How do devs feel about a 'cure' for paralysis?

[dr332]

With all the recent news stories of bionic suits, mind controlled prosthetics and cures for paralysis, I was just wondering how devs feel about all this?

Is it wrong that I find the thought of a 'cure' (or anything similar) rather depressing?

[Deleted]

Interesting question that I have thought about it myself. Ultimately I think it will be a fantastic thing, even just generally in terms of the medical world and advancements. I once watched a programme with my hubby about a kid who had to face years of painful operations so that they could walk. The child was resistant because of the pain involved. I cannot remember what their illness was. Anyway, I turned and said to Hubby, that if it was so bad, surely being in a wheelchair or enormous pain, on balance surely being in a wheelchair was not such a terrible option. He told me that he would do anything, any painful operation if he could walk unassisted and that it was right that the parents were pushing So that conversation has stuck with me, I can see how much it means to him and so if there was something that could help, "cure", improve his situation I would be so jubilant for him. I think the dev part of me takes a back seat in this matter, and I am talking about the back seat of a really long bus if not train. Dev feelings can easily be conjured within my imagination with the help of films and books. Even when there is a cure, there will always be the films and books and my imagination.

[janewheeler]

I'd have to agree -- I'd be all for something that could cure paralysis or make it easier to deal with.

I find confidence much sexier than something external about the way someone looks or does something. If a medical or technological advance could make someone feel better about themselves and the way they live, that would probably have a pretty huge impact on the way they interact with other people.

But by the same token, if a person with paralysis decides that the hassle isn't worth it, they've probably got enough confidence to go through life in a way that would appeal to me, too

[Peony]

So... for the record, I'd be pretty over the moon if there was "A Cure", I have to say. My sexual preferences are definitely not more important than someone's quality of life.

But my cynical side is always pretty jaded by the idea...not from an attraction or dev aspect, but because so many medical discoveries are so sensationalised (poor choice of word, I know ). For a start, I work in a technical role, and even among technical journalists, sooooo much gets reported incorrectly, from details to whole jists. I imagine it's a similar case in health reporting too (but could also be incredibly wrong on that!).

Also...there are so many injuries and conditions that wouldn't even begin to benefit from new techniques. And even ones that do would all do so at completely different rates depending on the person. I did hear that mice had had SCIs of up to 2 years old repaired...still totally amazing, but no mention of how complete...I imagine the injuries were surgical instead of the messy f*cked up ones people actually get...yadda yadda yadda.

Anyway. I totally didn't mean to rain on anyone's parade, and I am definitely not up on medical research other than listening to the news...apologies if I don't know what I'm talking about!

[brace4impact]

I can't speak for devs, but as a disabled guy, I have my reservations on cures for my disability. First off, I don't want to rush to some experimental cure that ends up making things much worse. Second, I don't want someone else to suffer in order for me to be cured. And third; if insurance doesn't cover it, could be very costly. So relax devs, I'll still be gimpy for a while

[Enid]

I've been thinking about this lately. One of the most significant changes that meeting guys with SCIs has brought to me is how I feel about this topic. If you had asked a year ago, I would have said I wanted a cure, but compared to how much I'd like it to happen now it feels like it was a huge lie.

I don't know if it'll happen, I'm not particularly worried about it either. I'm fine with how things are now, I don't want it for myself. And the risks of experimental treatments are pretty scary. But yeah...

[janewheeler]

The hesitation about a "cure" is well-founded. The place I work is tangentially connected to some researchers who have publicized various discoveries about stem cells, etc. Every time another discovery is announced, anywhere, people call us and ask, "What about your people? They do stuff that's kind of like this; couldn't they do this for my cousin/husband/friend? He has a great attitude! He never gives up!"

We have nothing to say to them, aside from forwarding their info on to a lab that will probably never meet them. Even if this research made it to a point where you could see demonstrable results in humans, it'd probably take at least another 10 years of refinement before the year or two of implementation, therapy and recovery.

Hope is a tricky thing, isn't it?

But at the same time, we've also seen research that helps people with quadriplegia gain control over the world around them, or helps people with Parkinson's manage their movements. And then there's the kind of research that makes the kind of helper gadgets that people with less severe impairments can use to make things easier, which is much more accessible (no pun intended!) to disabled and AB people alike.

Research on cures and recovery shouldn't be halted or slowed down by any means. But I feel like I've seen the biggest day-to-day impact in improving the quality of life by other means. It's not a cure, but it's the kind of realistic rehabilitation that can give people way more agency in the trajectory of their lives.

[vancityippy]

Hey, dr332
Have you ever been with a person with SCI? or had friends or anything like that?

