Comments on: Frustration

By: Sean

Sean — Sun, 15 Jul 2007 01:45:40 +0000

No need to remove it, just was curious to know how it related :)

By: Lucien

Lucien — Sun, 15 Jul 2007 01:01:26 +0000

It has to do with Ronald’s worry of appearing on a bad place, and my anger at what O’Reilly did. You can remove it if you want.

By: Sean

Sean — Sat, 14 Jul 2007 10:46:15 +0000

It’s an interesting segment and I think the kid “Jesse” showed O’Reilly up, which is always good. But… What the heck has that to do with BIID, transabled.org or disabilities????

By: Lucien

Lucien — Sat, 14 Jul 2007 06:28:50 +0000

Here’s the video of an interview with a couple students. (pay attention at the end :) )
Boulder High student Jesse Lange on O’Reilly Factor

By: Lucien

Lucien — Sat, 14 Jul 2007 06:11:56 +0000

Yeah, being outed to the world would be kinda weird and uncomfortable. As said earlier, I would be ok after it happened, but only to a small group. BTW, I can think of someplace worse to show up on: the O’Riley show (that recent comment he made really hurt).

By: Ronald

Ronald — Wed, 20 Jun 2007 23:39:53 +0000

I would love to participate in a study, to offer my own perspective on this condition. I would not feel comfortable in some sort of group therapy type environment though, it would have to absolutely 100 percent private and guaranteed. My biggest fear is being ‘outed’.

Further, I would have to be absolutely sure that any documentary would remain factual and to the point, not the mixture of news/entertainment offered on the idiot box as fact. Remember, “journalists” are not under any obligation to present facts, either in part or in whole. They are in the ratings business, and I cerainly would not want to end up participating in some Jerry “Springeresque”circus.

By: Sean

Sean — Sun, 17 Jun 2007 00:35:50 +0000

Thansk Mathilda. I’ll be curious to know what kind of answer you get from your disabled brothers and sisters. In my experience, some, like you, are quite ok and “get it”, while a majority seems to be against, mostly because they don’t get it, and a final minority is rabidly against, no matter what.

By: Mathilda

Mathilda — Sat, 16 Jun 2007 03:50:50 +0000

Man, this is a great post, Sean. As usual, I wish there was more for you guys and more understanding in general and now am openly discussing BIID with my disabled friends in a concerted effort to shift the focus from “They’re sick and we should be uniformly threatened by them” to a full view of the issues, concerns and feelings you guys face. I wish I made up more of the disabled community and could clone myself to make more of a difference there some days, but you all have my support, always. And you know, the idea that people have that doctors have a clue just because they are doctors frustrates me so much on so many levels. I agree. Hugs. If society didn’t tend to think the medical profession had all the answers, we’d get fewer comments of the “Why don’t you just. . .?” variety, as disabled people, as transabled people and as members of society in general.
It’s such a huge issue because it’s disempowering and entrenched. You do make a difference, though, Sean. Just by being the best philosopher king there is :)

By: Marie

Marie — Wed, 13 Jun 2007 20:00:42 +0000

I’d be hesitant to partake unless I could be completely anonymous.

By: Claire

Claire — Wed, 13 Jun 2007 18:08:45 +0000

Sophie, my comment wasn’t directed at you personally and I hope not to see dozens of responses about why each person can’t personally contribute. I’m talking to the *community* in general, and, as for the UCSD study, COME ON GUYS, IT’S IN CALIFORNIA. More transabled people probably live in California than just about anywhere else, not to mention a cheap flight ($69 one-way on Southwest!!) from centers such as Phoenix, Las Vegas, Denver, Seattle…etc etc.

Brice, I don’t believe that it’s necessary to understand a condition from an insider’s perspective in order to study it and find possible treatments for it. If you reject all forms of research because “they’ll never understand”, you’ll NEVER find a cure, especially not a surgical one.

By: Sophie

Sophie — Wed, 13 Jun 2007 14:28:42 +0000

There are problems with these studies. Since we are a minority from a population point of view it is challenging to get a decent amount of people able to physically turn up and participate in studies. I would have considered participating in that neurology study if I’d lived in the US. I didn’t hear about the psy in MO so how was I going to respond?

I try my best. I’m “stuck” in NZ, a tiny set of islands half a world away from most of the world’s populations. I often feel like my hands are tied and no matter how much I want to push the biid thing forward it doesn’t happen. I have emailed people etc indicating that I wanted to help them with studies, they often ended up not happening. And then there are people wanting to do documentaries etc but then not willing to understand the risk people take exposing themselves.

Shall I continue?

By: Brice

Brice — Wed, 13 Jun 2007 14:25:19 +0000

I have an apparently incurable emotional condition that requires use of a wheelchair. I’m not happy, don’t feel “well” when I have to use my legs. Let the professionals take that or leave it. I don’t think anyone can understand BIID who hasn’t lived it.

By: Claire

Claire — Wed, 13 Jun 2007 13:05:08 +0000

You know what else frustrates me even more than that? When there ARE studies on BIID, nobody participates. A well-known neurologist at the UCSD Center for Brain and Cognition conducts a study on BIID, right there in densely-populated Southern California, and the ONE person who responds, the ONE person who takes part, is someone from the opposite side of the continent (ME!!). Other studies are done via questionnaire and e-mail - announced on lists that have hundreds or thousands of memebers, and they end up with 15 respondents. A psy in Missouri wants to host a conference on BIID, with guest lecturers to discuss everything from current treatment options to medical ethics of future treatment options, and of the thousands of people on the list where this information was posted, two people indicated interest in attending (I was one of them). Of course there is no treatment available. Very few people with BIID are talking to the people who are interested in helping. WAKE UP, YOU GUYS!!!