OOK!

2008-09-23T04:28:00.002-04:00

In an interview on Friday, Representative Rangel was asked why the Democratic Party is so afraid of Sarah Palin. Wheelchair Dancer has a good post, as well as a link to video of the interview. "You got to be kind to the disabled," Rangel said. Later, he apologized: "Governor Palin is an obviously healthy person who in no way fits the description of disabled. I meant to say then, and I am saying now, that she entered the campaign with a disadvantage in the area of foreign policy."

I've been watching since then, looking for coverage in the media, and all the usual suspects online. No one seems to have noticed this. Sure, it's been posted all over the place - it is part of the election cycle, after all - but the reactions have been limited to a few different types.

The right has responded by declaring that this is just another left-wing smear against a fine vice presidential candidate - that it's just more misogyny. Some of them are also making the connection to Trig Palin, Sarah Palin's 4 month old son with Down Syndrome. "We should be sensitive to her or any woman who has a child or family member who has any affliction at all," according to Peter King, co-chair of the McCain-Palin campaign in New York. (Why family members? Why are disabled people always "disabled children", and not adults worthy of being considered outside of their relationships with others?)

The left, on the other hand, has mostly tried to dismiss it as a harmless gaffe - an overly inflammatory choice of words, perhaps, but no big deal. In a few cases, it's been taken further, with comments along the lines of, "Hey, yeah, poor choice of words, probably not politically wise. Oops. But, hey, she is mentally disabled. Hee hee!"

What nobody outside of disabled bloggers seems to be paying any attention to is that this is more than just another ad hominem attack. Rangel's use of "disabled" clearly implies a view of disability as unhealthy; inherently disadvantaging (see Wheelchair Dancer's post for a good analysis of this); and of disabled people as incapable of holding public office and in need of patronization, condescension, and other forms of "kind[ness]". You got to be kind to the disabled! It is this kind of attitude that continues to marginalize disabled people; it is this kind of attitude that prevents us from being accepted as full and equal participants, not just in the political process, but in society as a whole. It is kindness, and not acceptance, that continues to drive such failures of our society as a lack of physical access to buildings that our abled friends take for granted. It is kindness, and not acceptance, that makes the occasional retrofit of those buildings "a favor", rather than "too little too late". It is kindness, and not acceptance, that keeps us separate (but equal, I'm sure ...). Rangel owes an apology not to our parents - but to us.

2008-07-19T22:49:00.002-04:00

Major progress in the push for an accessible campus! As of Wednesday:
- Access-related retrofit projects will have timelines attached, whether they're in response to a student request or just part of general improvements. They'll be somewhat flexible, but will provide a good way to track whether things are being done in a reasonable amount of time, or postponed and forgotten.

- Contractors will be held responsible for compliance. This is most relevant with respect to door parameters (size and weight and so forth). Projects will not be considered fully delivered until all doors have been checked for compliance by the contractor, and a written record will be kept of these checks.

This is *big* news. In more minor news, the two large (post-ADA) buildings that seem to have systemic compliance problems will be surveyed and brought into compliance. The general sentiment is that it's been long enough since they were completed that the vendors involved can't be billed for this, so this is being treated as a sort of cleanup, with the expectation that the second bullet point above will keep it from being necessary in the future. Wahoo!

2008-07-14T02:44:00.003-04:00

Installing rmagick on OS X can be a major pain if you installed ImageMagick with fink. The solution is relatively simple, but I found a lot of different 'solutions' via google, none of which worked for me (including installing from source!), so take it with a grain of salt. You need to install the imagemagick-dev package; specifically, imagemagick10-dev, since imagemagick1-dev is compiled with HDRI support, which is incompatible with rmagick.

Similarly, on Ubuntu, you need the dev packages installed - both for Ruby and for ImageMagick. Off the top of my head, I believe these are ruby1.8-dev and libmagick9-dev, at the time of this post. Presumably this or something similar would work on Debian as well.

2008-07-06T14:25:00.001-04:00

I went in for another round of implant testing and adjusting about a week ago. That means it's time for another episode of Pointless Rambling for Posterity!

We eliminated the tapering added to the high and low channels by the audiologist in Boston. When she added that tapering, she said it was pretty standard, and the audiologist in Chicago didn't seem to think it was that odd, so perhaps this is a progressively deaf vs. late deaf vs. born deaf thing; perhaps it's something else. In any event, my audiogram is now presumably flatter, though we didn't test it. I have already - two days later at the time of this writing - noticed a difference, though (and moreso a week later, as I edit this before posting).

The biggest difference I've noticed is in music, not speech. That's not to say that it hasn't made a difference, or won't make a difference, in my speech perception. (Edit: a week later, speech and environmental noises do sound more natural than before - less "bad radio".) But while speech perception is the primary benefit of an implant, subtle differences are more apparent in music and environmentals, simply because the signal is more complex and isn't quite as predictable. Most notably, a lot of what I've described in the past as "frequency squishing" - where the frequency range of a song seems compressed, making everything slightly out of tune and closer to a central pitch - is reduced.

The other interesting thing is that I think I'm now better able to verbalize my thoughts on implant/hearing aid integration. A number of people have asked me recently if I am interested in going bilateral. I do think bilateral is something that will become quite common in the future, and I am interested - but that time is not yet here for me. My aided ear is significantly worse, both objectively and subjectively, than my implanted side (can't really call it my ear, can we?), and having input on my left is still useful - for one thing, it makes sound feel more balanced and more natural. A CI on that side would probably improve things further. But at the same time, the sound I get from the two is quite different. Listening with just my CI is a bit like listening to your stereo with the subwoofer off. Or with just the subwoofer; the point is that it sounds a lot flatter. Now, that's not incredibly new - for a while, I could listen to music with the implant, but a lot of it just wouldn't parse unless I had my hearing aid on as well. What's new is that the hearing aid no longer sounds better in every instance than the implant; they complement each other nicely. The best example of this is the sound of a snare (or any drum with that post-attack sound). Initially, there's the hit, which has a bit of a tone to it, and is short. After that is the 'snare' part - the rattly bit. That's the bit my hearing aid doesn't (always) get, but the implant does. Conversely, my implant may miss the bass hit if it's subtle, but my hearing aid will not.

So for now, I'll continue to use a hearing aid on my unimplanted side. That also has the advantage of allowing for more improvements in implant tech while I wait. I suspect the impetus for finally going bilateral will be my left ear getting worse, and possibly - depending on the results of the myringoplasty investigation mentioned earlier - also my willingness to deal with infections in that ear (10 months infection-free in my implanted ear, and counting!), but there's no knowing when that will happen. And, of course, my health insurance may be in flux over the next few years as I switch from parental coverage to some combination of employee, grad student, and non-group (possibly CHIP?) coverage. But that's a whole different ball of wax, and probably better left alone for the moment.

2008-06-24T11:14:00.003-04:00

Recently learned: the warm moist environment created by wearing an ear mold all day isn't really a concern (outside of an external ear infection, which is normally limited to itching) unless you have a hole in your ear drum. If the ossicles behind that ear drum are reasonably intact, then ossicular reconstruction is unnecessary, and you can get a simple ~~myringotomy~~ (edit: myringoplasty. The exact opposite of a myringotomy) under a local anesthetic. If you've got an implant on the other side, then the ossicles become even less important, because you're mostly using that ear for localization and for the feeling of acoustic balance.

This bears further investigation.

2008-06-10T08:43:00.003-04:00

Javascript is generally regarded as a really weak language. Objects and classes in particular are unnecessarily verbose, and there doesn't seem to be a good REPL (there are some REPLs, but they're all lousy. Could be a problem with my terminal settings, I suppose, but I don't think so). As it turns out, though, Javascript has - as is so often the case - some really unexpected features. It has, for instance, first class functions; a function's return type can be another function (allowing currying), and you can pass a function as an argument. This is a pleasant surprise.

Should also make it easier to reimplement this all in Python in a sensible way, when the time comes. Might also be fun to do a web-based implementation in CLisp, even if that's outside the requested specs ... of course, if I want to start writing real-world code in Lisp, I probably should look the part. I already use too many parentheticals; it's just time to represent them all using actual parentheses.

2008-06-09T06:47:00.002-04:00

"Hi. Oh, right. I can't actually hear you now; I'm not plugged in." [gesture to ear]

I often leave my hearing aids (for lack of a better, all-encompassing word) off when I leave my room at night. My glasses go on - I can barely see in the dark without them - but I don't need to hear to find food or the bathroom. I wonder what the experience is like for a hearing person, running into this situation for the first time? Last night, I ran into a new housemate, and went through the usual dance. Too foggy to lip read; took me a second, too, to figure out that something needed to be said. I feel, though, like I may have left her confused about something.

Not that this bothers me, really. It just seems to come up every now and then. Is there an explanation that might leave people less confused? On the other hand, I also don't want to launch into a lengthy one-sided conversation about why I'm not currently hearable, as my roommate puts it.

2008-05-25T17:16:00.003-04:00

Wheelchair Dancer has written some great stuff about what fitness means for the disabled body. Too bad (okay, not really) I already turned in my 'alternative PE' writeup!

It seems [my trainer has] been getting questions about his work with me. What are his goals? How is he measuring progress? Why haven't I made progress? What are the deliverables? What is he doing, in what order, and why? Where is his plan? ARG, who has disability experience, knew exactly what to say. Disability is different. You don't train a disabled person like me with standard fitness goals. I am making progress. His goals were never to have me up and running marathons. Nor was he attempting to have me lose 10 lbs or so. You can't measure stability and injury prevention in the same way as you can raw strength. They can't assess my progress without asking me, because I know best how my body has changed and I alone have to live in it. He essentially shrugged their concerns off.

...

None of this is visible to the outside world, because to them, I have been doing the same exercises for the past 6-7 months with no discernible sign of improvement.

I could quote the whole thing, but ... nah. Go read it.

2008-05-25T03:41:00.003-04:00

Went to a Ruby on Rails workshop yesterday. All of the following was said or written during the workshop:

"So, it turns out it's really easy to get people to bitch."
"Wait, I can trade caffeine for sex?"
"There's two ways to get hired. You could tell them you're comfortable with the language, which they like. Or you could tell them you don't know the language, but can pick it up quickly. Unfortunately, HR droids ... wait, is Christine around? Okay ... HR people don't like that. They have this unreasonable thing about experience."
"You all know who Guy L Steele is, right? He created Scheme, he did a lot in the early days of Java ... he's probably the most intelligent programmer on the planet. But if he went to a bunch of interviews and said, 'I want to play with Ruby, please hire me', eighty or ninety percent of those companies would turn him down flat. And they'd be idiots for it."
"I'd be up for going out and drinking. I don't really know the area, though. They feed me here, so I've lost a lot of survival skills."

2008-05-22T02:20:00.006-04:00

Boston is one of those cities where you really don't need a car at all. It's convenient to have one at times, yes, but public transportation can get you just about anywhere without the hassles of parking, insurance, traffic, and breakdowns. And for all the problems the MBTA has with accessibility, it is at least possible to use large parts of the system in a wheelchair, assuming you're willing to deal with delays and the occasional backtracking. (Not to minimize the problems the T has; just that it's not completely inaccessible like - Chicago's El.)

The buses in particular are pretty good - the drivers tend to be pissy about dealing with wheelchair users, but they generally don't drive off when they see me. I think a lot of the problems could be dealt with through better training - simple things like, "ask the customers sitting in the wheelchair spot to move while you're extending the ramp" and "don't insist that all the able-bodied people get on before the ramp goes out if that means the bus will be full - for all you know, s/he could have been there first". It'd also be nice if they knew how to strap down a chair without staring with confuzzlement at their equipment for several minutes. But at least I can generally get where I'm going, even if I have to wait a bit.

Today's experience, though, was humiliating. Like most accessible buses, the main door has a ramp. It could be faster, but it's a decent setup, and it has the advantage of being easily deployable even when the motor breaks down. Problem is, when a bus comes into the station, sometimes the platform is on the left, and the left side doesn't have an integrated ramp. The MBTA solves this problem by using what is essentially a two-piece suitcase ramp. The ramp is kept in a locked closet near the platform; when the bus pulls up, you make contact with the driver, they pull out their big Ring 'o Keys, deploy the ramp, and lock the ramp back up once you're on board. In theory, anyway.

Today, my driver had lost her key to the closet. I'm not sure how that happened - when would you ever remove a key from your work keychain? - but it didn't stop there. She spent several minutes looking through her keys before she figured out that this had happened. Once she did, she called for an inspector, and we waited. The guy came faster than inspectors usually do - a perk of being at a major station, I suppose - but it took the two of them much longer to put the ramp together than it should have. Seriously - the pegs go in the holes, the beveled edge goes at the bottom, and the lips go on opposite sites. Yeesh. I know you don't want the people I'm traveling with to help - liability, plus it makes you look incompetent - but if you're gonna take that long to figure out the obvious, they're gonna want to jump in. Plus, engineers.

I don't know how long it took to get on the bus. Probably not more than ten or fifteen minutes. But that was about the most embarrassing ten or fifteen minutes I've ever experienced. By the time things started moving, it was obvious to the other passengers that something was wrong. And with a group of seven people - two T employees, one wheelchair user - hovering around the open door to the bus, it wasn't hard to figure out what the holdup was. By the time I got aboard, it felt as if every eye on that bus was on me. Me and my chair. Me and my ramp. Me and my 'special needs'. The ride to our destination was no less awkward. (Although I did have the amusing bonus of witnessing a friend who rarely swears mutter: "fuckers".)

It's entirely possible that everyone on the bus understood that this was not my fault, but a failure on the part of the MBTA. Unfortunately, that's probably wishful thinking. Eighteen months ago, The Stranger - a generally progressive, pro-civil-rights publication from ~~San Francisco~~ Seattle - published an article called Should the Handicapped Be Banned From Expess Busses?, asking:

Is it fair for one or two handicapped individuals’ right to public accommodation to trump the right of dozens or hundreds of others to have reliable transit service that gets them to work on time? Is it fair for two people in wheelchairs to make everyone else on the “express” bus late?

Note that the author assumes the fault is that of "two people in wheelchairs" and their "right to public accommodation", and not the training and equipment issues that her story describes. From the comments, we have such gems as "no need to drag everyone else down as well", and "the ADA doesn't relieve disabled folks of the burden of being considerate of how accommodating their needs may impact others".

You know why so many able-bodied people don't like the ADA? Why our people are seen as second-class citizens, costing extra money and inconveniencing "Real People"? It's not our actions. It's the failure of the MBTA to train their employees properly. It's the failure of university facilities departments to plan ahead rather than constantly retrofitting. It's the failure of restaurants to use a table layout that is actually navigable by someone whose footprint is more than a foot wide.

My people are not at fault here; yours are.

2008-05-01T00:42:00.008-04:00

Just in time for Blogging Against Disablism Day, I had an interesting conversation about accessibility on campus. I was approached randomly by a woman who told me that we'd met during my freshman year here, and that she was one of the operations people in Stata. After some small talk, she asked me how access had been recently. I didn't particularly want to get into the discussion then, so I was honest but brief - the ground floor was fine, but my occasional trips to other floors suggested that there might be problems.

