the door, presumably to get me out of sight & out of the way. I’ve only recently begun to tell them that I’ll appreciate being seated as close as possible to the entrance. Since I used to work in and even manage restaurants decades ago when I was more able, I can tell when there’s a reason to march me through the place and when there’s obviously not.

    1. Cathey, I can totally relate to you in so many ways! The out of sight, out of mind mentality that comes with a visible disability can be quite frustrating at times. I’m so glad you stopped by to share your thoughts with me.

  14. Good for you! It’s so hard to confront situations like this and you shouldn’t have to. However, there is this kind of disregard everywhere.

    I worked 20 years of my professional career in child care and I had countless encounters when I had to speak up because of an off-handed “poor little thing” comment, or stares, or blatant avoidance of a differently-abled child in my group. Some people’s ignorance is completely frustrating.

    Once again, good for you. I hope that encounter sticks with her. She probably didn’t realize what she was doing… but now she does.

    Wishing you a lovely weekend.
    xoxo

    1. Wow, thank you for sharing your experiences with me about your work with children. I appreciate that you spoke up for them! Hope you have a lovely weekend as well! 🙂

  15. Hi Emily!

    I am from the SITS community stopping by to say hello! Thank you for speaking up about how people are mistreated. I was an elementary educator and I always tried to help every student feel included versus excluded or treated unfairly. I hated sitting in IEP meetings with parents, counselors, and special education teachers listening to what a child “couldn’t” do versus what they are capable of doing! I saw your picture from Sesame Street!!! That’s so cool and such an honor to be on the show!!! 😀

  16. I love that you stood up for yourself! I constantly have to remind people not to use the word “cripple” around my school. I get glares, but it’s a discriminatory word, so they just shouldn’t use it!

    I’ve also had my share of just uneducated responses. I have one hand and overuse issues in my shoulders, so I sit out for some things in PE and sometimes have to take stretch breaks during classwork, or just wait to do the assignment at home. Of course, people think I’m ‘lucky’ for being forbidden to do push-ups, but I always have to remind them that I’m in no way lucky- the pain behind me not doing them really isn’t lucky. Of course, then we have the suggestions, but I find that once this happens, people really only hear what they want to hear, so no matter how many times I tell them that it doesn’t work that way, they don’t listen. At that point I stop. What also bugs me about them calling me lucky is that I used to be able to do a good 50 push-ups before fatigue. So especially with that in mind, no, I am not lucky. Don’t use that information to put me down, but don’t romanticize it either, y’know?

    This occurred during a class assignment once. We were cutting out small pieces (which takes me hours without any shoulder pain), and I had to stop because I was having some pain. Of course, the kids couldn’t resist themselves and had to start suggesting that I “just suck it up”, etc. This occurs in soooo many areas of my life, there are many times where I just get discouraged, or even worse, angry when trying to explain myself. There have been plenty of times that I’ve just kept quiet and played songs in my head while they go about their rambling.

  17. I have experienced this before although I have hearing loss and anxiety. I hate when people talk over me as it makes me feel invisible and worthless. I also struggle with people judging me. I have issues related to both my hearing loss and anxiety as well as heath issues that restrict my participation in gym class and I get so many stares and rudeness. Figuring where my disability fits in my life is difficult with all the outside influence. How did you figure out where it fit in yours as a smart young women?

    1. Kathryn – what an important question. I think that figuring out how disability plays into your life is so deeply personal. For me, my disability is part of my identity. It is neither always positive or always negative. It just is. I believe you’re a strong and smart young woman as well who will grow into a place of comfort with your disability, even when society does not see that too.

      1. Thank you for your response. For many years I just viewed my hearing loss as part of me, not giving it too much thought bed the day to day things it requires. In the past year or so I have started questioning how it fits in to my life because I want it to be more prominent as it does affect my views and opinions but not so prominent it is the only thing. It is part of my identity and it has shaped me. I also appreciated your most recent article on The Disability Dialogue. Making my diagnoses and language surrounding disability more accessible is something I do with my friends who are always eager to listen, learn and support.

  18. Gosh, I hear that kind of well intentioned but wrongly directly comment frequently…… and normally I turn round and wheel right up to the person and say were you speaking to me about moving somewhere? I do so very politely. I tend to look at them straight in the eye, that’s tends get their attention and I make my point without saying anything directly.

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