FWD Retrospective Week: Disability Narratives Edition
Welcome to FWD retrospective week! We’ve taking a look back at some of our favourite posts on a variety of themes over the next week.
One of the many, many things that bothers me about disability & accessibility is how many of the problems can be solved by throwing money at them.
I have a chronic disease that isn’t curable and I have not heard of it going into remission. This is not temporary. Sometimes the symptoms are excruciating. Sometimes the symptoms aren’t so bad. They never go away. Even if I never feel any better than I do right now my life will still be worth living and I’ll still be happy and I’ll be okay because I work really hard at living my life and being as happy as I can in it. For me it includes accepting that I will not get better. It also includes some complaining about feeling rotten because accepting that I won’t get better doesn’t turn it into rainbow-flavored unicorn shit.
It’s about creating a space for everyone, a space where people can self identify how they like, and feel the way they like, without being judged or shamed not just by society, but also by fellow people with disabilities. There is room for all identities and lines of thought in a world where disability is a neutral identity, and people are allowed to shape it and feel about it the way they want to, rather than being pressured to perform, think, and believe in a particular way for the benefit of others.
It’s not that our voices aren’t out there. It’s not that it’s impossible to find people with disabilities to write about disability and to write about their experiences. It’s that our voices are rarely centred beyond the disability community. We are rarely asked, for example, to write about our own disability for the Washington Post. We are rarely profiled by the Daily Mail. The media wants to talk to the people who live and work with us, with our friends, but they do not want to talk to us.
Writing publicly about these things, on the other hand, may get me comments that I do not particularly want to face. This could not have happened. How do we know you’re not just making this up? Do you always have to write about yourself? Let’s look at this objectively. Why can’t you focus on something more important? I’m sure they didn’t mean it like that. Why can’t you just let it go? It was so long ago, anyway. We all have difficulties, what makes you so special? Who do you think you are?
There are a lot of people who seem to subscribe to the “just-world” theory of events — that is, anyone who has anything bad happen to them has done something to “deserve” it. One sees this attitude thrown around quite a bit in relation to disability and illness — for the smoker who gets lung cancer, for some people who become severely disabled due to accidents, for the “angry” or “repressed” person who is diagnosed with a deadly illness. One sees it in so-called New Age “theories” of illness — that illness is a physical manifestation of bad karma or some other buzz-word often appropriated from a non-Western belief system.
In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us.
For me personally, the willingness that I “should” have to help well-meaning folks learn is also an energy issue. I am a person with disabilities, several of which I have written about at length on this website — and one of which is a pain condition subject to flare-ups. Thus, I have to manage my time and energy extremely carefully. Having to explain basic concepts over and over again to strangers on the internet because they’ve deigned to tell me that they “want” to learn — and some of whom may think, by extension, that they are somehow entitled to my time and energy — takes work. Writing takes work; additionally, a lot of bloggers do the blogging and responding to comments thing for free, on their own time.
This post started with me suggesting a FAQ on reclamation for the “Finally, a Feminism 101 Blog” blog: “But there’s a whole feminist magazine called Bitch and a book called The Ethical Slut, so why can’t I call you a slutty bitch?”
[WARNING: descriptions of obstetric rape and PTSD]
I’m telling you this story so you know something very important. Medical professionals are people, with their own biases and experiences. Sometimes they will make mistakes and the wrong judgments. They will try to fit you into convenient boxes, tell you things about yourself that just aren’t true.
Disability is not your cute fun analogy. You know why? Disability is its own thing all by itself. Disability is a part of many people’s lives and identities, it’s an experience in the world, a political one, a personal one, a sensitive one, a serious one. It is not a sweet little term you can charmingly appropriate for whatever other purpose pops into your head.
Those are your limits: you cannot understand people like us outside of your framework. You are trying to limit us with your ideas of who we can be.
I will not fit your limited narrative. I tell my own story, giving shape to my own experience.
It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”