With no REAL "Comfort Zone" for SCI: Why So Few Activists?

[Faye]

I like the way Vgraven gets out to Advocate for the CURE. Since SCI has no Real "Comfort Zone" to speak of, you'd think more would go out and voice our desperate need for a CURE.

Why isn't this happening???

"Together we stand, divided we fall..."

[Clipper]

I wish each day had more than 24 hours. Between care issues, work and the daily duties of living a life, I have very little time to devote to advocacy. I do what I can, but unfortunately it's very limited.

[woman from Europe]

Because most of us, do not have the time to do more than the most necessary things in life, like shopping, making food, raise children, wash clothes and clean the house.

[Emi2]

Uhm, because I'm not as desperate for a cure as I am for a happy life, with or without SCI. A cure will happen when it happens and since I have no wish to be a test subject that's soon enough for me.

"Learn from yesterday, live for today, hope for tomorrow"
~ Anon

[PB72181]

Because right now I'm concentrating on living my life, like Emi said, SCI or no SCI. And trying to do that seems to be a full time job right now.

I'm not deaf...I'm just ignoring you! http://sci.rutgers.edu/forum/images/smilies/wink.gif

[cheesecake]

It depends how you define advocacy. Many of us are involved full time. Not everyone chooses the same approach.

"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998

[Andy]

Too busy leading a life to devote my time to preaching the already known need for a cure to neurological conditions.

[gettinup]

I would like for you to define "no real comfort zone" before I respond.Originally posted by Faye:

I like the way Vgraven gets out to Advocate for the CURE. Since SCI has no Real "Comfort Zone" to speak of, you'd think more would go out and voice our desperate need for a CURE.

Why isn't this happening???

"Together we stand, divided we fall..."

[member412678]

Faye,
I think for alot of people with SCI...they spend every moment of their lives fighting and are probably just too tired.

As for this country's political attitude of indifference toward the people suffering this horrible existance, I believe the scientists and researchers that really care will do what's necessary...even if it means going out of this country. We feel we are doing our part by supporting Dr. McDonald's NTT Project, since our government will not.
I think things will only change when people with SCI start going out of this country, and returning with "significant" recovery.

[ChesBay]

It depends how you define advocacy. Many of us are involved full time. Not everyone chooses the same approach.

I agree with Cheesecake... it wasn't too many years ago this type of forum didn't even exist.

From 26 years of SCI, IMO opinion a good bit of advocating is being done and the overall direction and effectiveness seems to being steadily growing in momentum.

Many improvements in quality of life are fruits of "advocacy" and a lot of hard work by individuals with deep comittment to the cause.

[carl]

Faye,
Please, please keep up all of the work that you are doing and keep everyone informed. Progress usually comes slowly and more often by accident than by design. It would take a modern ESC-version of the Manhattan Project and the current Administration has their own agenda and it is not ours. Does one work against them, or does one try to work with them, especially when most people also need to live? BUT, IMO, progress comes about by the urging and pushing of activists like you, and not from proponents like me. Also, remember that there are many good causes out there.
Thank you,
Carl

[Dejekted1]

just tryingg to beat pain,not go hospital, make enough muney to pay for sci stuff,stay healthy enoughm for cure some day is all sum of us can do. not have anythin else todo make easy to spend time on advocate.

[Faye]

Originally posted by Dejekted1:

just tryingg to beat pain,not go hospital, make enough muney to pay for sci stuff,stay healthy enoughm for cure some day is all sum of us can do. not have anythin else todo make easy to spend time on advocate.

We all have other stuff to do. Wearing a t-shirt promoting the CURE takes no time at all.

Though I don't deal with pain other than the emotional pain: as a caregiver, and raising five children on my own, I feel energized from advocating for a CURE.
Not doing so would make me feel depressed.

Everyone can devote a little time to promoting the CURE, even if it is just by wearing a CURE t-shirt!

Thanks Carl, for the encouragement!

"Together we stand, divided we fall..."

