Blog > Thoughts > Sean's Thoughts > Writing A BIID Article
Writing A BIID Article
Written by Sean on Saturday, January 24, 2009
I try and get my hands on as much of the newly published literature discussing Body Integrity Identity Disorder. I don’t think I manage to catch everything, but still, I get to read a majority of things. Over the years, I’ve been thinking there were a few things I’d like to see said, but haven’t seen in any of the literature. So I wrote my own!
The writing process went relatively quickly. I pretty much knew what I wanted to say. Having read and re-read most of what’s out there already, I also knew what I wanted to cite and where to find it. I guess in many ways it was already written, in the back of my head. Putting it together still took a few days. There’s a difference between knowing what you want to say and actually wording each sentence.
I’m discussing the fact that in general quality of life with a disability is well underestimated, and that the medical community is guilty of this misperception. I suggest that this misperception is probably a major factor in the refusal to offer surgery.
But even though I was told it was a good piece by a couple people, one of the reviewer made extensive comments that mean I’ll be doing an extensive re-write. Constructive criticism is always welcome and valued.
So I’ll be re-writing, focusing the arguments. After my head has settled back, because right now getting dressed in the morning is challenge enough (no Sean, the head does not fit through the SMALL holes in your shirt).
Then will begin the difficult part – finding a publisher for it. I am hoping to get it published in a recognised journal so it has a chance of being seen and used in the future. We’ll see.
I’ll keep you up to date :)
If you were to write an article, what are the main points you would like to cover? Or if you’ve been reading academic journals, what do you think is missing? What do you think is well done?
Tags: Ableism, Academic, BIID, Disability, Discrimination, Medical Community, Paper
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12 Comments
Sean; Where do you find articles and new information on BIID? I have been looking for it on the net, and there does not seem to be anything that was not already available around 1999. There are a few magazine and newspaper stories, but they are mostly opinionated crap.
I think a piece on BIID must stress that a) This is not some sort of fetish that has been blown out of proportion b) A very thick line needs to be drawn between BIID and the devotee stuff c) there is little or no knowlege of this in the medical community. d) this is a very real, very troubling condition for all who have BIID e) while there is a parallel with gender identity issues, do not dwell on that as that seems to be what triggers a negative reaction from most. There should not be an implication that we are merely trying to hop onto the transgender bandwagon so we can get ourselves the “protected minority status” f) I hate this one, but if you do not have BIID you do not know what it is like. g) this is not piercing, tatooing, plastic surgery, vanity driven, nor are we twisted exibitionists and attention seekers.
Ronald you’ve more or less summed up waht I would have said. The only new stuff I can find is just a repetition of the basics. I’d like to be directed to more new academic studies/articles if there is any.
Sean I’d love to read your article, if you’ll let me!
I have a good friend with multiple sclerosis, and a good friend who had polio. I have had lengthy discussions with both of them regarding the “what if” scenario. They are both quite emphatic that they would not trade their lives for a life of being able bodied. It seems that a lot of ABs just make the assumption that life with disability is awful without actually asking PWDs what *they* think about it.
And Sean, the small holes are for your legs.
5 On 24 January, 2009, Sean said:
Ronald, you could start looking at http://biid-info.org that lists a majority of the research (I’m missing a few papers I know, I have them, just ahven’t gotten around to analyse them). Or use Google Scholar, and search terms such as “apotemnophilia”, or “amputee by choice”, or BIID, or “body integrity identity disorder”, or “transableism”. There is quite a bit published post 2000.
6 On 24 January, 2009, Sean said:
Ya, I’ll let you and others read it, once I’ve done a re-write, which may take a while. right now I’m in survival mode, one breath after the next. I’m not doing good at all.
8 On 24 January, 2009, Sean said:
Hanging’s not unappealing
Ha ha! Yeah, I almost wrote a similar comment ;) But I decided against it.
My father was fond of saying that you can get used to hanging if you do it long enough. No one to my knowledge has lived to tell that tale. Anyhow, Sean, survive whatever it takes, we need you.
Re whether I’d rather live without my disability (BIID), I really can’t imagine who I’d be without it, I can’t recall a time that it wasn’t with me.
11 On 24 January, 2009, Sean said:
@ Brice, yeah, I get that, y’all need me. I’m not PLANNING on going anywhere. At the same time, I’m weary, tired, exhausted, at the end of a shortening rope. The people I’ve needed (surgeons, etc) haven’t been there for me. Haven’t been there for us.
12 On 24 January, 2009, Sophie said:
Brice your echoing a feeling a lot of us have. I can’t imagine who I would be or where I would be without my BIID. I definately wouldn’t have all my friends here and I would never have met Sean.
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1 On 24 January, 2009, Ada said:
Every person I know personally who has aquired a disability has remarked in some manner that it has caused them down a different path than if they had not become disabled. Different opportunities presented themselves and their lives are fuller and richer because of it.
The individuals with congenitial disabilites have a different perspective because they only know that life.
Who hasn’t heard “I’d rather be dead than disabled” and yet there are people that would rather be dead than Not disabled.
It’s unfortunate that people, especially medical professionals, project their own fears on others.
Becoming blind is my worst fear. However, I know blind people with rich, full, happy lives. My fear doesn’t alter my peception of anothers quality of life.