We were in the basement, just around the corner from a door that now has a power operator, thanks to several months of noisemaking on my part a year or two ago. Debi thanked me for my work on that project, and told me that she and her office had been asking Facilities to look at that door "for a while", but it wasn't until I had gotten involved that anyone had bothered responding to them. Similarly, their complaints about the near-continuous malfunctions of power operators and the overly heavy doors on above-ground floors had been ignored until I started prodding people. I can't claim credit for that yet - nothing has changed - but there is at least awareness, and hopefully progress will be made soon.

Initially, my reaction to this conversation was quite upbeat. Someone outside of Disability Services had noticed my crusade, and supported it! The timing was excellent: I had just recently begun yet another push for compliance, and while I had been assured that the necessary changes would be made, I was (and am) not holding my breath, so positive reinforcement was a good thing.

But something occurred to me. A consistent theme was beginning to appear: I contact Facilities with a specific problem that indicates a problem with the way capital projects are planned (note that all the violations in question occurred in post-1990 buildings). Facilities responds somewhat defensively, assuring me that this is the first they've heard of the problem, and if they'd known it was an issue before, of course they would have taken care of it without my prompting. Time passes; after much prodding and reminding, the specific issue in question is rectified, but the larger issues of procedure and planning remain as they always have been.

And now I'm told that some of the issues I've been raising have been raised before. It is possible that Debi's people and I have been talking to different parts of Facilities, but that seems unlikely, since all ADA and accessibility related projects are supposed to go through one person. Yet I keep hearing the refrain: "this is the first I've heard of it." "We don't ignore access concerns - the law is the law, and we take it very seriously." "You're the only one who mentions these things." "I'm not aware of problems unless you bring them to me." It's hard see an alternative to the conclusion that some of the Facilities people I've been working with are not just inefficient, but insincere and disingenuous.

As a side note, I got an email yesterday saying that the problems I've been having with some newly installed power operators are because they forgot to factor in seasonal pressure changes caused by heating vs. air conditioning. Way to go, guys.)

A friend compared it to a differential equation (Yay engineers! Also, 2nd order diffeqs can describe door closing behavior ... hmm ...): "At first, they ignore you. You poke them about it, they respond nicely but half-assed. You remind them some more. They do nothing. You keep talking. They get pissed off. For a time they ignore you. Then, at some critical point, they can't any more." It's an interesting idea, and I think there's a very good chance it applies here. I'd guess we're in the "nicely but half-assed" stage, moving towards the pissed-off stage. I've been hesitant to push things to that stage of annoyance, fearing repercussions or even a loss of political capital (as if I had any to begin with!) but I wonder if maybe that hesitancy is itself a problem - if only continuous pressure will result in the needed change, and perhaps only continuous pressure to the point of genuine irritation.

Something needs to change; at this point, I'm not sure if I just need to stay on message, trust that I'm talking to the right people about the right things, and wait for people to come around, or if I need to escalate to another set of authority figures - perhaps the ombudspeople. (Ombuds. Hehe!) Perhaps staying on campus this summer will let me keep the conversation going even over the summer - and if I'm really lucky (and persistent), maybe we'll actually see some real changes. Either way, in writing this, I came across an excerpt from a letter written by Martin Luther King Jr. that seems to hit the critical point: that the goal is "to create such a crisis and foster such a tension that a community which has constantly refused to negotiate is forced to confront the issue ... to so dramatize the issue that it can no longer be ignored."

And what the heck, one more for the road:

2008-04-28T13:20:00.004-04:00

If I'm in a lecture on linguistics acquisition, and you say, "Do you know what 'sibbing' is?" while pointedly playing with confetti, it's going to take me a while to get it. It's not that I don't get it eventually, or that the context isn't clear; it's that I've been trained over years of experience to react to that sort of situation by wondering what I missed, and searching - consciously - through a list of possibilities that are already in my lexicon - did you say sibling? Fibbing? Sipping? Sitting? Flipping? Fitting? Flitting? Holy crap, even now I'm confused. Especially if I'm not looking at you, and thus there's a delay while I figure out whether you're talking to me, or the person just behind me. If you're gonna pull a surprise-ish demonstration like that, don't pull it on the deaf guy when he's busy watching the interpreter.

And for the love of god, if you're talking about minimal-pair phonemes, *don't* say "TA" and "DA". Specify the difference explicitly: the first is voiceless and the second is voiced. I may be a native speaker of English, but I still can't differentiate those in isolation. Not in an environment with background noise. And from some of the reactions I saw in class, I think the hearing students felt the same.

2008-04-16T13:23:00.002-04:00

If you do an experiment that supports your theory, and ignore all of the obvious contradictions between your theory and basic human experience, that's not science. Why is it that psychologists don't understand that?

2008-04-10T11:32:00.003-04:00

I'm writing Ruby (holy crap, Rails is awesome). I'm going to be spending a significant amount of time over each of the next three days voice-off. And it's 66 degrees and sunny. Does it get any better than this?

Well, okay, yes. In about 5 minutes when I go find breakfast.

2008-04-01T20:16:00.001-04:00

I've really enjoyed some of the songs MikeSZZ has interpreted on YouTube, but this is really disappointing.

2008-04-01T02:17:00.002-04:00

A local Deaf group is hosting a presentation and discussion with researchers who are studying (have developed?) methods of 'curing' deafness using stem cells. I don't have too many specifics right now, but I imagine it falls into the category of cochlear hair regeneration.

These researchers want to get a better sense of what the Deaf community thinks of their work. Assuming the discussion manages to avoid the predictable anti-CI extremism (warning: that site is extremely ableist), it should be quite interesting.

My own thoughts, though, turn to what exactly is being offered. I don't know what the clinical results might be, but for the sake of argument, let's say completely normal hearing. Probably with a training period like a cochlear implant, but with potential capabilities far beyond an implant. Would I be interested in that? I'm really not sure. There are logistical issues - cost, probably surgery, etc - and since my deafness is at least partially conductive, this treatment might not be appropriate for me anyway, but let's leave those issues aside for a moment. The hearing I have right now suits my needs very well; speech sounds natural through my implant and music is good though my hearing aid (and getting better through the implant). Assuming phenomenal results, my speech perception might improve somewhat, especially in noise. My music perception might also improve. I'd almost certainly have better localization capabilities, and I wouldn't be dependent on all of this equipment - no more charging batteries, no more replacing wax filters, no more biannual reprogramming. All of these things would be nice.

And yet, I'm not sure I could make that choice. For years, I've had the ability to pipe an audio signal into my ear - and now into my head - in a way that hearing people can't. Ever since I was five, I've been able to go silent when I sleep, or even in the afternoon or evening when I just need to disengage the world. I've been able to pipe a signal directly from most telephones into my ear, without any noise from the outside world whatsoever. I've been able to decrease the intensity of the sound that I perceive at a moment's notice. And because of my hearing loss, I've developed a number of communication skills and strategies - not just lip reading, but also contextualization, closure, patience - that have served me well in ways that have little or nothing to do with my inability to comprehend speech perfectly.

The information is not all in. It will be interesting to see what the promise of this research is and whether the researchers see it as replacing cochlear implants and hearing aids in the long-term. Obviously I'm not opposed to this sort of thing in principle - after all, I chose to get a CI less than a year ago! But for now at least, I'm happy with the middle path.

2008-03-31T07:15:00.004-04:00

I've been lucky, pain-wise. The worst pains I've experienced have not been chronic; the pains that could reasonably be called chronic are not really that bad. And yet, reading what Elizabeth has written about variations in pain scales from person to person resonates with me. When I'm asked to rate pain, what do I rate it relative to? The worst I've ever felt, in which case I'll (hopefully) never again describe anything as being above a 5 or 6? Or on a continuum where 1 is nothing and 10 is "about as bad as I've felt recently"? And since my experiences with pain - both first and second hand - have probably been more extreme than most people, do I need to worry that if I rate something as X, when another might rate it as X+2 or X+3, I won't get adequate short or long-term treatment?

The Wong-Baker pain scale is a popular one, and defines each number in terms like "hurts a little bit", "a little bit more", "even more", up to "hurts worst". And they call this objective? Bull. Other scales define their points in terms of functioning - here, you're a bit distracted. There, you can't focus at all. Over there, you're writhing in pain, unable to even communicate coherently. This, too, is problematic; people's tolerances for pain are incredibly variable, in part based on their past experiences with pain, in part based on the kind of pain (for me, at least, a given amount of inner-ear pain is far more debilitating than the same amount of hip pain), and in part based on the phase of the bloody moon. While in some sick way, it makes sense to treat pain with a goal of allowing people to be functional, that just doesn't cut it. Someone with a high tolerance for pain may be - or seem to be - perfectly functional while they're in a great deal of pain. That pain may still need to be treated!

It's perfectly understandable that the medical community wants a way to record pain, to classify and track it. Unfortunately, pain is not a symptom that lends itself to objective verification, and attempts to approximate that need to be sensitive to the wide range of needs and experiences a patient may be coming in with. Anything else, however well-intentioned, runs the risk of alienating the populations that are most at risk - and failing to adequately treat their pain.

2008-03-29T02:00:00.007-04:00

I make a point of replacing my hearing aid battery just before I travel; it's a pain to be at the airport or in a car and realize all of a sudden that you can't hear well anymore. It's one of the nice things, oddly enough, about the 12-hour lifetime of a CI battery - much easier to remember to change the battery regularly when it's something you have to do every morning. Anyway - you'd think that this habit of changing batteries before I travel would be a good reminder to put a spare package in my backpack. Unfortunately, it's not.

All of this ran through my head yesterday when my hearing aid went beep-beep-dead. It wasn't a disaster; I wasn't in a particularly social or noisy setting, and I was able to get to the store and buy batteries before I was in such a setting. But it did mean that I spent a few hours using just my implant, and I realized something: it sounded almost normal.

I know what you're thinking: how could you not notice that? How does that come as a surprise? But it was! Just a few weeks after my implant was activated, it faded into the background. It was a big help, certainly, and it was very obvious that I was wearing it when I became overloaded or wore it too long; but as long as I wore a hearing aid on the other (I'm sorry, contralateral) side, I really didn't notice the unnaturalness of it all that much. And yesterday, the CI by itself ... sounded fantastic. Like I was speaking to a human being, and not through a radio or inside a metal box. Very exciting! This is indeed the holy grail, to the point that I can definitely see going bilateral someday when my left ear joins my right ear in the big audiobooth in the sky. (Or possibly sooner, but the time and effort involved just isn't worth it right now, and probably - hopefully - won't be anytime soon.)

I do have one tweak I'd like to make. Things don't feel loud enough, although I can't turn the volume up without feeling the pain that comes from too much current. It also feels a bit flat (texture, not pitch) - though flat isn't the quite the word to use. I'm not really sure how to verbalize it, but I suspect it's a quality that most people with hearing aids will recognize. I suspect, based on 16 years of experience with my own aids, that I don't actually need more volume overall, just a bit of a boost in the low frequencies. This is one of those occasions it'd be convenient to be able to program my own equipment; it's not a big enough change or improvement that I'm willing to make an appointment (and deal with transportation, the wait, the co-pay, etc) with my audiologist. And I'm not totally sure that's it, so it'd be nice to try bumping the lows for a few days, then adjust other things if that doesn't turn out to be the case. But it's not a big problem, so I'm content to wait until my next scheduled reprogramming in a few months.

Edit: In the interests of honesty, I should point out that later that night, while I was feeling all excited about this, and had both my hearing aid and my CI on, I misheard "real GDP" as "real shitty pizza".

2008-03-16T16:20:00.001-04:00

3 Things Hard of Hearing People Like. Oh, so true! And one more: new earmolds. Mmm.

2008-03-12T06:54:00.002-04:00

The BBC is reporting that some folks are planning to build a "pyramid cemetery" in Germany - people's bodies will be cremated, and the ashes will be used in the blocks that make up the pyramid. That's actually kind of a nifty idea, although it would be more low-impact if you used them for construction. (Which I think would be cool, but I suppose maybe not everyone thinks that way. You'd probably have a hard time finding a market for the bricks.)

All that said, though, the BBC article contains a particularly unfortunate quote: "It will grow for thousands of years. I would like to be one of the first people to be buried there." Uh ... sure, buddy. You go right ahead there.

2008-03-09T05:14:00.003-04:00

[LJ]Current mood: stressed[/LJ]

In the last few years, I've had some pretty significant breakdowns with my scooter. American Airlines ripped the tire in half; my batteries reached end-of-life significantly before they were supposed to; the charger stopped working. Each of these incidents involved missing class, using a rental chair that didn't fit well (and in one case, caused shoulder pain that lasted for several months afterwards), and paying a shitload of money to have a certified guy come out and fix the damn thing.

Fast forward to this fall. Around November-ish, my scooter stopped holding a charge. This wasn't a huge surprise; a battery can only go through so many charge cycles before that happened. In retrospect, it would be wise to replace the batteries every year, before trouble happens, but it wasn't a big deal. I ordered the batteries and installed them at home. Expensive, and not covered by insurance, but it was a simple problem with a simple solution.

Unfortunately, about two weeks ago, the scooter started stalling out. It seems to happen more often (though not exclusively) when I'm on rough terrain; given the lousy state of the sidewalks in Boston, that's a pretty big problem! When the repair guy came out, he said it looked like the connections on the battery had shaken loose - like I hadn't tightened the nuts enough when I replaced the old battery. He tightened them up, and all was well.

Until last Thursday (or Wednesday?), when the problem happened again, making me a very unhappy camper. I switched over to the backup scooter I decided to buy when the afore-mentioned issues happened in the fall, and then, last night ... the right rear wheel broke off the axle. Rolling over a damn roll of toilet paper. And not 'broke off' as in 'screw it back on', either. 'Broke off' as in, 'the plastic bits that hold the wheel on the axle cracked in half'. So now I have two broken scooters, one that needs a (probably expensive) spare part that my repair guy may or may not have in stock, and one that is not yet diagnosed. And no functional scooter. (Note: I can drive around the first scooter I mentioned, but it stalls out unpredictably, and will refuse to start up for about an hour - so I can't drive outside, which means I have to take it to campus, leave it there, and find some other form of transportation between campus and home.)

I'm incredibly frustrated at this point. When do I stop throwing money into this black hole and just buy a replacement? Why don't wheelchair manufacturers understand that their users drive outside? Why don't they over-engineer their vehicles, like cars manufacturers have to? Why do they only last 4-5 years? Why is there only one person in my area who is a certified Amigo repair person? Why is it so damn expensive to have him do repairs? Where will I find the time to deal with this, and academics, and getting over a virus, and everything else I need to do? Fuck.

2008-02-20T08:03:00.003-05:00

Microfiber charging + CI/HA = no more dead batteries, no more recharging, and less disposing of nasty heavy metals? How cool would that be?

Sadly, given that you can't get a USB recharger for CI batteries yet, I'm inclined to think that LJ:Hearing Aid Hacks' sentiment is correct: "We're frustrated that we're behind the technology curve and pay huge dollars/pounds/euros for good hearing aids that are unaware of and incompatible with anything resembling recent advances in consumer audio tech. ... We're willing to blaze our own path because no one will do it for us until they realize there is money in them thar hills." It'll be a while, and every Tom, Dick, and Harry will have one of these for his iPod and cellphone before it hits our community.

