On Safe Space and Accessibility

This post was originally a comment that I made over at a FWD/Forward thread asking about accessibility. I thought that it deserved its own spot:

For me, in many ways the idea of “accessibility” is a lot like the idea of “safe space.” Someone asked me the other day what it means to be in a “safe space.” I told them that, for me, the concept of safe space isn’t necessarily a place where people understand me or are even necessarily friendly to me. A safe space is a place where I’m accommodated, by which I mean I’m in a place where I feel empowered to stand up for myself as a full and equal human being and assert who I am and what I need.

To describe what I meant, I made the analogy of being on a playground full of bullies who are hitting you: for me, an accessible place is a place where I’m empowered to do something about it, not necessarily a place where things like this don’t happen.

In this way, I feel, accessibility or safety is more than just accommodations or opinions which make it easier to be in society but an overarching, holistic attitude which fosters empowerment.

Jerry Springer on a Bus

I want to tell you how I managed to start a race war just by being disabled. It's just too darn WTF not to share:

So I was on the bus coming home after taking a philosophy exam and I was sitting in the very back of the bus, which I usually do in order to avoid people with cell phone cameras trying to get video of "that funny crazy lady." Anyway, pretty normal bus ride until this black woman and her boyfriend enter the bus and the couple sit next to me on the big long bench seat in the very back.

The woman is very, very friendly and talkative to the other passengers on the bus and I suppose it was pretty inevitable that she talk to me. I was a little surprised that she was able to identify my neurological condition that causes me to twitch and bark as Tourettes. I was much less surprised when, following the identification, came the intrusive questions, including the rare, but not unexpected, questions about my disabilities and my sexual life. Anyway...

After this exchange I was feeling a little bit self conscious about my tics so I was doing my darnedest to not bark and, for the most part, I was more or less successful. I was more or less able to, with great concentration and fortitude disguise my barks as something else that I felt much more comfortable with. Eventually, I just couldn't keep up with it anymore and I let out a good, loud, series of high-pitched barks.

A couple of stops back, a white man entered the bus and sat a few rows in front of me, far enough in front of me where he didn't notice me until I barked. When I did bark, however, the real fun started: The jerk decided that it would be funny to start taunting me by howling like a wolf.

Naturally I found very offensive. ...and so did the black woman who proceeded to shout something, riddled with profanity, that there was only *one* person on the bus with Tourettes and that the person who was making fun of me was a jerk. After a few seconds she located the man who was causing me torment and proceeded to ask him what his problem was. To which he responded:

"What the fuck is your problem you black-assed nigger whore!"

She hit him. He stood up and started threatening her, calling her a prostitute and dropping N-bombs left and right while pantomiming and demanding lewd acts while her boyfriend and myself stood angrily trying desperately to form words. Things got very, very close to being very, very violent and I commend the two people whom I was with for their self-restraint.

Someone pulled the cord and the bus stopped. All three of us got off, we all had enough. I'm sure that if things had been a little different and that if we had not had the opportunity to disengage like we did, things would have been a lot different.

And that's how you nearly start a race war just by being disabled.

It was one of the most frightening moments of my life.

Picoult: Irony in Prejudice

I've been following some of the buzz surrounding Jody Picoult's new book House Rules over at Cat in a Dog's World. Interesting, but unfortunately more of the same regarding how disabled people are treated in mainstream, abled, discourse. Her analysis of a discussion question for the book, however, caught my attention.

The question:

Do you know anyone with Asperger's syndrome? Did the descriptions of Jacob fit what you know of that person?

As Cat in a Dog's World already explained, the principle problem with this question is that it assumes that all Asperger's individuals are fundamentally identical, which, from a social scientific point of view, is a symptom of the fallacy of out-group homogeneity.

The idea of the cognitive miser holds that, as individuals, we have limited ability to think about the world around us and that we are simply not able to take into consideration everything around us. As cognitive misers, the theory holds, we conserve cognitive resources by creating mental shortcuts concerning the nature of the world around us, stereotypes, which allow us to predict our environment.

Additionally, those of us who spend the least amount of effort thinking about a certain aspect of our world create the most generalising, or stereotypical, cognitive shortcuts. Therefore, according to the idea of the cognitive miser, prejudice stems from an unwillingness to exert the effort to challenge our preconceptions.[1]

Anyway, I was musing on the idea that a stereotyping question in a book club which is meant to invoke critical thought could, in itself, be based on the unwillingness to think critically.

[1]Think about that in terms of privilege for a moment.

Breaking the Silence

I'm sick and tired of the silence surrounding my disability. I really am. My disability falls squarely into the highly visible and oftentimes highly disturbing camp. It's there, it's obvious, people care about it, it squicks people. I know this because I'm constantly being told by friends that so-and-so is feeling uncomfortable because of my movement disorder. But nobody brings these feelings up to me in person. Not ever. A silence surrounds my disability like almost nothing else in my life.

And when people aren't being silent about the discomfort my disability causes them, they're busy being silent, afraid that acknowledging that I'm just a little different than "everybody else" might somehow hurt or insult me. More silence.

Genderbitch, in her essay about the types of activists explains rather clearly in her discussion of "nukers" why silence is so poisonous. In order to combat oppression we need to speak out against it. In order to speak out against our oppression, we need to be able to speak. Silence surrounding our disability, sexuality, gender identity, race, whathaveyou silences our voice, ensures that we are not capable of self-advocacy.

A willingness to discuss the issue is prerequisite to social change.

