Archive for the ‘disability’ Category

And the hits just keep on coming! (32/49)

July 26, 2009

Kelly wants to know:

What is the one thing you wish sighted people knew?

Well, it’s after midnight, and I’m a bit punchy, so for me, I’d say that I wish they knew that they care a lot more about my blindness than I do. I do not want to talk about it all the time. I do not know every other blind person (despite the fact that I currently have 3 of them in my house). My life is not significantly different, and certainly not significantly worse, because of my blindness. And while I have nothing personal against sighted people, 90% of the problems caused by my blindness are because of other people. And they’re usually not blind. So, um, yeah.

What is your favorite Boston memory?

I….um…..I do believe I’ve been stuck speechless. Because I love Bosotn, and I can’t imagine narrowing it down to one. Can I think about it?

Post #: 32/49
Total so far: $1272.34
Make that total higher! Donate to the Guide Dog Foundation for the Blind, Inc.

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Happy birthday, ADA! (31/49)

July 26, 2009

It’s midnight, July 26, and the Americans with Disabilities Act is now nineteen years old. That’s right, it’s old enough to fight and die for its country, vote, go to college, and buy porn, but it’s apparently not old enough for most businesses to remember it in any sort of useful way. Because you know if they “didn’t know” about as many of, say, the health codes as they do about the specifics of the ADA, they’d all be out of business by now.

For all its faults (since when can civil rights pose an “undue burden”?), I’m really glad it’s here. The summer it was passed, I was almost rejected for a camp counselor position because the person interviewing me didn’t believe blind people could watch kids. (Some blind people even reproduce!) Fortunately, she quit, and someone else hired me instead. And from then on, I had to work for a living. Wait, maybe that’s not as good as it sounds…

So happy birthday, ADA. Don’t let the bastards keep you down.

Post #: 31/49
Total so far: $1272.34
Make that total higher! Donate to the Guide Dog Foundation for the Blind, Inc.

More answers! (but not more cowbell) (13/49)

July 25, 2009

Our faithful Scribble has commented with more questions, and since I’ve always got an opinion, I’m happy to spout off on this one too!

How did you become blind? Or is ‘visually-impaired’ a better word to use? How do you feel about the PC-ification of our language?

I have a form of albinism, and it’s genetic. It’s recessive, but no one knows of any history of it in my family (or, rather, on Mom’s side – the research wasn’t quite as thorough on Dad’s). So either it goes back a long way, or I’m a mutant. Yay!

There are several types of albinism, including some that just affect the eyes, particularly the retinas. So you can’t necessarily tell by looking at me. There are other effects of the albinism. For example, most people with albinism have nystagmus, or involuntary movement of the eyes. Mine go back and forth. I’m also very light-sensitive, again as a result of the albinism. I also have strabismus in one eye; my left eye turns inward slightly, which means the acuity in that eye is worse. Plus I have all the normal stuff like myopia and astigmatism and all that.

I’m of two minds about “visually impaired”. I’m a high partial; I’m pretty blind for a sighted person, and pretty sighted for a blind person. Legal blindness is actually a fairly broad spectrum, and includes issues with field of vision, acuity, etc. Most blind people aren’t totally blind without any light perception or anything, although quite a few are. So if I’m describing myself in a way that emphasizes that I do have some usable vision, I use “visually impaired”, because I’m not totally blind. But if I’m just making a general statement about myself, “blind” is fine. That’s just me, though. A lot of people hate euphemistic terms, as do I, and consider “visually impaired” to be among them. I hate stuff like “sight challenged” (what?) and all that. And I’d never used “visually impaired” to describe a totally blind person, because their vision isn’t ust impaired, it’s nonexistent. But each person has their own preferences. If I’m talking about people in general, I talk about people who are blind or have low vision, and it works for me. Frankly, I have very little patience for sugar-coating things, because I don’t think blindness (or disability) is an evil thing that needs to be sugarcoated to make it more palatable. It just is what it is.

A little kid called me “hard of seeing” the other day, and I thought it was adorable, but I’d find it a bit less adorable from an adult.

Hope that didn’t confuse things further!

Post #: 13/49
Total so far: $945.34
Make that total higher! Donate to the Guide Dog Foundation for the Blind, Inc.