2008-01-19T00:46:00.000-05:00

"Oh, I'm sorry. I thought you grew up Deaf. If I'd known you started signing just a few years ago, I would've moved my mouth more." [Editor's note: it makes more sense in the original ASL.]

Passing has it's pros and cons, but there are times when it is truly a thrill to pass.

2008-01-09T00:15:00.000-05:00

The Ramp Project is coming along nicely. All of the footing-holes have been dug (Okay, fine, there's one left. But it's underneath the existing deck, so I don't think roots will be a problem!), and the weather should be good for concrete pouring on Thursday. And curing on Friday. By Saturday, it will be ready for work on the structure - the posts, the timber between each pair of posts, and the spans connecting the pairs to each other.

That leaves us with two weekends, and possibly the two weeks as well. In that time, the only really critical tasks are the planking upon which one can roll or walk, and the edge curb that keeps one from rolling or walking off the ramp. Code demands that we also install guard and hand rails - if we're really lucky, we can fit that into the last weekend, since it shouldn't take long. If not, then the ramp will still be complete enough for me to move in, and the finishing touches can either be put on during Work Weekend in February, or postponed until a better time - spring break or summer.

Wahoo!

2007-12-20T02:24:00.000-05:00

I should be asleep right now, but I'm a bit wired, so I decided to set up a script to automatically check if grades have been posted.

In principle, this isn't too hard - set up a cronjob to call a script. In the script, download the grade page with wget, and parse the file so the output is a bit simpler. We can then output it in whatever way - write it to a file, zephyr it, send an email (ooh - email to SMS! Instant grade notification!) The catch is that the grade site doesn't do authentication by password, in which case we could use pycurl, or HTTP Auth, which wget supports natively. Instead, it does authentication by private certificate.

Open up Firefox, in which we'll assume your certificates are already installed (you could do this with another browser, and the steps would only be slightly different). You're going to export a PKCS12 certificate; do this by going to your preferences, then advanced. Click 'view certificate', choose your MIT cert, and back it up. Then,convert it to the proper format.

Once you've followed the linked instructions, you should have mitcert.pem, mycert.pem, and mykey.pem. The wget command to download the grade page is

wget --private-key=mykey.pem --certificate=mycert.pem --ca-certificate mitca.pem https://student.mit.edu/cgi-bin/shrwsgrd.sh

. This is not quite what we want, though, for two reasons. One, it will save the results as shrwsgrd.sh; two, it promps for the password we assigned to mykey.pem before. The first problem is easily solvable; we want to pipe the output to grep, so it needs to go to stdout, which wget will do if we add -O - to the end. The second problem is a bit trickier. Go back and recreate mykey.pem, but this time, add the -nodes flag. NOTE! mykey.pem is a private key, so this is a Very Bad Idea. I'm sure there's a better way to do it - ssh-agent, perhaps? - but if you do decide to do it this way, keep the key somewhere secure, on your own machine, and delete it as soon as grades come in. I'm not responsible for any consequences of your key falling into the wrong hands (and if you do know the Right Way to do this, please leave a comment).

So now, we have our data. We want to parse it somehow to get just the grades for this semester. Happily, we have sed and grep at our disposal (I think it could all be done with sed, but that's a bit more hardcore), so we get just the grades (for all semesters) by doing:


grep -e [0-9A-Z][\.] -e '[ABCDFIPT+-]</TD' | sed 's:<[/A-Za-z]*>::' | sed 's:<[A-Za-z\ =]*>::' | sed 's:\s*::' | grep -v -e 8.012 -e GEN.APCR -e '[\s<]' | sed '/.[0-9A-Z]$/ {
N
s:\(\.[0-9A-Z]*\)\n*\([A-Z]\):\1 \2:
}'

By way of explanation: the first grep matches any line with either a course number, or one of the letters available in a grade, followed by a close-cell tag. The next bit removes the close tag; following that is the bit that removes the open tag (No, I'm not entirely clear on why I couldn't combine them. Simpler to have two calls to sed than to debug). Then we remove whitespace; I took out 8.012 and GEN.APCR because they didn't fit the scheme so well, but that's specific to my transcript (didn't fit b/c GEN.APCR doesn't have a normal grade; I didn't want "S" in there as a grade just for that one line. And 8.012 was messy because I dropped it; the "DR" code caused some problems). In that same grep, we removed lines that had whitespace and tags. The last call to sed looks for a course number; if the following line is a grade (has a letter in it), then it consolidates the two lines.

So now our output is in a format such that each course has a line; a line starts with the course number, and ends with either a grade (separated from the number by a space) or nothing. We only want to notify the user if there's a change from the last time we checked. So let's store it in a file called grades: cat >new-grades. We'll then do diff old-grades new-grades; this is our result, which we'll carry on to the next section. We also want to copy old-grades into new grades when everything else is done.

If the grades haven't changed, then diff old-grades new-grades will return an empty string. Let's say, though, that we have something to report. In that case, we'll grep for lines containing >, and filter out the > and whitespace using sed: grep \> | sed 's:> ::'. And this is what we want to report to the user.

I want to get an SMS, so I'll have this code send an email to [number]@vtext.com: mail -e [number]@vtext.com. Note that the -e flag is important; it tells mail not to send anything if the message is empty. So if diff old-grades new-grades is empty ... nothing is sent.

Almost done! Deep breath, then we can put all this together with pipes. First, the wget is piped to the parser, which cats into new-grades. Then, we diff new-grades and old-grades, parse the result, and send our email. Then, we move new-grades to old-grades.

wget --private-key=mykey.pem --certificate=mycert.pem --ca-certificate mitca.pem https://student.mit.edu/cgi-bin/shrwsgrd.sh -O -| grep -e [0-9A-Z][\.] -e '[ABCDFIPT+-]</TD' | sed 's:<[/A-Za-z]*>::' | sed 's:<[A-Za-z\ =]*>::' | sed 's:\s*::' | grep -v -e 8.012 -e GEN.APCR -e '[\s<]' | sed '/.[0-9A-Z]$/ {
N
s:\(\.[0-9A-Z]*\)\n*\([A-Z]\):\1 \2:
}' | cat > new-grades && diff old-grades new-grades | grep \> | sed 's:> ::' | mail -e [number]@vtext.com && mv new-grades old-grades

Plop it all into a cronjob (left as an exercise for the reader), touch old-grades, and you're all set.

2007-12-14T21:45:00.000-05:00

Cygnet posted recently about the idea that people can be divided into Digital Natives and Digital Immigrants. The obvious analogy is to language (and perhaps culture) acquisition; the idea that children are wired to learn, and we lose that knack as we age - not completely, but it's never quite the same.

I think this makes a lot of sense; it's not such a leap from the structures of language to the structures of computing - it's got a vocabulary, a set of metaphors and idioms, a way of conceiving of the world. But I think there's something else that explains the difference - it's attitudinal. "[Digital Natives] prefer games to 'serious' work." I think Prensky would suggest that this is an effect of being a Digital Native; I think it's a cause! The big difference in the way children learn to use technology - certainly the way I did - and the way adults do, is that it's a game for children. Adults who are learning to use a computer are, for the most part, doing it with a purpose in mind. "My boss wants me to make a spreadsheet. I want to send pictures of my kids to their grandparents. I keep losing my todo list."

Kids, on the other hand, are playing a game a lot of the time. Not literally a *game* (although, hey, time on the computer is time on the computer); but they're having fun. My little brother got to middle school already knowing how to do slideshows because he'd wanted to make something flashy. I learned how to use Word because ... actually, I don't recall. But since I did this at the age of 5 before Mom and Dad were out of bed, and I took great pride in "making the words green", I'm guessing the journey counted for more than the destination. Compare, for instance, older geeks - who are Digital Natives, but didn't necessarily grow up with computers - with the Digital Immigrants of their generation.

What's the critical difference? Time pressures might have something to do with it; the more time you spend plugged in, the more comfortable you'll feel there. But I think more important is the freedom that not having a critical goal or deadline gives you - you can screw things up, or try more than one method. And by the time you get to the age where you do have those specific, time-sensitive goals, you're already familiar with how the system works.

And for the record, it's not true that Digital Natives prefer graphics to text. Long live vi!

2007-11-26T18:35:00.000-05:00

I called our local accessible taxi number 45 minutes ahead of my hoped-for trip. The cab came 45 minutes late; I scheduled in buffer time, but not *that* much buffer time. Drove up to the back; waited for the driver to unfold his ramp. No joy - it was missing! He had the part that folds out of the trunk, but the 'last 5 inches' wedge wasn't there, and he didn't know where it was. I'm still not sure how that happens ...

And this is for the 10-week ASL class that illness already forced me to miss 3 sessions of. Current mood: gnyargh.

2007-11-25T21:23:00.000-05:00

For future reference:

mutt can send attachments to a standard unix pipe, which is convenient if you are SSHing into it, and the host machine doesn't support that file type. Sadly, scp can't take input from stdin, but you can acheive the same effect with ssh user@host "cat >output_file_and_path". Sweet.

2007-11-13T12:39:00.000-05:00

I was told last week by a research audiologist that lip reading is far more prevalent in the hearing population than we would expect, to the point that it is questionable whether deaf individuals are really any better at it than hearing individuals. Instead, apparently we're simply more comfortable relying on lip reading. I'm still somewhat skeptical of this - the McGurk Effect notwithstanding, I think I communicate far better with just a visual signal than most hearing people can. Still, I suppose the argument that it's just a different set of communicative strategies can't be immediately dismissed; we see similar phenomena in spoken language, in that two second-language speakers may perform similarly in a classroom environment, yet be perceived (and perceive themselves) as having widely varying abilities in a real world situation.

The theory would go, then, that those of us who are fluent lip readers (if you'll pardon the misuse of the word 'fluent') aren't necessarily picking up more phonemes than anyone else; our apparent superior abilities are simply the result of lots of practice at relying on contextual analysis, pragmatics, and the "Smile and Nod" method (which actually can have the paradoxical effect of reducing isolation in social situations ... though I suppose that's a topic for another time). Speakers for whom lip reading is a secondary channel aren't used to relying on these strategies, and furthermore may feel uncomfortable, realizing that their access to language is very different than it usually is. However, they will prioritize visual stimuli more heavily when auditory stimuli are unreliable (say, in a high-noise environment).

Between my conversation with the audiologist mentioned above, and the Googling I just did, it looks like a lot of this research is being done at the Royal Institute of Technology in Sweden. I haven't found the specific paper(s) I was looking for - the ones that try to find a correlation between lip reading abilities and some more fundamental trait - but there's some interesting stuff out there.

2007-11-07T19:47:00.000-05:00

There's not one, but two, major street improvement projects happening on campus, and on both of the streets that I use to get to class.

The project done by the university has so far not been an issue - pain in the ass, yes, but not a big deal. The one by the city (and I'm not suggesting this is a difference between the university and the city, BTW) recently became nasty: they took away the curb cuts. Some of them, anyway.

These aren't 'real' curb cuts - they're not built into the sidewalk. Instead, they're asphalt ramps that poke out into the street a bit. They're actually nice and smooth, although I'm not sure how old they are, or how well they might age. Thing is, because they stick out in the street, they have to be removed in order to repave the street.

So far, all of this is fine - like the changes on the university's project, a pain in the ass, but not a big deal, because there are enough curb cuts left that it's possible to reroute. However, they're completely unmarked. The first I knew of this change was when I was coming out of the street in the dark - fortunately, I was coming out of the street, not going down into it, or I might have flipped into the street rather than just added another item to the list of things I hit that day. This morning, I made a similar mistake on a different ex-curb-cut (and going down, so I almost did flip). That was partly my own fault, in that I was running on autopilot, but there were a lot of people around cutting down on visibility at the curb cut a bit. And it's not like you expect a major route of travel to just disappear.

I sent an email to the Disabled Student's Office and to the city's project manager, asking that they put up construction markers just like they would for a detour or a hole in the street. The DSO responded immediately (see why I'm a fan?); now we just hae to wait for the city to get back to us. The repaving in question is supposed to happen tomorrow; in theory, the curb cuts should be back by Friday, but who knows how that'll work out in practice. And the city needs to know in the future that this is a hazard to navigation for a lot of its residents - not just the wheelchair users.

2007-11-05T20:41:00.001-05:00

My life is a bit messy right now, what with having gotten sick right around midterms, but two exciting (potential) events are coming up.

One: Ben Bahan is coming to Boston to show a film called "Audism Unveiled", and then do some sort of related lecture and performance. Dude! Ben Bahan! From my book!

Two: I have no idea how I missed this, but Finn just IM'd me to tell me about a movie called "Music Within" about Richard Pimentel. I've seen some criticism of the movie for ignoring the efforts of others to get the ADA passed, but I'll reserve judgment on that until I see it. Historical accuracy aside, it's always good to get the idea out there that this struggle has been going on for years, and that it is a struggle for civil rights.

2007-10-31T01:34:00.000-04:00

I went to the MBTA meeting yesterday on the accessibility report prepared for them by TranSystems. The report has been in the works since 2005, so it quite notable. And the MBTA was smart enough to take advantage of some of the low-hanging fruit and correct a few problems that were 'revealed' (or at least, documented) in the course of the study. The meeting had four parts: the TranSystems presentation on the MBTA's paratransit system; their report on fixed-route systems (i.e., bus, subway, and commuter rail); and a section each on the MBTA's response to their recommendations on paratransit and fixed route systems. Each section was also followed by a questions and comments period, so you can imagine it took a while - well worth the time, though.

Both parts of the report by TranSystems were fascinating. Granted, a lot of this is stuff I knew, either from my own experiences, from talking to other people with disabilities, or by going to the public meetings that lead to this report. But there were nuggets of gold here and there. I learned a lot about the history - for example, the massive improvements I've seen in paratransit (not enough, but still not nearly as bad as it once was) since I arrived in Boston? Well, as it turns out, the MBTA was switching to a whole new system of dispatching, scheduling, and routing. No wonder things were so bad - I arrived during a transition period!

Bob Rizzo's presentation on what the MBTA plans to do to respond to TranSystems' recommendations was also pretty good. A lot of the suggestions - and responses - seemed fairly common sense, but sometimes it takes a formal report to get these issues communicated effectively, or to demonstrate just how serious the issue is. I thought he came off as sincere - as prepared to change the service to make it work better for riders as well as the MBTA.

The presentation on the fixed-ride action plan was a different story. The two individuals presenting committed that cardinal sin of reading from a prepared statement (and one that could've been written - it didnt't show any signs of having been written as a speech). So of course, they read too quickly to really be understood. The interpreter, who had otherwise been fantastic, wasn't able to keep up at all, and not because of any speed issue in transferring between languages - they just had that list-reading rhythm that makes your eyes glaze over. Eventually, after a valiant effort, she and I and the other Deaf individual there had a brief side conversation acknowledging that we all knew what was going on, and that she should just loosely paraphrase what was being said.

