Friday, June 21, 2013

The Big Wheels


“Why are they all staring?" demanded Albus as he and Rose craned around to look at the other students.
"Don’t let it worry you," said Ron. "It’s me. I’m extremely famous.” 

I have had that quote in my back pocket for two years now, just waiting for either Kingsley or the girls to notice the staring. People stare at Kingsley all the time. Sometimes blatantly, sometimes (not so)covertly. We have been at the girls school a lot in the past month so once again, I'm/he's getting the children gawkers and occasional brave question when they've slipped away from their parents: 'why does he use that?' Adults are different, they either avoid looking entirely, as if the wheelchair was wearing a wig of snakes, or they treat King 'special' because of it with waves, honks, extra candy (Halloween and Parades), and big 'HELLO!'s while ignoring his sisters.

People make assumptions about people in wheelchairs, that is becoming abundantly clear to me. Two major ones, I find. 

The first assumption is that they don't want to use their wheelchair, that it's some sort of burden. Let me clear this up right now: it's not. Kingsley LOVES his wheelchair. It is not as though he has the option of wheeling or walking and this is second place. His options are wheeling and being independent or staying where he is put down, waiting for someone to move him. Independence, at any age, is always preferred. Parents of kids like King often panic about this one: a life of confinement in a wheelchair, the horrors! How can they do that to their child? I can't speak for all kids, but I can never say enough how much Kingsley's life changed for the better when he got wheels. He was so passive before, never exploring, never moving. Now, he tortures me by trying to find ways to launch himself down any ramp at top speed. I am not burdened by his wheelchair. I love it. I love what it does for him. I love the independence he has. I do not love the lack of accessible kids activities, but I don't think this would be much better if he used a walker or any other mobility aid (were that possible, which it's not). 

I believe this assumption comes partly from our language, about which volumes have been written by the disabled community about our ableist biases. Right now, I don feel I need to get up in arms over whether Kingsley is IN a wheelchair or ON a wheelchair - I will one day take his lead on that - but I had a convo with my brother recently that I had to correct him on. He is a paramedic and was telling me a story about a call with a cool guy who was in his twenties, totally independent, nice guy, who uses a wheelchair. It went like this: 

BRO: ... so I was thinking about King the other day on this call, blah blah, and the guy was wheelchair bound so we got to talking about my [awesome] nephew and - 

ME: OMIGOSH!!!!

BRO: what? 

ME: with what? Is that why you were there? 

BRO: with what what? 

ME: what was he bound with? Ropes or chains? Did you have to cut him out of his wheelchair? Who did that to him???

BRO: oh. (Pause) Ah. Ok, ok. How do I say it? 

ME: he uses a wheelchair. Unless he was legit bound to it, but that would be abusive... Unless he's three and it's just a belt 'binding' him for safety... 

People aren't bound or confined to wheelchairs. They aren't torturous things. Like I said, the alternative is the state of confinement for Kinger. 

Wheelchair = freedom and independence
No wheelchair = bump on a log


The other assumption people make is a strange one. People assume he is intellectually disabled. I'm not sure what to make of this one. For starters, I'm not insulted by it as I do not think being intellectually disabled is an insult. I am just always caught off guard by it. Also, with SB there's a chance King may have learning disabilities once he gets to school. As of right now, we have no indication of any problems, he appears to be right on track with everything. 

The strange thing to me is how it's brought up. It's often by people I'm acquainted with. People who I'm closer to have just come out and asked if King's cognitive development has been effected and I'm fine talking about it. The main way others ask is by asking if King will go to the same school as the girls. I was so confused the first fifty or so times I was asked this. Of course he will? Where else would he go? I know in some places there are segregated or special schools. We don't have that at all here. There are a few classrooms in a couple schools for kids with ASD and then some for children with intellectual/developmental disabilities, and not all kids who fit either of these two diagnoses automatically go in those programs either, it's all case-by-case. Kingsley does not fit either criteria by a long shot. In fact, at this point I don't anticipate King needing any accommodations other than space, a private bathroom, and someone to help him take his mid-day meds, which we ensured when we switched schools. So, either people don't know that we no longer segregate kids with disabilities (which would be strange, since I'm pretty sure that hasn't happened in my lifetime) or they think he may belong in a special class. Which is a strange assumption since his wheelchair is the only thing indicating something different about him. 

