I was recently asked about my “stance” on transableism. My succinct stance is… I support it. I support those that are considering it and those that have started or completed a transition. But let’s back up a little and talk about transableism, what it is, what it looks like for the individuals involved with it, and what it means for society as a whole.

Transabilism is medically identified as Body Integrity Identity Disorder (BIID). A person with BIID can have “an intense desire to amputate a major limb or severe the spinal cord in order to become paralyzed” (Blom et al). As you might imagine, BIID is an extremely rare condition that has had very little research study done on it and carries a relatively strong negative stigma. Those suffering from BIID are usually undiagnosed as they are unlikely to express their needs because of the negative social stigma. This can unfortunately prolong a person’s suffering and may increase comorbidities of depression, anxiety, and suicidal ideations (Blom et al).

What causes BIID? The cause remains unknown. One study discovered that the symptoms of BIID parallel those of somatoparaphrenia, a syndrome occurring secondary to right parietal lobe damage by a cerebral tumor or stroke. This similarity, coupled with the early onset, suggested to the researchers of that study that BIID could be a congenital disorder, [born with it] (Blom et al). But again, the studies of BIID are minimal and all major studies on the topic point out that the aetiology, or nature of BIID, is still unknown and that further study is needed to determine such.

Is it Ethical? Ethics and patient consent (autonomy) are closely connected with treatment of people with BIID. Back in my days of being an EMT we extensively studied the topic of patient consent. In general, a person always had the right to accept or deny medical care. Because of the nature of EMT work, we would occasionally come across patients that were unable to make those decisions for themselves. For example, for an unconscious patient we would assume that they would want care and begin treatment. Sometimes it wasn’t so clear though, a diabetic patient could be exhibiting signs of severe mental distress yet still able to verbalize that they didn’t want our treatment. What then? Would we still consider these patients to be of “sound mind” able to make autonomous decisions for their own medical care? 

A comprehensive analysis of the ethical considerations of recognizing and treating persons with BIID was completed by Tim Bayne and Neil Levy and published in the Journal of Applied Philosophy in 2005. Here is a link to their work https://pubmed.ncbi.nlm.nih.gov/15948330/. In summary, Bayne and Levy concluded that, “BIID sufferers meet reasonable standards for rationality and autonomy; so long as no other effective treatment for their disorder is available, surgeons ought to be allowed to accede to their requests” (Bayne).  They go on to note, “It is well-entrenched maxim of medical ethics that informed, autonomous desires ought to be given serious weight. An individual’s conception of his or her good should be respected in medical decision-making contexts” (Bayne).

In a dissenting article to the Bayne/Levy study, D. Patrone remarks, ““So it is the autonomy argument that does the lion’s share of the justificatory work. It also provides the greatest cause for skepticism.” As I mentioned in the case of a diabetic emergency, it’s not always easy to decide if a person is “of sound mind” to make their own medical decisions. Patrone is pointing out that this is of special concern for patients that are considering a permanent disabling surgery. To be sure, while it isn’t appropriate to assume that persons with BIID are of unsound mind, a team of medical professionals should be available and involved for patients considering these life-altering transitions.

Rianne Blom et al. point out in their study that simple acknowledgment and respect are of extreme value to the person with BIID. “Next to surgery there is no effective management strategy at present, but the sheer acknowledgment of and respect for the desires of BIID individuals may decrease the huge burden of BIID on their lives” (Blom et al.)

What about the persons with BIID? “BIID individuals prefer being in harmony with one’s identity, even if it results in physical disability. Surgery appears to result in permanent remission of BIID and in impressive improvement of quality of life” (Blom et al). Let me repeat that… “surgery appears to result in permanent remission of BIID and in impressive improvement of quality of life.” Wow! 

There are horrific stories, rare as they are, of person’s with BIID finding their own ways of dismembering or disabling themselves. When a person’s mind and body live out of integrity with each other, self-harming behaviors are often the release. This can so easily be avoided by simple societal recognition and respect of people with BIID.

One of the sources I came across in my research was an extensive study and presentation of people with BIID. This study was compiled primarily form a decade and a half following of a web community on a website known as transabled.org. “As an outlet run by and for PWBs (persons with BIID), made up of supportive and like-minded others, we can therefore think of transabled.org as a site of mutually verifying interaction and moral stigma resistance” (Davis). Unfortunately, this website disappeared into cyberspace about 10 years ago. As with any marginalized community, the best way to gain understanding of their life experience is to become a part of their life experience. You can read into the lives of person with BIID here https://www.jstor.org/stable/10.1525/sop.2012.55.2.319

What are the societal costs? One of the first rebuttals I heard for providing BIID transitions was, “I don’t want my taxes to pay for that”. The tiny fraction of cost that these transitions would entail seems hardly worth debating. I live in a country that spends obscene amounts of money on warfare and corporate bailouts. Nit-picking BIID transitions would be akin to pulling a gnat’s hair out of a hayfield. It’s just not even worth discussing in my opinion. The authors of one of the research studies succinctly put it, “The costs might be offset by the benefits of amputation in some cases but not in others” (Bayne).

Another interesting refute I came across was in Purple Political Breakdown podcast in which the creator of the podcast declared that society cannot function with such abstract norms? This concept intrigues me the sociologist in me. I will be digging into this in a future post. What are “norms”? Who gets to decide what in “normal”?  For now, I am content to place my bets on societal diversity being a greater benefit than societal “norms”. 

The real cost to society as I see it comes in the form of “othering”. Anytime a society creates “others” it fuels division and xenophobia. “Individuals and groups who do not fit well within socially prescribed categories call into question the established social order and are punished through stigmatization and marginalization. This exclusion occurs because that which we cannot easily define brings about discomfort. We alleviate this discomfort by socially rejecting the things and people that exist in liminal spaces” (Davis).

Is Transableism a Slippery Slope from Transgenderism? No, I don’t believe that it’s a slippery slope from transgenderism, certainly not in a negative way, but rather an empowering of voice. So many unique, and wonderful, humans have been silenced by shame and societal castigation. Most people just want to be heard. We, as a society, have the power to hear people and by doing so, we provide the simplest, yet most effective form of support available.

So yes… I hear, support, and respect people of the transabled community. I believe that people with BIID should be allowed access to a medical team that is willing, and able, to work with them to develop a treatment plan that will help them live a life that is filled with happiness and harmonious body integrity.

This is my stance, what is yours?

Works cited:

Bayne, Tim, and Neil Levy. “Amputees By Choice: Body Integrity Identity Disorder and the Ethics of Amputation.” Journal of Applied Philosophy, vol. 22, no. 1, 2005, pp. 75–86. JSTOR, http://www.jstor.org/stable/24355072. Accessed 31 May 2023.

Blom, Rianne M et al. “Body integrity identity disorder.” PloS one vol. 7,4 (2012): e34702. doi:10.1371/journal.pone.0034702

Davis, Jenny L. “Narrative Construction of a Ruptured Self: Stories of Transability on Transabled.Org.” Sociological Perspectives, vol. 55, no. 2, 2012, pp. 319–40. JSTOR, https://doi.org/10.1525/sop.2012.55.2.319. Accessed 31 May 2023.

Lewis, Radell. Purple Political breakdown Podcast. Accessed 2 June 2023.

Patrone, D. “Disfigured Anatomies and Imperfect Analogies: Body Integrity Identity Disorder and the Supposed Right to Self-Demanded Amputation of Healthy Body Parts.” Journal of Medical Ethics, vol. 35, no. 9, 2009, pp. 541–45. JSTOR, http://www.jstor.org/stable/20696636. Accessed 31 May 2023.