Unclear on the concept

December 8, 2008

I like people in general, but sometimes they’re a little dumb. For example, the other day I was at the gym, being decidedly not-buff, and of course Ms. Pup was with me. I sat down at the shoulder-stretcher (or whatever it’s called), all ready to dislocate my upper torso in the name of better health, and she plopped down next to me, as she is wont to do. Immediately, this guy wanders up and starts petting her. I clearly need a better opening salvo, because, “She’s working,” only works about half the time at getting people to leave the dog alone. This occasion fell into the other half.

“She’s working.”
“Oh, are you training her?”
“No, she’s trained.”
“And she’s yours?”
“Yes, she’s mine.”
“So she’s working right now?”
“Yes, she is.”
“So what’s her job, what does she do?”
“She’s a guide dog.”
“For you?”
“Yes. So please stop petting her.”
“…..oh.”

But the petty little examples of, “Huh?” in my life don’t hold a candle to the gem that found its way into my inbox this week. In the famous words of Dave Barry, I am not making this up.

A gun manufacturer is trying to get a gun approved by the FDA as a medical device – and covered by Medicare.

Seriously. Note that this gun is not yet in production. It is a theoretical gun. (I guess that’s the safest kind). And it is theoretically designed for easy use by elderly folks and people with disabilities. And because it is specifically for elderly folks and people with disabilities, it must be a medical device! Of course! So let’s get it approved by the FDA! Even though it’s, y’know, a GUN. Or rather it would be, if it existed yet.

In order to get it to exist, the manufacturer needs money. So this theoretical gun is being sold for real money, on the premise that it’s been approved by the FDA as a medical device, and that for its next trick, it will become reimbursable by Medicare.

The FDA itself is skeptical, at best. They say that what they sent the manufacturer was no approval notice; it was simply a confirmation that they’d received a registration. And Medicare reimbursement? For a gun? People have enough trouble getting new wheelchairs! And you’ll notice that the wheelchair hasn’t exactly needed a campaign to convince folks that they don’t kill people, lately?

I have no problem with the existence of adapted guns, at least no more than I do with the existence of any other kind of gun. If people without disabilities get to run around with deadly weapons, then hey, people with disabilities should be able to run around with deadly weapons too. (And in fact we do particpate in sport shooting; paralyzed riflemen and women use sip-and-puff mechanisms, among other things, to shoot rifles competitively in the National Veterans Wheelchair Games). I have a huge problem with the concept of a gun as a medical device, much less one approved and reimbursed by the government. I’m also not thrilled that anything used by people with disabilities is automatically viewed as a medical device. By that logic, my computer, my TV, and my sofa are also medical devices. Except less dangerous.

Although Ms. Pup is a designated medical device according to the folks who administer my flexible healthcare spending account. I’ll admit that I don’t complain much about that. But guide dog versus gun – sorry, no contest there. Also, my dog actually exists. I know, because she ate the middle finger out of my glove this evening while I was having dinner.

War – what is it good for?

November 12, 2008

I still have a few minutes left of Veterans Day, Armistice Day, Rememberance Day, or whatever you call it in your neck of the woods. My thanks and good wishes go out to all our troops here and abroad, and to all those who have been injured defending us. I hope that all appreciate your sacrifices, and that you are able to get what you need when you need it.

People with disabilities have an interesting relationship with war and the military. One obvious reason is that war tends to make a lot more of us, especially as medical technology has improved. German veterans blinded in World War I began using guide dogs in the 1920s. World War II sparked the American disability rights movement in a lot of ways; people who earlier in history would have died of their injuries survived, returned home, and attempted to rebuild their lives. They had medical, housing, occupational and financial needs, among others. They needed rehabilitating, which hadn’t really been an issue back when nearly everyone who was injured at all severely died. Society had to start addressing – or willfully not addressing – where people would live, how they would have access to buildings, how they would support themselves or be supported, what assistive technology needed to be created and how it would be distributed, and plenty of other huge elephants in the proverbial living room.

The National Council for Homeless Veterans estimates that in the US, one-third of all homeless men are veterans, and almost 400,000 veterans will be homeless over a given year. That’s awful enough on its own, but as it turns out, many of these veterans are on the street because of post-traumatic stress disorder (PTSD) and other psychological disabilities, as well as substance abuse problems (which often start out as coping mechanisms for the PTSD). Lots of them have other kinds of war-related disabilities as well. They’re on the streets because, despite the best efforts of the VA (about which I’m sure folks have plenty of opinions), not everyone is getting or able to get services. About nine out of every ten homeless vets received honorable discharges. They’re still alive, yes, but they really have sacrificed everything for their country. We spend a lot of money getting people into this predicament, and the honorable thing to do is to make sure we take care of them afterwards with comprehensive and compassionate community-based supports.

