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Disclosure Conundrum
Written by Chloe on Wednesday, June 2, 2010
BIID disclosures are filled with trepidation, tears, nervousness, raw emotion, vulnerability, and even terror. Right? Well, not any more; not for me. Guilt and shame get replaced by comfort and confidence. Oddly enough, this brings it’s own disclosure difficulties.
I received an e-mail from a friend saying that he was coming to Salt Lake City for a week-long work related conference. I had not seen him since 1989. He was to arrive on the Sunday, taking the hotel shuttle from the airport. All he had to do was register for the conference and then he would be free for the rest of the day. It was the perfect opportunity to have him over for Sunday dinner. We had lots of catching up to do, and he would get to meet Alicia.
The day has arrived. It’s exciting to contemplate reconnecting with someone I haven’t seen in decades. I already decided on my hot pink outfit, with the skirt coming just above the knee when I’m in the wheelchair. I polish my orthopedic shoes. I want to look nice for the occasion. It will be my standard presentation: wheelchair plus left KAFO. I drive to the hotel determined that BIID disclosure is going to be FUN!
I allow plenty of time because it’s pouring with rain, and I’m not sure how easy the parking situation is going to be. It turns out that I’m allowed to park right outside the main entrance while I go meet my friend in the lobby. I have no idea if I’m being given a special privilege because I’m obviously disabled. There’s a substantial flight of stairs up to the entrance, and no ramp in sight. I ask and am directed to another entrance where there is an elevator.
I’m fifteen minutes early, so I call my friend’s cell phone from the lobby. He says he’ll be right down. We recognise each other immediately despite the twenty one years. It doesn’t take more than a few seconds for the inevitable question "What’s with the wheelchair?" I don’t want to get into it as our very first topic of conversation, so I say "It’s a long story. I’ll tell you in the car."
"I like being in a wheelchair. It makes me feel more comfortable. It fits my self image." I smile affably. He seems to accept all this. So far so good. "When was your accident?" Shit! He hasn’t been taking it in. I SO want to say "There was no accident. I just like being in the wheelchair." But I’m determined to tell no lies. "How long have you been using a wheelchair?" Aha! I have an escape route. I tell him about wrecking my car last July and that I’ve been using a wheelchair since then. I descibe my injuries: concussion, torn rotator cuff, cuts and bruises; nothing that would warrant using a wheelchair.
"So there was a previous accident." Shit! How could this be going so badly? I want to tell him about BIID, not about my accidents. I’m not going to lie to him though, so I tell him about the skiing accident. He wants to know the details, so I tell him how it happened, why there’s nerve damage to the left leg but not the right leg. This isn’t going well. All these little things that are so convenient when I don’t want to tell someone about BIID are working against me now. "Do you still ski?" "Oh yes, no problem." I breathe a big sigh of relief that he must surely get it now. But then I suddenly realise that I’ve started lying. Shit! I DO have problems skiing, and it’s precisely because of the nerve damage.
He asks whether I’ve done adaptive skiing (that’s not exactly how he phrased it, but I don’t remember the precise wording). I’m relieved that I have a way out of the lie. I didn’t have problems with the adaptive skiing. I tell him about the adaptive skiing lesson I had this year, and immediately realise I am completely blowing it in terms of getting BIID across. I’d be lying if I said I had no physical reason to do adaptive skiing. Urgh! I change the subject.
We arrive at our house, and I take the opportunity to demonstrate that I can walk just fine, carrying wheelchair parts up the steps to the front door. He carries the other parts. Except… All I’ve demonstrated is that I need a leg brace in order to walk!
At a lull in the conversation over dinner, I remark to Alicia "I don’t think he believes me about why I’m using a wheelchair." She takes the pleading hint and begins a discourse about my BIID. "She feels much more confident in a wheelchair. It reflects her self image." After a while my friend seems to be getting it and comments "That makes sense. I’d believe anything of Chloe." I’m relieved that the point has been made, the truth has been told, it’s no big deal, and we can move on without belaboring the issue.
The topic doesn’t come up again until he and I are about to leave for his hotel at the end of the evening. He remarks "So, do you need a lot of physiotherapy?" Alicia and I glance at each other and can’t help but burst out laughing. Neither of us can believe that he really didn’t get the BIID thing after all. I smile and say "No, I don’t need any physiotherapy at all." I leave it at that. I don’t want to ram BIID down someone’s throat if they don’t want to believe it.
