Blog > Thoughts > Sean's Thoughts > Responding To Nikki Sullivan’s Questions
Responding To Nikki Sullivan’s Questions
Written by Sean on Thursday, August 20, 2009
In a recent series of comments on A comparison between transsexuality and transableism, which had 117 comments at the time of this writing, Nikki Sullivan asked several most interesting questions, and made many good points. I wanted to separate those questions and points and address then in a post of their own, as they are too important to "hide" them in a long list of comments.
As you can read the entirety of Nikki’s comments in the previous post, I’ll only quote the parts I wish to address.
As one of the alleged "fringe ‘researchers’ with no credibility (who are intent on media attention and unable to produce real research)" I would like to say how much I appreciate the information that people who identify as having BIID have provided on this site, despite the fact that in doing so you clearly open yourselves to fairly constant (and extremely virulent) attack.
We do indeed open ourselves to regular attacks. It hurts, and it’s unfortunate. It particularly hurts when the attacks come from a group of people who have been ostrarcised and oppressed themselves. But as Cath said a few times, being the victim of oppressors doesn’t mean you’re not going to oppress someone else.
I’ve never seen Nikki as a "fringe researcher", and I certainly don’t think she’s media hungry. Her research is real, although it is aimed in a different direction than what many of us want to see. In other words, it looks at aspects outside of merely the physical/psychological of BIID, to look more in a societal point of view. That’s important stuff to discuss as well. I can’t say that I always agree with her, but I certainly think these things need to be discussed.
I think it is crucial that the relationship between what is described on this site as BIID, and other experiences of disjunction between self and body be explored as openly, and in as much detail as possible. At the same time, I understand that for a whole range of complicated historical and political reasons some people are loathe to, fearful of, or simply unable to do this
Nothing happens in a vaccuum. Using comparisons between different experiences (or conditions) can be quite useful, I think. I, too, understand the reasons behind some people’s reaction at that suggestion.
I noticed that someone said that BIID is a term that refers to a wide range of desires for various bodily states (of ‘impairment’ – I hate this term). The list of examples of ‘disability’ (and this one!), included being HIV+ (I think it actually said AIDS). It also struck me that ‘obesity’ (I hate this one too!) has also been described by some as a ‘disability’.
First, I want to address the hated words. I’m far from being PC. However, I believe in the power of language. The words we use can limit us (and others), without us even realising what is happening. That is why I find it important to avoid using words that are limiting. At the same time, I find words such as "impairment" and "disability" to be quite useful. I see a significant difference between saying "a disabled man", and "a man with a disability". The former implies that the man is broken, or "out of order". The simply states that he has, among other things, a disability. I belong to a camp that believe in the social model of disabilities, even though we could argue that model to be outdated. In the social model’s view, the disability is a result of barriers imposed on the individual by a non-accessible society. For example, being paralysed and using a wheelchair only becomes a disability when that person encounters a building with a flight of steps and no ramp to get in. In the same way, someone who is blind becomes disabled when the textbooks are not available in braille or other alternative format. Being blind, or paralysed, are just different states of being. The word "impairment" is used to represent that state of being. In and of itself, it should not carry any negatives. This is how I use these words. I don’t feel that, in this context, they are so hateful.
Then, I must admit I have never perceived BIID as including wanting/needing to have HIV+, nor obesity. I guess that when I think BIID, I think of physical impairments more than anything. I suspect that most people think that way. The problem is that at the moment, the "official" definition only includes the need for amputation. Other needs, such as my need to be paralysed, or other people’s need to be blind, or deaf, are not yet officially accepted under the BIID umbrella. That is about to change following the publication of Dr. First’s latest study on BIID (a follow-up on his original one to see if indeed these other physical conditions should be included or not). In and of itself, obesity is not an impairment (as per the definitions above), just like being old is not an impairment. Some conditions related to age or extra weight can be viewed as impairments and cause disability in our world, but in and of themselves, they aren’t impairment. The other aspect here is that our need for whichever condition we need usualy surfaces before puberty. While I admit I have not spoken to many people needing HIV+ or extra weight, from what I hear, these "Desires" (as opposed to desires) don’t usualy appear until well after puberty.
