Greatness with Disabilities

“You don’t have to be perfect to achieve greatness.”

These are the words spoken by Danial Jacobson at the funeral of his aunt Meryll. Remarkable words for a remarkable woman.

Meryll was 66 when she died. She lived with a developmental disability her entire life, yet it did not prevent her from achieving greatness.

The greatness her nephew spoke of was the trail she blazed for others with disabilities and the lessons she taught to her family.

Meryll was a first, and a trailblazer.

In 1978, at the age of 26, Meryll moved from her parents home into what was OHEL Bais Ezra’s first home for individuals with developmental disabilities in New York City. This was on the heels of an investigation into Willowbrook State School Institution in Staten Island and the media expose of the abominable conditions there. An unexpected result of the expose was that many, mostly uninformed individuals, came away with negative impressions about people with disabilities. First, that people with disabilities require an extreme amount of care and cannot learn to be productive members of society, and second, NIMBY! If you want to open a home for people with disabilities in the neighborhood, sure, but Not In My Back Yard!

So much so, that In 1978, a house in Greenlawn Long Island that was about to open as a home for seven people with disabilities, was set on fire and burned to the ground. (The house was previously owned by John Dewey, a prodigious psychologist and educator of the early 20th Century).

I would know. A few hours before that house burned down, a colleague and I spoke at a community forum in front of hundreds of people explaining why individuals with disabilities make good neighbors and are entitled to enjoy the rights and privileges that we all do as members of a community. We were unprepared for the response of the crowd. We heard their heated opposition, saw their anger swelling and felt a surging calamity before us that required police protection to escort us out of the meeting. By dawn the Greenlawn house was ablaze. A week later another home in upstate New York set to open for people with disabilities was set ablaze.

These two episodes in tandem even in all its negative fury, resulted in a positive outcome.

The New York State Legislature passed Law 41.34. It’s also known as the Padavan Law, after it’s primary champion State Senator Frank Padavan. The law states that a group of individuals with disabilities, unrelated by blood, constitutes a single family. Therefore, moving into a home together would not violate any local zoning law prohibiting this kind of housing. The law forced neighbors and neighborhoods to address the issue of NIMBY and STIGMA. And in the ensuing forty years, hundreds of group homes opened across New York City and State. Tens of thousands of individuals with disabilities have been able to enjoy the benefits of living in such group homes and enjoying a contented productive life.

1978, the year Meryll moved into her new home, was a tumultuous historical time. The Shah of Iran was overthrown by the Ayatollah Kohmeni, the second oil embargo was on its way, the US economy went into a recession, the auto industry in a depression.

A person’s primary asset is his home. The fear existed that if one’s home was on the same block as one with people with disabilities, it would significantly reduce the value of the home. There were many published studies to the contrary. Even the documented high value sale of a neighbor’s home could not alter the apathy of uninformed, unwilling listeners.

But the law prevailed. Countless community not-for-profit organizations, their dedicated Board members and professional staff stood tall at community meetings on many an evening to advocate for people with disabilities.

To fight stigma. To battle NIMBY. To fight for the right they adore.

Meryll Siwek stood tall. Hundreds followed at OHEL Bais Ezra, with 450 men and women with disabilities now living in residences and apartments across communities of New York City and Long Island.

Firsts are trailblazers, even when fires blaze.

Meryll’s nephews, her many grandnephews and grandnieces describe the good fortune and life lessons they’ve experienced from spending so much time with their aunt. This is a legacy her nephew Danial spoke of.

May her memory be a blessing to her family.

You don’t have to be perfect to achieve greatness. You only have to want to.

About the Author
David Mandel is Chief Executive Officer of OHEL Children's Home and Family Services in New York