So… I failed miserably at explaining my BIID. It’s not the first time it’s happened. I think I have two problems. When I used to be all tearful and serious about it, people took me seriously. Now that I approach the topic of BIID with both confidence and levity, people think I’m just kidding around. I put this by Alicia. Her comment was that during BIID disclosures two years ago I was literally shaking with emotion. That has completely gone.
The other problem is my real injury. I said nothing at all about sensory loss, muscle spasms, incontinence, back pain or monoparesis. But I admitted to a skiing accident and a car accident. I admitted to a minor spinal cord injury, and I admitted to an adaptive skiing lesson. Apparently that can already be WAY too much for someone to take BIID seriously. All that stuff is extremely convenient if I don’t wan’t to say anything about BIID. But when I’m trying to be open and honest about BIID, it just makes it confusing. I feel this is all topsy turvy. I’m trying to find a good way to convince people that I’m NOT physically disabled, but that I DO have BIID. However, I want to maintain honesty at the same time. It’s not so easy.
Sometimes analogous issues come up when I’m trying to tell someone about being intersexed. People seem to believe what they see and experience, rather than what you tell them. If it happens to come up in conversation I’ll say something along the lines of "Actually I’m intersexed." They might respond something like "What do you mean? You’re not really a woman?" And I’ll reply "No, I really AM a woman. I’m an intersexed woman." Then they’ll decide that I’m like any other woman (especially if they see me naked) and the stuff about being intersexed was just some entertaining crap I invented.
It’s the same set of problems as with disclosing BIID. I happen to think that being a hermaphrodite is inherently amusing. I also happen to be very comfortable with telling people about it. So sometimes they find it difficult to take it seriously. People often see "hermaphrodite" and "woman" as mutually exclusive categories. Wrong! People often see "person with a disability" and "person with BIID" as mutually exclusive categories. Wrong!
The upside to all this is that if you believe in your heart that you ARE a woman, and you look and act like one, then to the rest of the world you are indeed a woman. Likewise, if you believe in your heart that you ARE physically disabled, and you use a wheelchair and behave as if paralysed, then to the rest of the world you are indeed disabled.
I’d still like to find a good way of unambiguously getting across to people that I have BIID, and what it’s like having it.
Tags: Accident, BIID, Disabled, Disclosure, Honesty, Injuries, KAFO, Leg Brace, Paralysis, Skiing, Wheelchair
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18 Comments
@Gordo: Are you willing to share your method with us? As you can see, I am in need of a few suggestions.
@Rhayven: In my opinion you absolutely hit the nail on the head by saying “people need to grow up”. I’m not claiming to be a stellar example in this. For decades I believed that ALL men actually wanted to be women. To imagine a man who was comfortable being a man just made no sense at all to me. I assumed that men who claimed to be happy with their status quo were lying, or pretending, or making the best of a bad situation, etc. It was not until I started talking with many female to male transsexuals that I finally got it. I had been guilty of exactly the same thinking error as those who imagine that ALL people with disabilities want to be able bodied. The ability to stand on another’s porch, and recognise that there is no reason for everybody else to be like you, is indeed a matter of growing up. Some people get there sooner than others. It took me quite a while.
I’m sorry you are putting up with people who try to make you feel bad about yourself. Just remember that the reality behind those who do that is that they are actually feeling bad about themselves, and are desperately trying to feel better by putting others down. Again; I know. I know because I am ashamed to admit that I have been there.
No, you are not a bad or horrible person. One of the precious functions of this website is that we get to know others who are in a similar situation. We get to see what beautiful people they are. Your honesty and vulnerability says it all.
You’re not the only one who thinks too fondly of people. Alicia and I were discussing this a couple of days ago in connection with my procrastination over finding a new job. Experience has taught me to be terrified of office politics. I automatically trust everybody and see only the good in them. In the corporate world this can be disastrous. There are people who seek wealth and power at the expense of others. I used to feel bitterness, but now I truly feel sorry for such as these. From my perspective they are depriving themselves of a meaningful life.
I told my mom about my BIID today. And it went … Well.