[THP]

We can reach a cure far faster if as many of us become "active" activists as possible. In numbers there is strength. It appears to me far too many members are sitting back waiting for "someone (anyone)" to come up with a cure. I don't know about them. Not me. I don't want to wait any longer than I have to. Because, to define any part of my life as "quality and/or comfortable" would be admitting complete defeat. Anyway, I'm not comfortable and no matter how many assistive devices and/or meds I have my "quality" of life sucks and will always suck until I can walk again.

It disturbs me to see commercials and advertisements of "afflicted" individuals posing in wheelchairs with smiles on their faces. Giving the impression that all is right with the world. In my opinion that sends a very wrong message. It tells the able bodies that we are all happy with our condition and don't need or want any of their help. Nonsense!

The gay/lesbian community is getting what it wants by strongly advocating their position. The cure for AIDS, minority equality, pro-life and other programs have been and are very successful for the very same reasons.

But, what are we doing? From my vantage point - not much. It seems many are afraid we're going to piss off some legislator or decision maker. Well,PHOOEY! I say we get in their face and stay there until we are recognized as a powerful and influential group. Then, and only then, will we get something done.

Lets get off our asses and get going. There's tremendous power in numbers. And our numbers are very large. It can be done, we just need to find the will.

Tom

[bigbob]

Tom Pierce

Member
posted 04-27-04 01:36 PM

It disturbs me to see commercials and advertisements of "afflicted" individuals posing in wheelchairs with smiles on their faces. Giving the impression that all is right with the world. In my opinion that sends a very wrong message. It tells the able bodies that we are all happy with our condition and don't need or want any of their help. Nonsense!


There is nothing wrong with a smile, people that have cancer or aids are seen smiling. I don't think you have to sell the idea that your life is hard in a chair, I think though, you gotta make others believe the research would not be in vain and a cure is possible.

........You need people like me so you can point your
fxxxing fingers, and say "that's the bad guy." So, what dat make you? Good? You're not good; you just know how to hide......... Scarface

[THP]

Bibbob -

Absolutely nothing wrong with smiling. I smile all the time. As a matter of fact I love to smile and laugh. My concern is with the subliminal messages being sent. Why do you think certain charities elect to show starving children, emaciated AIDS victims or any other group who can visually tug at your heart strings? There are two reasons - They want your attention and they want your money. And, wonder of wonders - it works! They do get the attention and they do get the money!

As a community we are invisible and THAT, my friend, is a problem.

Tom

[bigbob]

Tom, I understand what you are said. I argree somewhat. I think Aids research lagged far behind where it should have been. At first most people thought it was a gay disease. They never thought they would get it. When it started spreading into other areas of our culture the funds started to loosen. I know sci can happen to anyone, a commercial even with a kid smiling in a wheelchair, surrounded by his family certainly would get my attention. I think the commercials of seeing someone unhappy and suffering for some reason brings up defenses in the viewing public not to identify. The main thing though, is both you and I support the cure!!!!!!!!

........You need people like me so you can point your
fxxxing fingers, and say "that's the bad guy." So, what dat make you? Good? You're not good; you just know how to hide......... Scarface

[Faye]

Originally posted by bigbob:

I know sci can happen to anyone, a commercial even with a kid smiling in a wheelchair, surrounded by his family certainly would get my attention. The main thing though, is both you and I support the cure!!!!!!!!



Not to worry Bigbob, the Stem Cell commercial of www.cascr.org (http://www.cascr.org) shows Jason smiling (yet pleading for the cure).

Check it out at: http://www.cascr.org/com/Sequence%201.avi

Let me know what you think!

"Together we stand, divided we fall..."

[Christopher Paddon]

I believe living with sci is a lot harder than is admitted or than AB realise and that most SCI people simply can't find the time or energy to do any advocacy work

Tom Pierce I agree - the happy cripple ALWAYS gets on my nerves. I'm not against anyone's being happy but I sure wish the happy crips would keep quiet about it - as I've said before, why cure something that's so much fun?

SCI is deadly, can lead to serious health problems, robs one of a lot of life's pleasures, stops even access to most places - why pretend this is acceptable?

