24 April 2011

"The International Association for the Advancement of Creative Maladjustment"

As a trade unionist and socialist these words by Martin Luther King always rang true to me. 

I never intend to adjust myself to segregation and discrimination. I never intend to become adjusted to religious bigotry. I never intend to adjust myself to economic conditions that will take necessities from the many to give luxuries to the few. I never intend to adjust myself to the madness of militarism and the self defeating effects of physical violence."

And I guess now that I am a new paraplegic these words ring even truer.

After listening to this after a long time, two recent blog posts came to mind.

One was an
imaginary conversation I had at my 'Spinal-Cord-Injury-group-therapy' with my counselor.

Counselor: "If you don't accept your lot in life, you will never adjust."
Dennis: "I'm not really interested in adjusting to this life. I'd rather fight for the cure. Not just because I want one, but because it's possible."
Counselor: "Then you my friend are maladjusted and you get an F in group."

And the other was a blog post written by a friend and how he was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury." Basically he was called a maladjusted, too.

In the year 2011 is it right that we are still trying to adjust ourselves to paralysis when we have excellent results in animal studies and clinical trials in progress to cure paralysis? Actually, the thinking that we should adjust is what is stopping the cure.

I appreciate all the work done by those before us, who have struggled for better accessibility, chances at employment, etc, but as long as we continue to think in 2011 that paralysis is something that you adjust yourself to, the further we will be away from a cure.

The image of the 'happy roller' rolling through a successful life in the chair, is a myth.

For every successful businessman or career woman in a chair, there are countless more unemployed. According to a 2002 study, the unemployment rate in America for those with spinal cord injury was 63%. And to this I never intend to adjust myself.

For every happy person living a carefree life in the chair, there are countless suicides. The rate of suicide in the spinal cord injured community has been evaluated as high as five times greater than those without disability. And this I never intend to adjust myself to.

For every person living a long life in the chair, there are thousands who die prematurely due to complications stemming from their spinal cord injury. A 2009 study stated that life expectancies, "are still somewhat below life expectancies for those with no spinal cord injury." I never intend to adjust myself to a lower life expectancy than others.

For every person in a wheelchair enjoying greater accessibility in our communities, there are countless numbers of others who are confined to their homes due to poverty, pain, or vent dependence to whom ramps are meaningless. And to this too, I never intend to adjust myself.

If refusing to give up hope for a cure, when evidence supports it, is to be labeled maladjusted, then I too am a maladjusted and I'll throw my hat into the ring of "The International Association for the Advancement of Creative Maladjustment".

13 April 2011

Italian IV National Day for Persons with spinal cord injuries

The will of the people inexplicably ignored
By Paulo Cipolla

First, it should be pointed out that the original idea to establish a National Day, was born from the need for clarity regarding the real chance to walk again felt by people living with spinal cord injuries.

It is clear that the only way to walk again is to help researchers. Therefore a practical way is to give economic support to Italian research and disseminate correct information about paralysis from spinal cord injury. It was for this reason that a national day dedicated to finding a cure for spinal cord injury was established, as also is the case for years many other diseases.

To accomplish this, the Tuttinpiedi (All Stand Up) Committee was formed in 2004.

To promote this, the Tuttinpiedi Committee, with over 20,000 people across Italy spontaneously joining, was formed in 2004 (it should be noted that the collection of membership was suspended because it had gone well beyond what was necessary).

The Committee Tuttinpiedi represented the will of the people to address and solve the problem of identifying a cure for spinal injuries.  In fact, the primary purpose of the Tuttinpiedi Committee was to establish the National Day for Research on Spinal Cord Injury.

The FAIP (Federation of Italian Paraplegic Associations) faced with such a popular initiative could not ignore this phenomenon, which until then it had seemed strange, decided to support it.

In 2008, the national day was finally establish, but: 
a) The popular will of the Tuttinpiedi Committee was to establish a Day of National Research on Spinal Cord Injury.
b) The FAIP establishmed the National Day for Persons with Spinal Cord Injuries, but the word research, the heart and soul of the popular will, was deleted.

The result is that today, in 2011, medical research on spinal cord injury in Italy seems abandoned and the people who believed a change would come with the establishment of a national day see their expectations thoroughly disregarded each day.

On April 4, 2011 many of us noted that:
 In no definably important news or TV program was the fourth anniversary of the National Day for Persons with Spinal Cord injuries even mentioned.
 In none of the events related to the national day was the topic of research for a cure for spinal cord injury even put on the agenda.

For example, In Milan, at the Spinal Unit Niguarda Hospital, organized a conference entitled:
"The UN Convention on the Rights of Persons with Disabilities: a step forward for spreading the culture of independent life"

I pointed out the disappointment that the topic of research had been totally neglected, ignoring the will of the more than 20,000 people who wanted a national day for research on spinal cord injury.

Because of this brief protest I was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury."

Frankly I do not care of this.

If you share my disappointment and want share your ideas with me, you can contact me via e-mail at paolo.cipolla(@)yahoo.it

Perhaps in future we might think of a way to reassert the original spirit of the day to what people with spinal cord injury would have wanted: "A day dedicated to the research for a cure for spinal cord injuries."

Translator: Dennis Tesolat
lunedì 11 aprile 2011 CelluleStaminali&BombeAtomiche: IV Giornata Nazionale della Persona con Lesione al Midollo Spinale

05 April 2011

Welcome to the Spanish cure and Fenexy

~by Carles Alcolea~

From our youngest days we are told at school that the illness is cured by gentlemen in white coats with test tubes, who are called scientists. We have always imagined them as mad scientists with wild hair, inside a gigantic building full of laboratories with infinite resources doing experiments which only they can understand.

Nothing could be further from the truth. How does science actually work? How do we discover the cure for diseases?

The harsh reality is that scientists are ordinary people, made of flesh and blood, with their families, their mortgages, and their own problems. They are usually people who have decided to commit themselves to research as the result of a personal passion, and quite often do not earn money with it; they live on their salaries as a teachers or from scholarship to scholarship.

Even then, some of the time that they could be dedicating to research to make more progress, is wasted filling in applications, applying for scholarships, seeking partners, trying to reduce costs, etc.

This is why things move so slowly.
What if the gap between science and society wasn’t so big?

After all, science is used to fix problems in society, why not ease the work on the ones who research how to cure us? Tomorrow you might need a therapy that has not been discovered yet.

The field of the spinal cord injuries repair is progressing quickly due to the latest discoveries. We have already broken the barrier that seemed unbreakable: spinal cord injuries are now curable.

But the science behind a cure for spinal cord injuries needs many things: money, incentives to attract new minds, human and material resources, etc.

The scientists need to meet frequently and talk about their progress to generate new ideas, to compare results, and to collaborate with one another. They need everyone’s support.

That is why Fenexy exists.
Founded: November 2010.

Would you like to do something to help in the meantime?

See Fenexy’s website at www.fenexy.org.
See Fenexy’s Facebook page at www.facebook.com/Fenexy.
At Fenexy there are many things you can help with, administration, advertisement, design, translation, etc.; there is a lot of work to be done.
Contact us at info@fenexy.org

PS. Great progress. This is the first post translated from another language into English. Thank you Pierre. All mistakes with the English are mine as I did the editing.