This wasn't hard - the two individuals' pattern was essentially:
Person 1: "TranSystems recommends that the MBTA solve problem X by doing Y."
Person 2: "The MBTA is doing Y."

No clues as to whether "Y" was a new program, or one started during the study, or if the MBTA felt that they were already adequately meeting the goals laid out, thank you very much, so the report didn't mean anything. The question section wasn't much better. I raised a question about an issue that had sort of tangentially been mentioned in their 30-point list, but only as a problem on commuter rail - no mention of the main subway lines. Specifically - what's up with the bridge planks? They've been placed at some stations where it's considered to expensive to retrofit to remove the gap, but many employees don't know how to use them, or are unwilling to do so; in some cases, the bridge planks are missing, or placed in out of the way locations (like in an elevator). The same question had previously been raised by another person at the meeting after the TranSystems presentation, when they acknowledged that it had made it into the detailed report, if not into the presentation, and that they'd let the MBTA address the issue. I had hoped that this would mean the individuals presenting later could use their 60 minutes of lead time to come up with something. "So the bridge planks," I said, "which are already a sort of inelegant solution, aren't there. When they are, issues of training prevent them from being used." The only answer I got was: "more bridge planks are coming. More training is coming." No word on when; no word on whether there's a plan in place, or a discussion happening internally, or what stage it's at or who's involved. It doesn't do any good to tell me you have a plan if you won't say what it is!

Rather than end on an angry note, I want to mention one more thing that happened that made me happy. The meeting was scheduled to go on about an hour past the planned time, and various delays meant that it went about 30 minutes past that. The paratransit program tends to be a bit firm about cancelling if you're not going to show up, so I - and probably others there - called the automated line during a break in the meeting and cancelled my ride, figuring I'd have to find another way home. At the end of that break was the MBTA's presentation on their plan to improve paratransit. Bob Rizzo, before he began, noted the scheduling issue, and told us that anyone who had a ride scheduled that afternoon to leave the building didn't need to worry - that he would keep their dispatch apprised of the meeting's ultimate ending time, and that he'd make sure our ride was there when we got out, and indeed they were. For me, that went a long way towards demonstrating that although there are problems with the paratransit program, there are at least real people behind it. People who get it, even if they're at the disadvantage of not actually being users of the program themselves, and who are sincere about making it better.

2007-10-29T10:10:00.000-04:00

Dammit. A scooter that breaks down halfway to campus is worse than useless. Thank goodness for RAs.

Now how come there's only one wheelchair repair place in all of the Boston metro area, and why aren't they answering the phone?

2007-10-28T02:35:00.000-04:00

It's 2:30am here, but I can't sleep. That means it's time to update the ol' blog!

So I've been doing some thinking about how to get around in the winter. Most of the details I won't go into at the moment, but I do want to talk out loud a bit about how to store an electric wheelchair or scooter in a cold climate.

If protecting it from precipitation and groundwater isn't an issue (and at this point, I think that's a solved problem), then the remaining issue is cold. It was suggested to me that this might be solved by installing an engine block heater. That, my googling quickly showed, would not be a good idea - those things look heavy, bulky, and generally not a solution to this problem.

In that same conversation, an electric blanket was suggested. I'm not sure if this suggestion was sarcastic, or if the "in a pinch" qualifier was sincere. As it turns out, though, there actually are electric blanket-like devices designed for exactly this use, called "battery warmers". If I'm lucky, I might even be able to find some sized for motorcycle batteries, and with two wraps connected to a common power source. I suppose I should probably also ask my local Amigo dealer if they think this would do any harm. Luckily (I guess) I need to see them soon to replace my current batteries ...

2007-10-23T00:00:00.001-04:00

Nasal irrigation is one of the grossest-feeling things I've ever done ... but I feel so clear now!

2007-10-17T13:43:00.001-04:00

From my current AI pset: "This player should very efficiently kick your ass: [code]."

2007-10-03T23:11:00.001-04:00

I stumbled across the following while reading about IPA vowels: "We need a conlang to force IPA to distinguish between [rounded and unrounded schwas]. In the meantime, you can use e_x and x_2."

I love IPA.

2007-09-29T00:49:00.000-04:00

I've always been somewhat conscious of phonemes. Not to the same degree, I'm sure, as someone who learned spoken English through speech therapy, but certainly more than hearing people.

I'd been a bit concerned about the phonology aspects of my linguistics class. For all my implant has made incredible improvements in my hearing, and for all my abilities to communicate regardless of whether I can distinguish a [t] from a [k], I still have a lot of trouble distinguishing phonemes in isolation. Particularly vowels. (Although to be fair, some of that is normal - distinguishing a schwa from another vowel is hard for anyone.) And there has been one assignment already that we've had to change, which was fine with the professor.

But today in recitation, it struck me that I have a very solid grasp of how phonemes fit into the bigger picture. Between growing up lip reading, the conversations I've had (professional and just curious) with my audiologists and the two speech therapists I've worked with, and my admittedly limited cued speech, I've been exposed to a lot of these things on an informal level. The McGurk Effect? Wait, you mean hearing people have a name for that? (Grandma Wentworth: Drama? They teach that?) (Seriously, that was the first time I noticed this. The confusion of my hearing classmates when they experienced it for the first time was hilarious.) The idea that people with what seems like the same accent actually have subtle dialectal differences, or that an individual will speak the same word with different phonemes at different times? No problem. Distinguishing method of production, and placement? Also easy - on paper, anyway. In running speech, well, that's a different story.

It actually reminds me quite a bit of my first cued speech class. The deaf/HOH population figured out the lip reading quickly. Those of us who'd acquired English the usual way had a bit of trouble with things like the /s/ /z/ distinction, but the others really didn't. The hearing population, on the other hand, had a hell of a time figuring out "this whole lip reading thing", and that was a major hangup they had to deal with before they could even start paying attention to the cues.

Y'all may be better at it than us in practice. But for exactly that reason, we've got you beat on a theoretical level. ;-)

2007-09-24T12:05:00.000-04:00

This post will start out as your generic "stupid healthcare tricks" story, but there' a happy ending, really. So, my scooter is broken. On the bright side, I should have my parts tomorrow morning, and the repair dude said he'd come out tomorrow afternoon or evening, so I should be back in action in time for class on Wednesday. Today being a random holiday, that leaves only one day of classes I need to get to. (I have one class tonight, but it's in a small building that I'd be taking a taxi to anyway, so it's totally crutchable.)

I figured I'd contact student health and see what they could loan me - they've got to at least have manual chairs for when students break their legs and whatnot, yes? Even if they insist you rent your own from elsewhere, I can't imagine they wouldn't have a few that you could take back to your dorm while you're getting a rental. So I went to Urgent Care and asked. "We don't do wheelchair loans." Gee, how'd I guess you were going to say that? It finally came out that their hangup was that I wasn't injured. I pointed out that I had indeed broken my legs on Friday; it's just that my legs are plastic and motorized, rather than squishy and organic, my crutches notwithstanding.

The receptionist at Urgent Care was not that amused, but she did put me in touch with a patient care advocate. I'd never met this woman before, but I realized later that we'd emailed several times during my freshman year. Anyway, she was immediately willing to hunt down a wheelchair. She was apologetic - the only one they had in the inpatient wing was a large hospital wheelchair. Which was fine with me - I hadn't expected anything really nice or day-to-day ish (seriously, the day hospitals start stocking Quickie ultra-lights, I will be pleasantly shocked). She did some looking around, but I guess their wheelchairs have a tendency to walk off. Still, I'll need someone to push me to class anyway, so a self-propellable chair would be a convenience, not a necessity.

But. Here's the part that really impressed me and made me happy. They're going to treat this like any situation where they need a supply for a procedure that's normally covered by student insurance, but the supplies on hand aren't appropriate. They've contacted a local rental company, and I'll be picking up a pediatric-sized chair later this afternoon. Covered by my student insurance, even. How awesome is that? It remains to be seen how self-propelling I'll be able to be, and I'll still need help getting to campus, if not between classes, but either way it'll be much more comfortable.

(Okay, okay, I'm still fantasizing about a basketball wheelchair, because those things are so incredibly fun to ride. But, within the realm of actual reality, this is about as good as it gets.)

2007-09-23T08:42:00.000-04:00

I'm sort of thinking about maybe getting a new scooter. Depends on whether I can get insurance to partially cover it. Basically, I need a backup for situations like now when mine is kaput. It'd also be nice to have something that's a bit more robust, especially in light snow. My Amigo RT has almost smoothish tires and not much ground clearance, so it wimps out pretty easily in situations where traction is necessary.

I know there are at least a few scooter and powerchair users who read this - what do y'all use? How's the workmanship and build quality? Does it handle okay in light (less than 1 inch/3 cm) snow? (Positive and negative recommendations are both welcome - "use this" may be a very valuable recommendation, but "stay the hell away from that" is useful too).

2007-09-22T13:01:00.000-04:00

It seems like my wheelchair's breakdowns always happen on a Friday afternoon - when it's too late to get the part I need shipped out until Monday. And when the scooter rental companies aren't delivering anymore for the weekend (although, given what they charge ... sweet holy crap. I think I'll just borrow a manual from Student Medical when they open on Monday, and try to find someone to push me.).

If the chair was a bit better designed - or if the workmanship was less haphazard - it might've been possible to take it apart and wire in a jury-rigged charger. More incentive for me to take the Power Lab next semester, I guess. Or maybe I should ask the professor if some of his students this semester would be interested in doing a case study? Hmm ...

On the bright side, no classes Monday, so I can (hopefully) get all of the logistics worked out before class on Tuesday, and the scooter should be fixed by Tuesday night. Wednesday night, if I'm unlucky. I just won't have it for my ASL class (or the nanotech workshop at the Museum of Science, whichever it is), but that's okay - I can still take The Ride and use my crutches once I'm there. I just hope Stephanie gets back to me soon about whether the ASL class is happening or if I need to transfer to a different level.

2007-09-20T00:44:00.000-04:00

I was reading a discussion of abortion on the grounds of disability earlier this week, including the discomfort that many pro-choice people in the disabled community feel re: abortion due to prenatal testing results. In the original post was the following quote, which I thought was worth saving/sharing: "It is impossible to prepare a world for people who are not in it or of it."

It was a nice follow on to Blue/Kay/The Gimp Parade's post earlier this year about the lack of tolerance and acceptance of people with developmental and cognitive disabilities relative to people with physical disabilities, and the effect that institutionalization may have had on that.

2007-09-14T02:44:00.000-04:00

I just sent in a consent form to be in a trial of the AAA PowerPak for my Harmony processor (essentially, the PowerPak replaces the processor's battery with a cable to a AAA battery in your pocket or clipped to your belt - it looks something like this, although that device is for the previous generation processor, and takes AA batteries). Should be interesting. I also sent in my resume - hopefully I can work for Advanced Bionics this summer.

In less positive news, resistors are driving me nuts. Who came up with the idea of coding resistivity as a set of colors that (a) are fairly close to each other, and (b) are in bands so tiny, even a slight color impairment makes them indistinguishable? My TAs' solution is just to plug random resistors into a multimeter until I find the one I want (since our lab kit has all its resistors lumped in one compartment), but that just seems silly. Grr.

2007-09-04T17:54:00.000-04:00

I was looking at some of my implant-related records today while getting them together to bring to a new audiologist (now that I'm back at school) later this week, and I came across some really neat numbers.

During the pre-implant evaluation, we did CNC Word List testing with my left ear, my right ear, and both ears. With my hearing aids, I scored 44%, 16%, and 40%, respectively. No context or lip reading, obviously. Not great scores, but then, that's why I got the implant, right?

Here's the cool bit: we tested my right ear alone (with the implant) 3 weeks after activation. Those 3 weeks of practice, and the 4-5 therapy sessions during that time period, gave me a score of 48% - better than I had done even with my better ear!

Of course, that's not the whole story; I'm having a lot more trouble with background noise than I used to, and integrating my aid and my implant together is tricky. But given time, those problems should resolve, so this is an auspicious beginning.

2007-08-31T07:20:00.000-04:00

I'm staying at coop near campus this week (officially, because the dorms aren't open yet, but my roommate got early return to help with rush, so really because I wanted to hang out with these folks). Some friends are letting me sleep on their floor. I will swear up and down that my laptop was muted when I went to sleep - but it made that big-ass Macintosh BONG when I booted it this morning while they were all still snoozing. Dammit. I feel like such a chowderhead.

For future reference, I found StartupSoundPrefPane; I haven't used it yet, but I'm installing it now.

2007-08-30T12:56:00.000-04:00

You may remember that earlier this year I made a hobby out of hassling the Facilities department for not making new buildings accessible from day one. Well, my first step back on campus, I ran into one of my allies at the Disability Services Office, who told me that they (and their colleagues in the Accessible Technology office) have been twisting Facilities' arm about putting out a guide to campus accessibility. Apparently, I walked in at just the right moment, because someone brought up the idea that they should suggest that Facilities hire a student who actually uses a wheelchair to get around to do the pre-map survey, rather than just dump some random employee in a chair for the day. And since I was standing there ... I hope this pans out!

2007-08-24T06:29:00.001-04:00

It's been two weeks since my CI was activated, and I keep meaning to blog about it, but so far I haven't gotten around to it. Translation: I'm a lazy slacker. For now, suffice it to say that it's going *extremely* well - better than I expected, even - because I have another topic I want to talk about.

Cued speech is a fairly controversial topic in some circles. It's often used as a tool for language acquisition, and while I have met people for whom it seems to have worked very well, I'm willing to accept (and even in some cases agree with) the statement that it is in some ways a throwback to the old-fashioned methods of oralism.

That said, there are adult cuers out there. Some of them are late or progressively deaf people who want a visual method of communication that is 'easier' (in quotes because that's a somewhat subjective statement) than ASL or PSE. Some grew up cueing, but still cue (and yes, among cuers who have both Cued English and ASL as shared languages, you will see cueing used socially, contrary to popular myth). And some people are just playing with another cool toy - I would put myself in that category.

So there is a population out there that is interested in cued speech for reasons that have nothing to do with language acquisition, literacy, or childhood development. It becomes tiring, then, when people post tirades about the Evils of Cued Speech in threads or blogs that are not about those topics, but are instead about the mechanics of CS - information that could be very useful to the population of cuers who freely choose to cue! Particularly frustrating is when a poster acknowledges that CS can be useful in some cases, and only has a problem when CS is used with children, but persists in flooding such a discussion.

In addition, we often see similar discussions where a given method or tool is deemed appropriate for adults but not children. For example, there seems to be a general agreement that SEE is less appropriate as a native language (or lifestyle language) for children when compared with ASL, even if it has its uses in ESL classes. But there's no pileup on those posters who grew up with SEE and say they still prefer it over ASL; after all, it's what they're used to. (A similar analogy might be made with adult vs. child use of cochlear implants - that discussion tends to fall somewhere in between the CS discussion and the SEE discussion in this regard.)

I guess the bottom line for me is: leaving any discussion of childhood education aside, there are people who voluntarily choose to do things that you might not, because it's the right choice for them. That right - to make the choices that work best for oneself - is important, perhaps even sacred, as long as it's not negatively impacting on others.

