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Blog > Thoughts > Sean's Thoughts > A response to a correspondent

A response to a correspondent

Written by Sean on Saturday, July 28, 2007

A couple days ago, I received an email from a 25 year old woman who has Cerebral Palsy. She sent me a long email. I took some time to consider my response. When I did respond, the email bounced. It appears she either made a mistake in the email address she provided, or gave me a fake address. Perhaps she’ll come here and see the response. In any case, I think the response is worth publishing. Obviously, I’m not naming names…

The email

Let me give you a little background before I start on the comment portion. I’m 25, female, and I was born with Cerebral Palsy. Luckily, my reasoning skills are intact and I’d say I have 90% use of my hands. Duh, I’m typing. However, muscle weakness, spasticity, inflexibility, and incorrect neurological signals from my brain make it so that I’ll likely never walk as you can. I logged on to this site because I have a friend who claims to have BIID.

I found out about it at 17 when, while over at her house, she allowed me to use her instant messenger. Suddenly an IM popped up to one of her screennames I hadn’t known about.

The person on the other end kept babbling on and about how “strong” and “brave” she was. The bravest thing I’d ever seen her do was try the meatloaf at our highschool cafeteria. I asked him what on EARTH he was talking about. This stranger then proceeded to tell me, piece by piece, MY entire life story, only saying it was hers. I called my friend into the room and she panicked and cried and begged me not to talk to him further. She told me then it was just a “social experiment”. Against her wishes I very clearly told the man exactly how mistaken he was and that she was in no way physically disabled.

Now years later she rides in a wheelchair everwhere she can. She still gives them details of my life as hers and we rarely talk anymore. I hoped maybe this site would help me understand her a bit more, but to be honest, it’s only made me feel worse.

You’ve actually written about how you’d like to “get there”. You can’t possibly know what you’re asking for. And I have great sympathy on one level that you deal with this compulsion. On another level, I can’t help but be angered. You say you want to be disabled, but you speak of fearing causing yourself permanent nerve pain and damage. You want to be paralyzed, but not a quad. Wow, that’s interesting. Why not a quad? Do you fear total helplessness? How about the humiliation that goes along with having no choice in what people do with your body?

I’m not even paralyzed Sean, and you can’t ever know the pain my disability has caused me. Vicious spasms come whether I want them or not. I can try for hours and still never get my foot to move how I want it to. Or…how about being 8 years old, legs broken by surgeons in 8 different places, reset with pins and screws and plates. Scars everywhere, in casts up to my waist for almost a year. And worst of all, it didn’t make me better. And they still had to do surgery a year after that to take out the plates. I’d sit on the porch and cry while I watched my two brothers run and play. My mother would groan and sigh when I’d say I need to go to the bathroom. Everyone around me would say, “Keep trying. I know one day a miracle will happen and you’ll be able to walk.” So I’d try and I’d try…and fail. My family promised me everything in the world if I could just be “normal”. Relationships were hard. Guys would only look at me as some sort of a “racecar” to make engine noises with as they ran down the hall, or just poor little Jenny.

So yes, what you say does make me angry. If there was any way you could have lived with the years of pain and humiliation I have, then I’d say “good, go be disabled!” But you can’t. You got the privelege of knowing what it feel like to run, to jump, to blend in when you choose. I’ll never know. I never have. This is no romantic fantasy life, dear. It’s hard, it hurts, and it never EVER goes away. I won’t be able to stop just because it’s easier to get up and get something if I walk, but you can.

I don’t care if you ever respond. I just hope you read this. But I understand with your mental state, you probably will never truly gt my message. At least, I can say I tried to wake you up to the truth in this.

My response

Thank you for your note.

I understand your anger, believe me, I do. I would be particularly angered at your friend who stole your life, this is an incredible invasion of privacy and breach of trust. I can only say that not all people who have BIID are pond scum like that.

I have read your email several times. The points you make are nothing I have not heard before. I regularly receive email similar to yours. This is not to imply that what you say is of little value. It is to point out I have thought and considered these issues at length.

I suspect that nothing I say will reduce your anger or change your mind, but hopefuly you will be willing to listen to what I have to say with an open mind.

You can’t possibly know what you’re asking for.

Of course, until/unless I become paralysed, I won’t know exactly what it’s like. In a previous post I wrote something that I continue to think is quite true:

“I know what it is like as much as one can possibly know without actually having a disability. Please don’t make the mistake of thinking I couldn’t possibly know what it’s like. To tell me I couldn’t possibly understand shows a certain arrogance, saying “Only I have had the penultimate of this experience.”" ( Open Letter to the Disability Community).