[Faye]

Originally posted by Chris2:

I believe living with sci is a lot harder than is admitted or than AB realise and that most SCI people simply can't find the time or energy to do any advocacy work



Yet you are doing it!!! Thank you Chris2!! http://sci.rutgers.edu/forum/images/smilies/cool.gif
We can all be internet activists!!!!

BTW I'm with you on the walking issue, it would solve the majority of health problems instantly just from having better circulation, and that's in addition to the enormous boost in self-esteem it provides!!!

"Together we stand, divided we fall..."

[Lizbv]

Originally posted by Paul:

I agree with Cheesecake... it wasn't too many years ago this type of forum didn't even exist.

From 26 years of SCI, IMO opinion a good bit of advocating is being done and the overall direction and effectiveness seems to being steadily growing in momentum.

Many improvements in quality of life are fruits of "advocacy" and a lot of hard work by individuals with deep comittment to the cause.

I'd like to thank this individual for posting this and commend him also for his advocacy as I know he's made good for a lot of others, from a disability he certainly did not choose; similarly along with the rest of us. I can't imagine I'd be where I'm at today without individuals who are/were "deeply committed" to the cause.

For me, advocating is/was a interest, but also a tool and resource of many long days and long drives, and meetings and $, etc.

Whether it be advocating for the cure, disability issues, or any other advocacy, it takes someone with vision, drive and passion to stay committed on the path to betterment. I applaud the one, who ventures into the unknown realm for betterment of themselves and others. It takes a real leader. Kudos. http://sci.rutgers.edu/forum/images/smilies/smile.gif

TAKE YOUR HANDS OFF MY MOJO

[zillazangel]

Originally posted by Faye:

I like the way Vgraven gets out to Advocate for the CURE. Since SCI has no Real "Comfort Zone" to speak of, you'd think more would go out and voice our desperate need for a CURE.

Why isn't this happening???

"Together we stand, divided we fall..."

Could you define "no Real Comfort Zone". And could you back up the assertion that so few people are advocating for a cure? What is the basis for your statement? Do you have statistics on the number of people with SCI and those affected by SCI, then correspondingly the number of people who advocate for a cure? Of course not! And what is the meaning of "advocate for a cure" anyway?

I advocate for a cure, but I'm quite sure that you would not call what I do advocating for a cure because you don't like my methods and I don't like yours. Voicing a need for a cure can be as simple as forming a friendship with an able bodied person who may then go on to vote for a candidate who supports cure-oriented research. YOU may not consider that activism, but it is for some. You may shout from the rooftops and get yourself arrested pulling up signs from major intersections, but that is not everyone's style.

Activism is very personal. And it comes in many, many flavors.

Ami

[zillazangel]

Originally posted by Chris2:

I believe living with sci is a lot harder than is admitted or than AB realise and that most SCI people simply can't find the time or energy to do any advocacy work

Tom Pierce I agree - the happy cripple ALWAYS gets on my nerves. I'm not against anyone's being happy but I sure wish the happy crips would keep quiet about it - as I've said before, why cure something that's so much fun?

SCI is deadly, can lead to serious health problems, robs one of a lot of life's pleasures, stops even access to most places - why pretend this is acceptable?

Chris2, this logic makes NO SENSE. Of course you can be happy and want to be cured. I saw a commercial for WalMart (I think, maybe it was Target) for toys and it showed a number of gleeful children in the aisles of the store playing with various toys. One of the children was in a wheelchair and he was just as happy and playful as the other childre. I was stunned, but THRILLED to see a disabled child included in a television commercial.

Now, should that child have been shown frowning and sad because of his poor, poor plight in life? Of course not - children in wheelchairs are happy kids too! They certainly struggle more than kids without need for a wheelchair, but it's just a travesty to say that "the happy cripple" should keep quiet.

Chad is a happy cripple, but that does not mean in ANY way that he doesn't want to be cured. Those two things are NOT opposing viewpoints.

Ami

[zillazangel]

I am really shocked that someone who is himself disabled would actually support going back to the poster-child tactics of the telethon days. That's what you're suggesting outright! Bring - no ROLL - out the poor, pathetic, sad, victims of a spinal cord injury. If you get people to feel sorry enough for them, they'll give you money.

