Across the street from our apartment is a beautiful little playground that the girls love to visit whenever they visit us. As it happens, I'd never taken them there, not because of unwillingness but because the circumstances hadn't presented the opportunity. So, when after a breakfast of waffles and Jif, we all decided to head over, I was looking forward to seeing it close up. Odd how you can go by something pretty much every day and not really notice it.
As we approached I asked Joe, who'd been there before with the kids, where the entrance was as I couldn't immediately see a gate in. He pointed over to the side where a gate was so well integrated into the fence that it was almost impossible to see. It looked wide enough to allow the wheelchair so I was pleased that I'd be able to get easily in. However upon arrival I saw that the wheelchair would fit through the gate but there was no cut curb up to the gate. In fact I had to park my wheelchair in the entrance way to an underground parking lot serving the building that has the playground. Several times I had to move for annoyed drivers who didn't like me, understandably, blocking their way.
I was caught up in watching the girls play so I didn't bother thinking about anything other than the fact that they were having a blast. As happens at playgrounds we chatted with others there with kids, we made friends with a lovely black puppy and met a giant dog with boundless energy. It was a bit of a community gathering, and though I was in a driveway ducking cars and they were in the playground, or just outside of it, no one made much mention of the curb that divided us.
During a lull in the conversation a woman said to me, in a voice full of understanding, compassion and pity, "You must wish yourself out of the wheelchair at times like these."
Now, I know like I seem to be constantly thinking about disability and accessibility and prejudice and writing letters of complaint - but I don't always and I wasn't then. I mean really inaccessibility is a pretty constant experience of being disabled and one does get used to being in driveways while others are in parks pretty damn quickly. So her comment caught me off guard - pulling me back into what what actually happening and away from a moment of just enjoying the kids in play.
And when I was back into what was actually happening I realised that I wasn't and hadn't spent time wishing myself out of the wheelchair. You see I learned very early on, long before being in a wheelchair, not to give to disability what doesn't belong to disability. My being in a wheelchair wasn't why I wasn't in the playground with the kids, the fact that there was an uncut curb caused that. Why spend time on wishing I wasn't who I was, when who I am is who I am? Why not spend time wishing for changes that are possible ... cut curbs and wider doors? Inaccessibility isn't about being a wheelchair user, inaccessibility is concrete prejudice.
I simply said, "I don't wish to be out of the wheelchair, I do wish to have the same rights to access the playground that you have."
She smiled a smile that told me she thought me brave.
Thankfully then, Sadie screamed with laughter and I could move back into the moment. The kids were having fun, I was successfully dodging cars, Joe was laughing watching the kids be kids. And magically, without wishing, it became a nice morning again.
16 comments:
Well - good on ya. I certainly wish to be out of the wheelchair. It is statements like yours that make people say the other stuff. You know - the hurtful "lazy, wish I had a seat" stuff. The wheelchair is not a convenience for me, but a necessity. Yes lady, at times like that, and many many more I do wish myself out of the wheelchair. You betcha!!
Oh - and chair or not - fix the darn curbs!! Honestly. So glad you could enjoy the time with the girls dispite the lack of consideration in design of access.
I don't think it's statements like Dave's that make people say the hurtful stuff. Misconceptions and ignorance are responsible for those comments, never think otherwise. You are well within your rights to wish, or not wish, to be out of your wheelchair, or to view it however you want, but I disagree that Dave was inviting any negative, hurtful or hateful responses. The only people responsible for those comments are those who say them.
For me it deepends on who is asking the question. Sometimes I too simply forget my limitations and it is something different if a friend asks me "are you cold/ exhausted" or a complete stranger asks the question. My friends really want to know, while a stranger would mostly ask out of curiosity, trying to open up aconversation about the way I look.
My friends always get a honest answer and than we can either go on or change the situation to make us all morecomfortable, e.g. walking a bit slower, drinking something warm etc...
Strangers are getting a variety of answers ranging from a blunt no ; like leave me alone to along explanation about my disease, depending on the mood of the situation.
And you are right somtimes this is disturbing.
Julia
http://www.wimp.com/megarampjump/
I often wish people wouldn't take others out of the moment by asking a question that seeks 'oh, yes, I'm so sad about my losses.'
What in the world makes them think it's any of their business what you think about your wheelchair? What is it about TABs that makes them think the wheels are always on your mind? (never mind them imagining that you would think the wheels a detriment).
Curb cuts, though ... surely we could all agree on those.
We were visiting Racine, Wisconsin and my daughter wanted to go to Lake Michigan. When we got to the beach, I was happy to see that there was a path to the beach, a type of mat laid over the sand. It was passable but a lot of work to get my wheelchair to the end of the mat.
Except that the mat ended 100 feet away from the water. So I could see my daughter splash in the water, but not reach it myself.
Sharon
Anon One, you have me so confused. You think that saying that I wanted the same right of access is an invitation to being seen as lazy? Or is it the part that I'd OK with who I am and I don't spend hours and hours wishing to be otherwise? Having self esteem and seeing a need for equal rights doesn't seem to me to be 'letting the side down' as you imply. I'm sorry that you think I am perpetuating and encouraging bigotry ... but, here, I have to strongly disagree. Strongly. Disagree.
Whether or not Dave wishes he wasn't using a chair The point is that he should have access to the playground with his nieces, chair or no chair. Using a chair should not be seen as some sort of automatic bar to entry! The answer is not "too bad you're stuck in that chair," it's a curb cut, which is useful for lots of people.