I have to be candid here. The idea of associating the need to have HIV+ with BIID makes me uncomfortable. Perhaps in a similar way that some transsexuals may be uncomfortable with my need to be paralysed. Do note that while it makes me uncomfortable, I do not judge or intend to ostracise. This is something I need to explore more. And more research is necessary. We understand BIID so little that growing the knowledge is important.
Deafness, it seems to me, is treated somewhat differently, and the deaf community’s sustained criticism of the generally held assumption that all deaf people should desire cochlear implants (where appropriate) may be of some assistance in developing an argument for access to surgery that would result in deafness.
I have used a similar argument with people who were Deaf, explaining to them what BIID was about. Pointing out that for many people who are deaf, the culture of Deafness is important and they don’t view deafness as a disability (until they need interpreters, then it is convenient to be protected by the ADA!).
Similarly, I can see why it might be helpful to draw an analogy between so-called GID and BIID, but at the same time – and as many of the critics who have commented on this site have (perhaps inadvertantly) demonstrated – sex reassignment procedures produce bodies that are largely perceived as ‘normal’, whereas amputation, for example, produces bodies that are generally perceived as less-than-normal, and therefore, as, by definition, undesirable.
And this is where looking at society’s perception and the societal impact on medical "ethics" is important. If it weren’t viewed as such a negative to have "impaired bodies", it is likely that medical ethics wouldn’t be such a barrier to provide surgery for BIID. And let’s face it, for many people (over 50% according to a study that was published last year, but I misplaced the reference!), for many people, disability is a fate worse than death. That ingrained perception can only deeply influence thoughts and actions when it comes time to face someone who *wishes* to have such an impairment.
So in one sense at least, the analogy doesn’t really work for those desiring access to the kinds of surgeries that are mentioned on this site.
The analogy is useful to explain the "dysphoria", or the experience (and usual hell) of said dysphoria. It is not, and never was, the be all and end all. I certainly have never considered that the causes would be similar.
… rather than trying to ally too closely BIID and GID, it might be more effective to develop comparative anlyses with other forms of embodiment as well. For example, why is it that short men can now be diagnosed as ‘suffering’ from Idiopathic Short Stature (ISS) and, as a result, be prescribed Human Growth Hormones, whereas people desiring, for example, an ALK amputation can’t get access to surgery, and are generally regarded as crazy. It’s not enough to say that this situation is inequitable. We have to think about why it is that we allow the former and not the latter, and how we might work to challenge the assumptions that inform both decisions.
The answer is fairly straight forward, I think. It goes back to that negative perception of "disabilities".
I realise that what I’m suggesting constitutes a long process, that won’t change the lives of people with BIID overnight. Given this, I think it is also necessary to fight on other levels at the same time – for example, to argue for the inclusion of BIID in the next DSM if this is what is deemed most appropriate (and I have to admit, I do have reservations about this as well as being able to see why it might be a good idea).
The last thing we need is something that will take generations to effect. I am also concerned about the inclusion of BIID in the DSM. But in view of where society is at right now, I think it is the only way for us to get access to surgery. It is an expedient way to break the mold, and gather more data about the effectiveness of surgery. Being able to show a success rate, the actual benefits of surgery vs psychotherapy or pharmacotherapy, will help a great deal for acceptance of surgery by the medical community. It might not do a great deal for society’s acceptance of BIID, but that’s almost irrelevant.
[Do] people who identify as having BIID think that whilst it might be useful to draw on the kinds of arguments that trans people have made re their lived embodiment and their desire for/access to surgery, attempting to claim an analogical relation between the two is, ultimately, not going to produce the hoped-for results?