Several service animal organizations, remembering their roots, focus special attention on newly-disabled veterans returning from war. Guide Dog Foundation for the Blind, Inc. has created the VetDogs program to provide guide and service dogs for wounded soldiers returning from Iraq, as well as therapy and assistance dogs for military hospitals and rehab centers. They have even sent several therapy dogs to Iraq to work with the troops there. Canine Companions for Independence has a Wounded Veteran Initiative, and NEADS, Inc. provides Canines for Combat Veterans.

Assistive technology often has its beginnings in military-funded research. For one thing, the Department of Defense would like to keep its troops as healthy and functioning as possible for obvious reasons, and if they break you, they’ve got an interest in “fixing” you to whatever degree they can. For another thing, a lot of assistive technology has multiple purposes. Sure, there’s research being done right now on computers that can be controlled with brain waves, and those findings are of great interests to paralyzed vets and non-vets alike. But gosh, wouldn’t it be awfully handy for soldiers to be able to control equipment, weapons, whatever, in ways that are undetectable to anyone who isn’t, well, a mind-reader? Speech synthesizers are an everyday necessity for many blind folks, but they also make it a lot easier to get information from a computer while driving a vehicle, piloting an airplane, or sailing a ship. Not all military-funded disability research is related to assistive technology, though. I can’t find the relevant link right now (and it’s making me nuts, I tell you), but notices of DOD-funded grants for research on autism, of all things, have come across my desk a few times. If I speculate as to why, I’ll probably wind up having nasty dreams and everyone will comment that I’ve been readng too many sci-fi novels, so I won’t. (And if you have a reasonable explanation for this odd pairing of funding source and research topic, please do tell me).

Even the world of athletes with disabilities owes some of its organization to war and the military. Many wheelchair sports leagues recruit players from military hospitals and rehab units. The Paralyzed Veterans of America hold the National Veterans Wheelchair Games every year. And damned if some rather war-torn countries didn’t manage to send quite a few athletes to the Paralympic Games in Beijing this year. I saw Iraqis, Palestinians, and Afghans, among others competing for the gold, many with spinal cord injuries or missing limbs.

In many ways, war put people with disabilities where we are today. Sometimes it causes our ranks to grow, sometimes it sends its survivors falling through gaps and cracks in our society, and sometimes it’s the catalyst for the activism, technology and services that can give us freedom and independence.

Aftermath

November 10, 2008

You don’t need me to tell you that it was a hell of an election.

Literally thousands of blogs have covered the election results. Unless you’re in a few select states with very close races, you already know how things came out. Heck, some of us (ahem) were up way too late dancing in the streets on Tuesday night because of how things came out. I wasn’t nearly so cheerful earlier in the day, though, when I tried to vote. I eventually succeeded, despite the best efforts of the local poll workers.

My polling place had no line at all, since I went just after the morning rush. I asked for and was escorted to the accessible voting machine, as I’m fortunate enough to live in a city that boasts one at every polling place. I put on the headphones, cranked up the large print and high contrast, and was cheerfully instructed to insert my ballot. But where? I felt all over the machine and found a likely slot, but it wouldn’t accept the ballot. I couldn’t find any other slot. I’ll admit that I’m not the most mechanically inclined person on the planet, so after a few minutes of waving my hand and calling for help, I caught the attention of a fellow voter who flagged down a poll worker for me. The lady came over and read the instructions over my shoulder.

“‘Insert ballot.’ Okay, go ahead and insert the ballot.”
I’d gotten that far. “Where?”

She couldn’t figure out where it went either. After she’d tried several times, I asked her if she’d been trained on these machines. I’d been assured previously by the city that all poll workers had been trained on the accessible machines. “Oh, sure,” she replied, “I just didn’t pay attention to that part.”

