Luck on wheels

[wheelieterp]

Today, The Ruling Reddcub and I had the great pleasure of having lunch with two amazing women, each a PhD involved in Disabilities Studies. It was my first experience having a conversation about these issues, in live time, in person, with other Disabled people.

I feel liberated. I can't find another way of putting it. I am excited. I am validated. I feel as if I have had this voice, this need to say things eloquently; to paint a clear picture of the anecdotes of an experience, and until now, have had no experiences worthy of the use of this voice. It's like I have the ability to play an amazing and captivating instrument, and now somebody just handed me sheet music.

It is a question of identity, yes, but it is also a question of passion.

The Ruling Reddcub asked me today, after this lunch, to explain in more detail why I tell the following story:

I had an experience recently with a person who was convinced that if I ate right, exercised, visualized, whatever, that I could, one day, miraculously walk again!. I could not make him understand that I was not focused on the idea of walking again. He was stunned and asked me "Don't you want to get better?"

"Of course I do," I replied, "I want to be a better interpreter. I want to be nicer. I want to have more patience. I want to be a better boy friend, a better writer, a better human being. But to me, better does not have to mean walking."

This person is a wonderful man; caring, compassionate, open to new ideas. Really a top notch person. I don't want to paint a picture of an oppressive bastard, or a clueless do-gooder who oppresses with a smile. This is a good person. I want you, dear reader, to understand that before I tell you that this person was "Concerned about my apathy."

I had the great privilege to point out that it is not apathy; being happy with who I am is the most active thing I know how to do.

The boy wanted to know if, given the choice, I would opt to actually not be Disabled. His perspective as the partner of a person in a chair, a witness to my daily struggles with barriers of both the physical variety as well as the more insidious social varieties lead him to be puzzled by my insistence that given the choice, I might just opt to stay Disabled.

The difference between him and those that don't "Get it" was that all I had to do was point out the fact of this passion I have found. He sees that it is a product of the changed perspective and there is not much more need to qualify the value of it. He is also willing to not only hear me when I challenge him on the reasoning behind the question, he also gets it when I say that I think there should be room in this society for it to be ok for people to say "No, I would not choose to walk again."

I am a lucky man.

Comments

I loved reading this...

[evilmommytina.livejournal.com]

in fact, I now recognize in myself some of that same insisting that others see things my way - or some other way.

Thanks for the reminder that I need to continue to work on accepting people, at their word, and honoring their position.

Love, Tina

Re: I loved reading this...

[dodgingwndshlds.livejournal.com]

Exactly! One of the things I have learned from my new vantage point is that everything someone says, every position they take, every opinion is surrounded by a life time's worth of experiences and context to which I have no access.

One of the things that gives me great joy is my process of working on identifying my assumptions and allowing people to be who they are, in spite of said assumptions of mine!

Thanks, Tina. Your comments on my journal, and your journal itself, always brighten my days!

[fogbear.livejournal.com]

Thanks, Bug...It reminds me of the people who wondered, back when I came out, whether I would be "straight" if I could. Not really analogous, of course, but appropriate nonetheless.

[dodgingwndshlds.livejournal.com]

Actually, I think it is extremely analogous. They both are fundamental issues of identity, they both are viewed at best as "Different" and at worst as "Deviant," and both communities face actual, tangible, daily oppression from the dominant culture.

Asking a Queer or Gay or Lesbian person if they would choose to be straight if they could either implies that there is something wrong with being the way they are, or, at least, puts the burden of society's negative opinion of their sexuality back on them. It's the "I don't think there is anything wrong with being_____, but your life is going to be so hard! Wouldn't you rather be normal, straight, able-bodied, whatever?" Rather than asking "Your life is so hard because of the oppressive paradigm of the dominant culture. What can I do to help change that paradigm?"

[fogbear.livejournal.com]

Point taken, and completely agreed, but I'm left with one nagging difference. I don't believe any enlightened person would wish for a treatment/cure for homosexuality. I not sure the same could be said for MS. Yes, I know, hoping for a cure is a separate matter from being at peace with one's current circumstance. And I know that the analogous issue a huge issue in the deaf community. But that's what stopped me from saying that it's more than somewhat analogous.

Any more hairs we can split?

[dodgingwndshlds.livejournal.com]

Ah yes.... But I see my illness and my Disability as separate issues.... You are right, I would wish to be cured of my illness.

[geargail.livejournal.com]

This must of been an experience, watching someone realize what is most important vs. non-essencial. Humans are funny that way... thinking that some pill or some technology will stop the process of aging, or some other kind of issue.

In the process... I would watch Michael suffer from his problems.

Some choices, such as going to a Chiropractor - helped in ways, where I was able to take a 50 block walk, to some city park... while on the invalid scooter.

I wouldn't of guess...

Once you see someone every day - who goes through this stuff, it's easy to guess that their impression of what is a good day or a bad day, variates.

T.G.

[thirdworld.livejournal.com]

I've heard stances like this taken before, particularly from the deaf community. They seem to have one of the strongest disabled communities, and some would argue the strongest because they have their own language. Getting to hear would change everything for them, most particularly the way they express themselves and communicate. At the same time, when that question is asked, it does seem like most would rather lose their disability, but a study on this subject would be most intriguing.

As an aside, agrathea pointed me to a video about reprogramming the brain to allow one sense to substitute for another, so with this and other advances, the hope is that many will get the choice, regardless of what they decide.

[dodgingwndshlds.livejournal.com]

As you may (or may not) be aware, I am an ASL/English (and occasionally ASL/Spanish) interpreter, and have been for almost 20 years. I have met a few people who would change their circumstances of they could... Both Deaf and other Disabled folks...But, upon further conversation, what most people that I have talked to agree on is that what they really want is to have the barriers that prevent them from being who they are in society removed.

We all want to like ourselves. The question of "Would you choose to Lose your Disability?" itself is loaded with implications that something is wrong with them. I think a better, more interesting thing to study would be how to shift society's paradigm in order to allow for differences and variations more comfortably.