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Talking about BIID
Written by Sean on Friday, December 14, 2007
I had an interesting chat the other day with a gal with a disability. We’ve been discussing Body Integrity Identity Disorder on and off for the last several weeks. Yesterday she told me that I’d "mostly" won her over. I asked what more I needed to do to convince her, and also how I had managed to win her.
I found it interesting that she said that my disability rights activism was a major part of what won her over. I am indeed an advocate for disabilities. It’s part of who and what I am, part of what I do. But not necessarily (just) because I have BIID. It is in my blood to be an activist, it just so happens that disability rights is a cause that I feel close to. But not all transabled folks have that activist’s streak in them. In fact, a majority of people don’t. Most people I know with BIID have no relationship to the disability community, much less engaging as advocates for disability rights. There is one I know who is now raising awareness about (the lack of) accessibility in her town, but that’s it!!!
So there are many questions I could ask this gal with a disability. Is she now open to BIID in all people, or just in me? Had she met someone else that wasn’t so active in disability rights first, would she have come to accept BIID in the same way? What parts of BIID has she not come to terms with? How could I help her come the rest of the way? Could someone *else* help her with that? What if her only knowledge of BIID came from reading news articles?
This raises interesting issues, actually, if one wants to make BIID better accepted in society at large, and in the disability world in particular. Is acceptance only about the condition itself, or is it about the person who introduces the idea? The old adage "the medium is the message" may be true here, the messenger imparts as much information, if not more, than the message itself. But then even with the "right" messengers (whomever they are), the only way to transmit the right message is to have a lot of one-on-one interactions. Get people to know us. With knowledge, fears tend to wane. We have no hope at all to reach everyone if only a few transabled individuals are the "right" messengers.
But as we’ve seen time and again, using the media tends to distort our message. Journalists, and even more neutral writers for publications such as Scientific American Mind rarely depict an accurate or complete image of what BIID is. A lot of them are under pressure to sell copies, and what sells is scandal and sensationalism.
There have been recent suggestions in a Yahoo! group that the only way to advance "the cause" would be to get back in the closet and ignore journalists. But the proverbial cat is out of the no less proverbial bag. With articles in several newspapers and magazines, more and more people are becoming aware of BIID. I don’t believe that going back in the closet and ignoring the press is possible at all. And if they are going to talk about us, we have to be prepared and figure out the best way to interact with them so they get as much out of it as possible, and more importantly, so they convey what we want them to convey.
But this gets us back to who is the best messenger to discuss BIID, who is the most effective. What do we need to say, and how do we need to say it? Are our actions outside of BIID related discussions having an impact on the acceptance of BIID? How can we measure that and adjust our aim when we see the message isn’t getting across properly? What noise do we need to eliminate in the communication loop to be really effective? Can we even eliminate some of that noise?
I don’t know the answers to these questions. I’m just one guy, doing what he can to further the cause of BIID. And the cause of disability rights. Because in the end, I think they are one and the same
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5 Comments
I think one measure of our openness to become authentic BIID messengers is our willingness to accept and understand that BIID is an impairment in itself that causes us to need a particular physical impairment. By no means do all people with impairments accept the fact of impairment, case in point being the many post-polios who have wrecked what remained intact of their bodies with a lifetime of trying to be as “normal” as possible. Not to blame them, most of them were perfectly healthy kids when the nightmare started, just stating a fact that I have observed among family, friends and professional acquaintances. Although I do not hold myself out as a political activist, I am sometimes in a position to make good things happen in practice, mostly in architectural adaptation but sometimes in single-case advocacy. One post-polio in Latin America credits me with his ability to walk (with crutches) farther than from one end of his house to the other, to drive a car, to do some other things he named in my presence about ten years ago that I have now forgotten, all because I stood on a few well-chosen desks thirty-some years ago. We’ve all got our gifts to share in the way that life puts before us, but the first step is acceptance of ourselves as people with a real impairment, however nutso or “fake” the necessary expression of them may appear to the unenlightened. My two cents.
Forget about the media playing any positive role. There function is to simply attract and hold the publics attention long enought so the attention will be paid to the adds.
Watch the coverage of a gay pride activity. If the event is big enough, the medial always focuses on most ridiculous, outlandish or stereotypical example of public lewdness and makes that the lead image. Then, of course, they scream “intollerance” from their headlines the next day.
The media will have a field day with this, then of course drag out all it’s “experts” on the matter. The impression the messenger makes will be of little consequence, unless of course the image will sell newspapers.
4 On 19 December, 2007, Claire said:
the first step is acceptance of ourselves as people with a real impairment, however nutso or “fake” the necessary expression of them may appear to the unenlightened
Thanks Brice. That was definitely worth more than two cents. I am working on this and find it very difficult, but I wholeheartedly share your assessment.
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1 On 15 December, 2007, Kyla said:
Something that i have seen regarding the concept of ‘the right messenger’ is that when a person who has a lifestyle, personality trait, or other condition placing them outside of the ‘mainstream’, delivers the message, it is too frequently lost, as society points the finger at these other traits, to dismiss the person as unreliable or just plain crazy. In order to be considered a valid messenger, one needs to completely toe the party line of mainstream society in every conceivable way other than the specific issue in question.
This can even be seen in treatment for other conditions. For example, if a transgendered person mentions having a BIID condition, that can be a disqualifier from treatment for the transgendered condition.
Messages suggesting a change in perspective on social issues only seem to be taken seriously when they come from someone who appears to be completely within the mainstream - with the exception of a single issue of deviation. With an additional point of difference, society will dismiss the messenger as ’someone who believes in ‘ - and therefore can be dismissed as unworthy of consideration.