2007-08-07T00:02:00.000-04:00

I just got news that made my day. Yes, all 57 remaining minutes of it (or is that expression retroactive?)

It comes in two parts, actually. First, a VRS company called SnapVRS has released a phone called the Ojo. The Ojo is unique among VRS-provided phones, as far as I can tell, in that it is entirely self contained and doesn't require a TV for display. It's also quite a bit more portable-looking - and dorm-friendly, heh.

The other nifty bit is that CSD is offering a service I haven't seen before, called English Based Sign + Lip-Reading Option. I have the feeling it's new, but I'm not certain. And while you could always, in theory, ask any VRS interpreter to sign PSE rather than ASL, I've heard stories of interpreters being unwilling to do oral interpreting.

I'd toyed with the idea of applying for a video phone before, but this might just push me over the edge.

2007-08-05T03:57:00.001-04:00

As I approach my activation date - Wednesday - I'm getting really impatient. Will everything sound like croaking Daleks? Just beeps? Normal speech? (Okay, maybe not.)

A few days ago, I felt the implant for the first time. I'd been feeling around near the incision for a while - cleaning out the cruft, and itching my new scar (one for the collection, heh) - but I guess it was obscured by the swelling. It's subtle - just a little raised edge behind my ear, about at the level where my cartilage ends and the squishy part of the lobe begins, and it goes up on a diagonal to a point just a bit above my ear. I think, anyway - touch is a tricky sense. I should try feeling it while looking in a mirror. It basically feels like bone, but the flatness of it and the regularity of the edge are a dead giveaway.

I'm also getting curious as to the hearing aid on my other ear. I've been told that I should leave it in at least long enough to see if I like the balance, and that I can always take it out if it interferes, or if it makes me feel off-balance. I'm curious, though: will I wear it during the activation? Or therapy? It will be interesting to see if it's useful to have a familiar guide while I'm adapting, or if leaving it out will force me to rely more on the implant and speed the process. Questions for the audiologist and the therapist, I suppose.

2007-07-27T01:25:00.000-04:00

My surgery (second try!) was over a week ago - July 18th - so I'd better start recording things if I want a record for posterity! I'm planning on moving this blog elsewhere, but that won't be for a while.

I got a few more details from the anesthesiologist on the morning of the surgery than I'd gotten before. Apparently, the trouble is not so much the shape of my airway - that's a pain to deal with, but it's doable - as it is the way I respond to drugs. Normally, they do what's called "rapid sequence induction", where they shoot some drugs up your IV, and you are completely under in 30-40 seconds. In me, because my head is proportionately larger than the rest of my body, they have to deliver the drugs more slowly to avoid hitting a toxic level. So although I stop breathing on my own fairly quickly, I don't relax enough to be intubated for about 4-5 minutes after they start the IV. That's too long to go without oxygen (I believe - it might be that it's not too long, but doesn't leave any buffer for delay or screwup). So instead, they had me breath pure oxygen for about 10 minutes before starting the drugs, saturating my blood and filling my lungs. They also kept an ENT standing next to me with an emergency trach kit just in case ... but fortunately, that wasn't necessary.

The surgery took 6 hours, which is quite a bit longer than the average of 2-3 hours. I attribute this to several things: difficulty with intubation (that process goes for some time beyond the induction sequence), the added care needed to protect my spine during the surgery, and the time taken to patch the hole in my ear drum (goodbye, old friend ... you won't be missed, except perhaps when flying).

I went home the next day. The recovery has been surprisingly easy - I was off pain meds (if you call Tylenol with codeine a "pain med") 2-3 days after surgery. Since them, I've had vertigo to varying degrees. It's mostly gone now, although I wondered at one point if I was learning what it would be like to be in space. The only symptoms I have left are major tinnitus (which should mostly go away in a few weeks) and deadened taste on the right side of my tongue (which usually self-corrects a few months after the surgery). I have the option of getting a second (left side) implant in a year or two; the surgery was easy enough that I'm definitely not ruling that out. Ah, yes, and a little sore spot at the top of my incision where I was stupid enough to itch the stitches.

So, in the end, I have an Advanced Bionics HiRes 90K Implant in my right ear (image courtesy of Advanced Bionics), which will interface with a Harmony processor starting August 8th when this whole shebang gets turned on. Wahoo!

2007-07-17T16:02:00.001-04:00

My tax dollars go to set up government agencies as Microsoft-only shops. Concerns about the vulnerability and lack of flexibility of a monoculture aside, it leads to situations like this one:

Employer: We're hiring you because you have a lot of Linux experience, and we'd like to get some diverse ideas in the group for this project.

Employee: Cool. I can do that. Can I work from home?

Employer: Sure.

Employee: Uh, my password isn't working. Can you reset it again?

Employer: Ooh, right. Our extranet is IE-only. But that's okay, you have a Windows computer around somewhere, right? Everyone else does!

Employee: That's because you bought them those computers.

Can you see where this is headed? Grr. So much for standards and openness. Glasnost and perestroika.

2007-07-12T10:06:00.000-04:00

Coming home for the summer, I wasn't sure if I'd be able to find an ASL class; when I did find a place to take classes, I was worried it'd be a beginner's class, and not all that useful. The class I started on Tuesday, however, is excellent. It looks like most of the class will be freeform conversation, which is perfect, and we'll be starting to work on interpreting skills - voicing for each other, and so on. In the 11 person class, we have 4-5 professional interpreters, so things are moving pretty quickly! Should be a blast. Even better, there's a beginner's class in the same building at the same time - Dad's taking that as a review, so I have a driving buddy. This is definitely the sort of class that could be repeated in the future, although I don't know how many more summers I'll be coming back to live with the 'rents anyway.

I recently re-read the BMEzine article about magnetic implants. Obviously a very different beast than the cochlear implant I'm - getting installed? hmm - next week, but I think there's some interesting parallels. Body enhancement, a delay between installation and utility ("For the first month I thought this was a failure; my main goal was to be able to sense things and I hadn't sensed anything so far."), 'cochlear moments' versus 'magnetic moments' (" Todays event was rather significant, it was not planned, nor was it forseen.") - yeah, yeah, laugh at the bad pun there. Quinn Norton, in particular, wrote some interesting stuff about human augmentation in general, though I seem to have lost said link.

There's even a bit of a reverse parallel - I'm toying with the idea of 'alternate uses' for my hardware. Will the CI magnet work to open my car door (which has a magnetic sensor)? Can I, uh, "hang stuff" from the magnet in my head? Nothing heavy, but more decorative-ish. I guess I'll get to find out soon!

2007-06-26T01:08:00.000-04:00

I have a date for try #2 at this implant thing: July 18th. We're still working out the details - there's some discussion that the docs might try traching me under sedation, but before I go far enough under that I stop breathing spontaneously. Alternatively, CIs have been implanted a few times before under just a local anesthetic - to be honest, I prefer this idea, in part because I'd spend less time in the hospital. The other part is that I think that being at least semi-conscious for the whole surgery could be a way cooler experience (even if I am mostly out of it either way), but I've been told that this is a somewhat disturbing thought process. As one person lovingly put it: "You're disgusting, you know that?"

Now I'm working on finding someone who can guide me through the auditory rehab, which will last about six months - possibly more, depending on how things go. Although my speech perception should return to it's pre-surgical levels within a month or two, the end goal is obviously better speech perception than before, so this is important. I have a few leads close to campus that I'm following up on (if the MBTA has followed through on some plans they told me about this spring, I could take a 5 minute subway ride to therapy after class!). Sadly, none of the places I'm looking at seem to have non-phone contact information available to the public. Granted, they all have TTY numbers, but the TTY is going the way of the dodo, and a lot of people don't have one, yours truly included. None of them have publicly available email addresses, video phones (seriously, WTF? I realize most CI patients don't rely on ASL alone, and many don't know it at all, but it'd be a nice gesture), or IM contacts. Get with the program, guys!

Anyway. Current mood: excited.

2007-05-30T23:13:00.000-04:00

I was on sedatives earlier today, and I have no focus, so I'm just going to paste here an email I sent out to some friends an hour or two ago. I can't even focus enough to surf the web, and lord knows that doesn't take much.

You all expressed an interest in being updated on my cochlear implant journey as things progressed - the surgery was scheduled for today, but unfortunately was canceled (to be rescheduled for an as-yet unknown time later this summer). Here's what happened.

Because of the structure of my mouth and throat, I have what the anesthesiologists call "airway management issues". Essentially, my short neck and large tongue make it difficult to intubate me; since you don't breathe on your own when you're anesthetized, intubation is fairly important. Because of his experience last spring when I had ear surgery, the anesthesiologist wanted to try intubating me while awake (which is not nearly as scary as it sounds) because then I could keep breathing, giving him more time to work, and he could call it off if necessary without worrying about making me breathe some other way.

So around 1:30, I was given two drugs, both of which act as sedatives and have anti-anxiety and amnesiac effects (although to be honest, I do remember most of what happened. Which is fine, because it was fairly interesting. I did end up sleeping most of the evening away once I got home around 5, so the sedative aspect worked.). Over the next two hours, the head of anesthesiology at the hospital and four other doctors who are experts at this kind of thing tried to place an endoscope - a fiberoptic cable with a camera - down my throat to guide the breathing tube. Again, it was very interesting to be conscious for this, and not nearly as unpleasant as you might think, although my throat is a bit raw now.

The plan for next time is to put me to sleep like they usually do, since the main problem was that I have a very strong gag reflex. There's a small but not insignificant chance that they won't be able to intubate me anyway, but since I'll be asleep, they'd then be able to do a tracheotomy (they'll have a team standing by to do that). Unfortunately, they need patient consent, and the anesthesiologist said that although I seemed more lucid and aware than most patients on those sedatives, he still wasn't comfortable declaring me competent to make the call. The fact that I couldn't walk out the door to get my wheelchair without first walking into the walls on either side of it probably didn't help ... anyway, if they go that route, I'd move to progressively smaller and smaller trachs over the course of a few weeks or months and it would eventually heal over, so that wouldn't add much to the recovery time.

So we have to reschedule the surgery and that airway procedure, hopefully sometime in the next few weeks.

2007-05-22T02:34:00.000-04:00

There's got to be a better way to do this. (If you have any suggestions, feel free to leave a comment. But I suspect it's the usual 'hey, you're doing this oddly, it's gonna be weird' thing, so I'm just going to talk. Or rant. Either way.)

This week is finals (and I really should be studying for my chemistry exam right now, but here I am anyway), and yesterday - Monday - were my physics and math exams. Leaving aside the academics and focusing just on the physical logistics, physics wasn't too bad, but math was nasty.

It's a discrete math class, so we had to do lots of proofs. Which means lots of writing, which means (a) ow that hurts, and more importantly (since (a) can be solved with ibuprofen and hot water), (b) holy crap, I hope my test is legible. I really do. I wonder what the graders do if they get a test that seems okay but is tricky to read?

Last year - my freshman year - I used scribing for one physics exam. It's a pain in the ass, because you're trying to communicate equations in spoken English, and that's just irritating. You really need to write it if you want to communicate quickly. Even with extended time, it's annoying. And there's no real way to know ahead of time how much writing a given exam will take, so whether or not you want a scribe is debatable. Plus, there's the extra pressure of having someone watch you while you take the exam. This is probably irrational, but it makes me feel even more stupid than exams usually do.

Ideally, I'd use LaTeX and just type it, but that takes extra time (which I can get, if I'm requesting accommodations, but in a three hour exam ... yargh), on top of which I'm not solid enough with LaTeX to do an exam without a reference - for symbols, if not for commands!

Tentative plan for next semester: I'm going to request a scribe for my 3 non-humanities classes, and make it clear to the scribe up front that they are a backup. Then I'm going to do everything twice: once (doing my own writing) to actually do the problem, and once (having the scribe write) to get a legible copy. I suspect that will work better than my system last year of trying to do both at the same time, and probably better than this year's system of just hoping it comes out neatly.

Fortunately, of the two exams I have left, one shouldn't require much writing, and the other I can use my laptop for. Thank goodness I only have two more to go, then home for the summer!

2007-05-18T15:02:00.000-04:00

While reading Blue's post about the incredibly ignorant decision of the 11th Circuit District Court, I ended up clicking my way to Bullshit on Wheels (via Disability Law), an episode of Penn and Teller's "Bullshit" that critiques the ADA.

The bullshit is incredible. Sam Bagenstos is right when he says, "I've seen lots of folks make libertarian arguments sound appealing, but these guys seem incapable of doing anything other than preaching to the converted." (and I love the neologism 'glibertarian' in that post), but it boggles the mind that this sort of argument still gets made. I got most of the way through the video before I started taking notes, but I want to comment on a few things.

First, the usual invisible-hand-free-market-economics argument is a lousy one, and I'm amazed that it's still being made, given that, y'know, if market incentives were enough to cause real change, people wouldn't have pushed for the ADA (and related legislation) and its enforcement so hard. Just because they found a disabled person to speak to those points doesn't make them legit. And while the "my disability is worse than your disability" point tends to be a cheap shot, I would suggest that arguing against curb cuts and lift buses is not so compelling when it comes from a reasonably strong and fit crutch user whose major disability is that he has one leg and is missing some fingers.

Second, the "ADA hurts disabled people because it invites litigation that creates resentment" argument is an old and tired saw. "The Case Against the ADA" explains pretty clearly why, and I won't repeat that here (google the title if you want a synopsis), but I will point out that a lot of those feelings are created by this sort of negative publicity.

Third, the sequence where Penn shows excerpts from the ADA and the implementation guidelines, and complains that they're dense, obscure, and confusing, is just ridiculous. That's how the law is written; that's what building codes look like. To suggest anything else doesn't do anything but suggest that you don't have a decent argument to make.

Fourth, the fact that there are more people who have accessible parking placards than need them is not a reason to not have accessible parking. I would suggest that maybe doctors should stop handing them out to people with minor injuries, or that maybe a shorter-term placard wouldn't be a bad idea ... but quite frankly, I don't think it's a huge issue compared with the benefit of having accessible parking. (Which, Penn, is not about "convenience", dammit.) Even if it were, why throw the baby out with the bath water?

Fifth, if you're going to try to find problems with the ADA, please try to figure out why it was written as it was, rather than assuming that things that don't make sense at first glance are simply nonsensical. Things like Braille ATMs, or lever doorknobs.

Sixth, and I know this has been said before, but if you work for a group that is cited or interviewed (in this case, the Cato Institute), it's generally considered unethical not to disclose that relationship.

Seventh, lawsuit abuse is a problem, though it's not specific to the ADA (I'm looking at you, SCO, and you, RIAA), but it's not a reason, in and of itself, to throw out a law, and frivolous litigation can get a lawyer disbarred (I believe).

Eighth ... post hoc ergo propter hoc? You know better than that. And for that matter, "people are afraid to hire the handicapped these days. That wasn't true before the ADA was signed into law" is flat-out wrong.

Ninth, the guy was talking about the lack of wheelchair accessible taxis, and Penn starts off on a rant about how in many large cities, all the buses are accessible. Which is a change in topic, and doesn't actually address the issue of whether or not drivers will stop for you, be willing to put out the ramp, and so on. (Penn also ignores the fact that those buses are accessible *because of* the ADA.)