There have been other comments also, like how I can keep him in high school until he is 21. Same idea, if it's needed, great. But I have no indication right now that he will need to make those victory laps to get through high school. Why would anyone else think that?

I have heard that as he gets older, people will start talking to me about him in front of him as if he can't understand or answer for himself. It happens now, but it's not abnormal to do this with kids his age.

People are strange about wheelchairs. I have tried thinking back to how I would have responded previously to someone using a wheelchair and I honestly can't remember. Maybe I was immune to stereotypes because I have spent most of my life working with people with physical and other disabilities and have had people-first language shoved in my face at every turn. Or maybe I was totally ableist and didn't even know it. Either way, I'm glad Kingsley is around to break down stereotypes for others. 

7 comments:

  1. I have to say I was thrilled when we went for Mason's wheelchair evaluation that the vendor was talking to Mason about it all, asking what he liked, etc. Mason is 1 - he couldn't answer the guy in the least. But I loved seeing that and hope to encourage all Mason's docs/nurses to do the same as Mason becomes verbal, just like I do when I take any of my children to the pediatrician. If they're sick and can talk don't ask me, ask them what is going on. Same idea.


    Before Mason I don't think I ever really saw ANY child in a wheelchair. Seriously, I live in a small town and have my whole life. Mason's first pediatric chair will be ready next month and I'm so stinkin excited for him. He loves the bumbo one we made and I know he'll enjoy being at a different height in the new one.

    I'm so glad you blog about the journey a bit further down the road! It helps me think about things before we run into them!

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  2. Great post Jill!! My neighbour Noah uses a wheelchair and I must say at first was a surprise when they moved into our neighbourhood. Now, however it's Noah, its his wheelchair, who cares. We love the little boy who uses it, his spunk, take charge attitude, humour and laughter we can hear houses away and learned that it's just a wheelchair which helps get him from point A to B, just like glasses help people see. Hopefully over time, with friendship and education people will see that with King.
    Also must admit- that "Stay Calm, its just a wheelchair"- DYING of laughter! Good one.

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  3. I'm not a fan of "bound to" or "confined to" either. I think people use those terms because to them a wheelchair is not a symbol of freedom (like you and I see it) but rather a burden, something that a person is practically chained to. And I can relate to all the cognitive delay assumptions. I remember when Caleb started Kindergarten and someone asked "Is he going to kindergarten-Kindergarten, like REAL Kindergarten". :)

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  4. Oh and I love the "keep calm" photo. I may steal that.

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  5. Love the post. Would love to hear more about what it's like when he starts school and how to interact with kids with different abilities. I set up assistive tech at a number of schools, teacher and eas will mention different diagnoses to me, but I haven't a clue what most of them are.

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  6. Great post. I can so hear D saying that. Remember he is medical model. ; ) It sounds so old school medical terminology, eh?. I love the topic of assumptions btw. All through this post I was thinking about how we have all grown to learn more about how we perceive people who use wheelchairs and how our assumptions have changed the more we interact or get to know individuals who use wheelchairs, especially with King in our lives. In the end you briefly comment on your own experience of wheelchairs, but I would be curious to explore assumptions more with you. We all have them, they are natural. And best of all is that we can grow so much wiser when our assumptions become informed. Lets chat over wine.

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  7. I love this post! I'm a fellow SB mom of a 19-month old. I've been having similar feelings now that Leah is in a wheelchair and I can totally relate to all of this. Thanks for putting it so eloquently ;)

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