Fearing a Cure

[KeyBored]

Recent posts about John Hockenberry's negative comments towards Christopher Reeve and the so-called "care vs. cure" debate have prompted me to comment. At the time of my SCI in 1975 there was little if any SCI research. The only hope for a cure was divine intervention or maybe science would some day "come up with something". In rehab at various Veterans' hospitals, I was told to accept my injury and move on with my life. "Acceptance" and "Mainstreaming" were the mantras of rehab. However, the pre ADA society of that day wasn't so accommodating - there were no curb cuts, accessible transportation, and steps were everywhere.

Because of the work of many disabled advocates, laws and attitudes changed, and the U.S. and other countries became more accommodating to those with disabilities. During this time of change and acceptance, SCI research was still in its infancy and hope for a cure was just that - hope. Many with SCI set hope aside, and took advantage of the opportunities they had and began to live productive, fulfilling lives. I believe there is a subset of this group that have integrated so well into society, have so completely accepted their injury, that they no longer seek a cure. In fact, I wonder that on some subconscious level that they actually fear a cure, because it would strip away their very identity.

The identity they fear of losing is that of a disabled person who has accomplished much despite overwhelming odds and opposition. They may see themselves similar to members of a racial minority group that have excelled in spite of intense discrimination. I wonder if their disability has become so much a part of their selves, that a search for a cure would be as useful (or as insulting) as a search for a "cure" of a person's race, ethnic heritage, or religion. These disabled people have a sense of pride in themselves (as they should have), but have gone to far by becoming proud of their disability as well. Don't mistake me - I am not ashamed of my disability, but I am not proud of it either. I ask that society accept me as a normal person with a disability, but not my disability as normal - if so, why the need for a cure?

Steve
keybored.net

[Mike C]

Can a person be so secure with his or her SCI that they fear to be cured? If this is a true phenomena, then it needs to handled and studied by competent psychiatrists the world over because it will be a very seldom behavior indeed.

If a cure is available and a "secure" person with a SCI thinks "I can´t give up my chair...no one will think I´m great and I can´t be an example for others to follow", than he or she really needs professional help. And I don´t mean to sound nasty or anything, but this would in my opinion be a similar situation to giving the deaf their hearing back or the blind their sight. There have been and are great achievers who have been blind and deaf, as well as being both. But who, in a clear state of mind, and with any disability, would not want to be whole or have the chance to be whole again? In the case of SCI, can a person be so secure with their life as to want to hold on to a lifetime of cathedors or leg bags? How about adding in magic bullets and digital stimulation and all the other issues and conditions that go with a SCI? Who wants to deal with SCI until they are old and gray if they could be cured instead?? How many here would not give everything they had to be whole again?? I know I would in a second, and I wouldn´t care if I had to give up my Noble Prize (lol, if I had one) or giving up being the poster wheely boy for the Special Olympics with massive sponsors paying me big bucks. Nothing beats a cure, no matter how elite a person with a disability is. I´m sure there will be those who will need psycological help sorting out their lives and identities after a cure, but I´d much rather have an identity problem than an SCI problem.

[This message was edited by Mike C on September 02, 2001 at 03:44 PM.]

[Wise Young]

Many able-bodied people are shocked that not everybody in a wheelchair wants a cure. They naturally assume that everybody in a wheelchair wants to be cured. I have spent much time talking to friends about their misgivings, opposition, and even anger concerning what they considered to be the overemphasis on "cure". Here are three explanations that I have been able to glean:

First, many people have "accepted" their condition and no longer believe in, hope for, or think about the possibility of a cure. A friend once described it this way... It is like falling in love with a wonderful woman (or man...). You hope, you wait, but the person never calls, never responds. You give up, marry another person, and then, years later, she or he shows up at the doorstep, wanting back into your life. You shut the door.

Second, many do not like the image of spinal cord injury perceived by the public. The first response of the public is to gasp in horror at the condition, to feel sorry for the person in the wheelchair. As one person put in at the Chicago National Democratic Convention where many people in wheelchairs threatened to boycott if Christopher Reeve spok... "I get from point A to B differently from you but that doesn't mean that I am inferior or you are better".

Third, there is a sense that society wants to get rid of people who are disabled. Cure is a dirty word because it implies that the condition is undesirable. Most people will respond that spinal cord injury is of course undesirable. But many who are advocates of disability rights say that disability is a fact of life, that we all eventually become disabled, and that the goal should not be to eliminate disability. I had a lot of difficulty with this because although I felt that, although people had a right to decide for themselves what they wanted, they do not have a right to decided for others.

Cindy Jones once explained to me the history of antagonism towards a cure. She was once the poster child for polio. When the vaccine was discovered, everybody concluded that polio was cured and people who already had polio were abandoned. So, today, even though polio is considered to be "cured", there are millions who are paralyzed. I insisted that the problem is not with the cure but the public perception of the cure. But she is right that the public will get tired of a "cure" and will inevitably consider a condition cured when it really is not, and certainly not for everybody.

In any case, the discussion came to an agreement point when I asked Cindy whether she would want the disability for her children and other children. She said that she would not want the next generation to have the kind of disability that she has. While people can decide that they are willing to accept a disability, they cannot and should not be deciding for other people or for future generations. In the end, opposition to research closes the door not only for people who are disabled today but for future generations.