I do know. On many levels. I have been using a wheelchair full time for the last twelve years. I have worked in the independent living movement, with people with all kinds of disabilities. I was married to someone who became paraplegic in a car accident, and who was dealing with chronic pain, from her injury and from arthritis (she passed away a few years ago).

In a way, I also know pain and frustration intimately. My pain and frustration comes from having lived without being paraplegic my whole life, and needing it *bad*.

You say you want to be disabled, but you speak of fearing causing yourself permanent nerve pain and damage.

I’ll take nerve pain, if there’s no way around it. But if it can be avoided/reduced, why not? As for permanent nerve damage, that is what I am after.

You want to be paralyzed, but not a quad. Wow, that’s interesting. Why not a quad?

I have no idea. The thing is, as a very young child, I saw myself with legs that couldn’t feel a thing, and over which I had no control. I didn’t suddenly *chose* that I needed to be a paraplegic. It is simply how I saw myself as a kid. Later on, I realised that the image I had/have of myself “fits” the definition of paraplegia.

Do you fear total helplessness? How about the humiliation that goes along with having no choice in what people do with your body?

No, I do not fear that. Being a quad, even a vent dependent quad, is not what I need to be, but if it was the cards that were given me, I’d deal with it.

I’m not even paralyzed Sean, and you can’t ever know the pain my disability has caused me.

I won’t say that you can’t possibly know the pain MY disability has caused me. Maybe you know. It just so happens that my pain is emotional. I would trade my emotional pain for something tangible like physical pain, right here, and right now.

Everyone around me would say, “Keep trying. I know one day a miracle will happen and you’ll be able to walk.” So I’d try and I’d try…and fail.

Yes. I’ve seen that happen over and over. “You’re not walking because you’re not wanting it hard enough”. Or “you’re not walking because you don’t try hard enough”.

It’s the same thing for me though. In effect, what you’re telling me is that if I were trying harder, or wishing it enough, my BIID could go away. It doesn’t work that way. I have no more control over that part of me, because of my BIID than you have control over your body, because of your CP.

You got the privelege of knowing what it feel like to run, to jump, to blend in when you choose. I’ll never know. I never have.

And every single time I’ve ran, or jumped, I’ve thought “I wish I was paralysed”. MY ENTIRE FUCKING LIFE. Frankly, I don’t give a shit about that privilege. As for blending in… My experiences meant that I never did blend in. I was always different. But the difference was *inside*. It was harder to take, because if you can’t see it, it’s almost as if it doesn’t exist. And if it doesn’t exist, then there’s no reason for you not to fit in, not to “blend in”. And that triggers a crapload of other issues.

I’m not trying to enter into a pissing contest where “my disability is worse than yours”, but I hope you start to see that those of us with BIID aren’t quite as ignorant of what it might be like to live with a physical disability as you seem to think we are.

This is no romantic fantasy life, dear. It’s hard, it hurts, and it never EVER goes away.

Physical disabilities sure as hell aren’t a romantic fantasy life. I never believed it was romantic or glamourous. But BIID is not about romantic fantasy either. It is bloody hard. And it hurts so much that most days I wish I could die. And it never, EVER goes away, it’s there with every breath my body takes. I spoke about that here: It taints everything it touches

But I understand with your mental state, you probably will never truly my message. At least, I can say I tried to wake you up to the truth in this.

And perhaps you are at risk of never seeing what BIID really is, and the impact of it on people’s lives, and that there is no waking up from it, because it is a mental condition just as real as CP is a physical condition from which you can’t wake up.

Further comments

I grow weary of people with disabilities coming to me and lecturing me about how wrong I am, about how wrong we are, to have the feelings we have. I am tired of being told I can’t possibly know what I’m asking for. I believe I have better than a “fair” idea of what I’m after. In fact, I think that I probably have the best idea of what it would be like to be paralysed for anyone who isn’t paralysed.

And even if I’m wrong, even if I am clueless, then, I wouldn’t be much different than newly injured people who didn’t ask for it, would I? And if I came to regret it, well, I’d have to deal.

It’s a bit as if our acquiring impairment means that their experience of disability is cheapened, or made less worthy, somewhow. I’m not sure I get it.

<shrug>

[tags]Disability, CP, Transabled, Physical, Emotional, BIID, Body Integrity Identity Disorder, Paralysed[/tags]

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