I guess we have to define what the hoped-for result before we can answer that question. As I’ve never seen the comparison between BIID and GID as a path to surgery, I guess that the comparison won’t be counter productive. To me the comparison is merely a tool to introduce the idea of BIID to people who have never heard of it. Because GID is more common, and somewhat better understood (while not being well understood nor accepted), starting to speak to people using that analogy is useful. But it is only a starting point.
I can see that the analogy appears to be useful given the successes achieved by and for trans people. I guess my concern is that running the same kind of argument won’t produce the same result because sex reassignment procedures tend, for the most part, to produce bodies that appear ‘normative’, whereas procedures which amputate, make deaf, or paraplegic, etc, produce bodies that in most people’s eyes, are ‘non-normative’ – that is, undesirable. I think this is an important difference and one that can’t BIID activists afford to ignore – and in saying this I’m NOT suggesting that such perceptions are correct, or that I agree with them. But they are real, and they are incredibly powerful despite all the hard work that disability activists and scholars have put into challenging them.
I agree that it is mission critical to consider the normative vs non-normative outcome of surgery to "treat" BIID as opposed to SRS. Then again, I don’t believe that the "BIID is similar to GID" ever was an argument supporting surgery for BIID, not in and of itself.
As an aside, it was interesting for me to hear a psychiatrist use that argument *against* surgery for BIID, stating that too many post-op transsexuals regreted it. If is facts were right (and that’s a big if), I suspect that might be because some people rush through transition without doing their homework. As another similarity, I believe many people with BIID would also do so. Hence my belief that some form of screening needs to happen.
Similarly, it seems to me that argueing for the individual’s right to bodily self-determination is not going to result in access to ability reassignment surgeries. And if it doesn’t, then we need to ask WHY it doesn’t, and to develop strategies that may prove to be more effective, don’t we?
I would have to agree that the self-determination argument isn’t going to lead to "ability reassignment surgery". In a perfect world, perhaps, but we’re nowhere near that perfect world. So, what would you suggest we do to be more effective? What can we do, concretely, to change those attitudes?
Also, I’m not sure I like the idea of "ability reassignment surgery". We aren’t seeking to have more, or less, ability. We are seeking to align our physical self with our intelectual/emotional/body-schema self. This has nothing to do with a desire to be less able. And in many ways, the understanding of "ability" could be challenged. For example: Would my becoming paralysed make me more, or less able? From a physical perspective, one might reasonably argue that I would be less able. But from a holistic point of view, I would be *more* able. I would not be plagued by these crippling (word selected on purpose) bouts with depression and inability to do anything. So while I’d lose the ability to walk or stand, I would gain the ability to function effectively on a more regular basis. On the surface, "ability reassignment surgery" would then fit. The problem is, only a small minority of people seem to understand and/or accept the concept of reducing physical perfection in order to increase functionality.
Well, I’ve certainly spoken a lot. What do you guys and gals think?
Tags: Ability, BIID, Disability, GID, Impairment, Medical Community, Social Model, Surgery, Transabled, Transsexual
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10 Comments
Thanks Sean, Your comments have got me thinking all over again. Yours too Chloe. I should begin by acknowledging that the term “disability assignment surgery” is not my own. I used it in response to a comment from Nobody which included the term.
Like you both, I think that language – in particular ‘naming’ – really matters, and its for this reason that I’ve been doing a whole lot of reading re debates that have taken place regarding nomenclature surrounding ‘trans’ and ‘intersex’. I guess I’m troubled by the idea of naming (even for strategic purposes) the experience of dyshphoria, the experience of profound suffering, a ‘disorder’. And I’ve been thinking about whether and how it might be possible to argue for access to procedures that would alleviate that experience/suffering without conceding to a model that implies (explicitly or implictly) that people who have that experience are ‘sick’, ‘abnormal’ etc and therefore need to be ‘cured’. It could be that a consideration of the debates etc that have shaped other experiences of ‘dysphoria’, other forms of profound suffering re a disjunction between self and bodily-being, might help to shape arguments for access in positive and productive ways – and I guess that’s the kind of contribution I would hope to be able to make.
