Tuesday, December 29, 2015

Shut down, Shut in

Image result for power shut off
Image Description: A finger, on a switchbox, is turning the power off.
I didn't realize, when writing yesterday's post, that today was coming.

Today, we have to stay in to wait for the wheelchair repair people to come and take a look at my power chair. I am desperate to have it back even though I have my back up scooter. The scooter doesn't have the capacity to do the distances that my chair does, and it's too cumbersome to take on the subway, so I've been limited to just my neighbourhood. I'm grateful, don't get me wrong, but I'm looking forward to being back up to full power.

Yesterday I wrote about staying in, choosing to stay in, today staying in isn't a choice. What a world of difference. It's barely 8 and I'm chomping at the bit to go out. We had our first real snow last night and I'd like to go out in that and wander about a bit. But repair people come when they come and you don't want to miss them. So. We're in. And the walls close.

I remember many years ago, seeing an angry staff dealing with a kid in a wheelchair who was tantruming. There was no question that the kid was upset and angry and difficult. But what kid hasn't been in that spot? The staff, in an act of a revengeful kind of punishment (and don't even try to suggest that kind of thing doesn't happen) reached down and disconnected his power wheelchair such that it could not longer move.

The kids temper tantrum moved up a notch from temper tantrum to a riotous rage at the violation he felt. I spoke to the staff about it and she just said, "That will settle him down." I was new and, if you can believe it, shy about speaking up. I saw the wrong and I questioned it without protesting it and thought that that was enough. (I am different now.) But even though I saw the wrong then, I didn't understand it. Now I see this as purely about establishing, in a literal way, who had the power and who didn't. The act of taking away the power of movement was an act of heirarchy in the most blatent way it can be. I have the power to shut your power down. It's terrifying in it's implications.

Now that I use a wheelchair, I remember these things but through a different lens. I saw it as wrong, I didn't see it as what it was ... cruel. Taking away mobility from someone ... you'd never tie a kids legs up because he was having a tantrum, or you wouldn't do it without being reported to children's services. It's so clear now.

I know it's a huge jump from having to stay in for a wheelchair repair person's visit to a kid tantruming in a power wheelchair that has been purposely shut down. But I think, when we remember moments in our past we should look for connections that allow us to learn from memory rather than just visiting memory.

To that kid, whose name I don't even remember.

I'm sorry I wasn't stronger then.

You were right to rage.

I hope you still do.


Girl on wheels said...

Hi Dave,

I found your blog a couple of months ago and I very much enjoy reading it. I've never commented before because I tend to only read every few weeks, so by the time I see entries the conversation is over and done with.

I'm a wheelchair user and I live in the UK, I started using a wheelchair almost four years ago and my mobility began deteriorating two years before that. I am mostly stuck in the house as I can't wheel myself far in a manual chair and I don't qualify for a powered one, so for 4 years I haven't left the house without someone with me (except once when I made it to the postbox around the corner!). I tend to lose track of the days, it's easy to do when every day is the same as the last - plus my meds help with the forgetfulness! There have been times when I've realised that I haven't been out of the house in over a month, but to be honest I think that bothers me because I think it should. Still if I'm ever stuck in the house when I want to go out, for example waiting for a delivery, it drives me up the wall! It took my partner a while to understand the difference, that staying in because going out is difficult is not the same as being stuck in. I am luckier than a lot of people in my situation, I have a warm comfortable home with plenty of things to entertain me plus the ability to sleep when I get bored. I also have an incredible partner who has supported me through my transition from abled to disabled and who has always recognised that my wheelchair is a part of me, as well as being my independence.

I have met people like those who disconnected that child's power chair, back when I was abled I was a Children's nurse and some of those people were my colleagues. I recognised very early in my training that a lot of people in health & social care don't understand that assistive devices are a part of a person's body and that it is as wrong to unhook the power on a wheelchair as it is to tie someone's legs together. Touching someone's assistive device without permission is assault and it should be treated as such, but unfortunately most people don't see it that way. I have had people move me out of their way when I've been out on my wheels, and I usually try to tell them exactly how wrong that is, when I have the spoons that is.

