Monday, February 27, 2012


So I saw this thing on National Geographic today... and I'm a little confused. Actually, I'm very confused. Then I found her blog, and now I'm filled with a million questions.

Apparently there is a quiet sub-culture called the 'transabled' - people who are not naturally amputees or paraplegics, but they wish to become so. Chloe is a woman who desires to become a paraplegic, and lives life in a wheelchair with leg braces- when she isn't out hiking or skiing. She is looking for a surgeon that will perform "ability reassignment surgery" on her, with the intention being to sever her spinal chord. 

My initial thought was that this was wrong; why act out a charade of disability if you're not disabled? Why on Earth would you want to pay to have your healthy body damaged when so many people would give anything to be healthy? However, that argument rests on the assumption that it is 'better' not to be disabled, which, from the scattered and wide spectrum of opinions I've read, lies more in shades of grey than black and white.

 Additionally, if she has a true psychiatric condition as she claims, called BIID, then perhaps that really is just as much of a disability as a physical one. After all, it is keeping her from using her body, despite that she physically could if she chose to. I have seen a lot of discussion among the blogs I follow about how disability can add quality to life in different shades, instead of the presumed automatic life of misery that some people seem to imagine. Maybe living life as a 'transabled' individual gives her life more meaning, but her farce seems like it may be a slap in the face to those with natural disabilities that were not elective. If she has BIID, is she pragmatically just as disabled as anyone with a physical difference? I wouldn't know, although I'd love to hear that side of the story.

I feel that there are a lot of arguments both for and against this, and that's why I'm writing about it. I myself have a lot of strong feelings in both directions about the issue, but not enough information to pin them to anything.. so I'm asking questions. I like getting outside of my comfort zone and wrapping my head around the completely unfamiliar - it's how we grow, and I think it's a healthy part of the learning process. And now, it's time for coffee.


  1. Wow! and double Wow!
    I can understand the transgender phenomenon; a psychological belief that one was born into a body of the wrong gender which may someday be found to be a genetically based anomaly and which can or should be corrected.
    Trans-abled? (1) It can only be psychologically based (there is no "I want to be disabled gene") and I am trying real hard to be non-judgmental. I really don't know any disabled people who would actively choose to be disabled; they accept who they are. The situation where an able person would seek to be disabled by medical intervention can only be a deep seated disorder, not unlike masochism. Why would anyone want to be disabled and a burden on society and others when there are insufficient supports for the truly disabled? I'm baffled.
    I am more baffled that a physician would sever a spinal column to make a person a quad or para, or blind, or deaf or whatever. I was under the assumption that physicians took an oath to do no harm...intentionally disabling someone is harm, no matter how you bake the cake. I place physicians who would perfrom such a procedure in the same place as one who gets involved in growth attenuation...harm is harm.
    There are a variety of expressions of human behavior but some are simply unacceptable in my mind. Others would disagree....

    1. Fortunately, (or unfortunately, I suppose? for Chloe), no physician yet has been willing to perform the surgery on her. I don't know her, so I guess I can't get inside her head for this kind of an insight... all I can say is holy moly.

  2. Actually, Phil, there is evidence that there is at least a part of BIID that is neurological - a difference in the brain that, grossly simplified, means we don't recognise parts of our body, that the body map that we have in the brain is incomplete or damaged. Unfortunately, fixing body maps in the brain is not currently possible.

    As for the "do no harm" - yes, disabling the body is offering a level of harm. To not offer us surgery is to keep us in a level of emotional anguish that is trully disabling. Much more so than being paralysed or an amputee is.

    Just food for thoughts.

    1. Sean, I appreciate your response. I was hoping at least one individual with BIID would come forward and shed some light on the situation from your perspective, because I'm having a hard time wrapping my head around it.

      If you don't mind my asking, I'd love to ask you a few questions:

      -When did your experience with BIID begin?

      -Do you experience numbness or unpleasant sensations in the limb(s) that aren't mapped properly, or is it more a sensation of 'this doesn't belong here'?

      -What if you get the surgery, and discover that you don't embrace the paraplegia like you thought you would? It's irreversible; does that make you nervous when searching for ability reassignment?

      Of course, feel free not to answer, although I'd love to hear what you've got to say.

  3. I am the Chloe on National Geographic. What confuses me is why people make up stuff about me. Where did anyone hear me say that I am not physically disabled?

    I have had fibromyalgia for the last 26 years. It is significantly disabling, though episodic. In 2006 I had a completely unintentional spinal cord injury leaving me with monoparesis, sensory loss, muscle spasms, chronic back pain and incontinence. I was born with moderate reverse slope hearing loss. I did not ask to be physically disabled, but I am. I would seriously like this question answered. Why are people assuming that I do not have physical disabilities.

    People with disabilities are a burden on society? Really? That seems a very ableist point of view. In what way would my capacity to do my job be diminished if I was paralysed? Seriously; answer the question. I work at a desk as a research scientist using quantum mechanics to design medications. I have been doing this in a wheelchair for years, and paying my taxes.

    I do not adhere to the bigoted point of view that people with disabilities are in some way lesser human beings. Could someone explain this to me, please. I have a blind friend who has quadriplegia and cerebral palsy. She is far more capable at certain things than I am. People are different from each other; that is all.