I'm just curious because, from afar...if you don't know any disabled people, and you just see a hot guy in a chair around here and there...You might think, hey! what's wrong with that? He's cute!

But if you actually talk with someone about what it's like to lose the use of their body, and deal with the crap that comes along with SCI...your perspective totally shifts.

I remember asking a quad I dated "what positive things have come from this" (expecting that he had some enlightened experience and was now a better person...blah, blah)
He looked at me like I had two heads and explained what it had been like and it was heart breaking...ever since that moment, I have fantasies about a cure

[faith]

I have been in a SCI relationship for some time now (and the happiest I have ever been in my entire life!!!) and, absolutely, without ANY reservation, I would do anything for a cure.

I would give up almost anything to make it happen... to make his life easier, better, fuller, richer....

I would feel the same about him and I don't think our relationship would change... except we'd be able to experience so many different things that we do now.

With that said... I love my guy exactly as he is and am 100% happy just like this.

So, ya, if one of you were chosen for a study for a cure, I'd be cheering you on and help you out any way I could.

I would never place my sexual preference above improvement in another's life....

[Deleted]

I love your response faith x

[Pony]

Vancity's response is interesting...it's true that the chair is only the tip of the iceberg, especially for a c5c6 SCI that pushes and drives. There's just soooo many more physical/emotional battles than a para. But everyone handles things differently, and so ur level injury doesn't automatically determine how adjusted you are. However, I'm not like Vancity's friend, in that there were no positives. It's a complicated story, and my journey has been paved with sharp rocks on the road, but I still LOVE my journey. I have climbed proverbial mountains, and with that comes pride, purpose and, (I love this word), panache!! Let me just say, ironically, sex has been a whole different, and possibly better, experience to me. Do I miss some things, like physical orgasm? Yes, but my pleasure center is still very intact, and very stimulated.

As for a cure, I think they could probably pull off some curing in certain SCIs, but don't hold ur breath. This will move at a snail's pace...it's much more financially rewarding to come close, than actually curing.

[lavly]

Dec 28, 2012 13:27:32 GMT -5 vancityippy said:

I notice that the quads I have known don't talk too much of a cure...probably because of all the convoluted things mentioned above. One guy I know was absolutely opposed to talking about "cures" as it was so frustrating for him...He said that hope was torture.

But I'm sure that most, if not all quads/ SCI guys would like if they could magically use their bodies again.
If there was an instant cure for SCI (or any disability), and someone wanted to be cured...I would not hesitate for a single moment to snap my fingers and fix that. Living with a body like that is not easy and I would cry tears of joy for the guys I know.

As the other gals said, as far as my sexual, intimate preferences go, I'll just sit at that back of the train and read paradevo fiction

+1

[lavly]

Dec 28, 2012 13:40:07 GMT -5 vancityippy said:

Hey, dr332
Have you ever been with a person with SCI? or had friends or anything like that?

I'm just curious because, from afar...if you don't know any disabled people, and you just see a hot guy in a chair around here and there...You might think, hey! what's wrong with that? He's cute!

But if you actually talk with someone about what it's like to lose the use of their body, and deal with the crap that comes along with SCI...your perspective totally shifts.

I remember asking a quad I dated "what positive things have come from this" (expecting that he had some enlightened experience and was now a better person...blah, blah)
He looked at me like I had two heads and explained what it had been like and it was heart breaking...ever since that moment, I have fantasies about a cure

+2

[nocturnaldev]

As a medical professional, I'm very reserved when it comes to alleged "cures." As far as my dev desires, like others have said, that would all take a backseat. I would much rather my SO is happy, and living a fulfilling life (in their eyes), and would stand firm beside them, no matter their decision. I would being lying, however, if I didn't admit that I would be quite skeptical at first. It's not about me, it's about them, and that's all that matters in the end. Plus, I have literary and film outlets for the dev in me.

[devogirl]

Yes, it is wrong that you find the possibility of a cure for SCI depressing. If you are close to someone who has been injured, hopefully you would be able to put their happiness and well-being above your own dev desires.

Anyway, the idea that in 5 or 10 years there will be no more wheelchair users or that all disabilities will vanish is a fantasy. Our knowledge of how the human body works is less advanced than those media reports suggest, and technology is never going to be a cure-all. Think about how often your car or computer breaks down. As long as we have bodies there will be disabling conditions or diseases, which could affect you too, don't forget. I find this utopian attitude in the media surrounding these kinds of stories very troubling, because it's a way for the general public to allay fears of becoming disabled themselves, and also to ignore real issues of access and inequality right now, because, you know, technology will fix everything eventually.