Anyway, the basic argument seems to be that people are basically compassionate, and compassion can't be legislated. While that may be true, it doesn't explain why I can't get into my university's newly-built multi-million dollar cognitive science research building without help for the lack of a few simple choices that would have cost very little - if anything at all. Nor does it explain why changes made by the local subway system in the name of accessibility have actually worsened the situation for many of us.

This started out as a pretty awesome weekend (minus the fact that final exams start next week), so I'm going to stop now and try to forget about these guys' ignorance and bigotry - if only until the next battle starts.

2007-05-15T02:09:00.000-04:00

Hillary Franklin posted a blog about what Cued Speech is. Highly recommended, whether you're already familiar with cued speech or not. I'd also recommend this 10-minute documentary on Youtube about cued speech, most particularly because it has some interviews that are cued (it's also subtitled, signed, and voiced, so regardless of your communication style, there you go).

I'm hoping to get in some regular CS practice when I'm home this summer (two more weeks, whee!). I probably won't have (m)any opportunities to practice my receptive skills, but at least I can try to get my productive abilities to a point where I'm comfortable cueing, rather than falling back on signing. I read lips well enough that I can probably get by in a cueing environment without a huge amount of trouble, and that should give me the exposure I need to get better at the receptive end. As it stands now, I tend to switch to ASL with some people, and speech with others - interesting conversations, but not very productive from a pedagogical point of view.

Dammit, I gotta stop drinking caffeine in the evening.

2007-05-05T23:44:00.000-04:00

I just got the strangest email, and I have no idea why it was sent. I'm pasting it below, with no edits or modifications - everything is copied and pasted directly from the original. WTF?

Hello,
I wish to let you know that i have been paid by a client to assasinate you at convenience,and i have signed a contract of $650,000 yesterday for this.I have never met you before,but they gave me the full description of your
identity and contact,together with your photograph which my boys have used to trace you.

The reason why they want you Dead is not disclosed to me as i was not allowed to know,but you are now not better that the dead ok.

My BOYS are now contantly watching you,they are following you-home,office,everywhere.....,you go and they are waiting for my instruction to terminate you.And they will strike at convenience.

THIS IS MY MESSAGE-

LISTEN VERY WELL !!!!,the Police cannot do much to help you out in this right now because you are being watched,any such attempt is very risky cause you will push us to terminate your life without option. Your calls
are not safe also.In fact you are traced.
I have no business with you but at least i have cleared the way as a pro-,but you may have one chance to live again if you can contact me not latter that 24 hours after this mssage.

GOODLUCK!!!

2007-05-04T12:04:00.000-04:00

Ok, he's not just a bad debater. He's just a crackpot - in the essay we're reading, he continually cites Thomas Szasz, who co-founded the Citizen's Commission on Human Rights, generally regarded as the anti-psychiatry wing of Scientology. How did this guy get published again?

2007-05-03T22:03:00.000-04:00

I'm writing a paper tonight for my psych class on the prompt "Is addiction a choice?" Sadly, by "write a paper", I mean I'm reading two essays in a book we were provided with and then writing <3 pages of response. It's a bit pathetic ... half our grade depends on three essays written this way. Not much for critical thought.

What's irritating, though, is the quality of the essays we're provided with. In theory, these were published papers written by well-known psychological researchers. Yet they tend to make really basic errors - ad hominem attacks, argument by analogy, dismissing the opposition's arguments without citing any evidence. The essay by Schaler I'm reading right now is arguing that the disease model of addiction is flawed. (NB: I'm not taking a position on that - poor arguments annoy me whether I agree with the conclusion or not.) Now, that's certainly an argument that could be made on rational grounds, but Schaler is taking the position that addiction is not a disease by arguing that diseases have certain characteristics that diseases don't. I'll quote a few of the more annoying statements from the section arguing that it's not a physical disease (he covers mental disease later - never mind that that is a somewhat blurry line).

"Sometimes a routine physical examination reveals signs of disease when no symptoms are reported ... the disease is said to be 'asymptomatic'." He goes on to argue that addiction could never be diagnosed without symptoms, sort of missing the idea that we have diagnostic tools today that we didn't have in the past, and will continue to increase our diagnostic tools. We knew that there were physical risk factors for, say, heart disease, even before we could test for the genetic markers for high cholesterol. He also misses the idea that some diseases are asymptomatic until environmental factors come into play.

"True, such conditions as migraine and epilepsy are diagnosed primarily on the basis of symptoms. But, in general, it is not standard medical practice to diagnose diseases on the basis of symptoms alone." Yes, but there are exceptions, as Schaler just indicated ... what is it that keeps addiction from potentially being one of them?

"We continually hear that addiction is a disease just like diabetes ... [but] the analogy cannot be turned around. It would be awkward to tell a person with diabetes that his condition was 'just like addiction' and inaccurate too: when a person with diabetes is deprived of insulin he will suffer and in severe cases may even die. When a heavy drinker or drug user is deprived of alcohol or other drugs his physical health most often improves." I think this parallel is invalid to begin with, as it suggests that treatments for different diseases are somehow comparable. If you're going to make it, though, wouldn't it make more sense to compare addiction to an allergy, or celiac disease, or Crohn's/IBD, or some kinds of migraines (ooh, he did before!)? For many of those, removing the environmental trigger can reduce symptoms to a manageable level, or even eliminate them entirely.

For that matter, Schaler seems to switch between definitions as it suits him - is 'addiction' the effects of a given drug on the body (cirrhosis of the liver)? Is it susceptibility to dependence? Is it the behavior associated with obtaining and administering drugs?

Gah. I guess the takeaway from this rant here is "don't make comparisons to stuff you don't understand, because it makes you look like a jackass".

2007-05-02T02:22:00.000-04:00

This week's topic was probability. From the lecture notes: "The Halting Problem is the canonical undecided problem in computation theory that was first introduced by Alan Turing in his seminal 1936 paper. The problem is to determine whether a Turing machine halts on a given ... blah, blah, blah. But what's much more important, it is the name of the MIT EECS department's famed C-league hockey team."

I'm gonna miss Professor Meyer next year. This is almost as good as the time he told us that his best student ever did his most important work while stoned. (Which was different than the lecture where the TA told us "you guys come up with the weirdest fucking ans- oh, never mind, I'm on crack". I see a sequel in the works: There's Something About Mathematicians, perhaps.)

2007-05-01T09:22:00.000-04:00

The Roommate has been under a lot of stress lately, including a (mostly) unexpected breakup. I think he's handling it well, viz:

Roommate: I could really use a nice round of sporting clays right now.
Me: [Looks at him, amused]
Roommate: Maybe I should explain.
Me: No, no, I get it. Blowing shit up always makes me feel better, too, I just tend to do it online.

2007-05-01T00:58:00.000-04:00

On May 9th (next Wednesday), MIT will be hosting a conference called: H2.0: New Minds, New Bodies, New Identities. Michael Chorost and Oliver Sacks will be speaking! (And of course, which day have I taken off several times this semester to go do cool shit like this? Yup, Wednesday. Lab day in physics, gah.)

2007-04-29T00:54:00.000-04:00

I went to Bernard Bragg's Theater in the Sky tonight. Wow. It was incredible! If you have the opportunity to see it, I would highly recommend it, whether or not you sign or have any connection to the community. Again - wow.

I hope he's planning to release it on DVD - I'd love to have my folks watch it. (And Dad, as a former actor who remembers hearing about NTD when it started, would get a huge kick out of it.)

Edit: I originally directed the above link to the "Bernard Bragg" page at Wikipedia. Which apparently doesn't exist. How is it that the Father of Deaf Theater doesn't have an entry? Someone needs to add that (that is, someone who knows more about BB and Deaf theater than I do.)

2007-04-23T08:54:00.000-04:00

The coop living group I've been hanging out at lately offered me a bid, and probably 10 of the residents told me that they'd be not just willing, but excited to modify the house to make it more accessible to me. This is a coop with not a lot of money, where all the renovations (and, granted, they do quite a bit) are done by house residents. They're under no legal (or, I would argue, moral) obligation to do that.

MIT, with money up the wazoo, a "Senior Architect for Accessibility", and both a legal and a moral obligation to be accessible, drags its feet on minor changes either to campus infrastructure or to Facilities' book of guidelines.

Go figure.

2007-04-15T02:52:00.000-04:00

What sort of screwed up subway system closes down at 12:30? Gah. Asinine. Short-sighted. Failing to fulfill a major market.

So I was trying to take a cab home from the bar I was at at 12:15. I'm way too short to be seen by a moving cab, but the manager called the cab company, who said they'd send one (this was after I'd given up waiting for an accessible one, and decided to leave my scooter there and pick it up in the morning). Never came. I did some research a while back into how cab companies work; apparently, they like to call their drivers 'contractors' for various (primarily benefits-related) reasons, so all they can do is put out a request; they can't actually send you a cab. (There are a few exceptions.) So, being as it was closing time (what sort of screwed up city has bars that close at 1?), all the cabs were able to find plenty of business without going out of their way to pick up the guy who called dispatch. And I'm way too slow, walking, to beat the other people who also want to hail a cab. I finally made it home at 2:15 - about two hours after I decided to leave, and the bar was only a 20 minute drive from home.

There needs to be some incentive for cab drivers to prioritize called-in requests. Too bad you can't offer a large tip through dispatch. So now it's time to curl up in bed with a big bottle of Motrin, and figure out how the hell I'm going to get transportation out there in the morning to retrieve my scooter.

2007-04-13T02:04:00.000-04:00

Thursday (yesterday) in Psych, we were talking about emotions and happiness, and the professor made the not-so-surprising statement that, for the most part, people tend to be generally happy despite major life events. The example he used was quadriplegia - that even a few months after their injury (so I assume he means quads with spinal cord injuries), they tend to rate their happiness as above neutral.

I pointed out after class that this sort of comparison is less than helpful. What I didn't have the words for at the moment was that SCI tends not to be a lasting trauma. That is, we talk about the grieving process that late-disabled people go through; they are, I think, essentially grieving the end of their life. "How will I work and support myself? What can I do for fun? Who will love me, sleep with me, settle down with me?" But then you pick up the pieces and you go on, and you discover that life isn't over, and the event itself doesn't necessarily stay in your memory as a tragedy.

A better example, in my opinion, would be the death of a significant other. Given enough time, people tend to rate themselves above neutral; but they still consider the event a tragedy. No one is going to look back and say, "yeah, my wife's death really changed my life for the better".

This, for me, raises the question: what idiot did this study? I can see someone saying, "we need a standard tragic event to study peoples' reactions to", but to pick an event where you obviously don't understand the reactions involved seems just stupid.

2007-04-10T17:12:00.000-04:00

There's a terminology thread over on Feministe about the word "cisgendered" (as in, conforming to the gender binary - not trans, not genderqueer, etc). The thing about cisgendered is that it provides a way to reference non-queer genders without assuming normality on the part of, well, the cisgendered (i.e., "normal gendered" or "non-trans").

Piny points out that the disabled community doesn't have this sort of word - we have "non-disabled" and we have "able-bodied" (or TAB, which is similar). Go read the post - it's much better expressed there. There are subgroups, granted, that have their own terms - autistic vs. neurotypical, d/Deaf vs. hearing, LP vs. BP, but there doesn't seem to be a broader term.

I nominate "cisabled". I googled a bit, and I can't find a single usage that isn't a typo of disabled - I'm surprised that no one has ever used it before. (And no, I don't think it is any more likely to be useful than any other analogous neologisms - how often do you hear people say "cisgendered" outside of a gender politics context? But I think the very existence of terms like these can useful in its own way. I will stop now before my grammar falls completely to pieces.).

2007-04-10T01:49:00.000-04:00

Stilts: a Story over at Ballastexistenz, is excellent. Granted, I'm partial to the height analogy ...

2007-04-03T23:16:00.000-04:00

Yippee! I got my surgery date this afternoon - I will get a cochlear implant (Advanced Bionics' Harmony) on the right side at noon-ish on May 30th.

I also have finally worked out the FM system issue. It seems that my implant isn't compatible with the Oticon Lexis (I don't think the Nucleus Freedom is compatible with the Lexis, either), so I'll be upgrading to a Smartlink. Insurance will probably cover it. I hope. Anyway, I think I have a Jabra Bluetooth adapter lying around here somewhere. Not sure where I picked it up, but it's from back when cell phones didn't have BT built in, so I should probably see if it's compatible with my phone, and if I can pair it with the Smartlink.

I'm still waiting to hear back from Phonak on whether the Smartlink supports the A2DP profile. A2DP is basically a standard that is optimized for audio sources that are higher quality than your phone. If it is, then when OS X 10.5 comes out later this year, I should be able to pair the Smartlink and my laptop to listen to iTunes and watch movies like I do now, but without the extra cables. (Right now, it goes laptop-cable-Lexis FM-fm signal-hearing aid; if the Smartlink supports A2DP, then it could go laptop-Bluetooth signal-Smartlink-fm signal-hearing aid. Same number of hops, but fewer physical items to deal with.)

2007-03-21T09:26:00.000-04:00

I'm taking a trip to New Haven today for one of Advanced Bionics' "Discover the Future of Hearing" seminars. Should be fun.

Yesterday, though, was not so fun. I've known since I moved here about two years ago that the Charles/MGH stop across from Mass General Hospital was inaccessible. When it was announced that they were rebuilding it - and that accessibility would be a key feature, obviously I was excited, particularly when I realized that this would make it easy to get to MEEI for the therapy I'll need after I get my implant.

The initial opening was February 17th, although they'll be doing cosmetic work until April. Call me a cynic if you must, but I figured I should check on the station before I committed myself to using it. So about a week ago, I hopped the T one stop to Charles/MGH - can you guess where this is going?

The platform is several inches above the floor of the subway car. Essentially a small curb, I suspect it could be jumped by many manual wheelchair users, but it's impassable if you're in a powered one. Color me unsurprised. So yesterday, I called the Office of Transportation Accessibility (OTA) and the general T customer service line. Both offices were amazed to hear that the station was inaccessible. The person in the latter office even said, "but ... that was the accessibility project, right? Isn't it supposed to be accessible?" No shit.

Here's the best bit. I decided to double check, and went to the station; no surprises here, it was still kaput, so I rerouted to the OTA, figuring I'd speak to a supervisor in person. When I got there, Ron told me that they had indeed been involved with the planning, and he wasn't sure where the ball got dropped. I get the impression they haven't figured out that there's three phases where they need to be involved: one, they need to consult on the design phase, pointing out places where things could go wrong. Two, they need to sign off on the design before it gets sent out to the construction firm. And three, they need to inspect the finished product before it is accepted as complete and before it is reopened to the public. I'm not sure Ron grasped that point.

Instead of a station that is actually accessible, like many of the MBTA's other stations (or D.C.'s Metro system, or ...), Charles/MGH will be outfitted with bridge planks. Anytime a wheelchair user wants to take a trip that terminates there, they will seek out the customer service agent at their point of origin and have them call ahead to make sure an agent is there to put out the bridge plank. I suspect numerous things will go wrong here - forgetful (or uncooperative) agents, lost or missing bridge planks, etc. And in the meantime, the website still has this station marked as being fully accessible, another problem that Ron didn't seem to understand.

