Tuesday, January 31, 2012

Being A Person

Amanda Baggs has yet another post about how institutions aren't made bad by abuse and neglect, how some of the worst institutions have no one getting beaten or left in an unchanged diaper for hours or any of the obvious physical signs of institutional abuse.

As a person who has never been institutionalized, I don't really get it. And as a person who has (though not in 'institutions', or at least I think not) been a caregiver, I agonize over this. How do I avoid being the 'bad kind' of staff?

A recent journal article I found gives me a hint. Titled "Did you find that out in time?", it's a qualitative study of five families who either refused prenatal diagnosis knowing that a disability was likely, or had prenatal diagnosis confirming a disability and did not abort. The families are varied - one woman had a child with an extra marker chromosome (which turned out to have no clinical effect, but they couldn't have known that before birth), one family had a baby diagnosed with spinal muscular atrophy while the younger child was still unborn, one family had a child with cystic fibrosis and refused testing for another child who turned out to have CF as well, one family had a child with Down Syndrome, and one couple had both parents affected by hereditary skeletal dysplasias (causing short stature). It's an interesting read, and if you have access to it I recommend reading the article.

Anyway, one theme several parents mentioned was negative reactions from others. This one, by the father of the DS child, really shocked me (Tessa is the mother):

"I got zero support from my family and they made it very clear that they didn't really want Emma to be part of their lives and focused a lot more on [our other two children], with presents. To the point that one day [small laugh] ... my mother turned up with two scarves, which she'd knitted, one for Felicity and one for Tegan. And Tessa said, 'It's just outrageous'. She said, 'What about Emma?' 'Oh, she'll never notice'. And she did! [small laugh] She was crying. See she just wants to be like her sisters."

She'll never notice? From my experience with Down Syndrome children, they may be behind other children, but they make it quite clear that they notice and understand a great deal about human relationships. Very little is said, in this article, about Emma's functioning level, but from my knowledge of DS I'm assuming she's verbal, and able to express quite a bit through words. Which raises the question - how could her grandmother even think she wouldn't notice that she was excluded? (She'd likely have been wrong even if Emma was much more severely disabled, but it would have been a more reasonable mistake, since if someone genuinely wasn't capable of noticing such blatant exclusion, they would probably be very severely impaired.) If she stopped to think, even for a moment, about what the world likely looked like through Emma's eyes, she'd have known that Emma would notice and feel the exclusion.

Which implies that she didn't. That it didn't occur to her to put herself in the position of a child with Down Syndrome. That she hadn't thought of Emma as someone with a perspective - as a person.

Which brings me to something else by Amanda Baggs. Her Youtube video, Being An Unperson. In that video, she does describe some blatant abuse that can result from being seen as an unperson. But you get the sense that this abuse is only a side effect of the real problem - the denial of personhood. As an author, I tend to think of it as a person being seen as 'not having a perspective', in other words that the story couldn't possibly be told from their eyes. (Even if this kind of person is the protagonist, they are generally depicted in a kind of third person that seems written from a different viewpoint than their own.) When she compared this kind of treatment to how you'd treat a child, at first that didn't make sense to me as I don't treat children this way. (And you shouldn't - one thing developmental psychology has taught me is that kids have a lot on their minds.) But others do, and I think that's what she's trying to get at.

Even if this attitude doesn't result in blatant abuses, it shows through in their behavior. In whether they chat easily with a person who can't reply back, assuming there is someone on the other side listening. In how they smile at the person. In the amount of effort made to understand the person's attempts at communicating (even if they aren't successful, since after all no caregiver is perfect), and the effort made to offer and honor choices made by the person. I make a point to imagine every child I work with as an adult, thinking back upon their encounters with me, and ask myself whether they'd see me fondly or negatively. (Just like how I think back on my teachers and remember some fondly and others with pain and hurt.) Everyone, no matter how young or how disabled, has their own story, and even if they lack the skills to tell it, that doesn't mean it's not there. I don't want to be a villain in those tales.

Thursday, January 12, 2012

Tone Deafness

This guy doesn't think anyone is tone deaf, yet he's the one who made me think I am.

The video depicts a talk by a guy trying to convince everyone to love classical music. Or more properly, make us realize that we already do love classical music and don't know it yet. (You may want to go and watch the video now.)

Firstly, he depicts the development of a hypothetical child learning piano. The 7 year old, to me, sounds really halting, but all the other ages sound equally good, except that the 11 year old is suddenly better.

And then he gets to the really annoying bit. He talks about different categories of people in relation to classical music, and the last category are 'people who think they're tone deaf'. He says you can't be tone deaf, and to illustrate that, he talks about all the things a tone deaf person would struggle with. Here's the list:
  • you couldn't change the gear on your car - I'm assuming he means by sound, like how my Dad can tell by sound when I need to shift gears. I shift gears by watching my spedometer, not by listening to the engine. Sometimes I notice the engine sound changes just before Dad tells me to shift gears, but usually it sounds no different. (Then again, I might change in this once I'm a more experienced driver, since I do just have my learner's.)
  • you couldn't tell the difference between somebody from Texas and somebody from Rome - Here I disagree. There's a lot more to accent than tone. If you can recognize phonemes you can tell when someone uses the 'wrong' phonemes or leaves them out, you can distinguish many accents. I do notice a twangy sound to Texas and a musical sound to Rome, but with many less obvious differences I'm a lot poorer at distinguishing accents than most people. Boston versus New York, for example, I can't tell. Or Australia versus Cockney.
  • you couldn't recognize different voices on the telephone - I can recognize immediate family, and people with very distinctive voices, but I confuse people very readily over the phone if they don't introduce themselves. Then again, other people confuse me with Mom, so maybe that's not that unusual.
  • you couldn't tell what mood a person's in by their voice - Yep, autistic. I can tell things like yelling, talking fast or slow, but I find telling how other people are feeling is a lot more difficult for me than it is for most people.
So I'm tone deaf, or at least tone hearing-impaired. And this guy doesn't think I exist. (His arrogance is also extremely annoying.)

