Monday, January 30, 2006

Which department in Student Health Services would you expect sees a lot of deaf and hard of hearing students? I would guess ENT, and I suspect most of you would agree with me.

So why is it that:
-The ENT receptionist doesn't know the basics of communicating with a deaf/HOH person? She doesn't always look at you when talking, so she's hard to lip read, and she doesn't get your attention visually or by touch before speaking to you.

-The ENT department doesn't have a TTY number?

-The receptionist doesn't understand what to do when she gets a TTY relay call?

-The receptionist doesn't understand why I don't want the doctor to call my cellphone, even after I explain that I'm temporarily deaf due to a bilateral ear infection?

-The ENT specialists are the only ones in Health Services without published email addresses?

I mean, come on, people. And, BTW, ideally there would be a way for those of us without TTYs (because of cost, or because we don't have a landline, or because we're only temporarily deafened) to communicate with these folks. Lots of institutions now offer IM as an alternative - usually AOL instant messenger, but occasionally some geekier stuff like Jabber/GTalk, too. I mean, FFS, we're probably 30% EECS majors here. Do you really think it would be that hard to get it set up? Fuckberries, no.
I thought this was a great quote that really summarizes one of my major frustrations with accessible transport. The article is called, Riding Lessons. From disability issue webzine "Ragged Edge":
CTA whines and complains about the soaring cost of paratransit while doing nothing to make their only alternative, the mainline system, accessible. At the same time Metra proves that if they'd build a truly accessible system, our people would willingly ride it, at least for the non-snowy months of the year. If they'd build it, we would come.
Paratransit, for those of you who are blissfully unaware, is public transportation's weasel-way out of making the subway, train, and busses completely accessible. You call at least 24 hours in advance, pay about triple what a trip on the T costs (not much, and it'd be worth it if the system ran smoothly, but it doesn't), and get scheduled for a ride that will invariably be at least 30 minutes late unless you are a bit late getting to the pickup point, in which case they'll call you a no-show. Three strikes and you're out of the paratransit system. And that's if they even show up - I've been ditched before, with not so much as a courtesy call.

The problem is that paratransit is inherently flawed. It's used by a minority of the population, so problems get swept under the rug; it's consistently late for a variety of inexcusable reasons I won't go into at the moment (and that's if they even show up); the drivers are not as well trained as they should be (they know how to use their equipment, but their sensitivity is often lacking); and they don't even have the courtesy to contact you when they *know* your ride will be late or a no-show. Even if things ran smoothly, it'd be imperfect; I can bring *one* companion with me, so there goes a trip out to the city with my friends (scheduling issues aside - paratransit is so inconsistently slow, it's insane). You have to book 24 hours in advance, so there goes any hope of spontaneity. And it keeps disabled away from the majority population, which causes problems of it's own ... the "diversity benefits the majority" argument has been made enough times that I won't repeat it here.

It's all the problems of "separate but equal", and it would actually cost less money in the long run to do it right in the first place rather than paying for paratransit. Didn't we deal with this in "Brown v. Board of Education"?

I don't agree with everything Ragged Edge publishes - most notably, I'm pro-physician assisted suicide (similar to euthanasia) in certain cases, and that's an issue on which I disagree with many disability advocates - but it's a great publication. Google for it and take a look.

Thursday, January 26, 2006

There's an article in New Scientist that really needs to be publicized :-P

In other news, Saturday looks like it will be fun. The LSC (Lecture Series Committee at MIT) is hosting its 28th Annual SciFi Marathon. The schedule is as follows:
7:00pm - E.T. The Extra Terrestrial
9:20pm - pizza ordering
9:45pm - Serenity
11:45pm - pizza arrives
12:00am - Red Dwarf episode
12:40am - 12 Monkeys
3:00am - Red Dwarf episode
3:50am - The Empire Strikes Back

Awesomeness.

Wednesday, January 25, 2006

A company called 3Dmsg is working on creating avatars that can be lip read - and that you can do a cutaway with (think cross sectional view). Their primary market at the moment seems to be teaching languages to both non-deaf and deaf, but there's speculation that this could be used in cellphones to assist lip readers. The argument is that it's simple enough that you can generate the avatar on your own phone (no news on whether this includes processing at the company's central servers, with some sort of markup being sent to you - I suspect it does, which is fine), meaning (a) the person you're talking to doesn't have to have a video phone or hold their cell in an odd position, (b) you can customize the avatar to make it suit your needs and preferences perfectly, (c) doesn't take as much bandwidth.

I want my avatar to be modeled after this guy. Especially if he can pop up now and then with clips from the movie - maybe "Pay attention, Bond!" when I check my voicemail?

Sweet. With Starkey's Eli coming on the market, news that similar technology could be integrated into hearing aids in the next year or two (read: not too long before mine will need replacing), and now this news of a lip readable avatar in development, cell phone accessibility for the deaf and HOH is looking better and better.
From the BBC:
Scientists found a woman's level of fear and anxiety about surgery was likely to be raised if their birth partner was anxious too.
...
The researchers say birth partners should be prepared for the possibility of a caesarean at antenatal classes, and briefed about the procedure in advance if it is decided to go ahead.
...
Women who had the most negative expectations before the operation experienced the highest levels of post-operative pain.
...
"It is not unreasonable for the birth partner to have some feelings of anxiety and fear about the operation they are about to witness."