On that note, I’m really grateful for your comments re the ‘GID’, BIID relationship. As an explanatory tool I can see how it works. And to be honest, I was not aware that the analogy wasn’t being drawn in order to argue for access to surgery. I now wonder whether what is in fact happening is that the analogy is being deployed in different ways, in different contexts, and for different purposes. Why, for example, might a medical practitioner like Michael First use it?
I’ve also been doing some reading about the DSM, and thinking about what some of the considerations might be about the *form* inclusion would/could/should take (should it happen). Just read a great article by Nicholas Matte, Aaron H Devor, and Therese Vladicka entitled “Nomenclature in the World Professional Association for Transger Health’s Standards of Care: BAckground and Recommendations” (in the International Journal of Transgenderism, 2009, 11:1, pp.42-53) which I think raises a whole range of really important questions that those arguing for inclusion of BIID in the DSM-V might want to consider.
Also, given your comments Sean re the desire for HIV+ what imput might activists and academics have on the formulation of ‘diagnostic criteria’ etc?
OK< I’ve probably asked more than enough questions, but I hope we can continue this conversation – there is so much more that I want to ask and/or put out there for consideration and response.
Thank you for all this food for thought, Nikki. What you said about the word “disorder” jumped out at me. A year or so ago my psychotherapist pointed out that my thoughts about needing to be paralysed do not seem disordered. To the contrary, his perception was that for the most part my thoughts are quite orderly and rational given the situation in which I find myself. However, I would accept any label necessary to gain access to surgery.
I am also reminded of the nomenclature “Disorders of Sexual Development” as applied to people with intersex conditions. I absolutely do not consider myself to have a disorder just because I am intersexed. The implication is that there is something inherently “wrong” with being intersexed.
Yes, I totally agree Chloe, the term ‘disorder’ does carry with it all sorts of worrying conotations. I know that to some people arguing about naming might seem peurile, or like something that only those allegedly not suffering have the luxury of doing. But I guess that as I see it, there are very real material ramifications/effects of conceiving difference in terms of normal/abnormal, healthy/sick, ordered/disordered etc. Clinical nomenclature tends not just to name different modes of bodily-being, but also to classify people as certain ‘types’ – and being classified in this way can, for example, have the effect of discrediting those who are perceived in this way, silencing them etc. I was particularly struck by this yesterday when I was reading a recently published article by Tracey Elliott called “Body Dysmorphic Disorder, RAdical Surgery, and the Limits of Consent”, in which she writes (summarising the claims of others) “any surgeon or hospital who becomes known for conducting healthy limb amptuations is likely to attract, in addition to a good deal of unwanted publicity, considerable attention from ‘wannabes’ all over the world, not all of whom would be considered to be appropriate candidates for surgery. … Would-be amputees may go to great lengths in an attempt to force hospitals to treat them, and hospitals will need to consider carefully how they are to deal with such people” (168). What we see here – and I’m sure this is not intentional – is an homogenising image of people who desire amputation, that basically discredits them, sets them up as obsessive, compulsive, and difficult to deal with. In an article that critiques mainstream media representations of ‘body modifiers’ Victoria Pitts argues that the voices of bod moders are silenced or ‘disqualified’ through the depiction of them as compulsive (ie irrational) and therefore as unable to be relied upon, taken at their word, trusted – in much the same way that ‘addicts’ are not to be trusted. The idea of a person being ‘disordered’ inevitably – it seems to me – carries these kinds of connotations, at least in the popular imaginary. For this, and a whole host of other reasons, I think that it is crucial that diagnostic nomenclature not simply be accepted on the assumption that it will result in access. There is no guarantee that this will be the case. Indeed, the idea that a person has, for example a brain disorder that might be cured through, for example, some sort of deep brain stimulation (and not being a neurologist I have to admit I really don’t know what that would entail) conjures up the image of ‘homoseuxals’ undergoing electro-shock therapy and/or even lobotomies. In saying this, I’m not discrediting the work of neurologists or the contributions they might make in this area, I’m simply suggesting that caution, coupled with knowledge of the struggles of other individuals/groups might prove crucial.
