Sunday, April 27, 2008

Occam's Scalpel

Gene therapy 'aids youth's sight'

I want to start off by saying that I am not against medical interventions. I believe in free choice and control over what happens to a person's body. I am, however, against ignoring simpler solutions and denying people rehabilitation training! If you're going to use medical interventions to eliminate blindness, do it for the right reasons. Vision is great, it's useful, but it is not the only way to do things, and we should not be creating false dichotomies of cure vs. helplessness.

Do blind children and teenagers in Britain not get O&M training?

As a result he can now confidently walk alone in darkened rooms and streets for the first time.
Um...ok, well, he could have done that if he had a cane and basic O&M skills.

Before the procedure, he could hardly see at all at night and in time he would have lost his sight completely.
Traumatic, yes, but not tragic, given proper rehabilitation training and assistive technology.

But Stephen did not notice these changes until he confidently strode through a dimly-lit maze designed to test his vision.

Until then he had kept walking into walls - and it would take him nearly a minute to walk a few feet.

Again, this problem could easily have been solved with a cane and O&M training.

For the first time he could see the cracks on the pavement, the edge of the curb and markings on the street.

He recently began walking home late at night from the railway station.

This is done by thousands of blind people every day, using their canes instead of their eyes.

Stephen also says that it has really helped his confidence.
Nice to know that a person's self-esteem should be based on how well his eyes work.

He is now able to socialise more late at night with his friends. And, as an aspiring musician, he says he can see the frets on his guitar better - and can move around more on a darkened stage.
I know blind guitarists, and blind people who socialize with their friends at night. This does not require vision.

There's more to the article but I am too angry to write responses to it.

Monday, April 21, 2008

Not always like you think

A quickie before I go to bed, I may or may not write more on this topic later.

As a society, we try to make children safer by educating them about the dangers they may face. Two major problems with this are that even adults don't understand the problems or the dangers. Children are more likely to be molested by people they know and trust, but the emphasis is placed on "stranger danger." In our attempts to simplify things so that children understand them, we leave out important details that might help them generalize concepts to a variety of situations. Children with developmental disabilities in particular often have trouble generalizing concepts--if it doesn't fit exactly with the examples they know, they may not recognize the same type of situation if some details are changed.

Parents might fear that their children will be abused at day care--but by the staff. What if the real danger is other children?

I was 23 years old and had been living away from my parents for two years before I realized that my father was an alcoholic. There were countless examples of alcoholism that I was shown as a child and a teenager--at school, girl scouts, and cultural examples on television and in books. My father wasn't like the examples that I saw, but he still abused alcohol, and it affected him, his marriage, his family, and his other relationships.

Sunday, April 20, 2008

If it works, why not?

Yesterday I attended the monthly meeting of my local chapter of a by-and-for-blind-people organization. I don't go every month because I'm often too exhausted and need all the weekend time I can get to recuperate and steel myself for the next work week, and sometimes the weather is too crappy to be outside waiting for the bus--and, to be honest, a lot of the attitudes of the individual people in the organization, and the official positions of the organization itself irk me. The organization does a lot of good in advancing the public image and understanding of blindness, but they do a crappy job of accommodating other differences, whether that be additional disabilities, race, religion, sexual orientation, etc.

The theme for the current Disability Blog Carnival is "Abuse." I don't feel equipped to do justice to the more mainstream interpretations of this (physical and emotional abuse), although I have personal experience with both. I look forward to reading what others have to say. However, as a person with multiple oddities/variations from the perceived norm, I'd like to discuss a lesser-thought-of family of abuses: willful ignorance and dismissal of minority/marginalized groups by other minority/marginalized groups.

In social theory, one speaks of privilege and power: class privilege, white privilege, male privilege, ability privilege, etc. These privileges exist not because of personal merit or effort, but because of a self-sustaining system that unequally distributes resources and power within groups. The more categories of privilege one falls under, the more likely one is to have resources and opportunities, and the more likely one is to take these privileges and opportunities for granted, to the point of being unable to recognize that they even exist. It's this ignorance that leads to further marginalization of the groups without privilege: "If I can do it, so can you, what's your problem?" or "Those people just don't measure up, it's just the way things are." When the people with the power have things set up in the way that's most ideal to them, they feel threatened by any attempt to change the way things are set up. Whether one actively or passively (through ignorance) resists change, the result is still the same. This shows up especially well when one is dealing with attitudes towards disability and accommodation.

Getting back to the meeting yesterday, I observed several examples of people with disabilities failing to recognize the rights and needs of other people with disabilities, even though the need for accommodation and respect should be more obvious to a person with a (albeit different) disability than to a person without any disabilities, and to recognize that a person with a similar disability may have different, fewer, or additional needs for accommodation. Being figuratively crapped on by another disabled person stings a lot more than experiencing the same prejudice from a person who isn't immersed in the disability culture and concept of accommodation.

I heard an elderly man criticized for using a white cane that's sturdy enough to use occasionally as a walking stick, as opposed to the flimsier type of cane the organization favors. I use both types of cane, and they have advantages and drawbacks. Yes, the long, one-piece fiberglass cane is more sensitive and better for walking quickly, but if one can't walk very quickly anyway, what's the harm in using a shorter, sturdier cane that one can lean on when one needs to?

