Saturday, May 24, 2008

Life as a Non-Driver

Anne Corwin, over at Existence is Wonderful, recently wrote a blog entry about her experiences in trying to learn to drive a car and being a non-driver in an autonomous-transportation-centric society.

I've never driven a real automobile. My driving experience is limited to a few go-karts and bumper cars at amusement parks as a teenager. A few people reading this are probably saying to themselves, "well, duh, you're blind, of course you don't drive." It's not that simple--I didn't become legally blind until I was 19 years old, well after the age when most American teenagers have at least some experience driving, if not a full driver's license. I don't think there's a single overwhelming reason why I've never driven, it's a combination of many factors. I don't think I would necessarily pursue driving if I had normal vision--and I'm not entirely convinced that I've ever had normal vision, due to congenital cataracts and autistic sensory processing differences, so I doubt that I would see normally even if my eyes were fixed. I don't want to get into the ethical and neurological can of worms that is Giving Sight to The Blind, as that's a complex issue that deserves its own entry or even series of entries.

I could get smug about the environmental consequences of personal automobiles, but the reality is that I do still make use of them when I take a taxi or get a ride from someone rather than walking or using public transit. True, I use these far less than someone who owns a vehicle (or who has the monetary resources to use taxis frequently), but I do use them, for utility purposes (groceries, dentist appointments), for mid-range purposes (like visiting relatives or going to political activism groups) and for frivolous/recreation purposes (going to a movie or non-essential shopping trips).

What this does make me do is consider things, and plan for things, more than the average car-owning adult. I try to make shopping lists because if I forget something chances are it'll be a few days (or even a whole week) before I can get to a far-away store again. I combine multiple errands into a single trip, which, while it is probably more fuel and time-efficient, is frequently taxing on my sensory processing and coping abilities. I am fortunate in that I have a close friend who is willing to drag my ass around town on boring errands a couple of times a week, and is also willing to help me navigate the obnoxious environments presented by most American retail establishments. I have been mock-threatening for the past couple of year to write the Grocery Store Hater's Manifesto, and I may yet do so.

Being a non-driver and non-car-owner has economic advantages and disadvantages. The most obvious advantages are not having to pay (directly, anyway) for fuel, for the vehicle itself, for maintenance/repairs, for insurance, and even for nickel-and-dime stuff like car washes or toll roads (my state, incidentally, does not have toll roads, and I was rather confused when I first encountered them on a marching band trip as a teenager). There are disadvantages, however. As I've said previously, I can't just go to grocery store as soon as I run out of something. There's a precarious balance between buying enough to last between grocery trips and not buying so much that it spoils and goes to waste--not so easy when one is the only human member of one's household. Food that has been processed in such a way as to make it last longer before spoiling is usually not as healthful as fresher, less processed foods. The true costs of various types of foods gets murky when one considers long-term health consequences of low-quality foods, as well as less immediately tangible things like the energy and environmental costs of agriculture, food transport, and food processing (I've been reading The Omnivore's Dilemma, in case you can't tell).

Bus transport, while not as expensive as operating a personal vehicle, is still not as cheap as non-bus-riders think it is. Actually, very little of regular bus travel matches up with the average non-bus-rider's impression of it. Buses operate on fixed routes and fixed schedules, and these routes and schedules often don't match up very well with each other. This results in long, roundabout routes and lots of waiting exposed to the elements (and frequently smokers who ignore the clearly posted rules forbidding smoking in bus shelters). In the metropolitan area in which I live, the local public transit authority issues transfer tickets that are good for 2 1/2 hours. A cursory glance might lead a person to the conclusion that if a particular trip is 30 minutes each way, and a person's errand at the destination lasts about 45 minutes, that would leave plenty of time to only have to pay that one fare for the round trip. If the schedule doesn't work out that way, you're out of luck. Also, on some routes, you pay the fare when you get on the bus, some when you get off, which changes how long a particular trip can last without going over the transfer time limit. Bus fares themselves are much more expensive than one might imagine, and add up quickly, even if one uses a pass or discounted stored value card. If I had to take a bus to work, I'd have to make at least $1 more per hour just to be able to afford to go to work. Relying on public transit (or carpooling) can also limit one's employment options to areas that are reachable in a reasonable amount of time (or at all) and at the times one needs to go to work or come home. And if the bus drivers go on strike (as they did here a couple of years ago) you could lose your job, too. The other details of bus travel probably deserve their own entry as well.

Saturday, May 10, 2008

Haven't I read this on the Modern Mechanix blog?

Seriously, when are we going to get over the idea of personal jetpacks and flying cars?

I'd be much happier with plans for a better public transportation infrastructure and services.

