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Sometimes, People Just Don’t Get It

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Written by Sean on Friday, December 11, 2009

I recently received an email from the girlfriend of someone who has BIID. She was at a loss and confused, and was asking for my opinion. I am very glad she did. However, I just could not get through. It saddens me.

This guy had admitted to his girlfriend that he has BIID, and wanted to get and use a wheelchair. Apparently a fairly big row ensued. Later on, he went to her and told her he’d give up BIID to be with her. It is at that point she contacted me for advice.

I explained to her, as neutrally and clearly as I could, that BIID is a genuine condition with neurological elements to it. That it is not possible to just "give it up". We exchanged several emails along those lines.

It was evident to me that she was unable to accept his desire to use a wheelchair. I asked questions to make her consider where her barrier to accepting it was. But she didn’t budge, she remained at the "I can’t accept this" stage.

I explained to her the cycle of BIID. That her boyfriend might genuinely think he can ignore/repress BIID, but in the long run, it’ll likely just make things worse. I pointed out to her that he must love and trust her a lot by having told her in the first place, and to have her react badly was likely a blow to his self-confidence.

We left it at that. He’s "giving up BIID" for her, and she’s happy.

Where’s the compromise in there? Where’s the give-and-take of a healthy relationship? I don’t see it. Feels like she got her way, only because of her own inability to open her mind and question her own prejudice. Not good at all.

From the little I’d heard of the guy, he reminded me very much of myself in a prior relationship, where I was just becoming aware that I was not the only one feeling that way. I remember telling my girlfriend at the time that "I’d never ask her to go to the mall with me in my wheelchair". I thought I’d be content to just putter around my computer desk in a wheelchair. I honestly thought that. I was wrong, of course.

Perhaps these folks have to go through the same experiences to learn themselves. Saddens me, I wish I could avoid them heartache.

 

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13 Comments

1 On 11 December, 2009, justann said:

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I really don’t understand why some people have such a problem with it. :( I am very grateful for my understanding partner.

But I don’t think we yet know enough about BIID to say for sure that no-one who has it is able to ‘give it up’. There just hasn’t been the research.

Personally I think I could give up all outward manifestations of BIID without damaging myself (though if I had a partner who demanded I did, I’d be questioning whether someone so intolerant was right for me). And maybe with the right kind of therapy I could stop feeling this way too. We just don’t know, because no-one’s done the research.

 

2 On 11 December, 2009, Phil said:

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Of course we don’t know FOR CERTAIN, but we also know not nothing.

I have never heard of anybody who was able to “give it up”. Just to tolerate or decide for a life with suffering but no disability of the body. I also know people who were married and had children and only after 25 years they finally couldn’t stand it any longer and started to live their gay side.

Life offers a lot of options. And (most) often only after a decision one can know what it is like.

I can understand the partner who cannot understand BIID. I don’t understand my own BIID, I don’t understand myself. But when we are honest to ourselves and each other, we have to admit, that we never really do understand ourselves…

It takes time to get acquainted with the thought that one’s partner has such a problem/disability/dis-ease. The best the couple can do is when they give each other the time.

And if the guy is able to push his BIID aside for some time: lucky him!

Sean wrote: “Perhaps these folks have to go through the same experiences to learn themselves.” I guess this is true for everything. Somebody who isn’t gay and hasn’t had to overcome all the conventions and rejection and struggle won’t understand what it means to be gay in our society. Somebody who never experienced depression cannot really know what it’s like. That’s why I think that the best doctors and therapists are those who have had to overcome diseases and problems themselves.

Suffering makes us grow, as sad as it is. Not all kinds of suffering, though, and it additionally requires a certain attitude to learn.

My therapist recently attended a seminar. In a break, she asked some other participants, among them a meditation teacher and a psychiatrist, if they had ever heard about BIID. Nobody had. She explained. The “professionals” said they couldn’t understand; the psychiatrist said she couldn’t work with such a patient; and it were against nature… The only one who showed some understanding was a man who had suffered a severe mental disease and had gone through something very hard. He said that he knew some transsexual persons and that BIID was a bit similar. But of these transsexuals, after surgery most were not happy…

Written sitting in my wheelchair… (which I do very seldom).

 

3 On 11 December, 2009, Chloe said:

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I’ve said it before: “This above all; to thine own self be true”. How can one settle for someone loving the you that you know is not you? Then you are not loved, right? I don’t gloss over the fear and insecurity and heartache. Perhaps it is a journey that all must take. It may not be easy to be oneself, but it is worth it.

 

4 On 11 December, 2009, Elisabeth said:

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BIID will manifest itself one way or another. It just doesn’t go away as experiences of people on this website confirm. We either will live our BIID or we will suffer from our BIID. We might find some coping mechanism but depression will be our faithful companion in one form or another.

When I share my BIID with others, I don’t expect them to understand. There is very little to understand, as
Phil says. I hope for their acceptance of me as I am, I give them my trust and hope for respect. And as respect and acceptance are necessary ingredients of love and friendship, we need to learn to respect ourselves and move on when that respect is not given.

