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What a journey it has been!
Written by Mathilda on Sunday, June 17, 2007
Some of you know me already as Claire’s friend whom she came out to earlier. That whole process was pretty amazing, asking questions, learning about BIID, and watching her trust in me grow. We had been friends for a very long time and I had always suspected there was something she needed to tell me, and I am glad she did because it brought us even closer together. No, our story isn’t typical. She told me she had BIID and it never occurred to me to leave or get terribly frightened and shriek at the top of my lungs.
So how did I feel? It was a while back and I don’t remember everything, but mainly I was confused as to why someone would want to be disabled. This was followed by fears that she didn’t see me as me but as a "chair," which she has written about as well.
Since then, we have talked about all kinds of BIID and disability related stuff. We’ve laughed, we’ve cried, we’ve stared at each other in utter confusion and we’ve continued on our merry, unified way. Throughout this process, it has become increasingly clear to me that some of the issues that arise between transabled and disabled people really stem from lack of communication by disabled people about what their real feelings and concerns are about those with transability and what seems to be a general lack of understanding of those issues by transabled people. In an effort to clear up some of the confusion, I offer the following observations.
First, as Claire and I dove deeper into BIID and disability issues, I realized that much of the disabled community (myself included) had strong feelings about BIID because of the positive view of disability that pretenders have. While at first glance it may seem that this is illogical, it really makes sense when you think about how denigrated and ignored the disability experience has been historically. Because we have been put down as people with disabilities, it is difficult for us to immediately accept that someone may actually WANT to be like us. Also, pretenders’ tendency to see so much that’s positive in disability forces us to confront any feelings of shame and inadequacy we may have over our disabilities, which can be a very painful process.
Thirdly, there is often resentment and feelings that those with BIID are just getting the "good" parts of being disabled and can choose not to express their desires in a particular way, whereas disabled people cannot simply not have a certain aspect of disability. These are valid concerns that I feel deserve more attention in the transabled community. Particularly, the idea that transabled people are just getting the "good" parts of being disabled (few intrusions on privacy, no need for assistance with toileting, etc) needs attention. In my discussions with quadriplegic friends, this comes up a great deal as a major reason it is difficult to accept transability. Claire recently pointed out to me that people with BIID who desire to be quads are rare, explaining that it seems that, from a neurological standpoint, it is much more common that the lower part of the body be affected. Perhaps more explanation of this as not a choice or a matter of convenience would help. I do understand that people who have BIID and who use wheelchairs are more rare than those who desire to be amputees, but I am writing about wheelchair users simply because that is what I know best with Claire and Sean, and as a wheelchair user myself. It is in no way intended to mean that one disability or desire for disability is superior to another.
However, I do think that disabled people’s feelings about BIID are similar across disability, and because of this I will be writing more about those feelings and concerns in later posts.
Lastly, I’d like to publicly thank Claire for trusting me with her BIID and taking me on this beautiful, sacred journey and allowing me to move from being the woman who said she would never write about this to actively trying to build bridges between two communities.
What a journey it has been!
[tags]BIID, Wheelchair, Transabled, Disabled, Trust, Pretender[/tags]This entry appears in Mathilda's Thoughts, Other's Thoughts, Thoughts. You can follow any responses to this entry through the RSS 2.0 feed.
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13 Comments
Agreed. My disability is BIID, I didn’t, and don’t, choose that. The need to be physically disabled in a precise way is a follow-on to the mental/emotional condition. I tend to think my life would have been a lot simpler and less stressful without it; but since I never experienced life as a “normal person”, whatever that may be, I have no way of knowing that.
3 On 18 June, 2007, Claire said:
Thanks Mathilda. :o) If I remember correctly, one of your first questions/concerns when I first told you was whether or not I was a devotee. But that’s a whole ‘nuther can o’ worms. :o)
It is true that we only desire the aspects of disability that correspond to our body image. You end up with an “idealized” desired disability. We don’t necessarily want the bad stuff that goes along with it. Some of us refrain from self-injuring because of that. Some of us want relief from the mental anguish of BIID enough that we’d attempt self-injury or advocate surgery as treatment, and take the unpleasant parts of disability as a necessary evil that is still better than living with BIID. Some of us just don’t know enough about the “bad stuff” to have formed an educated opinion on the matter. Even I, who consider myself relatively well informed through close contact with disabled family members my whole life, can still be surprised by yet another aspect of disability that had yet to occur to me.
