In Memory Of My Son, A Plea And A Plan To Make Synagogues Wheelchair-Accessible
04/12/2013 - 13:07
Shelley Cohen
Shelley Cohen
Shelley Cohen

Today, April 12, marks the 6-year anniversary of my son’s passing. Nathaniel was 21 yrs old when he died from Duchenne Muscular Dystrophy (DMD) a progressive deteriorative condition that caused him to spend most of his life using a wheelchair.

There is no cure for DMD, so I always felt glad that he lived in a day and age where he could have maximum independence through use of a motorized wheelchair. I also felt grateful that he lived in an era when the American Disabilities Act became the law of the land so that he was able to physically partake in life in a way prior generations of boys with Duchenne (it affects only males) could not.

However, when the ADA was passed in 1990, religious institutions were exempted from the requirement to make their facilities wheelchair-accessible because it was felt that the costs involved would be an unfair burden. I remember a time when Nathaniel was given the honor of holding the baby at my nephew’s bris. The mohel was very touched that Nathaniel was given such an honor and later went over to my husband and told him a story about an incident that took place a few months earlier. The mohel said he was on the board of his local synagogue when the decision was made to renovate the building. A discussion ensued where one board member stood up and said he knew of an architect that would help keep costs down by avoiding adherence to ADA  specifications. The mohel was shocked at this attitude and spoke up, saying how the United States passed a “midat tzedek” (a righteous law), and here this board was looking at how to avoid  it. The mohel said he was the lone voice in the room.

Now, 23 years after the passage of the ADA, many of our synagogues still have not made their facilities wheelchair accessible, relying on the grandfather clause that enables them to avoid the law’s accessibility requirements. Even though there have already been more than two decades for planning and evaluation, our religious institutions’ reliance on their grandfathered status has caused many not to deeply consider complying with the law. Perhaps the disability community and its advocates should begin a campaign to force action on this issue? Perhaps religious institutions should be given 5 years to develop an accessibility plan? And then 5 years to execute it? One can even imagine the billboards of people in wheelchairs with placards reading “Equal Access to G-d.”

But the community might need carrots as well as sticks. I understand that this can’t all be dropped in the laps of synagogue boards.  Perhaps we can raise funds for ADA expert architects to assess our religious institutions and recommend solutions. Or try to create an architectural consortium where we solicit architecture firms to give pro bono work to one religious institution at a time. Perhaps the community and or a group of funders could raise a matching fund to help defray the costs.  With some communal effort, change can happen.

I think the time has come to provide an exit ramp for the ADA grandfather and an entrance ramp for people like Nathaniel.

Shelley Richman Cohen is the founder and program director of The Jewish Inclusion Project, which conducts inclusion training programs for rabbinical students.

Comments

I know several excellent lawyers and my brother in law is one, so let me know what state you are in, and I will send you a few names, call Mayor Bloomberg, Senator Blumenthal, or Atty. Mark S. Rudy in San Francisco. Make some noise and go on your local t.v. station... Donations will certainly be provided. I have never heard anything so disgusting, and sad for your son to be so disappointed. What a terrible disease, and I hope you are still fighting, don't give up, I wish you the best in life....

Shelley, I think you are misunderstanding the meaning of a grandfather clause and an exemption. A grandfather clause means a situation in which an old rule continues to apply to some existing situations, while a new rule will apply to all future situations. However, this is not the case with ADA and religious institutions. They are exempt from the ADA, meaning they are not required to follow the law. There is no law that requires synagogues or other religious institutions to do the right thing. The impetus for doing it should come from the members because it IS the right thing to do. And although I understand your push for wheelchair accessibility, what about others with disabilities? What about large print prayer books, or accessible bathrooms, or sign language interpreters, or assistive listening systems for people who are hard of hearing? People with all different kinds of disabilities are often excluded from religious life because the community says "it's too expensive." Well, when there's a will, there's a way. You can't do it by punishment -- you need to convince communities to do it because we are all created in
G-d's image -- and we all have a right to enter and participate in our own houses of worship.

To SK3
Religious institutions are not exempt from the ADA. If you build a new House of Worship it must be built to ADA code. Houses of Worship that were already built at the time that ADA became law in 1990 were grandfathered in and allowed to remain inaccessible. I would like to see religious institutions take responsiblity to still make the changes despite not having to do it because of the law. That is the point I was making.
I also did not write about wheelchair accessiblity to the exclusion of other issues of accessiblity for people with disabilities. I was merely focusing on one aspect.

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