The Jewish Week - Print Edition
‘A’ Needs To Stand For Action On Inclusion
Special To The Jewish Week
I recently visited a synagogue that had a special guest speaker who had been brought in for JDAIM - Jewish Disabilities Awareness and Inclusion Month, which is marked in February. The very well-meaning speaker represented a national disabilities organization, but his talk objectified individuals with disabilities, saying their existence on this earth is to be a light for us “normal” people. Regrettably, he also described a girl with disabilities as having an “affliction.”
While his stories brought many in the congregation to tears, as I watched people crying I questioned whether his tales were helping move the needle towards greater inclusion in our Jewish communal infrastructure. I think not. Constantly framing people with disabilities as a rachmonis, a tragedy, does not help. I believe this attitude ultimately perpetuates a stereotype that prevents full inclusion. Yes, it may help influence people to give more tzedakah to organizations that work with the disabled, but people with disabilities want a hand up and a welcome in, not a hand out.
JDAIM, which began in 2008, draws attention to the lack of inclusion that exists in our Jewish communal institutions such as synagogues, schools, summer camps and Jewish organizations. Eight years have passed, and as awareness has increased the question begs to be asked: How much more inclusive have our communities really become? Can we look at our Jewish day schools and congregational schools and summer camps and say that the children with some form of disability are properly represented? Does every fifth person who is part of our synagogues or Jewish organizations have some form of disability?
In the marketing world there is an acronym that describes the process of affecting attitudes: A-I-D-A, standing for Awareness, which leads to Interest, which leads to Decision, which leads to Action. This is the eighth year of the awareness process. At this rate it will take another 20 years until we have serious commitment to action. Frankly, the awareness piece seems to be happening at a slow and steady trickle, but I want more and I think the close to 20 percent of the Jewish people who have some form of physical, developmental or learning disability are ready for more.
To see people with disabilities as “the other” enables principals and boards of directors to reject Jewish children with disabilities from our day schools and preschools. It allows synagogues and Jewish summer camps to remain inaccessible to those with physical disabilities by hiding behind the American Disabilities Act (ADA) that was written in 1992 with the intention of not causing an undue financial burden to religious institutions. Our Jewish infrastructure uses the law as an excuse to claim they can’t afford to become accessible. The time has come for our Jewish institutions to understand that being accessible is simply part of being truly Jewish and a cost of doing business.
Yes, new and expanded programming is taking place in the synagogue world through the efforts of UJA-Federation and in the Orthodox, Conservative and Reform movements. Yet in a day and age of pervasive idea exchange and rapid change and adaptation, inclusion for those living with disabilities is still progressing at a snail’s pace.
The desires of people with disabilities and their family members with disabilities are the same as those of people without disabilities: To feel included and as an integral part of the fabric of the community. I see many institutions in all Jewish denominations grappling with being proactive about the inclusion of the LGBTQ community. Why aren’t our communities grappling in the same way to include those with disabilities?
The time has come for the “A” in JDAIM to stand for “Action.” Each of us needs to look at the Jewish organizations with which we are involved — day schools, yeshivas, synagogues and camps — and push them to make the decision to include the fifth of the Jewish people who have some form of physical, mental developmental or learning disability. We must take a stand to include people in this segment of our population if we want them, and their families, to remain part of the Jewish people. Instead of waiting a year until next February to become more “Aware,” let’s make the decision to take “Action” in our own communities to include Jews with disabilities, every day and every month.
Shelley Cohen is founder and director of The Jewish Inclusion Project
The NY Jewish Week - The New Normal
To Be Inclusive or Not To Be Inclusive: It Shouldn't Even Be A Question
03/04/2015 - 12:18
Shelley Richman Cohen
Editor's Note: Last spring we shared a blog about the Shefa School written by Director Yoni Schwab.
I just opened an e-mail inviting me to this year’s GISHA conference for Jewish educators entitled “Excellence in Inclusion.” For those of you who aren’t familiar with it, GISHA is a well-known educational conference that is held and organized by the Center for Jewish Special Education at Boston's Hebrew College. When I read the title I happily thought to myself, “Yay! A Jewish educators conference focusing on inclusion of kids with disabilities.“ Then I read that the keynote is entitled “To Be Inclusive or Not To Be That Is The Question - Inclusion in Jewish Education, Making it Work and Recognizing When it Doesn’t.” The address is to be given by the Assistant Head of a new Jewish school in Manhattan for children with language-based learning disabilities.
Within seconds my initial excitement waned, rapidly replaced by feelings of disbelief and anger. Inclusion of children with disabilities in Jewish Day Schools is an area in which our community lags behind where it should be. So how is it that our Jewish communal educators convene a conference on Inclusion and invite a keynote speaker who will justify exclusion? When will Jewish educators understand that it is time to stop saying it's okay to exclude Jewish children from our Jewish communal/educational and religious infrastructures? When will the time come when our educators realize that separate is not equal?
Yes, children with developmental and learning disabilities may need smaller self-contained learning environments. But they do not need to be in separate buildings where they are kept apart from their neuro-typical peers. The children who need to learn in smaller self-contained classrooms should feel they can attend the same Jewish schools that their siblings go to. They should and can be mainstreamed for lunch, gym, tefillah and any additional subjects they can handle.
Jewish educators need to encourage a “school-within-a-school” model that a number of communities like Gateways in Boston and Sinai Schools in New Jersey have adopted. Their programs are not perfect, but at least families with children who have disabilities feel their community is making an attempt to include their children in the Jewish educational framework.