Like, really well. I even told her about how when I get my own place I’ll probably start wheeling. And she had nothing negative to say about it. In fact – she encouraged it.
Shes very understanding of things. She knows my wants to be a female. She now knows my wants to be paralyzed.
And I explained to her my symptoms that I told you about Chloe, and she actually said it -could- be MS. Though, there was a small chance considering its affecting both sides of my body … MS apparently usually effects one Side. Which, I dont understand but meh … I do know that its progessively getting worse and its not like I can get into a hospital to have it checked out =/ A cat scan + mri which is manditory for this kind of thing … A cat scan alone is 3,000 dollars =/ Sucks balls >_< So I probably wont have it looked at till I wake up one day and collapse because my legs are too weak to support me *Shrugs*
Thanks Gordo. That sounds like it should work very well for you. I don’t have the advantage of being a creative writer. Oh well.
Rhayven; It’s wonderful your mom is accepting of who you are. That’s worth celebrating.
I can’t pretend to know much about MS. I just know about the experience of my close friend who has had it for 18 years. It seems to affect both of his legs equally. It also affects his vision though. From my point of view the worst part about it is what he describes as chunks of his memory going missing. That I think I would find very frustrating to deal with.
You know Chloe, that wouldn’t bother me at all.
Due to past issues, I have large chunks of memory just completely missing. I’ll go to bed on tuesday and “wake up” on friday some weeks. Its fairly annoying. But … I’m so used to it its just like “Oh its friday? wasn’t it just tuesday?” and go on with my day.
I dont think I’d mind having MS. Itd just be ironic is all.
8 On 3 June, 2010, Phil said:
I haven’t told a lot of people about my BIID by now. When I did, I said something like:
“I must tell you something.” People notice that it is not easy for me.
“You know transsexuals. I have something a bit similar. BIID. That means … And then I explain what it means and that in my case it is the desire that I have both legs amputated, that I feel the lines through my thighs, that I have been tested as “normal” by many psychologists and psychiatrists, that I have taken part in research, what hypotheses they have etc.
Often I forget saying how I suffer from it.
I think I would do it similarly next time. But there is no method. Everybody is different, and it has to fit into the situation.
Good luck to all who come out.
Heh – I explain Intersexualism similarly. Most people dont get it, some do. Its honestly easier to just say I’m a trannie.
I find it easy to talk about BIID with -some- friends, but a lot of them just dont want to understand. I’ve only told my mom, as far as family goes. I’m reluctant to tell my dad … And the rest of the family? I dont know if they know or not … I’ve defidintly hinted at it. I think Kevin would take it lightly. But …
My mom was very understanding, but then again she usually is with much of anything, really.
I’m a bit reluctant to make reference to gender issues. What am I going to say? “You know how I wanted my genitalia chopped around a bit. Well now I want some extra chopping done.” Without me connecting the two at all, some of my friends have voiced concern that I might have an insatiable body modification syndrome. What will come after the paraplegia?
Rhayven, you’re right about more people being familiar with trannies than with intersex conditions. It’s getting there though. My favorite sitcom is “Two and a Half Men”. We were recently watching an episode which made reference to a hermaphrodite with her vestigial penis. Alicia and I thought it was hilarious. Somehow, it is now a matter of giggles for me to recall the times I had to disclose about my vestigial penis before bedding. Actually my favorite episode is “An Old Flame with a New Wick”, but I won’t give away the plot.
This one girl … I dont know if she likes me or not. Like … I’m kind of worried about but thats a different story.
She knows that I want to be a girl. she doens’t know I AM a girl with just underdeveloped genitalia. SO whenever she walks on me with anything down >_> I get really embarrassed.
Like … I’m just .. I’m super embarrassed about my genitalia … Just … Yeah …
And Some people dont understand. But I can joke about it a lot. And I do. I joke with my bisexual and lesbian friends about how much fun we’re gonna have after I get my vagina “installed” XD >_< Sorry sean if this is a bit explicit O_O;;
Anyways. Intersexed issues … they can almost be corresponded with BIID y’know? Body image not matching … Blahh. Its just a bit different, no? I mean … All In all.
12 On 3 June, 2010, Phil said:
This might not be the proper place for this topic, but I have to ask something:
I have got the impression that an astonishing number of us people with BIID are either gay or lesbian or inter- or transsexual or are in another way not living out their sexuality (or haven’t found their – sexual – bodily – place in life in younger years).