Entering WIBNI territory here, I'd love to see an amendment to the ADA that prohibited "Oops, we screwed up. Maybe next time" as an excuse for this sort of thing. Someone - whether the MBTA, the architects, or the construction firm - screwed up on this (as well as other recent changes made in the name of accessibility) and should take responsibility for correcting their mistake, just as they would with any other violation of building codes.

2007-03-17T01:14:00.000-04:00

I think being woken up by your roommate and shouting semi-incoherently for several minutes that you're surfing the web on "that thing" and pointing at your alarm clock may be the very definition of sleep deprivation.

2007-03-12T13:46:00.000-04:00

[Warning: train of thought ahead.]

New project: how to get my scooter to supply power to a USB port. My ipod in particular - its battery dies a lot (partly because its 3-4 years old, and partly because I don't remember to charge it) I realized that I spend a lot of time sitting right on top of a big-ass car battery, and an idea sparked (Yes, puns are the lowest form of humor. Except bilingual puns, those are worse.).

So I ride an Amigo RT. It has 2 12-volt batteries wired in series for a total of 24 volts - although I should borrow a voltmeter and check this. According to the information at atbatt.com, each battery (and thus, the whole pack) supplies around 18 amps - give or take a bit depending on the specific brand, age, etc. (Note: I will be revising this as I do more research. My knowledge of circuits is pathetic for an EECS major, even if I haven't taken any EE classes yet, and I need to fix that.) USB power is 5 volts, with a range of .1-.55 amps. So that's if I tap directly into the battery. I should check, though, if I can tap into the headlights, that opens up some interesting options (reducing the no-load drain, tucking the port inside a casing, etc).

Firewire would be easier, as it takes a broader range of voltages (14-30? Can that be right? Closer to 24, anyway, than USB), but then it will only work with my ipod - not with my cellphone, and not with any future devices I might have. And assuming most wheelchairs use similar power supplies, I should be able to move this from chair to chair when I upgrade, so future-proofing would be nice. Plus, USB is just cooler.

I think my next step is to call Amigo and get some more detailed specs.

2007-03-08T23:52:00.000-05:00

My Roommate is Awesome

Me: "You know, I've figured something out. You keep doing that 'went right over your head' gesture, and that's why you're going bald so early."

Him: "Yes, well, most things I say go over someone's head. And everything goes over your head, shorty."

Me: "That's okay. I'm allowed to let these things over my head - I have a doctor's note."

Then I said something about "learning by osmosis". Given that he was once thinking about being a chemistry major, I should've known better; instead, I wound up with a tennis ball thrown at my head (which happens surprisingly often).

2007-03-01T23:55:00.000-05:00

I've been added to Blue's blogroll. Neat - I hadn't intended for this blog to have so much about disability on it, but I'd noticed recently that that was where it was going.

And nice timing, too, as I have a question about the ADA that maybe now someone will stumble across and be able to answer.

I'm in the process of talking to my university about their compliance with the ADA in new construction and large renovation projects. One of the statements that I keep hearing is that power operated doors aren't required by the ADA. True enough, as it goes - there is no mention (as far as I've found) of these in the ADA itself or in the ADAAG. There are requirements for automatic or power-assist doors that are included (namely, that it cant take more than 15 pounds of force to stop the door from moving), but I'm more interested in what requires them to be present. However, there *are* requirements for doors - the width of the door itself, clearances around the door for maneuvering, and the force needed to open the door.

So, from a hypothetical standpoint, is an automatic door considered a workaround? That is, if the design of a building "requires" a heavier door (supposedly for external doors in some places, or for security or fire doors), and so the door isn't up to code, is making it automatic or button-operated considered a way of bringing it into compliance? I'm hoping that someone can confirm for me that this is the case; it will make it a lot easier for me to argue that it isn't just a given subset of doors ("external doors") that needs to be outfitted with automatic operators, but rather, any door that has a certain amount of resistance.

Please leave a comment if you can confirm this one way or another - bonus points if you can cite an official publication or precedence here.

2007-02-28T23:25:00.000-05:00

Professor (to a student): Okay, now uncap the nitrogen flask and fill the canister.
TA: Actually, I think there's already nitrogen in the canister, Professor.
[Professor grabs the canister and quickly dumps its contents on the floor - it flows out towards the students, then disappears - hey, it's nitrogen, right?]
Professor: No, there isn't.
TA: Right as always, sir.

(earlier)

Professor: So if current is like water flowing in a pipe, what is our electrical analogy to pressure? You. [Points at a student]
Student: Uh ... Coulombic interactions? Electric field? The conductor?
Professor: Are you going to rattle off all the nouns you've heard this semester, or should I just tell you the answer?

(This substitute professor was actually a neat dude - way better than the usual lecturer.)

2007-02-16T09:20:00.000-05:00

It is so wonderful to have my own wheelchair back, as of five minutes ago - the one I can get into without losing all dignity, the one that has places to put my laptop, my backpack, my keys, the one that has a variable speed throttle as opposed to just an on/off, the one with a swiveling seat. The one that doesn't make horrendous sounding noises at inopportune moments (or constantly, for that matter).

Yup, my day has been made. (And ring presentation tonight - sweet.)

EDIT: As always, there are some great posts out there that say it really eloquently. Here are some quotes:

Blue says:

Also, many of the same joys people get from driving their cars can be found driving an electric chair. There's skill to it, enjoyment of speed and mastery of a machine.

Fahrvegnügen!

Wheelchair Dancer says:

You can get a sense of how long it takes to turn in a chair, what it feels like to PUSH a chair, how to stroke, wheelie, etc. But you don't know what it means to actually live in a chair and feel it melded to you as an extension of your body or, especially, what it means to actively use the chair instead of feeling it as a prop. And this means you won't be able to move in it as we do. You won't feel comfortable in it in the same way that we do; you don't even see the texture and surfacing of the floor the same way. Our relationships to the space are different.

Wheelchair Dancer again:

I look around me. I see people in their seats. And it suddenly comes to me. They are all frozen in uncomfortable seats. My seat is an extension of my ass. It's shaped around the contours of my body. I am comfortable. My hands fall to my side and strike the smooth, cool titanium of my rims (plastic covered for dancing, titanium for life). It sounds unoriginal, but stick with me for a minute. My chair moves -- yes! really! Their chairs do not. My chair has mobility built into it. I swing a little, rock a little. Do non wheelchair users think of wheelchairs as confining, things to be bound to (in?) because their experience of seatedness is without motion? If everyone's chairs had wheels -- dining room, office, stools, sofa, armchair, rocking chair -- would wheelchairs be less stigmatized?
...
We have chosen, culturally, to privilege the model that is less developed, less technologically cool. Weird.

And The Idiot Zone is just funny.

2007-02-13T13:42:00.000-05:00

From the University of Wisconsin (at Madison?):
"In addition to completing the task while wearing both implants, the children [aged 5-14] were asked to remove the microphone and other external parts of one, rendering them deaf again in that ear.

"That turns out to be an interesting experience, because they don't like to remove an implant," says Litovsky. "We have to barter for that, with M&Ms or something else that motivates them.""

I could've told you that would happen, and without a longitudinal study, too. People don't like reducing their capabilities, even temporarily.

Not long after I was diagnosed - so when I was three - a doctor bribed me to walk up and down a hallway as many times as I could by giving me a quarter for each round trip. Bribery works ... although I think my scale has gone up in the intervening years.

2007-02-01T14:10:00.000-05:00

It has been a very good day so far. I met with the ADA Architect here, who seems a lot more on top of things in person (and suggested some changes to their protocols that will make retrofitting for accessibility a lot more efficient than before).

On top of that, the Disabilities Services Office and I will be pushing to reform policy here so that accessibility is planned in, rather than retrofitted in on an as-requested basis. (And from a practical standpoint, none of this "but technically the code doesn't require that" stuff.) We've come up with the names of the people we think we need to talk to, we've got our argument partially framed ... I think this will end well.

2007-01-30T11:37:00.000-05:00

You have an MD and board certification in otolaryngology. You do not have an AuD, a CCC-A, an MS-Aud, certification by the ABAud, or any other audiological certification.

So when I tell you that I am a cochlear implant candidate; that my SRTs are 90 dB and above; and that I can't understand you very well when you have your back to me, perhaps you should assume that my clear speech and my receptive capabilities are due to a progressive loss; good lip reading; and a clearly defined context within which our conversation is contained. As opposed to, y'know, asking when I last saw an audiologist (duh - the candidacy thing, remember?), if I'm sure I have a severe to profound hearing loss, and whether I can understand speech with my hearing aids out.

You may not have the certifications I mentioned above, but you should at least know that much if you're going to be an ENT (and lecture on the topic at Harvard med school).

2007-01-25T02:05:00.000-05:00

Our Attorney General is a lunatic.

Summary of the CSPAN clip:
Gonzalez: The Constitution doesn't guarantee habeas corpus.
Specter: WTF? The Constitution says you can't suspend it except in case of invasion or rebellion. That's pretty much the same thing, yeah?
Gonzalez: No, no, it says you can't suspend it. It doesn't say anyone has it to begin with.

Shorter version:
"I'm not touching you. I'm not touching you, really! I'm totally an inch away from you. Ok, now I'm almost touching you, but it's not actually you, it's your clothes. I'm still not touching you!"

Only thing missing is the inevitable *SMACK* that ends the whole situation.

2007-01-24T11:34:00.000-05:00

The 'Because Slashing Your Tires Would Be Counterproductive' Act of 2007

A BILL

To amend Chapter 89 of the General Laws of Massachusetts to provide that the obstruction of accessible routes shall carry a civil penalty.

Section 1: SHORT TITLE
This Act may be cited as the "Dude, If I Had a Nickel for Every Time ... Act of 2007".

Section 2: FINDINGS
The Massachusetts Legislature finds the following:

Coming up to a crosswalk and finding that it is blocked by a motor vehicle is irritating.
Crossing the street and discovering that the crosswalk on that side is blocked, but the light has changed, is dangerous.
People are idiots.

Section 3: OBSTRUCTION OF PATHWAYS
The Massachusetts General Law (Chapter 89) is amended by inserting after section 11 the following new section:

(a) Prohibited acts:
It shall be illegal for any motor vehicle to park or otherwise stop a car for any period of time in such a way that it obstructs a curb cut, ramp, handicapped parking place, elevator, or the ramp or lift of a motor vehicle adapted for the use of disabled persons. Building entrances shall also be covered by this part, when they are the only accessible entrance to said building within 200ft, or when the other accessible entrances within that range are similarly blocked. (Note: under the Americans with Disabilities Act, a temporarily broken or otherwise unusable entrance is not considered accessible.)

(b) Penalties:

An attended vehicle shall be subject to a fine of not less that 25 and not more than 100 dollars, at the discretion of the ticketing official.
An unattended vehicle shall be subject to a minimum fine of 125 or the fine for parking in a handicapped accessible parking place, whichever is greater.
The ticketing official may, at their discretion, require a court appearance by a repeat offender. In such a case, the fine shall be determined by the judge, not to exceed 1000 dollars.
Whining and excuses raise the fine by $10, not to exceed the maximum allowable fine.
All fines collected through the enforcement of this Act shall be placed in a fund described in (c).

Monies collected as described in (b) shall placed in the ACCESS Fund, to be administered by the Massachusetts Office on Disabilities.
At least 50% of the contents of the ACCESS Fund shall be used to provide for better accessibility in Massachusetts. The remainder may be used to publicize this act and the motivations for it.
Included in (2) are infrastructure modifications, tax credits for private entities that improve accessibility, training, and services (including interpreting and other aid services).

Section 4: This Act shall go into effect January 1, 2008.

Hey, I can dream, can't I?

2007-01-20T18:35:00.000-05:00

Babylon 5, Season 4, Episode 2
Delenn: "If he's dead ... then my soul will join him, even if I cannot. As I promised him long ago, I will see him again in the place where no Shadows fall."

1984, by George Orwell:
“There are a couple of minutes before you need go,” said O'Brien. “We shall meet again — if we do meet again—”
Winston looked up at him. “In the place where there is no darkness?” he said hesitantly.
O'Brien nodded without appearance of surprise. “In the place where there is no darkness,” he said, as though he had recognized the allusion. [This is a reference to a dream Winston has earlier in the book, I believe.]

I wonder if the parallel is intentional. Obviously Delenn is quite a different character from O'Brien, but within the context of the Earth Alliance/Babylon 5 rebellion plot arc, I think there are several allusions to 1984 in the series. This allusion - if it is one - would be outside of that context.

2007-01-11T15:43:00.001-05:00

The Hypocritic Oath.

2007-01-11T15:33:00.000-05:00

The lab I'm working in is such a cool place. Mmm, and Uno's deep dish at large meetings. Then I discovered the piece de resistance: we have a foldout couch in the lab (there's a bunch of ... enhanced ... furniture here, since one of the themes of the lab is tech integrated into daily life, so it's not that out of place).

I don't know whether to laugh or be horrified at the idea that people occasionally crash here.

2007-01-03T14:47:00.000-05:00

I saw a new audiologist yesterday - one who specializes in cochlear implants. We did testing of a different sort - normally, my audiograms have been based on pure tones, with and without noise, and what's called a "closed set" - a set of words that you know in advance and have to repeat back. Although we did that briefly, we also did some more detailed testing with my hearing aids on - identifying individual words as well as sentences, with and without noise, but with no context. I believe it's called the HINT.

With no background noise, I score about 30%. Since I lip read probably 30% of what I 'hear', the rest is made up for with context, bluffing, and repetition - that's a big difference. Bringing the volume up to about 60 dB, which is where I hear pure tones with my aids, I get closer to 70%, which is pretty decent. This means that I'd probably score 70+% on that same test with an implant, which would be a big improvement, and means I'm a cochlear candidate; FDA guidelines say 30%, and the implantation center I'm talking to has 50% as their recommendation for getting an implant.

The whole infection thing still needs to be discussed, but I don't think that will be an issue. Assuming all goes well, I'll get an MRI and possibly a CT scan of my skull and inner ear, do more audiologic testing (to determine which side to implant - the implantation destroys the hearing on that side, so this is important), and then we're looking at surgery in late May. About 10 days later, I could be hooked up for the first time. My history of hearing is pretty optimal for an implant - I'm used to sound, so I don't have to relearn that, and I don't have to learn to hear and learn (spoken) English at the same time. There may be a period where I can't comprehend speech with the implant alone, although I will be able to wear my hearing aid on the other side, and that period could be anywhere from a few days to a couple of months. They recommend weekly auditory therapy for a few months after implantation, but that could even be done back at school.