Blech.

I believe in raising money through more positive means than that.

You are concerned about the subliminal message of a disabled person SMILING? You sir, are either truly disturbed, or I am seriously misunderstanding what you intended. I sincerely hope it's the latter.


Originally posted by Tom Pierce:

Bibbob -

Absolutely nothing wrong with smiling. I smile all the time. As a matter of fact I love to smile and laugh. My concern is with the subliminal messages being sent. Why do you think certain charities elect to show starving children, emaciated AIDS victims or any other group who can visually tug at your heart strings? There are two reasons - They want your attention and they want your money. And, wonder of wonders - it works! They do get the attention and they do get the money!

As a community we are invisible and THAT, my friend, is a problem.

Tom

[bigbob]

The problem with cure advocacy is that it is not pure. It's always been fighting somebody else's battle.

Too much emphasis on:

Legislation, FDA, Stem Cell Controversey, Independant Research Organizations, Funding, Politics, etc

Best devotion of time spent on advocacy would be CURE US! Simple and to the point. March on Washington.

[This message was edited by BigB on 11-30-04 at 04:22 PM.]

[murrey]

Faye,
There is and has been activism going on for years. I remember when i had my accident(1972) what the conditions were like.
If you were in a chair at that time you were generally placed in a nursing home, unless you were fortunate to have parents who wanted to and could provide the means to keep you at home.
And believe me back then the cure was on peoples minds also. I remember a fellow at Lyndhurst Lodge in Toronto going to Russia to get the cure. Of course they thought back then the doctors in Russia were much smarter than those in Toronto. The results speak for them selves.
We lobbyed the city council and mayor to get curbs cut and housing, and building codes changed. That happened.I know it may seem like everyone else has just been sitting on their ass doing nothing.
A person in a chair was looked on by society as nothing much back then and a lot were treated as mentally handicapped or retarded if I may use the term. Most died not long aftr their injuries because of infection or kidney failure,so why would anyone think of looking for a cure. The focus was maybe more on medicine then and just keeping us alive. I myself had three major surgeries and came close to death from pressure sores. I have seen many friends die, one from kidney failure, one from choking and some from other causes. They all lobbied with us at that time.
When new comers come along and announce to me they are going to do wonders and why ain't nobody helping. All I can say is "Walk a mile in my Shoes". I certainly wish you the best in whatever you endeaver,this is how I know for certain that there is others and have been others who have gone before. Most of the change that has come about was by working with local government first regardless of who they were or what party they belonged to.Attacking people generally will get you nil.
Again I say work with a positive attitude.

[cass]

zilla, with all due respect, you are not dis, i believe. i wasn't dis for most of my life, worked with dis, yet missed the subtleties.

yes, always showing a smiling crip is misleading. to say the least. jerry's kids and all that is bordering on insulting for that very reason. it's not about looking pathetic.

but...like me, i doubt anybody really gets that until suddenly you're on the other side of the coin. rehab was really hard for me because i kept seeing the therapists, nurses, etc. from my former position and realized...i really had no clue.

just like losing a loved one. until it happens to you, NOT a close friend or lover, one really does not understand the full impact. it really is impossible, no matter how hard one tries.

would you routinely show a funeral with everybody laughing? not very realistic.

there has to be a balance.

[Faye]

Originally posted by murrey:

Faye,
There is and has been activism going on for years......
When new comers come along and announce to me they are going to do wonders and why ain't nobody helping. All I can say is "Walk a mile in my Shoes". I certainly wish you the best in whatever you endeaver,this is how I know for certain that there is others and have been others who have gone before. Most of the change that has come about was by working with local government first regardless of who they were or what party they belonged to.Attacking people generally will get you nil.
Again I say work with a positive attitude.

Thanks Murrey for reminding everyone how much has been accomplished already through activism. I wholeheartedly agree with you that working with local government has generated great changes. I hope you don't think I have not been aware of that. Even among what you consider old-time actvists though ( and I have personally been mentored by a 30 year long activist: please do a search for Jim Cherry ), there is acknowledgement that the disabilities civil rights movement has lacked the unity that other civil rights movements of the past have shown. Part of it is due to the diversity of level of disability. Another part is due to general apathy and lack of time due to daily care issues.