Saturday, May 3, 2008

Coultonic Convergence

What's better than a JoCo concert?

A JoCo concert on May 1 (note to those who are not familiar with the song: it contains several instances of the word "fuck," if you are offended by this, don't play the video):

This was better than December's show, although it would have been even better if they'd had seating for everyone. I hope they can get a bigger venue next time.

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.

Monday, March 24, 2008

(Re)Learning to Read

When I started school, in the late-mid 1980s (I now have music from Hedwig and the Angry Inch stuck in my head, *sigh*), the prevailing notion was that a child's ability to read would be irreparably damaged if parents tried to teach their children literacy skills outside the classroom, except as explicitly instructed by the teacher. If this hadn't been the case, I might have been the stereotypical Little Professor who learned to read at age 3 or 4, but, as it was, I didn't have any difficulty (other than trying to remember how to draw a letter S) with the way I was taught to read in school, so things turned out ok for me. This isn't to say I didn't have school trauma in my early education. I clearly remember freaking out when my kindergarten teacher changed our seating arrangement, and also being upset because the name of the current month seemed to change just as soon as I was able to remember and recite it. My mother remembers me coming home from my first day of first grade in tears because they hadn't started teaching us to read on that day. I breezed through the lessons, maxed out the extra credit options, tested at the highest possible percentile on all the standardized tests. My teachers weren't quite sure what to do with me (and a handful of other "gifted" kids) so I got pulled out of class a few times a week to write my own stories in the library. I even got to put one of my little story booklets on a featured shelf in the library (I wrote a story about my pet budgie, Polly). I was terribly proud. From that early age, I identified myself as a Reader, and my family, friends, and teachers did too. I befriended and pestered a series of elementary school librarians (I had the odd distinction of attending three different elementary schools because of a local Baby Boom Echo in the late 70s and early 80s that resulted in the contruction of several new schools and a shuffle of students while the district was reorganized) and collected masses of printouts from the electronic card catalog on various topics. I started reading a few "grown up" level books in third grade, but my teacher didn't believe me. Cliche that it is, I think most of my friends were books when I was a kid. I wasn't totally socially isolated, I had friends, but I've always been a nerd.

Fast forward to the last couple years of high school, when I started losing my sight. I was in denial for a couple of years (my parents still are) but as I slowly came to the realization that I couldn't read for more than a few minutes at a time, I was frightened and angry. How could I be me if I couldn't read? I got access to books on tape from the local library and later from NLS, and I've grown quite fond of reading-by-listening (despite auditory processing difficulties), but it just isn't the same. I can (for the most part) read large print books, but the books that get large type reprints aren't always the kinds of books I want to read.

The obvious first thing that most people think of when they think of a blind person wanting to read is braille. However, learning to read an entirely new alphabet, in a touch-based medium rather than a visual medium, as an adult, is significantly more difficult than starting out with braille (or both print AND braille) as a child. Braille, as you may not be aware, consists of more than simple substitutions of dots for letters and numbers. Because it takes up so much more space than even large print, because of the size of the characters and the thickness of the dots, literary braille by necessity must use over a hundred contractions. These contractions consist of abbreviations, special symbols, and combinations of letters and symbols. It's also optimized for transcribing the Christian Bible and other Christian materials, which makes it somewhat clunky for other materials. The special symbols and contractions are typically taught in chunks of a few contractions followed by practice material using those contractions, so the practice stories are of necessity fairly contrived, syntactically awkward, and BORING. I remember the basal readers in elementary school being similarly weird and boring, but I wish I could recall the enthusiasm that got me through them then.

I hope I can finish the dratted class by the end of the year. Or by June if I'm really motivated.

Wednesday, March 19, 2008

Lashing Out

It's happened to just about everyone who has been in a store or restaurant--an employee does something foolish or nonsensical, and the customer gets angry and lashes out at the employee. Maybe you've been the customer, maybe you've been the employee, or maybe you've just been a bystander, observing this happen. It's not a good situation for anyone involved.

It can get particularly ugly when the parties involved see each other as being One of Those People, and blame their behavior on that category of Other.

A simple perception of being in a different socioeconomic class can be enough to tip the scales, or a difference in gender, race, age group, etc.

Take this example--it may have happened over a year and a half ago, but it still sticks in my mind. I am "over it" emotionally--I mostly just laugh at it, but it remains in my memory as an example of this behavior:

I work at a gas station convenience store and manage the foodservice department (things like coffee, fountain drinks, hot dogs, sandwiches, etc.). Part of my job is making sure that machines have product in them to dispense to customers. Unfortunately, judging how much is left in a particular machine can be difficult. Some machines monitor how much has been dispensed, others have clear (or at least translucent) hoppers that allow one to see how much is left in the machine, but many have multi-layered containers for products to insulate them or protect them from light, evaporation, and pests, so the only way to tell when they're empty is to try dispensing the product. If I test something and it's ok, that doesn't necessarily mean that the next press of the button will also dispense the product.

