Monday, March 18, 2013

Connection works: The disability civil rights movement

Helen Marie Russon

I love the “connection” theme for this year's MS awareness campaign. As scientists are discovering the amazing process by which nerves start to form new connections (remyelination), we in the MS community are also finding new and creative ways of doing the same thing. This month, we are broadening and strengthening connections within our neighborhoods and throughout the world.

Connections are often created because there is a common need, combined with a realization that this need can only be met by a group effort. In many cases, the resulting connection stays alive throughout generations and becomes a part of history. Such was the case with a movement that many people still don’t know about: the disability civil rights movement.

People with disabilities used to be even more isolated than we are today. Not only were we overlooked in the civil rights laws of the 1960's, but in some cases we underwent forced sterilization and mandatory institutionalization. There was also a general assumption that if we were unable to use a sidewalk or get into a building to apply for a job, it was the unfortunate hand we had been dealt and it was our responsibility to accept and cope with it.

Things changed when people with disabilities – all kinds of disabilities – worked together to change peoples’ minds and eventually change the law. Ed Roberts, the father of the disability rights movement,” used the press in 1967 to persuade University of California, Berkeley  that he could attend classes in an iron lung. In 1977, disability activists organized a five-week sit-in at a government building in San Francisco, until the Carter administration finally implemented regulations to make public buildings accessible. And in 1988, hundreds of students and alumni at Gallaudet University for the Deaf effectively closed down the campus until a deaf president was hired.  

It was these types of protests that eventually led to George H. W. Bush signing the Americans with Disabilities Act (ADA) into law in 1990. In fact, the Society just honored a congressionalchampion of the ADA at the annual Public Policy Conference. Although we have a long ways to go before we have finally achieved a society free of disability discrimination, we are in debt to – and forever connected with – these heroes.

Helen Russon is an attorney who currently investigates civil rights complaints for the Oregon Bureau of Labor & Industries. She also teaches a class on Disability Law for the Willamette University College of Law in Salem, Oregon. Since being diagnosed with MS in 1997, Helen has done volunteer work for the NMSS, and has written several articles for Momentum Magazine regarding both the physical and legal challenges of being a person with multiple sclerosis.


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  2. Sorry to be pedantic but 'remyelination' does not mean 'reconnection'. I have no idea if connections are lost in MS, aside from those lost because of axonal/neuronal death, which undoubtedly occurs with time. I've read that some re-myelination does occur but to an inadequate degree and without keeping pace with de-myelination (which is, after all, the hallmark of our disease). I hope that helps and doesn't confuse or irritate. Anyway, none of this has anything to do with your main (and vital) point. Best, Zev

    1. Thank you! I appreciate that clarification.

      Take care,