A Revolution of Empowerment

In my opening remarks at Working 2 Walk, I spoke about the legacy of Justin Dart.  If you don’t know the name, Justin Dart is widely considered to be the Father of the Americans with Disabilities Act, and he was a lifelong disability and human rights activist.

Mr. Dart was stricken with polio at the age of 18, and this life-altering event set him on a remarkable life journey.  A series of encounters with other polio patients, with the writings of Mahatma Gandhi, and with 3rd world “rehabilitation” centers charted a course that eventually led to passage of the ADA.

Throughout his life of advocacy, Justin Dart embraced the principle of inclusiveness and shared his vision of a “revolution of empowerment” – a revolution that would “eliminate obsolete thoughts and systems”, and give every human being the right to develop his/her capacities to the fullest.  Shortly before his death in 2002, he published a manifesto of extraordinary wisdom and lessons for the future, “Toward a Culture of Individualized Empowerment” (it’s a worthwhile read).

One of the most humbling and frustrating aspects of paralysis is the loss of power, and in many cases, independence.  If Justin Dart were alive today, I have no doubt that he would join our effort to revolutionize the way we look at paralysis.  To teach the world that it is a curable condition, that we, the grassroots advocates, the cutting-edge research scientists, and the pro-active investors, can empower ourselves by organizing, educating and advocating until a cure is achieved.

On another note, this week’s news that Geron is dropping their clinical trial in spinal cord injury shocked and angered much of the community.  Personally, while this development is disappointing, I don’t find it surprising.  As I’ve said before, achieving marketable therapies is business, not personal.  We can take some positives out of the fact that Geron made an enormous investment to demonstrate that hESC’s could be used safely in humans, a step that has hopefully paved the way for future therapies to pass through the regulatory process more quickly.


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