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There might be a show, there might not. I will post beforehand if there is definitely going to be one. Hopefully!

Also, if there IS a show, it will be before my usual slot.

Lots of stuff to talk about, hopefully I can make it work!

KMRL home

42nd Crossroads is hosted by the super awesome Tree, and it delivers rich, ballsy blues and classic rock. Good music and good vibes, and it kicks ass in the chat during his show.

42nd crossroads is a bi-weekly show, 1st and 3rd Wednesdays, 8-10 P.M. ET, right before Hear Kitty Kitty Radio!

Tune in!

Disability Rag articles:
“Jerry’s Orphans and the Telethon: Disability Rag Classics”

Crip Commentary by Laura Hershey  — WEBSITE devoted to disability issues, has full section on why so many protest the telethon…

While it’s been met with great public acclaim, I see it as a blatant reminder of the lack of support for families like Ashley’s.

I can sort of understand the hysterectomy to prevent menstruation - but all the others, no no no.

I understand Ashley’s parents’ wanting to be her only caregivers - but that is unfair on both the parents and Ashley. Ashley deserves to have a full life and be included in the community, and her parents deserve to love Ashley, but not be her vital life support.

A watchdog organisation has found the surgery illegal, and the hospital has acknowledged that they performed the surgery illegally.

In all honesty - I do not condemn the parents. They were misguided by physicians and the ethics committee, which was driven by profit and money. If, instead, they had contacted a centre for independent living, a branch of United Cerebral Palsy, they could have gotten the right support - and not feel so alone, and get assistance for when Ashley would have gotten bigger.

If anything, Ashley’s nickname — “Pillow Angel” — personifies how people with severe disabilities are viewed by society: incapable of making a worthwhile contribution to society, and not worthy of the resources appropriate for inclusion.

Now, don’t get me wrong, I’m not saying that Ashley is destined to become the next Eleanor Roosevelt or anything like that, but her life does have value and if anything, she can contribute the idea that people with severe disabilities have the right to inclusion and can live full lives regardless of abilities - or lack thereof.

I don’t want a cure for my Cerebral Palsy.

Of course I’d be for prevention - C.P. is mainly caused by dangerous stuff, kids.

But I don’t want to be able bodied. I don’t. I’d be totally different. Where would all my lessons be? Lessons I learned quickly, like:

- It’s OK if you can’t run that fast - everyone has limits
- If you look odd in the eyes of society because of something you can’t control, screw it. Tolerance for other people is important and I can’t control when my clonus happens or where my left eye rolls. If people are actually going to not talk to me just because of that, because of how I look—the ways I can’t control—they aren’t worth conversing with, anyway.
- Acceptance of different methods of communication. Too often, speaking is seen as the only way. There are communication boards, sign language, picture libraries, etc.
- Tolerance of others: economic status, physical abilities, cognitive abilities, etc.

Yes, able bodied people learn this, too, but I learned this pretty fast when I was the object of kid’s jeering or staring. Some people say that a disabled person who wants a cure because people are teasing them is a good idea/justifiable, but I don’t think so. Tolerance is extremely important, and we all have some physical limitation. Without disabled lives, there would be significantly less teaching about tolerance for those with different abilities. Oh, and by the way, anyone that teases someone should be made to read Moby Dick in one sitting.

While on the other hand, I do support research for a cure and stem cells.

For people with Usher Syndrome, they are born deaf and eventually become blind due to retinitis pigmentosa. They almost always want their vision back; I want the vision I lost back as well. However, I know what it’s like to see out of two eyes.

To equate the same conundrum of a person previously able bodied getting a disability, and a disabled person since birth, is not fair. This is all I know. I don’t understand able bodied quirks and I have alternatives for everything. This is all I know. It’s futile trying to make me understand that I would be better without C.P., because I don’t know. Nor can you make a judgment because you don’t have C.P. This is where the tolerance thing comes in.

A doctor is not necessarily a disabled person. They have studied it, but not lived it (you get my idea, I know disabled doctors—my favourite rehab doctor has C.P.). Don’t run to a doctor that’s able bodied and expect to get an accurate assessment of quality of life of a disabled individual, because they’re able bodied and don’t know.

That’s OK. I just expect them, and the rest of the able bodied community, to accept my own assessment of my quality of life and provide treatment for everything.

But wait - what if someone doesn’t think their quality of life is good?

Then they’re probably depressed. Under the Americans with Disabilities Act of 1990, disabled people are entitled to the same treatment—and the same right to refuse it—for depression.
If not, it’s worth asking if all symptoms are being controlled properly. I have a nerve injury that’s extremely painful. But, with pain management medications (all of which are over 500 dollars a month combined), I have a good quality of life.

And for G-d’s sakes, don’t piss on medical weed. If it helps manage the symptom, let them use it.