It'd sure be more convienient to be taller but constantly wishing I was would be really bad for my mental and emotional well-being. Trust me when I say the world at large is not built for people much under 5 feet, and it can be a huge pain. But I deal with it. It's taken me years to start to get to this point, so I'm not trying to make it sound easy. But there is a point where you have to say, "This is what is, and I'm okay with it," or you're going to end up in a really dark place.
Oops..."whether or not Dave wishes he wasn't using a chair isn't the point" is what I swore I'd typed up there.
"I don't wish to be out of the wheelchair, I do wish to have the same rights to access the playground as you have."
Sorry, if someone said that to me I'd think they were missing a spoke. I can't think of anyone I know in a chair that wouldn't wish to be out of it.
When stated, my first reaction would be "why?" Why would you not wish to be out of the wheelchair?
The access bit seems like the most important. Perhaps that should be stated first. "My wish is that all places have access so that if in a chair or not I have the same rights as everyone else."
I kinda see what anon 1 is saying in that it gives a perception, perhaps an ignorant one, that you are happy being in the chair. We need to except it, and except what can't be changed, but to not wish it be otherwise sounds odd to me.
I can only go from my point of view - one who was in a chair and fought like hell not to be - twice.
From the Anonymous person who posted at 19:04, 6 Sept:
"I can't think of anyone I know in a chair that wouldn't wish to be out of it. "
::Raises Hand::
Now you do! At least, in as far as commenting together on the same blog post counts as "knowing" someone...
Granted I never actively wished FOR cerebral palsy. But since I have it, I've also NEVER wished it away.
Because that aspect of myself has informed who I am as a person just as much as who my parents were, or when and where I was born. The fact that I use a wheelchair (and sometimes crutches, and sometimes crawling) to get from place to place has shaped the way I look at the world, and how I express myself in that world.
And you know what? I'm proud of who I am, and how I look at the world. I don't know what Dave's reasons are, but those are mine.
Like you said, I can only go from my own point of view...
One question though: would you consider it polite to ask a woman, discriminated against because of her gender, if she wished, at the moment, that she were a man?
:: also raises hand ::
I only wish to be out of my wheelchair in the sense that I tire easily and would rather be in bed instead. I don't care what anyone else thinks about being in a chair. But making it sound like a moral problem, tried not wish to be out of a chair, pisses me off because it's just individual preferences. Personally I am so glad I have wheelchairs because they allow me to, occasionally, move around. That's not something I do easily even in the chairs. So anything that helps is a good thing, not an evil imprisonment.
Most chair users I know feel the same way. And I really really hate when those who feel the same way society expects them to feel, rag on those of us who feel differently. Because it feels like they have the whole weight of the TAB society behind them as they say it. "Why would anyone think any different? Everyone feels just how I do. It's the natural way to feel and anyone who feels otherwise is either fooling themselves or hurting all of us or something." It's so damn easy for people to feel like that. And so damn hard for those of us who don't, to fight our way through common assumptions about disability to be truly heard and understood. I don't care that some feel differently. I care when some of them try to make it harder for us who are okay with ourselves and our adaptive equipment.
I may be more sensitive than usual today because I'm laid up with pneumonia and I'd love to feel comfortable in bed, let alone safely use a chair. And people who think I shouldn't be okay with using a chair, that I'm doing something horribly wrong by not throwing all my limited energy into fixing my disability, I just can't deal. Expecting that of any of us is worse for us than any imaginary harm done by not loathing our chairs. Because hey, I could put all my energy into curing two disabilities that don't even have names yet let alone treatments. I don't have that energy so that energy would be gone. And I'd have that much less actual living to do. If someone actually listened to the idea that being okay with being in a chair is lazy, that's what could happen to them. And it would be awful.
"Sorry, if someone said that to me I'd think they were missing a spoke. I can't think of anyone I know in a chair that wouldn't wish to be out of it."
Well, my chair must be missing many spokes as I don't wish to be out of it. Just by using it all day long prevents HUGE amounts of pain (I have RSD/CRPS in my legs that is worsened by every step I take) so I find it incredibly annoying and frustrating when someone decides I must hate being in a wheelchair. I love it. I can do so much more. I don't love the segregation though.
@Dave, terrific post.
Dave, I still read every day but don't comment as often, or even read the comments on some of your blogs, because I can't bear the self haters who hate you for not hating yourself. How you keep writing with that kind of loud opposition I don't know. I'm glad you do though, they may hate you, but I need you.
I'm with dave and the others on this one. I don't wish not to have my disability anymore. I did that as teen and young adult. I am grateful for my service dog and my mobility aids because the afford me a slightly more level playing field in society. I'd taken me years to be Okay with who I am. If I sat around feeling badly about the physical things I can not do or not do with out a mobility aid. I'd have missed a lot of joy and lessons in my life
"Sorry, if someone said that to me I'd think they were missing a spoke. I can't think of anyone I know in a chair that wouldn't wish to be out of it."
All my wheelchair-using friends at my old university. In fact the only person I met who used a wheelchair and clearly wished not to be in it was a severely cognitively disabled girl who could crawl indepedently but couldn't steer her wheelchair. And it's not that she wished she was nondisabled (since she was nonverbal I have no clue about that, though she certainly didn't seem unhappy).
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