No, really? I never would've guessed that mothers react to pain, surgery, and nebulous and mysterious medical treatment in exactly the same way as everyone else has been known to for years. I never would've guessed that anxiety plays a role in fear - I thought pain management experts just emphasized comforting the patient for fun! Nor would I ever have guessed that anxiety in one person could inspire anxiety in another. Bah. Whose money was wasted on this study?

Friday, January 20, 2006

On a scale of "faked moon landing" to "electric universe", I rate this 'theory' a solid "roswell alien autopsy".
--MustardMan


I think this speaks for itself, no? :-P

Wednesday, January 18, 2006

Conversation condensed to its essence for maximum humor:

"I haven't hanged my pants in the closet yet. Wait. Crap. Did I just say hanged? We need a completely regular form of English."

"Forget that - too complicated. All we need is 'yes' and 'no'."

"What should we call it?"

"Oh, and 'fuck you!'."

"Oh, you mean Bostonian."

"Hey, yeah. But that means we need two more tokens - 'damn Yankees' and 'now wheh did ah pahk mah cah?'".

Saturday, January 14, 2006

On Thursday, I went to see the documentary "Rolling". It was being presented by the Women's Studies department in collaboration with a group called Women in Film and Video New England as part of a series called, "Chicks Make Flicks". Most of the films are more obviously feminist in nature; I suppose this one was chosen because the filmmaker is a woman, and because it's a disabled issues film, so it fits in with the theme of social justice.

I'd really been looking forward to it. Having just seen "Murderball" a few weeks ago, I was eager to see another film that would expose the general public to disabled issues - in this case, specifically the issues of life in a wheelchair. Unfortunately, I was seriously disappointed. "Rolling" is, in my opinion, a step backwards for awareness.

The premise is relatively simple: three wheelchair users were each given a camera for 18 months, and told to "film their lives". At the end of 18 months, they had come up with somewhere around 200 hours of footage, which was then edited into this documentary. They also voiced-over parts of the film.

The first problem begins with the selection of the subjects. One of the subjects, Galen, had a pretty typical story - he became a C5 quad after a diving accident in his late teens. No problems there. The other two subjects, Viki and Ernie, had MS and ALS, respectively. Their health was in very serious condition, as you might expect, and as such, I do not believe this was a representative sample of the disabled community.

Granted, my disability is much less serious than Viki's and Ernie's. However, at least in the case of Viki, I wonder if perhaps some of this is a generational difference. Regardless, I have experienced many of the moments portrayed in the film. I've dealt with my wheelchair breaking and leaving me stranded; with accessible public transportation that is consistently late or unavailable; with pain that won't respond to Valium, morphine, vicodin, or anything else (thank goodness that only lasted a few weeks; with being locked out of a building, or in an empty room, and being unable to call for help due to a dead cellular spot; with medical facilities that don't have basic adaptations (like, ffs, an orthopaedic rehab clinic should have buttons on the doors); with having to use a bedpan or a diaper rather than the toilet for a long period of time; with insurance that classifies basic necessities (a wheelchair, hearing aids, ankle braces) as "luxuries" and so covers only part of those costs, if at all; and so on. And I have friends in the disabled community who run the whole spectrum. Thus, I feel I am qualified to say that these were not, IMHO, representative subjects.

Second was the tone. While there were "happy moments" in the film, they seemed to be portrayed as brief spots of light in a bleak life. There was very little shown, I felt, of a balanced life: interaction with others was largely limited to family and to healthcare professionals (who tended to play the role of yet another obstacle for Galen, Viki, and Ernie). Galen had the most positive depiction here, I think, as it was shown that he had a fulltime job, and was married (and married after his accident, thank you very much - I was glad to see that much, although I would've liked that to be pointed out a bit more forcefully).

Finally, the medical issues that these people had were a huge part of the documentary. While it's true that medical care is a big part of being disabled, I believe that the choice of subjects and the editing that was done blew it way out of proportion. One moment in particular that upset me was in the context of Galen's issues with shoulder pain (not uncommon in people who use manual wheelchairs). The issue was, I thought, depicted well - until he discussed his options. As he stated, his options were essentially shoulder surgery or an electric wheelchair, "either of which would make me lose the independence I've had all these years". I feel that the presentation of this footage cast a negative stigma on electric wheelchairs, and in particular, on the independence of those of us who use them. While I understand where he's coming from, as far as convenience (hell of a lot easier to transport a manual chair), physical condition (manual makes it easier to keep in shape), and body image (yes, the wheelchair is an extension of one's body, and manuals tend to be seen as a sign of independence and strength), I don't know that the general public is going to (a) understand all the context and (b) think about all this in the short time that the issue is presented.