Nikki
I don’t consider homosexuals to have a brain disorder and I’m sure you don’t either so why should deep brain stimulation conjure up that image?
The process of placing electrodes in the brain has been found to be very efficacious for youths who have, as I call them, naughty neurons. Kids whose conditions resulted in them not being able to walk or talk have shown incredible improvements. It’s nothing to do with sexuality although it does conjure up a Dr. Frankenstein scenario!
Peter, I guess my point is, that in the past procedures that were seen to be equally medically beneficial (and harmless!) were carried out on people regaded as psychologically ill or aberrant (ie people whose desires differed somewhat from the so-called mainstream). I certainly don’t regard same-sex desire as a brain disorder or as a psychopathology, but it has been conceived this way : it was, as I’m sure you’re aware, included in the DSM, and ‘homosexuals’ were, as a result of the medicalisation of their desires and thus of their persons, subjected to procedures thought to be revolutionary but which were in fact were incredibly damaging. As I said, I am not a neurologist, and I do not know exactly what “transcranial magnetic stimulation” or “deep brain stimulation” might entail – nor do I know anything about ‘naughty neurons’- but given that we know so very little about the brain and how it functions. I’m personally disturbed at the idea of these kinds of procedures (given past history). I guess I’m also not confortable with the idea that desires perceived as aberrant by the mainstream would be better off eliminated. Mose people I know who are same-sex attracted, or who identify as gender-queer or trans would not choose to have their desires normalised via medical means, which is not to say that they don’t desire the suffering associated with the pathologisation and/or disqualification of their desires be alleviated.
7 On 21 August, 2009, Sean said:
Deep brain stimulation involves an open brain surgery, wherein they place electrodes deep in the brain. These electrodes are attached to a pacemaker-like device that is implanted in the chest.
It is apparently quite effective on extreme cases of depression that don’t respond to other forms of regular therapy.
Thanks for the info Sean, but what do you really think of the politics of this, especially in cases where treatment is focused on the elimination or ‘non-normative’ desires/experiences?
I think Peter makes an interesting point regarding homosexuality – from my (admitedly limited) understanding, recent research has concluded that homosexuality is something which is hardwired into the brain from birth – be it a gene or an excess of testosterone or other hormone (im)balance in the womb.
I’m not saying that BIID tendancies are necessarily related, just that it seems to me that there is a lot about the brain that we dont know – and maybe BIID tendancies are formed in the womb just as homosexual tendancies appear to be.
Nikki, you seem very familiar, were you at UWS around 2001 or SCU subsequently. I’m leaning towards SCU. In any case, i’m grateful to see an Aussie leading the way with a BIID research interest.
I really dont have much to add to this very intelligent conversation on the issues, save for i would say that i’m not adverse to the GID/BIID comparison if it helps the medical profession understand the complexities and intracies of our needs.
I had not considered that the impact of that would be that GID needs were considered normative whilst BIID needs were not. Of course, i see the distinction, but i also think that not so long ago a MtF transformation would also have been considered, for want of a better term, ‘a step backwards’.
I would completely agree that its purely a social construct, until our society learns to accept ‘differently abled’ people as people ready, willing and able to contribute to society then our society will not accept us.
But, by the same token, can’t we be a positive force to help our society understand the contribution that all ‘differently abled’ people can make? And why would we, as a society, degrade that possibility?
