[The wheelchair I’ve been using was a donation from the family of a woman who passed away recently. Although they could have chosen to sell the chair, or do something else with it, instead they donated it and made it possible for me to get one. I wanted to write them a note thanking them for their donation. I’ve edited out the name for the sake of their privacy, and using a stand in name in one place. Friends who read the letter suggested I post it on here for others to see and maybe help encourage other people to be generous with their inherited accessibility devices.]
Yesterday, for the first time in I don’t know how many years, I was able to experience nature that wasn’t immediately adjacent to a parking lot. I got to watch the sun setting gently as I made my way along the river and feel the wind in my face.
I can’t remember the last time I was able to spend that much time outdoors without being overwhelmed by pain.
Did I find some new magic med? Did I manage to reduce my symptoms?
I am terrified of appropriation.
I don’t mean that in the sense of say using AAVE, although there is an element of that. I don’t mean that I’m scared to be called a hipster or a fake whatever. I’m not even scared of claiming my own at times, when I need to.
I am scared that my identities, who I am, the ways I define myself, are costumes. Illusions so clever, so complete, that I managed to fool myself as well as others with them.
I’ve mentioned this before when discussing my own gender feels. Life hasn’t stood still long enough for me to really examine my feelings further regarding that aspect of things. I’m lucky enough to have surrounded myself with a community who will support me no matter what my ultimate gender identity ends up being and if feel the need to do a thorough examination sooner rather than later, so for now I can wait. Or is this just the excuse I tell myself as I avoid my fear of taking on a label, an identity, until I am completely sure that it belongs to me.
To my knowledge, I’ve never taken on an identity that didn’t belong to me.
I’ve been curious about my past heritage, but I don’t think it entitles me to claiming those cultural identities and is rather an interest in knowing my history. I discovered my ADHD before diagnosis, but even if I was able to fool the doctors and the tests, I can’t fake my reaction to the meds. There are enough people among my friend-list who would think nothing of tearing me to shreds, were I in the wrong, to act as a safeguard. I know all this.
Accessibility Devices are, for all intents and purposes, a part of our bodies and should be treated as such.
DO NOT touch an accessibility device WITHOUT CONSENT. In case this is not clear, I mean the consent of the disabled person.
Do not touch a wheelchair without the consent of the person in it.
Do not touch a walker or a cane without the consent of the person using it.
Do not move a walker or cane out of the way, even if the person isn’t using it right now.
Do not push a wheelchair without consent, even if you are just trying to help. Even if you just want to make it easier for them to get up a hill.
Do not put a cane where the person who needs it can’t reach it. It is not funny.
Do not take a person’s prosthetic. It is not funny.
Do not push a person’s wheelchair out of your way, or to make them go faster. If you wouldn’t shove someone out of the way, then consider pushing someone in a chair as the equivalent.
Do not take a person’s hearing aid. It is not funny.
Do not try to make a person’s hearing aid produce feedback.
Do not push someone wearing a hearing aid into a pool, or spray them with water.
Do not touch a service dog. Doesn’t matter how cute it is. Doesn’t matter how small it is. If the dog is wearing his vest or currently working, DO NOT TOUCH THE DOG. (Or Any Other Service Animal)
Do not talk or stare at a service dog – dogs are social and if they are paying attention to you they are not paying attention to their job. They’re trained, but they’re still animals who CAN get distracted.
Do not put a walker or a cane somewhere else, even if it is not currently being used.
DO NOT try to help by lifting their walker or the person themselves unless asked. If you offer, respect their no.
I’m multiply disabled, by whichever model you use. I am on disability assistance and I live in Canada where I even have access to healthcare. Given all this, you might think that the fact that I still have disability related depression, that I am proof that disability really is misery. That the medical model is right.
I want to make this really easy to understand.
I’m not miserable because I’m in pain.
As a result of all the different things going on with my body, not to mention our financial situation, finding clothes for me to wear can be really difficult. For some time now, I’ve been strongly considering starting to make my own clothes. In order to do a better job of this, I’ve been wanting to make a bodyform out of my own body shape.
I’ve been looking up different ways of creating one. There are tons of ideas out there, including ones using plaster, duct tape, insulation form, all sorts of ideas. I decided to combine all of these different ideas in the hopes of creating something fantastic.
At the same time as doing mine, I decided to also make one for Alyssa. For all that people give her lots of clothes, there are some pieces that she has always wanted but couldn’t afford. I thought it would be fun to also have a form of her shape, so that I could potentially make them for her.
I decided to start with hers, and while I suspected this might be the case for some time not, I finally had to admit defeat. Her bodyform was a disaster. First we ran out of tape. Then the foam wouldn’t set. Then the top foam sank into the foam that wouldn’t set. Then the whole thing ended up very tilted. Finally, the plaster would not stop crumbling and the whole thing finally fell apart today resulting in a dusty and crumbly mess.
I was that strange kid who knew at a very young age that I wanted to go to university. I don’t know when exactly it started, but I was working towards that goal from an early age. I used to read a bunch of different books on how to get the best grades to get into university. Many of them recommended doing extra credit projects, which would show the teacher my enthusiasm for learning.
I started many different projects along these lines. I remember one in particular, about the St. Lawrence Seaway, where I spend hours reading up on the history of the canal. No matter how much research I did or how many hours I spent motivating myself, none of these projects ever got finished. Homework too often waited till the night before it was due to get done. On the few occasions that I did manage to start an essay early, I would get significantly worse grades than those I wrote at the last minute.
When discussing the Social Model of Disability, one of the questions that comes up is: what about those people who actually do want a cure, or would benefit from one. What about the people with chronic pain, with terminal illnesses, or with degenerative conditions that do interfere with a person’s ability to function, regardless of accommodations? This very question occasionally leads to clashes within the disability community. Some believe that people with chronic illnesses should not be included under the definition of Disabled People. Still others use the existence of such people to push the Medical Model rather than the Social one.
I’ve seen the argument before that chronically ill people are not disabled in the same way as people with more traditionally defined disabilities like paralysis, hearing loss, vision loss, lack of mobility, and so forth and so forth, because they don’t perform disability the same way as others. The article I read, went on to describe examples of how their white cane, their dark glasses, their inability to navigate unfamiliar environments, even their service dog, all added to the disability performance. With a chronically ill person however, they argued, there is no performance. The ill person can maintain privacy or invisibility, thus not being treated the same way that “real” disabled people are. That chronically ill people are not disabled or even impaired, but rather sick.
Often times, the most difficult part of solving a problem, a social problem or others, is about framing it in the right way. If you are dealing with a situation, but you misidentify the source of the conflict or barrier, then any solution becomes impossible, or at least incomplete. The same is true of discussion of disability justice and issues of equality.
Many of the conflicts that arise between abled communities and mindsets, and disabled ones step from different framings of the problem. While many different constructs and models exist, the two mainly accepted ones are the Medical Model and the Social Model.
There is this episode of House, where the hospital hires a doctor who uses a wheelchair. As a result, House loses his parking space and is forced to relocate slightly further away. During this episode, House, the doctor in question, and Cuddy, engage in an argument over who deserves the closer spot. The audience is predisposed to assume that House is a selfish jerk, and so an important point about disability is missed by the majority of watchers – namely the way in which disabled people and different disabilities are pitted against one another in order to keep us from uniting in a way that might pose a threat to abled power structures.
The debate that takes place raises some of the many ways that disability concerns are generalized in a way that hurts some people while it helps others, and imposing an ineffectual rating system regarding what qualifies as disability and what doesn’t.