02 July 2007

Real Life Tests

One thing that seems to be a major stumbling block in terms of being able to treat BIID, aside from the obvious lack of support for the condition amongst the general medical community, is that the majority of people I have talked to don't believe disabling a person is effective treatment, in the long term. In short, the people I have spoken to about BIID don't believe those who suffer from it could cope with receiving the disability their mind tells them they should have.

I have been thinking about how to address this for a while now and it seems to me that the only way to prove this hypothesis either way is to test it. Basically, if we're to receive the treatment we need, it seems necessary to prove we can live with the results of the treatment. In my case this would be to prove I can live my life blind. This would be possible through wearing 'no vision' contact lenses (of which there are few manufacturers but those who provide them make good ones, from what I've seen), learning to use a white can properly (something I've been working on but it's more difficult than it might look) and so forth.

Obviously the contact lenses would need removing every night (from what I can tell, they're not the kind you can sleep in) but that can be worked around (Tesco sells a decent sleep mask that can be used as a blindfold for those times when the contact lenses can't be used, for example). There would therefore be obvious differences between the test and actually living with blindness but these differences are negligible and can be accepted within the parameters of the test.

The question is: what length of time would be suitable for such a test? My initial thought was for something between six months and a year of non-stop, in-role living. However, would six months be long enough to adjust and then actually have enough time to undertake the test proper? I'm not sure. Perhaps a year-long test would be better.

After all, if a person can show that they can live with a disability for a year, having a full life and be at peace with theirself, who's to say they shouldn't have the treatment they need? If it can be shown in this way that the disability provides a better standard of life for the person, surely not providing treatment becomes unethical?


Sean said...

Hi April, welcome back! :) Missed your entries...

Anyway, I agree with you on the concept of real life test. One would think this would be a better than good indication. Obviously, you can't do a real life test for amputation, but there are probably ways around that. I have been living 100% of my time in public for nearly 10 years now. I don't wheel as much when at home, not because I'm unable to (I've gone long periods without "cheating"), but because in the end, it *is* easier to walk, and because I have nothing to prove. I would prefer to be paralysed, and would likely be happier. I've done the real life test. Thing is, there's no medical professional that's willing to help.


Anonymous said...

As a person who has transitioned his gender and lived a "real life test", I think it was one of the most valuable tools I had at my disposal. If I could not be successful and stick with it, then the transition would simply not work. However, there are so many out there who consider it unethical to help me with treatments like my surgery to reassign my sex, even after all the therapy and stuff. Unfortunately those people are often the ones who have the say-so when it comes to getting these treatments we so desperately need. I think a person should do whatever they feel is best. It would not be difficult to live your whole life as though blind, given the right circumstances, and as long as you are honest with the person(s) you choose to be intimate with, just in case they discover your secret so it won't destroy your relationship, then I see nothing wrong with a person living a transabled life. Honestly, no one questions me when I am wheeling, whether I look the part or not. Why would anyone ever question you? You choose not to see things the way everyone else does. It only means you're expanded beyond sight and you don't need it. I wish you the best of luck.


Anonymous said...

While I agree that a real life test can and will lead to the person experiencing all of the daily struggles they'll face if they choose to make that change forever, via surgical or other harmful methods, I do believe it has a downside.

There's no sense of finality when you're doing the 6 months or a year- you can always take your contacts off, or get out of your wheelchair, or what have you.

This also applies to people who transition genders: some, even if it's not everyone, will undoubtably end up being depressed over the finality of their choice.

While a person who decided to have some form of genital or chest surgery can reverse it to some extent, blinding yourself (ie through looking at sunlight for excessive amounts of time) is forever- you can't undo it for anything.

I'm not trying to say that your experience is somehow less or that you don't understand and truely want blindness, because I understand that you do. I am just saying that a real life test may not honestly work out perfectly in indicating if a person is ready for the change to be "forever"

April said...

Oh I agree that any real life test will lack that ultimate knowledge of finality and thus it may not be effectively for some people but at the end of the day it's the best we can do at the moment and surely that's got to make it worth pursuing?

The advantages of it far outweigh any possible disadvantages.

Jewel said...

I don't think that a "real-life test" would be enough, for some of the reasons stated above. There's no finality, for one...you can take the blindfold or contact lenses away at any time, you can take the wheelchair away and walk at any time, etc.

I think that the person should also have a mentor, a person who has the disability they feel the need for and who is willing to show them what their life is like: the good, the bad, and the ugly. The BIID'er would shadow the person, first without simming ("pretending" is not a nice word in my book, I prefer simming, short for simulating), then with the disability (blindfold, wheelchair, etc). Then they can have the "real-life test" for a year...I don't think six months is long enough. It took me about six months to adjust to my new life as a blind person and learn all the techniques of blindness, and after 6 months, I was quite comfortable with myself). A series of evaluations, as well, should be given to review the person's mental and emotional states and they should also see a counselor/psychologist all throughout the test period.

The only way to know if a person can "deal" with a disability is for the person to have it. I have BIId, a need to be blind, and I am now legally blind, with very little vision. There are some who have succeeded in creating the disability they needed, and I feel that with support (I had friends by my side) and training in the alternative techniques of the disability, that the person would be fine. I am fully integrated into life as a blind person, and love my blindness. I cannot imagine being sighted anymore, and often have "flashbacks" to my childhood in which I have a long white cane, and have to remind myself that I was not blind when I was young. I am blind, and feel that I have been "re-born" and celebrate my re-birthday as the day I became blind.

Anonymous said...

I was born sighted. I didn't have much fascination with blindness until I was a teen. Tried simming a few times, didn't like it. Put those ideas away until a head injury took my sight. From that point on, I had to adapt. These days, I wear prosthetics (I no longer have eyes). I have grown comfortable in my own skin. Still, there is the wish to be able to see again. Things can get frustrating especially when trying to find that special shirt or the cuff links. Now here I am all these years later and I read braille, use a laptop with jaws and have a half dozen tools for keeping track of things. Its still hard some days, but not as hard as it was at first. btw, my sight loss was caused by a closed head injury suffered during a hit and run accident.