Nikki, in answer to your most recent question, I tend to think that history has proven that the attempted elimination of ‘non-normative’ desires has been unsuccessful, and i dont see any reason why it would be successful in this instance. So any so called ‘politics’ of this would only be a discussion of an uninformed, and largely scared body politic – people are always afraid of what they do not understand. But an open discussion of these topics would pave the way for future generations to reap the benefits of our struggles.
As a society, we either have to redefine the norm, as we’ve done over and over again over the past 30 years or so (and yes i realise the feminist movement started long before, but really only achieved relative equality recently (if at all) – with the gay and lesbian community making inroads later.
The other option is that we just stand still and pretend that this doesnt exist. But it does – and more and more of my contemporaries are willing to speak out and ‘stand up’ and be counted (excuse the pun!).
I’ve struggled for so long with the idea that i was ‘abhorrent’ because i felt something that my society told me i shouldnt feel. But i’ve slowly come to the conclusion that i just am what i am, and if people dont like it, then that’s their prejudices or assumptions and they are the one’s lacking or missing out because they aren’t willing to open their minds to other possibilities.
I think perhaps your question might have been one of ethics rather than politics (and perhaps that’s what you had intended), but that is a very different discussion, and one which would ultimately influence the politics (or possibly vice versa!).
If its an ethical discussion you were looking for, perhaps Sean could start us off with a new topic so we can get in depth with the nitty gritty of the medical ethics of BIID.
Hey Zoe, Thanks for your comments. Perhaps you’re right about the fact that what I’m really interested in is the ethics of embodiment (in all its diversity), but as I understand ethics its not really separate from politics. I’d love to see Sean start a discussion ethics and/or bioethics, in particular the kind of postconventional bioethics that people like Margrit Shildrick have theorised. There is a fair bit of mnaterial out there that evaluates elective amputation via a consideration of conventional bioethical principles, but most of it seems to me to be problematic for all sorts of reasons – most particularly the fact that the principles themselves are so debatable.
One last thing, I realise that there has been work done which presumes to have ‘proven’ that ‘homosexuality’ is biologically determined, but as far as I’m concerned, both from a theoretical perspective and a personal (lived experience)one, its totally unconvincing and potentially dangerous! I realise though, that historically it was a useful argument to make in the push for decriminalisation. Still, I so don’t want to go there ;{
Oh, and BTW, I’m at Macquarie. I did hang out a bit at UWS in the early 1990s, but have never worked there.
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1 On 20 August, 2009, Chloe said:
There are so many well thought out and interesting points made here by both Sean and Nikki that I’m only going to address a tiny fraction of the issues.
Firstly, there’s the idea of normality. It’s all in the eyes of the beholder. In this first month of wheeling full time at work I have felt more normal than at any other time of my life. My sense of normality is in proportion to the degree with which I conform my presentation to my self-image. For me it is normal to be in a wheelchair. Others may see wheelchair use as abnormal, but then so is having red hair. It is a matter of societal convention as to what is labeled normal. As such it is subject to change.
I am not convinced that the world at large sees post-operative transsexual bodies as being normal. To be sure, MtF surgery is sufficiently advanced that few would be able to tell the difference. However, several of my post-op MtF friends have been dumped by boyfriends after divulging their TS status. One might assert that this is not because of anatomical considerations, but I would argue otherwise.
Secondly, I agree that the analogy between BIID and GID is not per se sufficient argument for surgical treatment of BIID. However, it is indeed a powerful explanatory tool. For myself it is in addition a road map. Although I am technically excluded from a diagnosis of GID, I have gone through a similar process of addressing gender identity, gender presentation, and corrective genital surgery. The BIID path that I now tread is amazingly familiar.
Finally, I happen to very much like the term “ability reassignment surgery”. To me it does not imply connotations of providing more, or less, ability. Likewise “sex reassignment surgery” does not imply having more, or less, sex. One can change one’s ability, just as one can change one’s sex, without there being “more” or “less” about it.