After pointing out that these machines were the only way some people could vote and getting a similarly unconcerned response, I decided that this woman had forfeited all rights to politeness. I’m not sure what exactly I said to her, but I was pretty proud of myself for refraining from swearing. Her compatriots seemed equally unhelpful and equally unrepentant. It took three or four people and probably twenty minutes before they brought over the head of the precinct, who ascertained that the machine hadn’t been set up properly, and the insertion slot wasn’t actually open. After that, it took me five minutes to vote and get out of there, including sneaking an extra I VOTED sticker for my guide dog, who had been very patient. At least the bake sale taking place outside the door was fantastic. Other than that, I was pretty disgusted.

I asked around for feedback from other voters, and I received a variety of answers. Some voters talked about crowded polling places with no room for folks with wheelchairs and other mobility aids to maneuver and no privacy for the accessible voting booths and machines. In some places, the lines to vote snaked down the entrance ramps, blocking access for voters using wheelchairs or scooters. One blind voter from the South said that there wasn’t an accessible voting machine in her entire county. On the other hand, I also heard about polling places that had a staff person entirely devoted to staffing and assisting with the accessible voting booth and machine. So while we still have miles to go, some places are doing the right thing.

If you’ve got stories you’d like to share, please send them in. History was made this week, and I want to know if you were able to be a part of it, no matter how you voted.

Gimp the vote!

November 3, 2008

First of all, I’m really interested to hear about people’s voting experiences, particularly around disability access issues, so please feel free to drop me a comment and let me know how things went in your neck of the woods.  Rumor has it that my fair city has an accessible voting machine at every polling place, and I’m hoping that the poll workers (whose work I appreciate greatly, in all seriousness) are willing to, say, plug them in.

Second, my dear friend J. has helpfully put up this page full of useful links for voters with disabilities, with an emphasis on Massachusetts voters.  The Disability Law Center of Massachusetts will also be open and taking calls from Massachusetts voters with disabilities with questions or complaints about access  to voting.   They can be reached by phone at (800) 872-9992 or by TTY at (800) 381-0577.  Here’s hoping you don’t need them.

Third, United Cerebral Palsy, aka UCP, is using the microblogging site Twitter to track where people with disabilities are and are not having access issues at the polls.  If you use or are interested in using Twitter, they’ve provided instructions for participating; if you don’t, they’ll tell you how to keep an eye on things via their blog and other non-Twitter sites.

Fourth, if you are eligible to vote in the US and you have not yet voted (this early voting thing is all trendy all of a sudden, eh?), please do so.  Not only is it your right as a citizen, but so many people are still being denied the right to an independent, anonymous vote that it’s really an insult to them to eschew your opportunity if you have one.  I’m not in the habit of playing more-oppressed-than-thou – frankly, we’re all in this together – but if anyone else experienced the regular and rampant violation of voting rights that happens to people with disabilities as a matter of course, there’d be riots in the streets.  I’m not saying that these things don’t happen to anyone else.  I’m saying that they happen all the time to us, and it’s not on the radar at all.

On that cheerful note, go forth and vote.  And if you’re in Massachusetts, please, please consider voting against Proposition 1.  Eliminating the state income tax would pretty much end any public services for people with disabilities in our fair commonwealth, not to mention elder services, lots of educational and health care programs, and thousands of jobs.  Voting for Proposition 1 will not make a statement, it will bite off our nose to spite our face.  This seems to me like a dumb idea.  So please don’t.

Thanks, and happy Election Day!  Don’t forget to chime in on how yours went!  I’ll be voting before work tomorrow, and gnawing my arm off in front of the TV with friends and loved ones after work.

And you may ask yourself, how did I get here?

October 27, 2008

I’ve been tossing around the idea of starting up a disability issues blog for a couple of years now.  I don’t have any particular insight outside of my own personal and professional experience (and this is definitely not a work blog), but I’ve noticed that these issues aren’t always on the radar in the first place.  Sometimes people without disabilities just haven’t heard about the realities of the experiences of people with disabilities.  Furthermore, sometimes people with disabilities, myself included, don’t know much about the experiences of people with disabilities other than their own.  I can only represent my own life, but I hope to learn about what’s happening with other people as well.  And when I really have no idea of what the heck I’m talking about but know someone who does, I’ll bring in the occasional guest blogger to cover particular topics of interest.

I’m happy to get (constructive) comments, although I reserve the right to mock spam mercilessly.  I certainly don’t expect that everyone will agree with my views, but I’m excited to have a place to put them.

In conclusion, welcome, enjoy, and hi Mom!