Anti-cure protestors help or hurt?Feb 12 05:16
They say protesters are a sign that our legal system is healthy, but the latest batch of protesters - a group of spinal cord injured individuals in Minnesota, protesting a bill that would fund spinal cord injury research - are really starting to irk me.
They first revealed they were against the bill (when it was introduced to the public) a few weeks ago. A few people in wheelchairs showed up outside the state capitol holding signs. But why protest a bill that could help them get out of their wheelchairs? Sounds a bit silly, right? (and it's confusing a lot of able-bodied people too).
The reason they're against the bill isn't all bad. They believe the public funding proposed for this bill should be used for what they feel are more important things, such as PCA services and durable medical supplies (which have been cut in recent years). And they do have a point. It's honestly hard to say anything bad about these people because many of them are part of a respected bastion of disability advocates in St. Paul (a group that's done a lot to help the disability community through the decades).
But they're completely wrong this time. And as mad as I want to feel towards them, I feel bad instead. They really don't believe a cure is imminent. They believe a cure is a fantasy purported by scientists who are looking for funding. And since these guys have been paralyzed for a pretty dang long time, they've seen a lot of "cure talk" over the years. They put hope away decades ago so they could heal and move on. To say they've adjusted to their disability is an understatement.
But there IS research to get excited about. People with both new and old spinal cord injuries are seeing return from both adult and embryonic stem cell procedures (being done in China, European countries and various countries throughout central and South America). People aren't walking again 100%, but even when they first wake up from the procedure they can feel parts of their body they couldn't before. That to me is a miracle. There is reason to fund this, like now (yesterday is more like it).
So the protesters feel research can't peacefully coexist with funding caregivers and equipment, but I think it can. And this is going to be the future, so they better get used to it. SCI research is never going away. Ya know...their hardcore anti-cure stance is a strange phenomenon. Once these folks are all gone years from now, it's a mindset we'll never see again. People with new injuries will never have to resort to a no-hope coping method. Hope now abounds, and will continue to do so until a cure is found.
I just wish I could erase the fervent anger these folks feel for this bill. Yesterday, they were out in even greater force as the bill began the process of heading to the floor. To say 'no' to a cure for their personal lives is one thing, but to prevent others from getting better, to protest against hope? Well, that is something else entirely.
Do you understand these protesters? How do you feel about publicly funded spinal cord injury research?
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1. ex-Gooserider | Feb 16 09:13
I have very mixed feelings about publicly funded research of ANY sort. If one really breaks it down, if it is publicly funded, it means that it is being paid for with money extorted from taxpayers by threat of violence (reference Mao, who correctly said that political power comes from the barrel of a gun)... Given this, I don't feel that it is any more right to have the government force a person to pay for research that they might not want to support than it would be for me to personally stick a gun in their face and make them right a check to the Reeve Foundation (or equivalent). I also feel very pessimistic about the hope for a cure in my lifetime (I'm 55), not because of the lack of research progress, but because of all the gov't interference and regulatory crap - even if they find a cure, will the FDA let us actually get it??? ex-Gooserider
2. roadreck | Feb 17 05:03
Respectfully at Jeff, I understand your fiscal, messaging, pragmatic concerns. I think about them all the time. Here's how I see it. If you go to any list serve fro clinical trials, you will see an abundance of devices, procedures, medications to mitigate the secondary effects of SCI. the reason for this is that these trials are more tenable and lucrative. This is why I am committed to the effort to publicly fund the research that has made some significant advances in the last few years in understanding the mechanics of SCI. You're right, SCI is not a disease. Its a mechanical injury with profound secondary consequences. If the science can correct the mechanics, then the secondary/tertiary consequences can be corrected as well. I choose to use the word CURE, and sometimes the phrase Curative Therapy because I believe a CURE will manifest itself in stages of curative therapy. and here's where I ask you a question. If we invest public dollars now that would elicit functional recovery
3. roadreck | Feb 17 05:13
to bladder, bowel, sexual function, hands, sensory improvement, voluntary core, breathing (for those vented) etc..., would it be worth the investment? I think the return on investment is enormous when compared to the significant costs that are expended to care for those with SCI, which are by and large shouldered by all of us. I think it makes $4 million dollars a paltry sum to ask as an investment, not just in future generations (though to Rebecca, its a laudable perspective) of the injured, but in the near future for those people who are injured now. And to ex-gooserider, we're all in this together...whether we like it or not. what kind of society do we want to live in? you call it extortion, I call it a better city, state, country that seeks to help make a better life for everyone.
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Tiffiny Carlson is freelance writer and writes the “SCI Life” column for New Mobility. She's also a C6 quad from a diving accident that occurred when she was 14 years old. A lifelong resident of Minneapolis, Tiffiny has been a writer in the disability community for over 10 years and writes for several publications and blogs, as well as her personal blog BeautyAbility. Her work has also appeared in mainstream publications such as Nerve.com and Playgirl.