I think "Rolling" pathologizes disability, and it is (to me at least) a great example of the problem with the medical model (as opposed to the social model) of disability as well as the "hero crip" image. The fact that the filmmaker is an MD probably has something to do with it - doctors have historically had a lot invested in pathologizing disability, and they can be (not all are) quite condescending, controlling, and just plain dense (sorry, Mingee. But this is one of the traps that you can fall into). I asked about this during the Q&A afterwards with the filmmaker, and got a relatively empty answer, the most interesting part of which was her statement that she was critical of "Murderball". While I agree that it depicts a relatively narrow part of disability, I believe it was much more honest about doing so. Also, I think the positive attitudes depicted in the film are something we desperately need society to pick up on, as opposed to the fatalism in "Rolling". "Rolling" is specifically correct but generally false; "Murderball" is specifically false but generally correct.

Some of the statements in reviews I read really ticked me off, too. As in one that called Viki "brave" for leaving the camera on "as darkness fell" when she was stranded just outside her house in a broken wheelchair. How is leaving the camera on brave? How is it brave to simply deal with what you're given? It's not like there's a choice in all of this. And how is it brave to have an emotional breakdown on camera? Not that it was unjustified; that situation does suck big time. But "bravery"? Nah. Reminds me of when I've been in the hospital after surgery, and been told by visitors that I'm "an inspiration" or "being brave" - no! I simply had no choice but to have the surgery, and I'm reacting just like you would expect anyone to. Once the surgery is over, and you're on strong painkillers, what's the big deal (this is pre-rehab, of course - rehab post-surgery can require a lot of work, which could, I guess, be approached in a "brave" way).

"Rolling" seems to have a lot of praise. I haven't seen any specific praise of it by disabled groups, nor have I seen any condemnation of it. I wonder if the general praise of it reflects an overreaction on my part, or a reaction of the kind that the disabled community doesn't need: one of pity, of "oh, how inspiring". We're already objects of pity and "inspiration", and we should be trying to fight against that notion, even as we point out the ways in which society could be changed to make life easier for the disabled. I don't have a lot of objectivity here; it's very close to home, and the way I am perceived as a disabled person is very high stakes for me. I also have to worry about whether I'm understanding things better because I can put them in context, as opposed to underestimating the able-bodied audience. But I don't think this film is a good thing for the disabled community, and the fact that the filmmaker won a MacArthur grant (and the documentary won so many awards) surprises me.

Wednesday, January 11, 2006

A January-term lecture sponsored by the Civil & Environmental Engineering Department: Seawalls: Are they Sons of Beaches or Not? Let it never be said that we don't have a good sense of humor.

Saturday, January 07, 2006

So, I encrypt my email, use FIPS-181 compliant passwords everywhere, and have a PIN that isn't my birthday or anyone else's, and I'm paranoid. Ok, I can accept that such behavior could be considered paranoid, from a certain point of view. Perhaps I'm not actually more aware of security threats than most people. You're welcome to the opinion that I'm overly paranoid.

But then to assume that some random idiot from school calling me and not identifying himself is automatically a stalker? Psh. Look who's talking.

Thursday, January 05, 2006

A List Apart and Project7 come to the rescue yet again.

But if you're one of those people whose use of IE forces web devs to support a browser with broken support for basic web standards, shame on you! There are plenty of good alternatives (yes, Konqueror is now available for Windows) out there that support all the big ones - Windows and any Unix-y systems (Mac OS X, Linux, BSD).

Windows-only options include K-Meleon. And if you're not using Windows, there's even more browsers: Safari for OS X, and Galeon and Epiphany for OS X and Linux.

Most of those browsers support CSS2 or CSS2.1; Dillo (as an example of a pretty good web browser) doesn't, but at least it's honest about it, rather than implementing it in a broken way and claiming support. Thus, if you're using Dillo, you're not going to blame the nuts-and-bolts look on the web designer, but instead accept that it's the look you wanted - much like if you wanted to use Links, Elinks, or Lynx. After all, you're making that trade-off for speed and size. Now, granted, in the options above, the only rendering engines listed (other than Amaya's and Dillo's) are Gecko and KHTML (well, and Safari's WebCore, which is very similar to KHTML) - but they are far more standards-compliant than IE's Trident.

A relatively brief document called The Decommoditization of Protocols explains part of why standards are so important. The AnyBrowser Campaign might also be interesting - keep in mind that while it's lobbying for web designers to write code that works in all browsers, writing such code would be much easier if browsers complied with standards.

Here's another reason to get rid of IE: then you get to stop hearing me rant about it.

Wednesday, January 04, 2006

You Know You've Read Too Much "Star Wars Expanded Universe" Fiction When #65,536:

You're watching a story on CNN about rescued miners being treated for carbon monoxide exposure in a hyperbaric chamber, and your first association is Darth Vader's hyperbaric chamber in Shadows of the Empire.

And if your second association is Michael Crichton's Sphere (the book, not the movie), but you can't remember what the integral of an arctan is, you might have a problem ...