True, Claire, that was one of my main concerns. From you, I’ve learned more about in general and while I still have some general concerns, they’ve lessened and none are about you, as you know. I think there is so much there from a disability perspective that it is worthy of a post (or several) all by itself. As a matter of fact, when Sean asked me last night what my next post would be on, I thought I might jump in and address devoteeism. I mean, there’s nothing like jumping in with both feet, right? Besides, it is true Mathilda style to operate that way when I’ve made up my mind to commit.
And Brice, thanks for bringing up that the need to be disabled in a precise way is an add-on. I can put that and related things in my post, too. I think it’s good, and concise the way you said it, and something disabled people really need to hear as it takes away our tendency to take that so personally as avoidance of us, as a privilege issue, as a choice issue, as a whole bunch of other things. I’ll definitely add it.
The word I used is “follow-on” not “add-on”. “Follow-on” to me means it comes with the BIID, but is not itself the BIID. I would understand it as expressing a tighter connection than “add-on”, which to me would imply an element of choice that in my experience is entirely absent, either in the BIID condition or the physical expression of it. I did not, and do not, choose this disability. It is just with me, every day.
Sorry Brice, didn’t check the word again before posting and didn’t mean to imply choice.
8 On 18 June, 2007, Eric said:
Mathilda, you mentioned how forgotten the disability community is in this world, and you’re right. It is a fact that the United States would never have elected Franklin D. Roosevelt as President if we’d had TV during that time. He would not have been able to hide his Polio, which he did rather easily, and unfortunately, felt it necessary. I wonder, would we elect a President who is hearing impaired? Blind? Has Tourettes Syndrome, Cerebral Palsy, or MS? Walks with a cane? Bob Dole had a stroke and from that had isolated paralysis. He didn’t stand a chance, and it was plain because of two major factors; not just his disabilities, but also his age (seen as a disability, without a doubt). Look at our friend Stephen Hawkins. He’s a certified genius who needs a computer in order to have a voice. Could he ever be President of any country??? I think the sad answer is no… and what’s so hilarious is that I haven’t considered running for office because I feel too liberal to win! Indeed, it would be my status as a transman with BIID and an affinity for equality that would kill me, long before the people could cast a vote.
How interesting that we seek out those we deem to be perfection, and they always end up being the worst people on earth to do them.
It’s kind of hard to assert something as a fact based only on speculation. And while Stephen Hawking may be an incredible genius when it comes to physics, politics, both domestic and international, are wildly different beasts from the comparatively steady world of the stars and planets (but I see your point).
Mathilda,
I really enjoyed this blog. You hit on a lot of points that I have long been suspicious of, but not able to articulate due in part to lack of evidence. Thanks for writing this!
10 On 18 June, 2007, Eric said:
Rorschach, thanks for the comment. And you’re right, Mr. Hawking may indeed be a horrible person to ever be President of the United States. But I wonder what you consider speculation? The fact that Roosevelt hid his Polio? That we would not have elected him if he lived in today’s society? I am asking for clarification and understanding.
Well it’s persnickety and beyond the scope of TA.org, but…
You said, “It is a fact that the United States would never have elected Franklin D. Roosevelt as President if we’d had TV during that time. He would not have been able to hide his Polio…”
Can you really be sure that FDR wouldn’t have been elected? Can you be sure enough of that to call it a fact? I mean, yes we can certainly infer what may have happened, but to use that as the basis for establishing a fact is a bit bombastic. Fact is a pretty strong word when you really look at it. One that, IMO, is used a bit too lightly all too often.
(ultimately I agree with you though).
12 On 19 June, 2007, Sean said:
I’d rather avoid off-topic discussion guys, if you don’t mind? :) Fascinating as whether or not FDR would have been elected today, it is a discussion best left for private emails :) Thanks
Thanks, Rorschach and Eric. I’m glad you enjoyed it and that I could clear up some things.
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1 On 17 June, 2007, Sean said:
Hey Mathilda! Welcome aboard, and thanks for posting this :)
I think you’re right, one of the major issues is that people with disabilities think we have a choice in the matter. I should blog about how it’s not a choice, and how I “picked” (or rather didn’t) my level of injury.