There are times I hate my fellow cripples. I'm sorry, it's true. I especially hate that every other wheelchair using, accessible room needing, parking space filler upper, has different needs than me. That those who design for the great 'us' who are disabled, are forced to think about various needs of a range of disabilities. Thus I'm stuck with hotel rooms, disabled bathrooms, ramps that may be wonderful for others but don't cut it for me.
Like how do they grow crips in England? Most of the hotel rooms I stay in don't have the walk in showers. Most have tubs that have bars. The bars are so low as to be useless when you want to get in and shower, but odder still, to get into the tub you've got to step up a huge step into it. What's with that? And with no grab bar, because disabled people all need grab bars just above the side of the tub (for what purpose?) and none of us need one on the wall where we can hold on as we hoist up. Who are these disabled people? How can you be disabled and get into a tub that's 2 feet off the floor?
Now I appreciate that there are even such things as 'wheelchair friendly' rooms and 'accessible' bathrooms, I really truly do, and they really do help make my experience in the world easier. I can't imagine what it would be like if some poor forgotten sod hadn't invented the ramp.
But what's cool about being home is that I didn't have to think about generic cripples when adapting the place. It's was really all about me. We bought a home that was accessible (ramped) because we wanted a place where friends in wheelchairs could visit. There was a decision that paid off in spades. Think of others, benefit yourself. I've got a kitchen wheelchair, and my spot at the counter where I help prepare meals. I've got a bathroom chair where I can sit to shave and make myself geeeorgous. I've got the front room set up so that I can watch tv from a tall chair if my legs are feeling week, or from the couch if I'm having a good day. This 'social model' of disability is cool because, after being home for a few days my status as a disabled person begins to recede in my mind. I just live here.
Yesterday Mike, Joseph (the 13 year old version) and Ruby (15 months) arrived for our Boxing Day Bonanza. They came in with fresh parcels and we had their stuff packed away under the tree. A hello or two was done and then we attacked the gifts. Having a 13 year old involved in this meant that organization went out the window. Joe and I open our gifts one and a time, chat about where we bought it, who the clerk was, and the thought that went into the present. It delays the gratification. Joseph is 13 he doesn't delay anything. Paper was ripped off and the word 'awesome' was heard from under a pile of paper a couple of times.
As we all made dinner and got the evening going, I realized that more than my house has been made accessible. Everyone there had made tiny adjustments for being with someone who sat and rolled more than stood and walked. It was natural, there was no embarrassed fumbling or frustrated glances. It was just a time of us adjusting to each other. Everyone had different needs and different things they wanted to get out of the evening. Baby Ruby just wanted to be part of everything the big people did, Joseph wanted a new respect as an almost adult definately not child, Mike wanted brother and sister (who live separately) to begin to know each other. Joe wanted everyone to like their presents and to feel at home. It was nice to be in a home, adapted for me, but adapting for others. Having my own needs not trumping others needs because I was in a chair.
I think that's called reciprocity. It's sometimes hard as a disabled person to get into reciprocal relationships as the disability seems to call forth needs in others to subvert their will, their wants for you. "Here let me get that for you," "No, no, you just sit there, I'll do it," it is tempting to give in to the subservient position because it's an easy role to play. I see so many people with intellectual disabilities who've been trained to take, been taught they've got nothing to give, been reduced to wants and needs - the burden status. I like this reciprocity thing, I like being seen as powerful enough, and interesting enough, and demanding enough, to be an equal part of the social environment. "I can get that myself thank you, now may I get one for you too?"
Reciprocity. It's a model of human interaction that really works. Research has shown that reciprocity is the single most important social skill for the maintenance of human relationships. It's about giving back. Considering others. Adapting, and ramping the world for others - ain't that a kick in the rubber parts.
Yep, it works for me. It works for them. And last night it was what makes 'us' us.
4 comments:
You have a lot of thoughts here.
I stayed in a handicapped-accessible hotel room once and learned that people in wheelchairs, and any others who stay with them, do not brush their teeth. Because the edges of the (wheelchair-accommodating) sink sloped in, there was no lid for the toilet so one feared to put anything on the back, there was no shelf or cabinet, or ANYWHERE to put my toothbrush. Let alone hairbrush, makeup, or anything else.
The independence/reciprocity thing is hard-wired into us. That's why the whole "Do it, self!" thing that makes us stand there for 20 minutes, needing to go to the store, while the toddler puts on his shoes. And 4-yr-olds take pride in helping set the table. Sad to think about these things not being allowed to develop, or actually being frustrated, in a person due to somebody else's good intentions.
Some good thoughts there. This country has SO much catching up to do and start thinking about the less abled.
There are properly accessible hotel rooms in England (including walk-in showers). They may be harder to find than elsewhere, of course...! We booked a fully-accessible room in Leeds, then when we got there we found that the booking system hadn't worked and we were in a standard room. Happens a lot.
Yes, reciprocity. It's particularly difficult when you're outside of your home or adapted environment. I found it very hard to contribute to Christmas with my family this year, and I felt bad about that. Partly, though, this was because of the incredibly inaccessible houses my parents live in. I haven't yet learned how to deal with needing to go up and down stairs seven times in order to clear the table, when that wipes me out for two days afterwards... It's tricky, finding a balance between looking after yourself and living indepedently, in a world that doesn't adapt to you. It might take me some time to figure that one out.
I've thought about this post alot, and left it a few days to calm down before posting my response.
I'm glad that you have all the equipment and access requirements around you to make life the way it should be for all those with disabilities, but for many of us, that is an unimaginable luxury.
A walk in shower is something I can only dream of, I have no grab bars, only a shower over a bath, that like you say is 2 feet off the ground. How can I be disabled and use it? Because I simply have no choice. Like so many others in my situation. I have nowhere else to live, a landlord who quite understandably didn't want social services to incompetently start drilling holes in the newly fitted expensive bathroom, and both social workers and occupational therapists who refused to give me such luxuries as bath lifts because I was too disabled to use them and might fall. Their solution, either strip wash at a sink with a perching stool I couldn't use, or never wash. My solution, figure out how to get in and out of a bath dangerously by dislocating hips, knees, shoulders, you name it regardless.
That's just the bathroom, and I'm far from unique. No care providers because care is rationed and increasingly expensive anyway. Even for those who's only income is state benefits.
When thinking about reciprocity, please Dave, remember privilege too.
Bendy Girl
Post a Comment