Then the piece by Chopin. The BC thing, which he says the C should make the B sad, it doesn't really sound sad to me. I've learnt to recognize that it's supposed to seem sad when you have that kind of combination, and I can hear a difference between it and a 'happy' combination, but it doesn't have any emotional meaning for me.

I also don't expect anything next after BAGF. When the entire room hummed a next note, it really didn't make sense to me where they could've gotten that note. When he's doing the 'wrong' chords and then the right one, I can hear a difference, but neither sounds any better. The 'right' chord doesn't seem satisfying or anything.

And when he asks me to think of someone I loved who is dead, I found it extremely difficult to keep both that and the music in mind. I kept visualizing Timmy (my favorite cat) and tuning out the music altogether, then thinking about the music and forgetting to keep Timmy in mind, and constantly vacillating between the two. My brother says to him the music became the 'background music' for a mental movie about Timmy. His only criticism was that Timmy's meows don't harmonize well with Chopin.

To me, classical music is mainly just noise. I can hear some differences in it if I focus, but it doesn't hold any meaning to me. I do like music with lyrics, because I like the lyrics. But music without lyrics (or with lyrics in another language) is just noise to me. And that's why I say I'm tone deaf.

Monday, January 09, 2012

The Things I Love

The next disability blog carnival, hosted by David Hingsburger, has the topic of 'the love we have for the things that make the world accessible for us'.

This is a tricky one for me, because I use very little adaptive equipment. Accessibility for high functioning autism is not primarily achieved through adaptive equipment, it's achieved through people. Tolerating a lack of eye contact or other unusual nonverbal behavior, using literal speech, explaining things directly that others pick up implicitly, not getting offended by our innocent social gaffes, warning us of upcoming changes in plans... Most of these things can't be done by a piece of equipment - they must be done by the people we interact with.

In fact, when I think about what little adaptive equipment I do use, it's in very limited and exceptional circumstances. I get a room alone and computer for exams at university. I occasionally go to a Snoezelen room, which is a special sensory room for people with developmental disabilities to experience controlled sensory stimulation. Once, I used a wheelchair for a museum trip because standing too long is painful. For awhile I used a notebook to communicate when I was having a meltdown, but I lost the notebook and haven't had a meltdown that bad for a long time anyway. About the only thing I used on a daily basis was a beeping watch to help with poor time sense, but I mostly felt annoyance towards the thing. (It felt annoying on my arm, kept getting lost if I took it off, and made annoying sounds when the alarm went off, which was even more annoying because I kept forgetting to change the alarm when the corresponding event was over.)

My biggest source of accomodations, really, is my parents. But that's too easy. So instead, I'll talk about the things that I use, which aren't necessarily adaptive equipment (in that they don't compensate for disability), but are important for my functioning and enjoyment. And these are the things I do, in fact, feel genuine affection for.

Firstly, there are my pads of paper and my pens. I especially like black pens that write easily, and I get rather possessive of these and feel genuine sorrow when they die. My papers carry my stories, which channel the people I have created in my mind and the tales I can tell about them.

It's hard to describe how important my stories are to me. When I told them with twist tie people, those twist ties felt like an extension of myself - now my pads of paper do. (This is why it was so upsetting when my teachers would confiscate my twist ties and never give them back. If you do feel it's necessary to confiscate a child's possessions, give them back afterwards!)

There's also my jacket. I tend to wear a jacket in much warmer weather than most people. Partly, this is simply because I'm slow to adjust my clothing to the weather. But whereas I wear runners in fall about as much as I wear winter boots in spring, I start wearing my coat much earlier in fall and keep it on longer in spring. Only when the climate gets so hot that I can't tolerate it do I take my coat off.

My jacket is a shield from the world, because it blocks touch and some sights and sound (especially with my hood up) and the weight of it is comforting. A lot of people with sensory processing differences use a jacket to help with sensory regulation, so I guess maybe you could argue my jacket is adaptive equipment even though it's not intended that way. I like to wear large jackets - when I was younger, I wore an adult-sized jacket that I could fit my legs inside to curl up and keep warm.

My jacket is also a world I carry with me. I store a lot of things in my pockets. When I played with twist ties, my twist ties were kept in my pockets - both the creations and the unused twist ties. My papers don't fit in my pockets, but my pens do, as does the memory stick I've been typing up my finished stories onto. I also stick candies, notes on things like journal articles, and my ID cards in my pocket. As well as wrappers that I couldn't throw out at the time. The weight of my pockets adds to the comforting weight of my jacket, but more importantly, they contain all the small things that I want to have with me at any time. Someday, I'd like to have a jacket entirely covered in pockets, all zippable so things won't fall out.

The last 'thing' is the Internet. The Google homepage gives me a little feeling of happiness when I see it, because it's been my portal to wonderful discoveries. I was basically educated by the Internet. In school, most of my true learning took place in my free time when I googled things. When I was homeschooled, I spent almost all of every day on the computer, and my education came primarily from the results of Google searches. (Plus PubMed, of course.)

The university libraries give me a similar feeling as Google does. I spent many a happy hour curled into a corner of the library with a stack of books on my chosen topic. My Dad has a photo he took once when he came to fetch me from the Education library. Photos taken without the target's knowledge always seem to show the person's personality more clearly, and in this one, the joy of concentrated learning is plain in my demeanor. My idea of heaven is a library with every book ever written, and myself able to read any language.

These are the things I love.