I have difficulty recognizing all of the regular customers at the store, partly due to visual impairment, partly due to prosopagnosia, and partly due to the sheer volume of customers (I work at one of the busiest stores in the company). However, there are a few people whom I recognize because they're there at nearly the same time of day every day of the week, have a particular consistent quirk or physical characteristic, etc. One of these people is an unpleasant fellow I call "Spider Guy" in my head. He frequently wears a sparkly golden spider pin on the lapel of his suit, has distinctively bushy, scraggly long hair, and impossibly skinny legs (he sometimes wears tights/leggings rather than suit trousers). Sometime I have advance warning of when he's approaching the store, because he curses at the gas pump-authorizing cashiers over the intercom.

On this particular day, he wanted a chocolate flavored Steamer. Steamers are a latte-like product we used to sell at the hot drinks counter along with drip coffee and instant cappuccino. First, Spider Guy was angry because he couldn't locate the machine. He yelled at me because it wasn't in the spot where it "has always been," despite the fact that the machine had never been in that imaginary location because it wouldn't fit there and there isn't a water or electrical hookup there, either. I knew better than to point that out to him, and simply showed him where the machine was (and had been for the past year and a half, at least). Unfortunately, the machine was out of the chocolate flavor concentrate. Instead of informing me of this and asking me to replace it (which I could have done in a matter of minutes), he tore into me and called me a "four dollar an hour retard."

Now, really. What is that sort of behavior supposed to accomplish? What does a person gain by starting out with insults? And, more insidiously, why is "retard" an insult? I think that's what upset me most--hearing the word "retard" used as an insult.

Tuesday, March 18, 2008

Breaking Out and Starting Over

I think I've scrapped my entry for this Blog Carnival at least a dozen times by now. I can't seem to stay on just one topic (or, more accurately a narrow aspect of one topic), but that tends to be how my mind works in general (except in the case of hyperfocal and perseverative states).

So, instead of trying to focus on just one of the meanings that "Breaking Out" can have for me, I'll briefly list as many as I can. I may post entries exploring these topics in more depth in the future.

  • Breaking Out means embracing stereotypes by reinterpreting them.
  • Breaking Out means showing that people can fit into more than one category, and in more than one way.
  • Breaking Out means that people can grow and change over time--and that they have a right to do so.
  • Breaking Out means challenging assumptions.
  • Breaking Out means acknowledging sexual and gender identity, and variations thereof.
  • Breaking Out means discussing the unspoken.
  • Breaking Out means freeing ourselves from barriers created by our own thoughts and the thoughts of others.

Monday, March 17, 2008

Placeholder/Intro Post

The purpose of this blog is to explore different aspects of my identity, how they apply to me personally, how the same kinds of identities affect other people, and how one's identity is perceived shapes how people perceive other aspects of that person.

This is a personal Thinking Blog. It's not my aim to present myself as any more intellectual than I actually am, but simply to present the intellectual aspect of my indentity, and the intellectual aspects of other aspects of my identity.

I am a 26-year-old person with a female body, but I identify as "genderqueer" for several reasons, which I shall try to explore and explain in further entries. I do not see myself as exclusively male, female, or neuter, but as bits and pieces of all three, and inconsistently at that. I do not consider myself to be merely a tomboy or butch, although I respect the right of other people to identify themselves as such.

I am also a person who is on the autism spectrum. I am not open to sharing diagnostic particulars, and will not do so on this blog, but I will explore how being autistic affects my identity. I choose to label myself simply "autistic" rather than a specific diagnostic or functioning label because the criteria for those labels are inconsistent and arbitrary. People are not unchanging absolutes, and they should not have to conform to a notion of a particular type of neurological functioning from birth to death simply to satisfy the labeling needs of an outside entity.

I am also a blind person. I have some functional vision but I generally prefer to see myself as a blind person with some sight rather than as a sighted person with impaired vision. I believe in using the most effective tools and techniques for *me* rather than committing myself to completely nonvisual techniques or trying to do everything visually.

I like to create things, either in my mind or in physical space. In the past few years I have not had the resources (time, money, space, energy) to create as much as I would like to, but I am working on changing that.

I like to absorb information and ideas, through reading, listening, and observing, to think about those things, and to express my thoughts about those things. I have not been doing as much expressing as I would like to, and that is part of why I have started this blog, to share how I think about the world with others.