Unfortunately, the debate is fueled by much misinformation. Chief amongst these is the mistakened perception that cure research is stealing money from care. This is not true. Spinal cord injury research currently takes less than 1% of care expenditures. Some people believe that "cure" research is taking funds away from assistive technologies. It is not true.

Everybody thinks that cure research for spinal cord injury is raking in billions of dollars; most people are surprised that the field is so short of funding. Spinal cord injury fundraising has not "gushed cash". Despite the publicity, spinal cord injury research still receives less than 1% of care costs. "Cure" research is still a tiny proportion of the funds being expended to develop better wheelchairs and other assistive technology. While there is intense competition for research funds amongst the different medical conditions, there is no danger of spinal cord injury researchers taking funding from care funding or care research.

Wise.

[This message was edited by Wise Young on September 02, 2001 at 04:24 PM.]

[Steven Edwards]

A fear of the "cure" is something I have thought about because I went to school with a girl in a wheelchair who was born with SMA and has spent her entire life in a wheelchair. At our graduation ceremony (in 1997) I spoke to her about a cure coming in the future and getting out of these infernal contraptions: she looked at me with understanding, but also like I had committed blasphemy.

"Had I done something wrong," I wondered? Wouldn't life be so much better? For me, yes. For her, not really. Think about it: we want back on our feet because we know that life, we grew up with that life. Remember the moment you realized that you were paralyzed? Remember the thought of "Oh crap. How am I going to live like this?" You learned. You adapted.

Now think of it from her position. She grew up in a wheelchair. She only knows life in a wheelchair. Going from the chair to walking will be just as big a shift for her as it was for us to become paralyzed. She will have to learn how to walk -- one foot in front of the other. She will have to learn to get herself dressed -- one leg in at a time.

I think it is more of what we are comfortable with. Me? I would prefer walking. But for someone who doesn't know that life, it would be scary.

-Steven

[Mike C]

I think a persons view of the cure issue also depends on when they were injured. Those who have been recently injured hear a lot about successful animal trials and stem cell therapy and actually have a lot of hope. If you look at the Cure section, you can read about one potential trial and method after another. How can a person, especially a newly injured one, not have hope in this day and age?

[Curt Leatherbee]

People who are Paralyzed Vets and get like 3 or 4 grand a month, I wonder if they were Cured and walking again if they would still get any benefits? Heck if I got that kind of dough I guess I would want to remain a Paraplegic too. Most of these guys I know are not interested in a cure, I wonder why?.

[KeyBored]

Originally posted by Mike C:
I think a persons view of the cure issue also depends on when they were injured.

So true. But a downside to this is the desperation I read in some of the posts. I believe a cure is near, I look forward to it with great anticipation, but I'm not going to stop my life and wait for it - or spend great sums and risk life/further loss of function on unproven treatments.

I confess that I "fear a cure", but my fear is more of the process - I'm anxious about surgery, loss of fuction, increased pain, will I be able to endure or respond to the intense therapy, etc. I'm 48 now, so by the time safe and effective treatments are available, I'll be in my 50's. Still, I will welcome the challenge, and will even consider entering a 3rd phase trial if first two phases show significant results - and more than just toe wiggling.

I feel bad for those who truly fear a cure, and consider this fear as yet another effect of chronic SCI. It's not unlike older prisoners that fear freedom after years of incarceration.

Steve
keybored.net

[Jeff]

Both on SpineWire and again on CanDo. It was probably hashed out on the old CPN board, too, but I wasn't around long enough to remember it. I think the issue has fizzled somewhat because everyone is so sure of what is happening. It's not really news, anymore.

The Care/Cure debate raged for months on both boards. It's not really an issue [to me] anymore because most of the cool care technology that's being developed will be so useful in rehabbing us after our cure therapy is applied. Plus, with so many trials in the works, cure enthusiasts are less likely to have so much funding envy and angst over care research and other spending.

Are we at a different place than we were? Will debates, old or new, generate the thousands of page views that they did a year ago? Or are we more interested in the technology and hearing about results? Is there simply nothing to argue about, anymore? LOL

I think the future of CareCure is the sharing of experiences as we all begin to participate in various treatment programs. Who's getting what functional recovery with what injury type having received what different therapies and engaged in what rehab activities - with millions of people dialed in each day to monitor the progress of each of us. Everyone deciding for themselves what will work best and when to go for it.

[BJ]

My feeling is that both are needed, we still need care til cure is here. I just wish researchers would pick a different time frame - hubby was told 5-7 years 20+ years ago. Today I'm still hearing 7 years, could youall pick a new number.

[TD]

My only concern when they find a way to repair the spinal cord is what will happen after I am "cured". My legs have atrophied to the point I do not believe there is enough muscle to hold my body up. And what about those bones that were crushed in my accident? Osteoporosis has surely set in by now and the doctors decided not to reset my bones because they figured they could address that issue if and when I ever got up out of my chair. There are so many physical, psychological, and social issues to address in finding a cure I wonder if it would be worth it.

"And so it begins."