Could BIID be a symptom that we had to cut something off, that we had (have) to paralyze a part of ourselves, in order to fit in, in order to survive?
In the years during and after my coming-out (as a gay man), BIID played nearly no role in my life. I felt free and had not many obligations.
Somebody wrote in the forum of biid-dach.org that when he has a sexually and emotionally really fulfilling relationship, then BIID is low or not there.
Has anybody else made a similar experience?
Phil, I have had 3 very sexually and emotionally fulfilling relationships. They did not in any way reduce my BIID. Two, in fact, increased it. The relationships are bound to work even better if you are happy with your body.
I think Gordo is wise to hang back until he is the way he needs to be. That way he has no excuses to make and his girl will love him for how he is.
Well, intersexualism is hermaphrdites. Just another word and all. Intersexed is a more proper term.
As far as relationship status goes – It doesn’t really ease it any for me.
I’m (I forget the term but) Essentially an Asexual Lesbian. I dont desire it in the least and all, and wanting to be in a relationship actually increases my BIID.
Its more or less a fear. Will she accept me? How will she take it? What if I start wheeling full time around her? What if I somehow manage to paralyze myself while in a relationship with her?
Its many thoughts floating around.
It does seem that there might be more people having both BIID and sexual orientation/gender issues than one might expect by chance. However this does not imply any causal relationship between the two. My take on it is that both sets of issues require coming out to oneself in order to be visible. This requires introspection and self awareness. Thus people who are more introspective are more likely to be aware of both BIID issues and GLBT issues in themselves. People who are less introspective may be aware of neither. Therefore people who are aware of their BIID are also more likely to be aware of their GLBT issues IF they have both; and vice versa. Consequently the appearance of one will increase the probability of the appearance of the other even without any causal relationship.
My latest face to face disclosure to a friend, today, was absurdly easy in part because I had forgotten that I had NOT already told her. We were chatting about relationships and sex, and she asked about my orgasms. I told her that I avoided them on account of wanting to be paraplegic. She looked surprised. “Oh!”, I said, “I didn’t tell you that’s why I like being in a wheelchair?” Apparently I hadn’t. She asked me why I wanted to be paraplegic. I said I’ve always wanted to be paraplegic. This all seemed to make sense to her, but I could tell she thought it was a little strange. I added that there are lots of other people like me, who want to be paraplegic. This seemed to satisfy her curiosity and we moved on to other matters. Absolutely no problems there.
I just disclosed about BIID to my most recent IRL close friend. We were having a self-disclosure fest, each coming up with things that we generally don’t tell people. Eventually it had to get to the BIID. Her immediate response: “Well that’s totally normal. It’s just like wanting curly hair if you have straight hair.” Wow!
Today happens to be the birthday of the wife of the friend I refer to in the original post. I just called her to wish her happy birthday. We had a nice long chat, giggling a lot as we always do. She’s the first person I ever told about being intersexed, so I consider her to be a close friend even though we seldom communicate and I haven’t seen her in decades.
At some point she asked if I was still in a wheelchair, so I immediately explained about BIID. She had absolutely no problem accepting and understanding it. We both thought it was hilarious that her husband had come home with some story about me breaking my leg, even though I had also been explicit with him about BIID when he had visited last year.
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1 On 2 June, 2010, Rhayven said:
I have yet to tell anyone other than a few friends about my BIID. A lot of them take it differently. One of them went as far as to call me “fucking retarded” saying that “he knows people who are stuck in a wheelchair and would give anything to be able to walk again”
Is it so bad that I dont want to be able to use my legs? TO be paralyzed? Is that so bad?
Why does that make me a bad person? Why does altering my body image to that extreme make me horrible Chloe?
I think people need to grow up. This same “friend” also said that Sexual Reasignment/Reconstruction surgery is “cosmetic” and therefore “uneeded” “idiotic to get”. He doesn’t understand at all and yet he wants to be a sociologist >_> Wants to work with people or at least study mental health issues. And yet this is how he approaches things …
*sighs* I guess I just think too fondly of people. I always tend to see the good and then it blows up in my face and then I feel nothing but bitterness. Has this ever happened to you?