The two big companies that manufacture implants are Cochlear, which makes the Nucleus Freedom, and Advanced Bionics, which makes the Harmony 120 (there's a third company, Med-El, but they're mostly used in Europe, and the center I'm talking to doesn't work with them right now). From what I've read, they're pretty equivalent; either one is a safe choice. So the decision depends mostly on features. Going through the brochures and DVDs now, it looks like both companies are focusing mostly on people with no experience of hearing loss - seniors and parents of very young children - so there's a lot of emphasis on the whole "hearing again" and "rejoining society" thing. Almost makes me understand why some Deafies find the whole thing so offensive ... almost. And of course, marketing is marketing - but I think I have a bookmark around here somewhere with a fairly neutral comparison of the two companies' products, and I have some acquaintances with implants who I can ask for information. Either way, this will be very interesting.

2006-12-24T13:51:00.000-05:00

I lip read. It's very integrated into my perception of speech, so separating what I *hear* from what I *see* is tricky, and some speech I understand because of a combination of both. But I rely very heavily on lip reading. So I'm very aware of when someone is and isn't doing things that make that easy - if I've ever moved you so you're facing the sun and I'm not, or if I've ever tapped you on the shoulder to get you to turn, that's what that was about. And it's always annoyed me a bit when Ear-Nose-and-Throat doctors do things like turn away, or talk when I have my hearing aids out (because, hey, they're sticking things in my ears), or talk from behind me. I never thought I would be able to top that.

Two days ago, I met with a surgeon who specializes in cochlear implants - I'm a strong candidate in some ways, although a high-risk one in others, so that discussion isn't over yet. So, as a CI specialist, she deals entirely with deaf and hard of hearing patients (and their usually hearing parents; she's a pediatric specialist). She remarks on my audiogram, as well as on how well I compensate for my hearing loss (as evidenced by the way we were speaking, my studies, and so on), and comments that I must read lips extremely well (among other things). This is true; there are those whose lip reading skills are better than mine, but I'm definitely up there.

Then she turns to her computer to look at my notes, and her back is to me - but she keeps talking. Still, she's among the best at what she does.

EDIT: Dad told me a funny story about my youth. When I was young enough to be held in an adult's arms, apparently I would grab your chin (very forcefully, I guess) if you were talking and not looking at me, and turn your head for you. So I was aware of this on some level even before I was diagnosed (and got haring aids).

2006-12-10T05:02:00.000-05:00

I have a love-hate relationship with Sudafed. On the one hand, it keeps me up *all* *night*, no matter when I take it. On the other hand, it really opens my airways when my allergies flare up. At least it doesn't make me anxious, just a bit jittery sometimes. Oh, and the Drug War is bad, m'kay? (Yes, meth is bad. But I think the scale of the problem has been sensationalized, and I don't think the pseudoephedrine restrictions are helpful. This is not just self-interest, either - I think policy regarding a lot of drug use is counterproductive.)

2006-12-09T14:40:00.000-05:00

2006-12-08T18:28:00.000-05:00

Normal is a word for an idea that doesn't have a whole lot of meaning. It's based entirely on what we're used to.

The spark for my thinking about this recently was hearing aids. I cannot remember not wearing hearing aids, not having them be a part of my life. To me, this is normal. (There's a side topic here about how I view my wheelchair and crutches; because the body I live in is the body I identify with, I see them as liberating, as opposed to if I saw 'my body' as being more average, in what I would consider a more socially acceptable form of body dysmorphia. In such a situation, I might perceive these tools the way TABs - the Temporarily Able Bodied often do. This viewpoint, when I explain it, often is seen as a rationalization, but I am being completely frank here. But I digress.) This is why I don't like the term Late Deafened, and don't feel that it describes me. There is a cultural connotation that goes along with the term that doesn't fit who I am. While it is true that I have a progressive hearing loss, and that I have gone from being hearing (for a few short - but critical, from a linguistic perspective - years) to hard of hearing to a place now that is somewhere between hard of hearing and deaf, I am not Late Deafened. I cannot remember a time when I didn't lip read, use captions, use a non-auditory alarm clock, and so on. To me, a Late Deafened person is someone who lived with full hearing for most of their life, then became deaf or hard of hearing at least after adolescence - and that's not me.

All of that was background. Now I'll get to my point. I wear my hearing aids not quite every minute of the day - I take them out now and then to enjoy the silence (excellent link there, BTW), or for various other reasons. But they're something that I miss when they're not there. When it's raining out, and I put them in my backpack to keep them dry, I feel naked; something's missing. Not merely the sound, but the inside of my ear is now cold, wet - there's wind blowing in there. It feels very wrong. But one of the major 'advances' in hearing aid and ear mold tech in the last decade was the "open fit" mold - a mold that got rid of that stopped up effect. When I first heard about this, I was quite relieved to learn that it wasn't available for someone with my level of amplification - at that age (young teen at most - more likely late elementary or middle school), I wasn't quite sure how to justify that I felt uncomfortable without something in my ear.

Right now, I'm wearing a pair of loaner aids, trying out a new line of aids made by Phonak (my first two set of aids were Phonaks; my last set was Oticon). I really like these - not enough power (although the pair I'm actually buying in 2-3 weeks has more gain), but they're excellent in noise. Or perhaps I should say, better in noise. My standards for hearing in noise are pretty low - anything I can get. And they do some nice things with sudden loud noises, so that I'm not startled or hurt. There are still some things about the aid that irritate me a bit - the user interface is a step backwards from the old style, for instance. But overall, I like them, which I suppose is why I'm buying these top of the line aids instead of the cheaper knockoff crap.

The one thing that I'm still not happy with, though - and here we reach the point of this longwinded post - is their size. My old aids were quite a bit larger than this. Probably not something you'd notice by looking at me (although I'd be surprised if anyone other than the interpreters I work with noticed that I had new aids), but it is something that I can tell immediately by looking or by wearing. I think the motivation for the change was largely cosmetic, but possibly it was for comfort as well. But having worn large aids for much of my life, it feels wrong. Like it's going to fall off, at times (even though, from an objective standpoint, it sits very solidly behind my ear). And on top of that, the battery is a size smaller, and correspondingly, the battery life is less. I'd guess about half to two thirds of what it once was. I'm willing to sacrifice battery life for improvements - but to me, the improvements worth sacrificing for are improvements in hearing and in features. Because I'm used to large aids - because they fit into my definition of normal - cosmetic and fashion improvements in size don't impress me. So sacrificing battery life for those, well ... it's not the choice I would've made.

This is not to say that cosmetic improvments are undesireable - I think that the pair of aids I'm getting in a few weeks looks a lot better than the first set I ever had, and the geek-chic of clear aids still appeals to me. But I don't see it as something to sacrifice utility for. Especially with all these Bluetooth headsets around now (I've been chastised for not removing my headset when speaking to people ... never mind that it's not Bluetooth, and that without it we wouldn't be having a conversation at all ... oops), and the usefulness of being able to point to a hearing aid while explaining that I'm hard of hearing.

One last thing, then I'll shut up. The (somewhat) new Oticon Delta looks kinda cute, and I really like the color choices (come on guys, give us that range of colors in your power models), although some of its looks are another one of those "what you're used to" things (namely, it's way too small for me to feel comfortable with, and the tubing and the ear plug, while more comfortable for people who are new to aids, are too different for my taste. Urgh - I'm using a plug kind of like that in my right ear now, and I hate it.) It's nice to see that the companies are trying to get away from their "little kids and geriatrics" image. Obviously their motivation is profit, but I think there are benefits for consumers in the long run, both in terms of public perception, and in terms of better - more featureful and aesthetically appealing - aids.

Plus, what the hell am I going to use as an identifier in Deaf-friendly situations if I don't have visible aids?

2006-12-04T03:29:00.000-05:00

Using athena, the easiest way to print is with lpr. This means that most files must be converted to Postscript before printing. Thus, a typical Friday morning in the Athena clusters contains a lot of:


# pdf2ps file1.pdf
# pdf2ps file2.pdf
# pdf2ps file3.pdf
# lpq
# lpr file1.ps
# lpr file2.ps
# lpr file3.ps

Replacing "lpr" with "lpr -Pquickprint2" or "lpr -Psimmons2" or whatnot if you want double-sided printing. This is, to put it nicely, a pain. Not only might you have multiple peoples' print jobs mixed up together, but you have three cover sheets where you really only need one. And you're probably in the fishbowl quickcluster, trying to (if you're in a wheelchair) type on a keyboard at chin height while watching a monitor that is two feet above your head. Or maybe that last bit is just me. Anyway, it's 10 minutes before class, so you're in a hurry.

The solution is to concatenate your PDFs, which I have explained in the first real post on my new blog. I'll still be posting here; that's just to memoize techie tricks. And no, that's not a typo - I do mean memoize.

2006-12-04T02:48:00.000-05:00

Thursday: Signed for ~2 hours (okay, some lip reading - but very little). Including with interpreters, who generally tend to ignore non-signers when they're off-duty and in social situations.

Friday: Did really well on a test I'd only hoped to pass.

Saturday: Company meeting - and got a bare metal 1U (incidentally, did you know that a rack unit is equal to a vershok? Neither did I.) to play with in my dorm room (finally, a server to tinker with). And it's headless - no mouse, keyboard, or CD drive - so I have to PXE boot it from my laptop before I can do a network install. Seriously, PXE booting. How bad ass is that? [/geek]

Sunday: Metacircular evaluator. The Maxwell Equations of computer science, as some have said.

Could this weekend have been any better?

2006-12-01T06:53:00.000-05:00

My schedule has been (tentatively) set for next semester. Physics 2 (EM), Math for Computer Science, Intro to Solid-State Chemistry (chem requirement) and Intro to Psych. The really nice bit is that my day doesn't end all that much later than this semester - 3:30 and 5, rather than 2 and 5 - and it starts way later - 11am rather than 9 and 10am. Two recitations have yet to be determined, but I'm holding out hope that they won't be too early. So it's looking like a good semester.

Oh, right, and ASL on Wednesday evenings and whatever random events I can fit in. I made it to Bingo night yesterday - possibly a mistake given my exam today (and what am I doing blogging rather than studying?) but it was most excellent.

On my list for future semesters: Disease and Society in America, Identity and Difference, Intro to Linguistics -> Language Acquisition, Lab on the Physiology, Acoustics, and Perception of Speech (technically a grad class, so maybe as a Jr/Sr).

2006-11-22T04:29:00.000-05:00

Apparently doctors like to dress casually, too. Whoda thunkit? ABC is trying to suggest that this is some sort of reaction to Grey's Anatomy, but I think that's a load of crap. Just because casual day took longer to hit the medical profession does not mean that a TV medicodrama is responsible.

My favorite bit has to be the part where one woman says that if she walked into the ER (yeah, hopefully you'll be *walking* in, rather than *wheeled in on a stretcher*) and the doctor that saw her was wearing a hawaiian shirt, shorts, and a 'long ponytail', she'd feel uncomfortable. My reaction would actually be the opposite: hey, here's a doc who is comfortable with his humanity, who has a lighter side. Seriously, does it make a difference if the doc is wearing a dress shirt and a tie (tie-wearing, BTW, has been shown to have a significant link to many nosocomial infections) as opposed to something more along the lines of what Herr Doktor House prefers? The lab coat kinda sends a message of arrogance when it's not serving a practical purpose, I think.

The other focus of the article, was doctors' decolletage. (Great word, that.) I for one suggest that any media source that decries an increase in decolletage is no longer relevant (assuming that ABC was ever relevant, I suppose). I mean, there is a reason we call it "playing doctor" ...

2006-11-17T21:57:00.000-05:00

"Crap, I forgot the dθ. Well, I guess that's okay. In the grand scheme of things, dθ is really really small."

2006-11-16T22:49:00.000-05:00

The folks at NASSPE (National something for gender-segregated education) are suggesting that "girls hear two to four times as well as boys" (paraphrase). This is cited as one example of ways in which male and female students would benefit from separate classrooms (something about male teachers speaking loudly enough that girls perceive them as yelling, or crap like that). Now, they're citing a study that show a 10 dB difference in auditory threshold at 4 kHz. For those of you who haven't been reading audiograms since you were five, let me explain what this means. Decibels are logarithmic, much like pH, and so a sound that is (say) 60 dB is perceived as being about twice as loud as one that is 50 dB (sound pressure doubles every 6 dB, but that's not relevant here). I'm not sure where the "two to four" part comes from - granted, I haven't read the study, but hey, it's their cite. They want credibility, they can cite the whole statement, rather than just part.

But here's the thing: one, that doesn't mean that girls *perceive* sounds as being 2-4 times louder, just that the softest sounds they can hear are twice as quiet (on average) as the softest sounds that boys can hear. Two, that applies only to sounds at 4 kHz; I haven't seen any data on other frequencies (and they didn't make a more generic statement like "10-20 dB at frequencies from 250 Hz-8 kHz", which is the standard range measured). Not that said data doesn't exist, but if it does ... show me. Three, and this is a common problem with many "boys and girls learn differently" argument. The difference cited is a statistical one that is far smaller than individual variation. "Normal" hearing thresholds vary from 0-20 Hz. That already covers a 4x difference. And that is ignoring the huge number of individuals with hearing loss that puts them outside the range of normal, but is still undiagnosed.

Idjits.

2006-10-31T06:41:00.000-05:00

Candidate 1: You have a nice platform, but nobody knows it. Quit branding the other guy a rubber stamp (no pun intended) and campaign on the damn platform already!

Candidate 2: I have already voted absentee. Granted, you have no way of knowing that, but sending a recorded message to my phone twice in one hour at 10 in the evening is not a good way to gain or retain my support.

2006-10-30T01:38:00.000-05:00

I'm reading a book about Vipassana meditation - a form of Buddhist mediation - and the author is spending quite a bit of time defining his terms. Which makes sense; a lot of possible definitions for meditation are inaccurate (i.e., "MEDITATION GIVES US REAL ULTIMATE POWER. MONKS FLIP OUT AND KILL PEOPLE ALL THE TIME!"), and even the correct ones vary widely (i.e., Vipassana meditation is very different from other styles of meditation). I came across the following:

The second Zen approach used in the Rinzai school is that of tricking the mind out of conscious thought and into pure awareness. This is done by giving the student an unsolvable riddle which he must solve anyway, and by placing him in a horrendous training situation. Since he cannot flee from the pain of the situation, he must flee into a pure experience of the moment. There is nowhere else to go. Zen is tough. It is effective for many people, but it is really tough.

I think MIT was founded by a Zen Buddhist. It is effective, but ... well, as anyone who's tried to drink from a firehose can tell you, it is tough. MIT as a path to enlightenment ... hmm ...

2006-10-24T23:51:00.000-04:00

I found an excellent post about Disability-related campaign ads at Disability Studies/Temple U. The Thug Voter ad is particularly interesting.

2006-10-24T22:54:00.000-04:00

Yay [verbatim]: "You're going to call that variable x? But x doesn't mean anything. It's a bad variable name. I've been telling you that for the last twenty minutes. I'm going to squint at you kind of funny now."

Boo [paraphrase]: "We're going to put you on Monistat." Yes, put a cold thick ointment in my ear, which needs to be open (a) so I can hear and (b) so it can drain pus (when the fungus gets bad enough). Did I mention that it looked cold? "Oh, you mean you have a custom-formulated drug with an anti-fungal that insurance didn't cover? I forgot that. Yes, we can use that."