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

Attempted Child Rape at SJSU

The Center for Public Integrity not long ago released a report detailing rape and sexual violence on college campuses and, even more disturbingly, the too-often attempts at universities to engage in rape apologism, attempted cover-up, disempowerment of survivors, and shielding of perpetrators in the name of campus reputation. An excellent summary of that report can be found at The Curvature.

Now it seems that, based on reports from CBS channel 5 and The Spartan Daily, I may have the dishonour of having my own campus, San Jose State University, perpetrate the sordid tradition of manhandling an attempted rape. Only this time, it was attempted child rape allegedly perpetrated by one of the university's own daycare workers, Calvin Shiu.

CBS 5 reporter, Kiet Do, broke the story on October 29th, 2009. The link to the CBS5 video and The CBS5 CrimeWatch blurb [text]. I transcribed the video below:

Archorman> Now to a CBS5 exclusive: we have learned that a San Jose State student has been arrested for allegedly placing a video camera inside a campus bathroom. This kid, though, discovered that it happened in the same building as a daycare centre.

Voiceover, showing daycare centre> At San Jose State's Child Development Center one of their own employees has been allegedly been busted for videotaping people using the unisex bathroom.

Woman on the street> Uh, yeah! Of course that's weird and creepy!

Voiceover, showing covert camera> Investigators say a teacher's assistant by the name of Calvin Shiu hid a device similar to this outdoor helmet cam somewhere inside the bathroom. They are typically silent and don't even look like cameras.

Kiet Do, inside bathroom stall> The picture quality from these devices aren't bad, you can pretty much see everything inside the frame. San Jose State Police say that the camera was hidden long enough for at least four people captured on tape. On Tuesday, one of those victims found the device and reported it to the boss.

Kiet Do to University Official> Don't you think that it's fair to tell parents about this if there is something like this going on here?

[Do is ignored]

Voiceover> The Centre's directors didn't want to talk but sources tell CBS5 managers told some victim to stay quiet and keep the incident under wraps. It's not clear when they were planning on telling parents and staff but two days after the arrest, every parent we spoke with had no idea what happened.

Another University Official> Do you want to panic families? This is not fair!

Kiet Do to University Official> Is it fair for you though -- let me ask you this -- for you to not tell the parents about this?

Another University Official> Okay, okay you guys need to go and [...]

Voiceover> SJSU says that Shiu was fired Wednesday. The 20 year old is a student and passed a thorough background check. Spokesman Larry Carr says there is now a plan to inform parents.

Larry Carr> We've been trying to gather the facts specifically about the case as we can understand it before we help all of our families and our employees understand the case as well.

Unidentified Man on the Steet> [shrugging] Hopefully whatever happened... it wasn't affecting the kids. You know, it was just related to adults.

Kiet Do> You're hoping.

Unidentified Man on the Street> Yeah, I'm hoping.

Voiceover> Officers have searched Shiu's home and said he's been very cooperative and police insist, no children were videotaped.

Kiet Do, to Camera> And Shiu is now out of jail facing one misdemeanor count of making a secret video recording inside a bathroom and is still a student and could face anything from suspension to expulsion.

Anchorman> [gives thanks for the story]

The Spartan Daily, the San Jose State student newspaper, came out with its own story four days later. Excerpt below:

Harris said that, in addition to his arrest and termination of employment, Shiu would also be subject to discipline under the SJSU student conduct code.

According to an article in the San Jose Mercury News, Shiu has been suspended for three days, and the university is attempting to have the suspension extended pending a hearing, which is separate from any criminal proceedings.

Cheryl Vargas, Associated Students executive director, said the incident was considered a personnel matter and not open for public discussion, pending completion of the investigation.

In case you missed it: he's being charged with a misdemenour.

Supposedly there is a San Jose Mercury News story about the incident but neither Google nor the Mercury's own search field turned up a story.

Normally I would comment a great deal more about a story such as this but owing to my relationship with the university I have decided that it is best if I kept it brief. So I offer only this: Covertly videotaping people in a public restroom stall is at best sexual assault. In my book, it is rape. When you select a restroom which is part of a daycare centre it becomes child rape. Unsuccessfully attempted or not, I'm appalled at how little attention this story has been getting from the media and the public. It's time that changed.

~~
The Untoward Lady

[Disclaimer: This post is based on information provided by CBS5 and The Spartan Daily and I have no personal connection to the alleged incidents.]

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.]

Participation on the Basis of Sanity

Prejudice based on mental illness is disgustingly insidious in our culture. Scratch that, prejudice based on mental illness is insidious in almost every cultural tradition that I can think of. In society's eyes, if you have mental illness, you're less than human. At best you're incapable of truly reasoned thought, your feelings and observations dismissed as the ravings of lunacy. At worst, your a menace to society, a ticking timebomb who can at any moment loose their grip on reality and explode.

I am labelled insane and because of this I am deemed unfit for participation in society.

For me, maybe you could call me lucky in this regard, but I have some privilege. I have the privilege of not actually having what society considers a mental illness. My neurological problems are not what society deems insanity. [1] I am considered sane. When people get to know me, my perceived sanity becomes an explicitly stated fact of my social existence.

I am labelled sane again and because of this I am deemed safe and fit for civilized life.

I can't describe how this hurts me. You have to understand that some of the closest people in my life have serious mental illness. These are people I love, people I would lay down my life to protect. These are the people who have to truly shoulder the burden of hatred. These are people, according to society, unlike me.

These are people who society feels a need to explicitly differentiate me from.

This needs to stop. Every time someone says "she's not crazy" it hurts. It hurts people I love and it hurts me.

[1] I have Tourette Syndrome.