Epilepsy Foundation
Written by Bill McLin
Then President and Chief Executive Officer of the Epilepsy Foundation
Tony Coelho, A welcome symbol of change for two million Americans with epilepsy. A determined champion in the struggle to make a difference in their lives and the lives of millions of others whose disabilities – real or as perceived by others – barred them from participation in American life.
And Tony Coelho gave new visibility to the work of the Epilepsy Foundation. Like other health care organizations, the Foundation was formed to alleviate suffering and improve the lives of those affected by a specific medical condition. But its challenges lay not only with the medical issues – for many people with epilepsy it was the social stigma that was the greater burden. And all too often
that burden carried over into key parts of the social web – leading to their exclusion from education or employment.
For years the Foundation had hoped to recruit a person in public life to carry the message that people with epilepsy could be highly successful. It looked for someone whose achievements put to shame the common view that it was a condition that inevitably sidelined those who had it.
So, when a leading Member of the U.S Congress by the name of Tony Coelho stepped forward and announced that he was one of the two million Americans living with epilepsy, it was in every respect a game changer. People told the Foundation that it made a difference in that subtle way that people think about themselves and how others think about them. One woman said she told her children, “See, a Member of Congress has epilepsy. He takes medicine for it. Just like you.” Just like you.
In order for the Epilepsy Foundation to do more, it needed more volunteer and financial resources. Tony used his prodigious fundraising skills to raise more than $5 million for employment services, programs that promoted social acceptance and endow a medical research program. The Foundation held a large dinner in Washington where both sides of the political aisle came together to support Tony and his work on behalf of people with epilepsy.
He traveled the country speaking to the Foundation’s affiliates and support groups as well as policy makers at the local, state and national level. Often people who had epilepsy and held important positions in life would ask to meet with Tony privately and on a confidential basis to discuss their situations. Others, who were just starting out on their journeys would meet with him privately to gather from his strength the courage to move forward.
But that is only part of the story of how Tony Coelho used his life and his life story to help others. Because more than anything he wanted to change the way people with epilepsy or other disabilities were treated when they applied for jobs. And he did.
As one of the authors of the landmark Americans with Disabilities Act (ADA), Coelho and his colleagues worked to empower jobseekers who previously would have had little chance of being hired. That law forbids most employers from asking a prospective employee about certain disabilities (including epilepsy) or how severe those disabilities are before the offer of a job. And it further requires an employer to provide reasonable accommodations which would enable that otherwise qualified person to do the job.
Getting such an influential bill through the Congress involved a huge effort on the part of Tony Coelho, boosted by the enthusiastic support of the Epilepsy Foundation and many other health and disability organizations. The Foundation allocated large amounts of staff time, and the energies of its lobbying crew, to get the message out: this was legislation that would change the lives of millions for the better and be a source of otherwise overlooked talent for the Nation. And it was.
Today that law, born in reaction to stigma and fear of the unknown, continues to offer a fulfilling life to millions. It is a source of pride to all who had a hand in its success – and most of all to Rep. Tony Coelho.