I noticed someone commenting here on your blog that being out in public whilst disabled is a political statement and I think that is very true. A person's experience of interacting with me as a disabled person will colour every interaction they have with any other disabled person after that, which is so very wrong but alas it is the case. So when dealing with people's ignorance I try to remain calm and polite, I don't swear or raise my voice even if they really deserve it - because if I do I will just be an angry disabled person. I get really frustrated by how unfair it is, that I am not allowed to react to any injustices in a real way. But I do know that I am privileged, I read as Middle class and educated plus I have had training in being an advocate - I am in a great position to actually change things for other disabled people in the area I live in. I have already made a difference in our local bus service policy, wheelchair users now board the bus first to make sure there is room in the designated wheelchair space before it gets filled with prams and suitcases. Still it gets tiring and sometimes I just don't have the resources to perform my role, and I hate that the pepole might not be so helpful to the next wheelchair user after me because I forgot to thank them.

Unknown said...

Hi Dave,

Your story of the tantrumming child touched. A cord in me. A close friend of mine began bbc.co using a power chair about one year ago. She lives in a high end elderly housing complex. She had a medical problem which required hospitalization and rehab. When she returned to her own place she learned they had confiscated her power chair. A nurse who did not like my friend determined she could no longer drive it safely. Mind you she has not hurt anyone with this chair. My friend is a woman with resources including money and lawyers. In time she got her chair back. And now she is, I think, more careful to see to it that people like her. It was a power play, and for a while the nurse won.

Helen said...

Switching off chairs was common practice in a school I used to visit as a trainee. Think the teachers took it personally that the kids could bugger off from their dreadful lessons so would stitch them off. Myself & colleagues protested about this regularly & in writing to no avail as staff & management told us the kids "had to learn" that they couldn't leave when they liked. The concept that the staff might need to be interesting enough for them to want to stay or that it was a great sign of their burgeoning independence was not well received.

AnyBeth said...

I started trembling at the mention of disconnecting the kid's power chair. Because the first thing you do when a kid makes a fuss is tie them down such that they can't move. Applies equally to a classroom, I think. Obviously to maintain a child's attention, it's standard policy to tie all of them to their chairs, right? Why is everyone looking aghast? You mean it's not? You reserve this beneficial treatment just for people (including but not limited to to kids) with certain mobility problems? Isn't that odd... wonder how that reasoning goes. Hm. /sarcasm

I've been non-consentually pushed in my (manual) wheelchair. (Only cared to be gently polite to the preschool set.) Worst of it was another person with brain damage (a stranger without mobility problems) chose to introduce himself by sneaking up behind me and introducing himself by tipping me backward nearly 90deg. That was very scary in a number of ways. (The suddenly obvious physical vunerability, the stranger sneaking up and grabbing you, and that this all happened in what I'd supposed to be a safe place, disability-wise.)

I... I've also been tied up -- as a part of what amounted to kidnapping and possibly false imprisonment, before any obvious physical disability. In short, the ex provoked my PTSD and wouldn't back off. Evaluation ends in recommendation I go home, he said he was taking me home, he lied. I know, I know, despite all that evidence of ever-so-lovely classroom bondage, being tied to a bed does not, in fact, help PTSD aside from maybe causing it. It's amazing how many things immobilizing a person doesn't help.

As much the normalizing of taking such action horrifies and disgusts me, just as much does it sadden me that this means there are people for whom this is so normal that they must come to accept or at least tolerate it. Seems to me an attempt to kill pieces of another person. The learned helplessness this lays on the receiving side... it saddens and it pains me. I, too, hope the kid didn't face that. But I hope the man (former kid) doesn't present reason to rage at that anymore.

Ettina said...

Earlier this year, the northern part of my province had a terrible forest fire, and the smoke was being blown south into my community. For most people, it was a mild annoyance, but since I have asthma, going outside even briefly made my lungs feel tight and I'd start feeling dizzy and unsteady on my feet. So obviously I went out as little as possible.

It was very frustrating. I was pacing my house, feeling restless and caged in. I often stay home all day just because I don't feel like going out, but it's totally different when you *can't* go out.

Just writing this to say that I can relate.