Rarely, when a person feels their quality of life is low, is it actually about the disability itself—but more about social factors. Teasing, feeling like you’re the only one, feeling a burden, etc.—those are disability issues and many can be resolved by becoming actively involved with other disabled people.

This is why I don’t support the MDA (Muscular Dystrophy Association), and do support United Cerebral Palsy. UCP aims more to help make sure that proper access is ensured, that tools and things manage the symptoms, etc.—rather than “fixing” it. Because a large portion of people in UCP have C.P., so they know life as a person with C.P. isn’t bad.

Not like I’m saying ditch cures—but it’s worth examining what’s the real problem. Spasms? Muscle relaxants, botox, baclofen pump. Teasing? The attitudes of the kids. Muscular Dystrophy is eventually fatal and at that point, can’t be managed—that’s why I support cures for people who want them.

Because remember, I’m going to get my vision back. Legally blind now, but with a way…I will get it back. But for now, let’s talk about my main fears of going blind: being locked in the dark with no support. Well, duh, there’s a rehab centre for the blind in Cincinnati. Driving? Public transportation (and if you wouldn’t ride it, improve it). Not looking “normal…” just an attitude all teenagers have.

So remember - think positively about disabled people’s quality of life. Because really, it’s not all that bad. ]]> http://cynicalgimp.com/2007/05/26/what-was-that/feed/ http://cynicalgimp.com/2007/05/23/update-on-the-show/ http://cynicalgimp.com/2007/05/23/update-on-the-show/#comments Wed, 23 May 2007 21:48:13 +0000 Cynical Gimp Gimp's Gripes: The Show http://cynicalgimp.com/2007/05/23/update-on-the-show/ No, I haven’t died — just give me 8 days, lovelies, until school’s out. I’ve been studying like crazy for finals and doing lots of work for class.

See you June 1st!

http://www.cynicalgimp.com/Shows/

Webmasters: Please do not link to the individual sound files. Instead, a link to http://www.cynicalgimp.com/Shows/ would be appreciated instead, saving in both bandwidth and cost to the site.

Fans / Listeners: You will need the free RealPlayer to listen to the files, as MP3s are too big to host here, and would cost quite a bit to host and stream. Please do not download the files — they will eventually be removed and I don’t want my voice all over the place. Smile.

Might go on tomorrow around 5 P.M. ET or so, watch the On Air image!

The common view in the disability community is that we don’t need a cure.

I believe that crips like these that oppose the cure are not actually opposed to the cure, per se, but are opposed to the following ideas:

1. That being disabled is the worst thing on earth, the worst that you could wish on someone.
2. That, if cured, our community - and some call it a culture, but I don’t support that - will vanish if a cure is found, and people will be pressured to take cures to alleviate health care costs.

I despise the “better dead than disabled” movement and I love the crip community. If suddenly, everyone - and I mean everyone - disabled took a pill and woke up able bodied, I’d probably mourn the loss of a community that really feels like a family, but at the same time, I would question why having a disability suddenly means there’s a need to hold hands and chant with other disabled people.

Basically, my issue with anti-cure people and those that boast we have a culture are the depth of their relationships with other disabled people — i.e., they must have something in common other than their disability, stories of oppression, surgeries, adaptations, tools, etc. The other issue I have with anti-cure people is that there are some disabled people who are involved in the community that want a cure. Is this so wrong?

On the other hand, I don’t like the “they are suffering so they should be cured” rhetoric of the curists. Most, if not all, of these people are not disabled nor have they had first-hand experience with pain management - or something that can make a disability less sucky.

Most disabled people in the disability community have been disabled since birth, so we haven’t known any other life except the disability experience. I, on behalf of other people who share the same attitude as I - don’t understand this urge to cure cripples. That being said, I want a cure and regeneration for my vision/glaucoma and nerve injury, because I am extremely visual, and nerve injuries suck. If I went blind, however, of course, I would probably throw a pity party, but I would adapt. In essence, the very nature of being disabled mandates that a person be flexible and willing to adapt. Sounds good, huh?

What’s my “cure” for the disability problem?

1. Improve social attitudes about disability. No need to fear us cripples, no need to fear joining us.
2. In improving social attitudes about disability, consequently, there will be an improvement in access to health care, housing, personal assistants, etc.
3. Because, as the Cynical Gimp, I recognise disability can be a pain in the ass because of the disability itself - e.g., diabetes can be life threatening and unstable; cancer just sucks overall; glaucoma is a pain in the ass because of its instability, teasing nature, and aggression. Therefore, I endorse cures.

The reader’s digest version - improve access and attitudes first, and then we can talk about a medical cure.

Who knows, maybe with the right attitudes, and maybe with the most access, we won’t need to spend thousands of dollars researching and acquiring a cure?