    I will answer any serious questions about BIID that anyone may have. But it's a two way street. You answer my questions and I'll answer yours.

    1. Chloe, I was very excited to hear from you. I appreciate you taking the time out of your undoubtedly busy day to answer my questions personally. I apologize for my assumption that you are free of natural disability; National Geographic may have made you seem more able-bodied than you are for the purpose of ramping the show up a bit. I apologize for having misspoken; when I said, "Why act out a charade of disability if you're not disabled?", I was referring to the BIID community as a whole, not you as an individual, although I was unaware that you are naturally disabled as well.

      Although I think your question may have been directed at Phil (who has quite a backstory of his own... I 'lol'ed a little at the idea of him being labeled an 'ableist'), I'd like to say that for your particular situation, it's unlikely that your job performance would suffer if you received your ability reassignment surgery. However, not everyone in the workforce is blessed with the intellect to work as a research scientist at a desk. If I were to become paralyzed, for example, I'd have to find a new job - my current profession would be out of the question.

      Your insight actually brings me to another question - if you don't mind my asking, I'm not trying to offend- where does your natural disability end, and the disability rooted in BIID begin? You had mentioned on the show that there is a line between 'lying' about being disabled, and 'exaggerating' an actual disability, in order to live as an individual in the BIID community. Do your natural disabilities and the symptoms of BIID blend together, or do you have a good concept of the duality?

      One more question, and then I'll stop Barbara Waltersing you- and it's the same question that I asked Sean. Are you ever nervous about the irreversible nature of the procedure you're seeking to procure? Are you worried about the potential reality that you may be unsatisfied with life as a true paraplegic once your spinal cord has been severed, or do you feel confident that you would prefer things that way?

  4. Helena, yes you are correct in noticing that the shows I was on skew the truth a bit. On the Anderson show I explicitly stated that my general practitioner had recommended several years ago that I use a wheelchair as much as practicable for physical reasons. The chronic back pain due to the spinal cord injury (SCI) causes blood pressure spikes that are potentially life threatening. The wheelchair greatly reduces my back pain and therefore my blood pressure. Most wheelchair users are able to walk. A good many of these use a wheelchair to help control back pain. Everyone present at the Anderson taping heard me say this, but it was edited out. Consequently the statement on the Anderson website that I use a wheelchair needlessly is a deliberate misrepresentation.

    Also edited out was the story of my friend with BIID who attempted suicide in January. She now has a wheelchair, and the suicidal feelings have passed. Even for psychological reasons, a wheelchair can literally save the life of someone with BIID. Are people really so cold hearted as to say using a wheelchair is not a legitimate way to save a person's life?

    Besides that, my friend mentioned above also has physical disabilities that are alleviated by using a wheelchair. This brings me to my next point, which is to wonder why you believe that the BIID community as a whole do not have physical disabilities. Although I am not aware of any scientific studies on this, my anecdotal impression is that the majority of people with paraplegic manifestation of BIID already have some unintended injury to their back and/or leg(s). The phenomenon is alluded to in Michael First's (the psychiatrist on the Anderson panel) most recent scientific paper on the subject.

    This brings me to your perceptive question about the relationship between my actual SCI and my BIID. For me this relationship is indeed very strong. The five symptoms of SCI that I previously mentioned are constant daily reminders that I am already part way towards what my brain tells me I am supposed to be. There have been speculations that the brain rewiring associated with a relatively minor SCI can exacerbate a pre-existing BIID. This is certainly in accord with my own experience. It was not until after my 2006 SCI that my BIID became so intense as to require leg braces and a wheelchair in order to be treated effectively.

    I do not wish to speak for others with BIID who might need to change jobs after paralysis. You would have to ask them. However, I have not heard of a single person with BIID who wishes to collect any kind of disability benefits. There appears to be a consistent determination to remain in a productive job.

    Your last question is also based on somewhat erroneous impressions given by the TV shows. I am not actively seeking a surgeon to sever my spinal cord. Several years ago I asked my physician about the prospects. She said that was very unlikely, but that I might be able to find someone to sever my sciatic and femoral nerves to paralyse my legs. She was exactly correct. The idea of a spinal cord transection is in the realm of fantasy and therefore not my concern. I am someone very well grounded in reality. With the real life scenario one has the possibility of paralysing one leg at a time. I would get my left leg done first and see how that sits with me. I can not imagine any possible regrets over that. It would scarcely affect how I conduct my life. Currently my only days not in a wheelchair are spent skiing. I have already taken lessons in 4-track adaptive skiing on account of the monoparesis. My instructor suggested that I should take lessons in 3-track adaptive skiing due to the substantial difference in strength between my left and right legs. This is exactly the technique used by skiers who have one paralysed leg.

    Feel free to ask any further questions. I always welcome intelligent discussion, and I appreciate your interest.

    1. Chloe, I completely agree with you - if sitting in a wheelchair can keep someone from taking his or her own life, then so be it. I wish alternatively that people who suffer from BIID exclusively would find a way to cherish the gift that a lack of disability is... but if that is truly how someone feels, it's important that they find their individual happiness.

      Thank you for clarifying about the paralysis - it does make more sense that way. Again, I appreciate your input! Thank you for the enlightenment on a new topic. :)