A woman who is an English teacher has temporarily lost her voice. Someone suggested that she use her braille notetaker (which has text-to-speech output as well as a braille display) as an augmentative communication device, but she rejected this idea. If it works, why not? What's wrong with using a computer to speak for you when using your own voice is painful and inefficient for communication? Is she afraid of being perceived in the same negative ways as other people who can't use their own voices for communication?

One positive experience was the segment of the meeting in which the chapter's secretary reported on a recent volunteer experience with the local Arc chapter's thrift store. She was pleasantly surprised at being treated with dignity and respect by sighted volunteers.

I challenge every person reading this entry to go and try to understand some of the needs and alternative techniques of people with a disability you don't have.

Saturday, April 12, 2008

Language immersion school to save the Ojibwe language

This is a piece from Minnesota Public Radio about a kindergarten through third grade school on the Leech Lake Reservation here in Minnesota that's trying to preserve the Ojibwe language. There is a partial transcript on the web page, some photographs of the school and its students, and a stream of the audio piece.

As a person who has some ancestors whose language is linguistically related to Ojibwe (Algonquin), I think this is wonderful. There is a part of me that wants *some* working knowledge of all of my ancestral languages, but this is problematic because at the moment I can only speak English and German, so I'd have to learn Norwegian, Swedish, Polish, Welsh, and Algonquin, Algonquin being the most problematic because it faces the same risk of linguistic extinction as its cousin Ojibwe, and because I as a mostly-white person am aware of the many implications of an outsider being perceived as intruding upon an already marginalized cultural group. I wouldn't know where to begin looking or how to approach the subject without being awkward or rude.

Saturday, April 5, 2008

Geek Tourism: Dreamhaven and Uncle Hugo's

I'd like to launch a sporadic feature for this blog called Geek Tourism, pointing out geeky destinations for those who find themselves in the Minneapolis/St. Paul metro area. I would have written this entry earlier this week, but I'm getting over a nasty bout of gastroenteritis and wasn't really feeling like writing much in the past couple of days.

Today I'm going to feature two independent bookstores in Minneapolis, Dreamhaven and Uncle Hugo's.

Dreamhaven is a store in the Uptown neighborhood in Minneapolis, easily recognized by the garish shade of lavender that it's painted. They sell used and new science fiction, fantasy, horror, comics, videos, audiorecordings, action-figure-type toys, and a few oddball items that are difficult to categorize, like books about conspiracy theories, photographing rabbits, and the history of sideshow freaks (it's not a "Coast to Coast A.M." type of store, don't worry!) It's also a sort of shrine to local-ish author Neil Gaiman, who keeps his awards on display there. Dreamhaven also supports and sells local/independent comics and chapbooks, including a new volume of short stories they recently published by Peter S. Beagle. It's the sort of store in which it's easy to discover tons of things you never knew existed, but cannot possibly imagine not reading or viewing now that you know about them! Accessibility note: the front/street entrance has steps, but I think the back entrance (which is where the loading dock and parking lot are) has a ramp.

While you're in the neighborhood, I suggest paying a visit to two other local businesses, Falafel King (a restaurant serving Mediterranean and Middle Eastern goodies like souvlaki, gyros, and of course, falafel) and Bill's Imported Foods. I'm a foreign-junk-food aficionado, so it's a great place to replenish my supply of "I'm not sure what this is, but it has a picture of a strawberry on it" tea biscuits. Unlike more upscale/yuppie imported food stores like World Market (don't get me wrong, I love going there, too, it's just so @$%#ing expensive), Bill's has a "this is what we got, take it or leave it" feeling to it. The store is clean, and the merchandise is organized by category, but if you're not interested in deciphering labels or doing outside research, you probably won't know what a lot of the stuff is. Bills caters more to people from The Old Country looking for familiar things from home, and adventurous bargain hunters, than to people expecting the consistency and convenience of big box chain groceries. Bill's also sells stuff from countries that are less marketable here in the Midwest. Most grocery stores here that sell imported stuff focus on Western Europe, China, Japan, and Mexico. Bill's has stuff from Eastern Europe, the Middle East, and more obscure Asian and South American countries. They also sell baked goodies from Falafel King. So, if you're looking for Serbian Jaffa Cakes, cardamom-flavored Sri Lankan tea, or 15 different brands (not exaggerating!) of Petit Beurre tea biscuits, Bill's is worth a stop.

Falafel King (since their website is inaccessible and rather inexplicably doesn't give the store location or phone number):
701 W Lake St
Minneapolis, MN 55408-3085
Phone: (612) 824-7887

Last stop is nearby in the Midtown neighborhood, Uncle Hugo's , and its sister (brother?) store Uncle Edgar's. Uncle Hugo's focuses most on used science fiction, fantasy, and horror books, with shelves crammed nearly floor-to-ceiling and some books in cardboard totes on the floor (I don't advise trying to get a wheelchair through this store, it's bad enough with low vision and a cane). They do have sections of new books, genre magazines, and collectible card game booster packs up front. Suggested reading lists for various sub-genres are helpfully tacked up on the ends of the bookcases.