But heck it is hard. And it’s hard to see somebody going through what we have gone through and not to be able to help. Your guy, Sean, will have to accept himself first, respect himself, love himself, really. And that’s probably one of the hardest things we ever have to learn.

 

5 On 11 December, 2009, Phil said:

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“How can one settle for someone loving the you that you know is not you?”

I am I, with or without legs. The girl knows that her guy has BIID. So she does know him. He would be the same man, but maybe happier and even more able to love her if his BIID wish was fulfilled.

Give them time.

 

6 On 11 December, 2009, Chloe said:

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I have seen people pretend to be a gender that is different from the gender they know themselves to be. Okay, I’ve done it myself. My observation has been that when they do this to please their partner, it makes neither their partner nor themselves happy. Pretending to be able bodied for the sake of one’s partner, when one knows that one is not supposed to be that way, would appear to be analogous.

I think Elisabeth got it exactly right. Self acceptance, self respect, and self love come first. And yes, it’s really hard. After that, one can love another and seek their love not out of desperation and insecurity, but as a pure gift.

 

7 On 11 December, 2009, Peter said:

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She knows he has BIID but maybe he didn’t tell her right from the start. I have always told my partners (3 to date) right at the start. It wasn’t called BIID at the time so I just said “I wear leg braces quite often”. So then comes the first question once in bed… “So where are your braces?” -”Oh, I don’t need them in bed”. They all got it!

But now I’ve decided to get a leg paralysed, I’m hearing “I’d find that hard to accept”.

He’s very accepting of the chair and we go places together with me wheeling but he’s also quite embarrased by it and hides it when we have visitors! This is ridiculous as we have a perfect reason for the chair. We work in film and video and the chair is great for fast moving shots – it beats spending hours laying dolly tracks. So you see, spouses can be accepting but maybe they just have hangups like “What will other people think?”

If there’s *real* love between them, this hangup is overcomable (is that english?) surmountable.

 

8 On 11 December, 2009, Sandy said:

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You are all right. I must admit that it does not go away just like this. Back here after almost a year of abstinence.

 

9 On 12 December, 2009, Phil said:

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Peter, you are pointing to something we should discuss a bit more.

Our partners might be a bit ashamed about us. They have the same fear of reactions of others to BIID and disabilities which we have/had, but they don’t have the desperation that helps to overcome these fears. “What will other people think?”

Maybe also surgeons and other health professionals would be open to help us, but they fear the reactions of their peers. “What will other people think?”

And I myself am not really certain how much of the “counterweights” that I have in my mind are my own wishes, values, thoughts and feelings and how much of them is “what will other people think?”.

And that doesn’t only apply to BIID… “What will other people think?” has too much power, I think.

 

10 On 12 December, 2009, Chloe said:

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It seems that one might dissect the problems partners have into several different issues. They could have hang ups about disability per se; the whole idea making them uncomfortable. On the other hand, they could be fine with a physical disability but not with a mental disability. Then there’s the separate issue of how honest one has been with one’s partner. Is there a breach of trust? In addition, different people have differing amounts of concern over what other people think of them. And is it really about what other people are thinking, or just paranoid imaginings? I think if a partner has a problem with BIID, it would be good to find out exactly what is the core issue.

I’m a bit confused as to why a partner would feel ashamed or embarrassed to be seen with someone in a wheelchair. Alicia’s perception is exactly the opposite. She feels that people hold her in higher regard because she is accompanying someone with a disability. She has encouraged me to use leg braces or a wheelchair in public with her from the beginning.

Like Peter, I have decided to get a leg paralysed. This was arrived at through intensive discussion between Alicia and myself. We are in complete agreement that, while it may not be enough in the long term, it is something we can be sure will not cause any regrets. It is something I will be very happy about, and avoids the risks entailed with skiing off cliffs.

The point I am making is to talk to your partner. Talk a lot.

 

11 On 12 December, 2009, Peter said:

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Phil, I don’t think my partner is ashamed of what I do. He’s like me, cannot tell a lie very well. Anyway when he hides my chair I don’t complain but then I’m being a bit like Sean’s friend’s partner – trying to hold onto him.

Absolutely right Chloe, we must talk – a lot.

 

12 On 12 December, 2009, Sean said:

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Wow! Good conversation folks! :)

I think the only thing I ought to add here is that there’s a difference between *understanding*, and *accepting*. You’ve talked about understanding a fair bit. I also share the opinion that as I don’t really understand BIID, we shouldn’t expect our partners to do so themselves.

But one doesn’t need to understand something to be able to accept it.

 

13 On 12 December, 2009, Phil said:

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Dear Chloe, your Alicia is an extraordinary person. Lucky you!

“She feels that people hold her in higher regard because she is accompanying someone with a disability.”

This does good, but on the other hand it is not what I would really want. Neither a negative nor a positive bias towards people with impairments. Just a natural accepting of all kinds of human beings and ways to live one’s life, as long as nobody else is hurt. That would be my ideal.

I know I am naive ;-)

 

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About Sean

Sean is transabled. His body image is that of an L2 paraplegic. He has been living pretty much 100% of his public life from a wheelchair for the last decade, but hasn't found peace of mind (and is unlikely to until he does become a para).