Home / Thoughts / Sean's Thoughts / An email exchange with Dr. First about BIID.
An email exchange with Dr. First about BIID.
Written by Sean on Wednesday, March 28, 2007
A recent post I made on this site and a Yahoo! discussion group prompted a lot of discussion and brought up the nearly age old question of “Does BIID include anyone who wants a different condition than being an amputee?”. I maintain that it doesn’t matter what condition is sought, we all suffer from BIID. Some agree. Others disagree. Others yet are quite vehement in their refusal to have BIID include anything else than “amputation”. And so I decided to go to the source. I emailed Dr. Michael First, who coined the term Body Integrity Identity Disorder.
Dr. First was kind enough to respond to my email. He confirmed that he only included amputee wannabes in his original definition of BIID (don’t despair too quickly if you believe in a more inclusive definition). He wrote in an email to me (quoted with permission):
The term BIID was coined specifically for those who desire to be an amputee in order to replace the term “apotemnophilia”, a term coined by John Money who reported on the first two cases in the literature in 1977…a term which essentially meant being sexually turned on by the idea of being an amputee. The problem with this term, of course, is that it focused exclusively on the sexual arousal part of the condition and ignored what I consider to be the central element…one of desired identity.
I have long thought the term “apotemnophilia” was ugly, not to say innacurate. Same with “Abasiophilia” and myriad other terms of the same ilk. Setting aside the sexual implication of a “philia”, the mere appearance of the term makes the condition suspicious, and appearing more negative to Joe Q Public. The gods know that we don’t need more negative perceptions for what we are dealing with. The fact that the term BIID appeared made me very happy.
Dr. First continues:
I specifically came up with this name in order to be parallel with the term “Gender Identity Disorder”, which I believe is at least conceptually related to BIID. ”Gender Identity Disorder” implies that there is a disorder in the establishment of gender identity. The name “BIID” assumes that there is an analogous function called “body integrity identity” and that it is disordered in BIID in the sense that it deviates from anatomical reality.
Again, I can’t help but agree with Dr. First. It’s why *I* coined the term transabled, as it is such a nice pair transabled/BIID, just as transsexual/GID. Having been in contact with many transsexual individuals, I could not help but to see the similarities between their experience and ours.
Dr. First then said (emphasis mine):
I think a case could easily be made that paraplegia vs. fully functional peripheral neuroanatomy could fall under body integrity identity and that any other major bodily function, like sight or hearing, could fit in there as well. When I did my original study, I did interview two people who wanted to be paraplegic using my amputation-focussed interview (changed the questions from amputation to paraplegia) and the paraplegia version seems pretty much the same as the amputee version. Of course, since I only interviewed two people this is a bit speculatiive.
So this is where the interesting bit comes in. Dr. First is open to the idea of including other impairments/conditions in the diagnosis of BIID, but he didn’t at the time of his study because he had incomplete/insufficient data to do so. When I asked him to confirm this, he did so:
You are right that at the time I came up with the term BIID,I did have insufficent data to include other forms of impairment.
And here we have it. BIID currently and “technically” does not include any other condition than amputation, but likely solely because of insufficient data.
What can we do about it? Well, another study to gather more complete data, of course!
Dr. First is now looking at doing a follow-up study to his original study. Stay tuned! News at eleven!
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11 Comments
2 On 29 March, 2007, Marie said:
Fascinating!! I wonder what he thinks about the post I wrote comparing BIID and GID.
I have been lucky enough to have been helped by Dr First somewhat directly.
I joined the military last year and ever since I have regretted it because my transabled feelings only intensified. I spoke to the command about my problems and they sent me to see the shrink. My doc said that she had spoken to Dr First about my case. That helped my doc to understand what I am going through and with her recomendation I’m on my way home.
I think we’re lucky to have Dr First, and I hope that he is able to officially include Paralysis to BIID, as it should be.
I think it´s important to make some changes on the biid.org website and giving information about this fact.
5 On 1 April, 2007, Sean said:
Finca, I’ve been asking the owners and host of biid.org to make these changes for years. They refuse.
This is really refreshing to hear. Thank you Sean. As always I am grateful for your levelheaded approach to this subject.
7 On 23 April, 2007, Roger said:
Let us hope Dr First does do a further BIID study with a wider scope of BIID candidate conditions. The term “abasiophilia” is widely used on my site, but it has an overtone of deviancy that is not appropriate (or correct) and a better term is needed. In the past I have tried terms like “fascination”. Abasiophilia IS a form of BIID in my book.
8 On 23 April, 2007, Sean said:
Roger, thanks for your comments. Dr. First is gearing up for it, it just takes some time to get through the hoops set before one can do a study.
That said, I think that you have to look at what you understand abasiophillia to be. If you look at it from the perspective of “I need to need braces to get around”, then, yeah, it’s in the BIID scale. But if you look at it from the perspective of “I’m turned on/attracted by people who wear braces or at the idea of wearing braces myself”, then it is more in the realm of “devotee” and abasiophillia is more appropriate. Word is ugly as sin, as are most of the “philias” words. But accurate in that case.
9 On 4 May, 2007, Roger said:
I agree that an overwhelming need to have ones own legs braced is truly a form of BIID, whereas getting pleasure from seeing others in braces is not. There are plenty who both want/need to be in braces themselves and also enjoy seeing others in braces …and envy them!
10 On 4 January, 2008, Roger said:
Dr First interviewed me by phone over 3 sessions before Christmas. The process was straightforward and stress free.
Partly as result of speaking with him and a very level headed and helpful email he sent me afterwards, I have been able to be more open with my wife about my abasiophilia (need to wear leg-braces), which I feel is a form of BIID.
It will be interesting to see what sense Dr First makes of all our various contributions and whether BIID gets incorporated into DSM-V.
11 On 4 January, 2008, Sean said:
Thanks for the information Roger. I’m glad it went well for you. I have really found Dr. First to be very good and helpful. He’s not offering therapy, but he’s extremely good value :)
I’d be interested to hear more about how things are going with your wife as it relates to your brace need.
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1 On 28 March, 2007, Tegumai said:
Makes sense. We’re still in a learning and evolving stage and will be for quite a few decades.
The best science happens when things don’t fit the accepted model. Of course for political, and societal acceptance, they prefer things to stay the same as always.