This is why I want to make a huge shout-out and thank you to my social psychology professor. In talking about social assumption and bias on the first day of class he brought up my disability. Always respectful, but he brought it up. He created the environment where my disability, and disability in general, was safe to discuss. A place where the silence was lifted. In doing so he did so much more than any touchy-feely type could ever have done to advance my equal inclusion in society.

After he had brought it up and after myself and the class had a chance to discuss you could feel the tension and discomfort ease. Bravo!

~~
The Untoward Lady

"Hard of Hearing" in a Deaf World

I thought I should mention this because it's such a great illustration of the social model of disability: the idea that the structures and methods created by the dominant majority, abled people, create the handicap experienced by disabled people and that disability exists in the intersection rather than in the individual.

For those who don't know, I have a movement disorder which causes me to experience tics and spasms including in my eyes, eyelids, and neck. This makes looking at things at length difficult.

This week is my first week of instruction and yesterday I had my first introductory ASL class. Our teacher is Deaf and, in order to go over the course material and green sheet in a way that we would be able to understand, she was speaking though an interpreter. I have a little bit of knowledge about sign language so I was focusing on her pretty intensely, seeing how much of what she was saying I could understand without the terp.

Turns out, my difficulty regarding my eyes caused me to miss a tremendous amount of what she was saying in terms of me not seeing her signs due to either compulsively looking elsewhere or though having my eyes clamped shut/fluttering.

So I thought to myself: In a Deaf world, I'm handicapped.

This is all very basic and rather 101 in terms of disability rights. Nonetheless, the illustration is pretty cool.

For those who are wondering: Yes, I'm still following though with trying to learn ASL, it's a language that I've wanted to learn for quite some time. The professor is being very accommodating so I think I'll do just fine. Once I start to get a grasp on the use of ASL I'm hoping that my predictive language abilities will help me fill in the gaps for the words I miss.

Musings on Pharmacological Personality Change

I was reading FWD/Forward today when I came across this post about anti-alcoholism medication which reviewed this article of the same topic. From the FWD/Forward piece:

“Is life really worth living if you’re sober all the time?” – while the original author clearly intends this as a joke, I find it similar to arguments I’ve heard that “messing with someone’s emotions” through pharmaceutical intervention will inherently result in significant changes to that person’s personality and identity. This seems similar, in that it questions whether life will be the same if such a fundamental component of their self is being affected by pharmaceutical treatments.

Those who know me are aware of how critical I am regarding psychoactive pharmaceuticals. I'm critical of how psychiatric drugs are used as chemical restraints, how they are used without proper informed consent, how they are often used in leu of a situational understanding of the patient's life. There are a lot of things I am critical of in regards to psychiatric drugs. It might surprise many, then, how okay I am with the potential for medication to alter, even fundamentally, an individual's personality.

I'll repeat that: I'm okay with the fact that psychiatric drugs affect people's personality.

Here's the thing: it's not a bad thing to change as a person. We do it all the time. Normally, we call it "growing" and we do it every time our lives face upheaval and evolve. Our personalities are never truly set in stone. This is a good thing.

Nonetheless, society places very strict regulations upon appropriate growth. Growth which occurs though otherwise sanctioned behaviour, such as needing psychiatric medication, becomes taboo. It shouldn't be. Taking psychiatric medication should not be something which is looked down upon in our society any more than any other needed medical treatment. The state of attitude towards psychiatric medication in our society is nothing less than pure ableism.

So I say: Personal change should not be viewed in any different light when it is affected though psychiatric medication than when it is affected though any other means of personal growth.

Finally, this all comes down to informed consent. Are the people who are taking the drugs which impact their personalities fully engaged in the decision to take their medication? Are they knowledgeable regarding the personal impact their drugs will have on their personhood, are they willing to accept these changes, and are the changes which these drugs affect something which they accept as positive?

Forcing individuals to take drugs which fundamentally change who they are is wrong, but that shouldn't extend to voluntary, fully informed drug use.

~~
The Untoward Lady

Artificial Feeding

I was reading this article on nursing homes forcing PET tubes on residents as a requirement for residence the other day [hat tip: FWD/Forward] when I noticed something about the language in the article. Let's see if you can pick it out:

Thousands of elderly people are being forced to have tubes fitted so they can be artificially fed if they want to be admitted to a care home, a major report warns today.

Ignore the medicalization behind the word "admitted" for a moment, what I'd like focus on is "artificial feeding."

What is it about this so-called "artificial feeding" that makes it artificial? Is food not introduced into the individual's body providing sustenance and life? Are individuals with PET tubes not nourished? Or are the nurses caring for these individuals just pretending to feed their disabled residents?

No, of course not. Reading what I just wrote my arguments seem almost silly or strawman, except they aren't.

The fact of the matter is, the whole reason why so-called "artificial feeding" is considered an artificial form of sustenance rather than a valid, true method of eating has to do with how it violates abled norms regarding nutrition. Disabled people with PET tubes do not eat in the same way that abled people with forks and knives do. Therefore, because their method of gaining nutrition is alien to most people and does not conform to their understanding of eating, it fails to be recognized as a valid form of eating. It becomes "artificial."

Mountain out of a molehill? Shoot me. The fact of the matter is, the exact terminology we use to describe a particular form of adaptive eating does not in and of itself affect the civil rights of disabled people. Nonetheless, the attitudes which render these words, the idea of the invalidity of adaptive techniques based on their failure to meet abled standards, do.

It needs to stop.

~~
The Untoward Lady

[Edit: it also occurred that it's "artificial feeding" rather than "artificial eating." It is passive, the disabled individual as the helpless consumer with the focus of action on the abled caregiver. A bit outside the scope of this post, but something I felt I should address nonetheless.]