After my son Jason was paralyzed for 5 years and I had spent all those years trying all available therapy options with limited results, I became a disability accessibility activist. I have brought media attention to the 1700 violations of class room accessibility in one GA county alone. ( there were no ramps to the 1700 class rooms in trailers). Unfortunately the ADA has no teeth and the Office of Civil Rights hasn't done anything about it.
Because of the lack of support from and the incessant infighting in the disability community, Jim Cherry, JD ( my mentor )has primarily worked solo.

I have always been cure oriented and thought that activity based recovery ( intense therapy )was all Jason would need. Unfortunately after those initial 5 years, with the last 2 years of those spent on a plateau, I realized more was needed in terms of axon regeneration, ie. cure research. So I turned the activism skills I had learned from Jim towards SCI Cure Advocacy.( we are now 8 years post injury and as such not really considered new-comers anymore)
Obviously I have adapted those skills to a new environment given the advent of computers that previous activists didn't have at their disposal. This has permitted many new activists' work to proceed more readily/quickly to the national level in addition to the impressive ongoing local efforts, which I think will be of benefit to us all.

I hope this helps explain where I'm coming from.

This does bring up the point though that there is a misdirect of energy from the disability community to discourage new-comers to activism rather than encourage them.
Hey, tell you the truth, I'd rather have a well-oiled machine like prop. 71 taking care of activism rather than having to put my time into it.
Since prop. 71 addresses only stem cell research and all the myriad of conditions that could be helped with stem cell research, I really think an CURE activism organization focused on paralysis only is still desperately needed. Please check out www.CureParalysisNow.org (http://www.CureParalysisNow.org) if you have not already done so.

And a March on Washington should be in the works to show the numbers of people who deal with paralysis every single day: ALS, SCI, Parkinsons, MS, Brain Injury, Stroke, CP...etc.

~It's troubling that exit polls and vote totals were so far out of whack. "I've spent my whole life in marketing. The difference is clearly beyond any sampling variability. ... The community of statisticians and media experts need to not let this be dropped"~ Bill Hawkes, a retired A.C. Nielsen Co. statistician.

[This message was edited by Faye on 12-04-04 at 12:34 PM.]

[This message was edited by Faye on 12-04-04 at 12:39 PM.]

[This message was edited by Faye on 12-04-04 at 12:44 PM.]

[Faye]

For something positive and practical we can all do this Christmas Season.....

This is from a post by Suzanne Poon regarding a large scale project, the China SCI Network, which will offer hundreds of sci an opportunity to participate in clinical trials. Dr. Young has just visited all five Centers in China and will be involved in leading this China SCI Network:

Mike C & Anyone else:

All donations are tax-deductible including from Canada and the United States. Cheques can be made payable to 'HKU - SCI Fund'. The sole purpose of the establishment of the Fund is to support the China SCI Network. Here is the mailing address:-

HKU Foundation Secretariat,
9/F Knowles Building,
The University of Hong Kong,
Pokfulam Road,
Hong Kong,
China.
Attn: Ms Jasmine Woo
Tel: 852-2857-8584
Fax: 852-2517-6351

Suzanne


You can find more about this on the CURE Forum. Please check it out! http://sci.rutgers.edu/forum/images/smilies/smile.gif


~It's troubling that exit polls and vote totals were so far out of whack. "I've spent my whole life in marketing. The difference is clearly beyond any sampling variability. ... The community of statisticians and media experts need to not let this be dropped"~ Bill Hawkes, a retired A.C. Nielsen Co. statistician.

[bigbob]

I really think an CURE activism organization focused on paralysis only is still desperately needed.....And a March on Washington should be in the works to show the numbers of people who deal with paralysis every single day. Faye
Great points.

[bigbob]

lack of support from and the incessant infighting in the disability community

Not to hijack thread I posted my thoughts here (http://carecure.org/forum/showthread.php?t=39181)