Creating new stand-alone Jewish schools for children with disabilities, though often started with the best of intentions to help Jewish children with language-based learning difficulties attend a Jewish school, has in essence muddied the waters. Instead of adopting new pedagogies into their schools that include differentiated and project-based learning so that they can teach to a wider level of learners, Jewish educators in the exclusionary schools now get to counsel children out of their schools and say “go to the new self-contained school because we can’t give you what you need.”
There are school models out there that exhibit inclusive settings for all types of learners in both the public and private sectors like The Henderson School in Boston, The Luria Academy in Brooklyn and High Tech High in San Diego. Jewish educators need to hear the directors of these schools give the keynote address at their conference on how they succeed in creating inclusive learning models for different learners. With constantly evolving pedagogical methods for children with developmental and learning disabilities it is time for our Jewish educators to create conferences that underscore new best practices in the field of inclusion rather than justifications of why our old exclusionary methods are the answer.
The NY Jewish Week - The New Normal
Inspired By Tim Howard, Recalling An Inclusive Community
07/16/2014 - 20:53
Shelley Richman Cohen
Editor's Note: The name of the student written about below has been changed to protect his privacy.
Congratulations to Germany on winning the World Cup! For those full-hearted soccer fans, I hope you enjoyed the World Cup with all the attention and talk it garnered.
As for me, I started to lose interest when I could no longer watch the amazing Tim Howard, Team USA’s goalie, after the United States team lost. But I have to admit it was more than soccer itself that kept me glued to the televised USA matches. It was the amazing story of Tim Howard and how he played with such incredible prowess and timing while having Tourette syndrome, a neurological disorder characterized by involuntary tics and vocalizations and often the compulsive utterance of obscenities.
Howard was the backbone of the team and helped Team USA surpass expectations and get to the knockout round.
His story reminded me of an experience I had two years ago when I attended my nephew’s high school graduation from a Jewish day school in the Midwest. I was sitting in an auditorium filled with over 500 people when I heard what I thought was a dog yelping. My first reaction was that there must be a service dog of some type barking, but nothing was happening to elicit that type of reaction from a service dog. I began to look about to try and see the source of the noise and I noticed that I seemed to be the only person trying to see where the barking sound was coming from. Everyone else in the room had their eyes glued to the speaker. My sister noticed my fidgeting and leaned over to me with her eyes still trained on the speaker and whispered in my ear, “There's a kid in the class with Tourette’s.”
Wow! No accusatory stares, no shushing from the crowd. Instead, everyone stayed focused on the words of the speaker accepting that the person with Tourette’s could clearly not help himself. I was really impressed and I too just started focusing on the speakers. Then the valedictorian got up to address the audience and started to give the typical student graduation speech about how much the class had experienced and grown both individually and together and how this growth will be the foundation of their futures as they go through trials and tribulations in their adult lives.
But it was at this point that the student speaker’s address took on a special air. He told his classmates that they have an exceptional reserve of inspiration to draw upon when their lives gets overwhelming, because they have been taught how to cope and overcome difficulties by the example of their classmate, Brian, the student with Tourettes’. The speaker reminded the class that they have heard Brian’s voice for four years and while listening they have learned that life throws obstacles within our paths and that our job is to cope and work our way around those obstacles and set new goals. What a life lesson to have been taught!
Too often, people objectify a person with a disability and say that they have been put on this earth to teach us all lessons. The truth is, we are all put on this earth to teach others by our example and to learn from the example of others. I do love those moments when a community reminds us that there is value in every human life and that sometimes, the most important lessons can come from our having created the most optimal inclusive places within our Jewish communal infrastructure.
I hope Tim Howard’s teammates and soccer lovers everywhere were also able to gain valuable lessons from having a player with disabilities included in the game. Full inclusion and participation by all members of society can teach us a lot about soccer, and about life.
The NY Jewish Week - The New Normal
Inclusion: Should The Perfect Be The Enemy Of The Good?
03/31/2014 - 19:46
Shelley Richman Cohen
The proverb “The perfect should not be the enemy of the good,” means that insisting on perfection often results in no improvement at all. In keeping with the wisdom of this sentiment, I think the time has come to begin the discussion of what does inclusion of people with disabilities really mean? And should we as a community allow for sub-optimal solutions? Recently I was faced with two separate situations that echoed these questions for me.
The first situation causing me to wonder about what we mean by inclusion is happening in the heart of Manhattan. For decades in our city, children with disabilities have been turned away from all of the Jewish day schools of all denominations: pluralistic, Reform, Conservative and Orthodox. Knowing the reluctance of the Jewish day schools to open their doors to children with disabilities, the empathetic and capable Ilana Ruskay-Kidd has decided to try and service these children by starting a self-contained school for students with learning and developmental disabilities called the Shefa School.
She is to be applauded by all for her wonderful desire to service this population, but in this day and age when we know about the benefits and importance of inclusion, and communal monetary resources are becoming progressively scarce, I wonder why the Jewish community is investing in yet another exclusive Jewish day school. Creating a separate school sends the message that people with disabilities need to be kept apart from the rest of the Jewish community. I know that Ms. Ruskay-Kidd would welcome the opportunity to have her program housed in a day school that could offer a child with disabilities the opportunity to be with his/her neurotypical peers in those classes where he/she is capable of being mainstreamed. At the very least children with disabilities could be mainstreamed for prayers, lunch, gym, art and music, thereby setting a more appropriate tone of “you belong.” This country's public school system has been inclusive of people with disabilities since the IDEA Act was passed in 1975. Why are our Jewish day schools still behaving as if the concept of “separate but equal” is perfectly acceptable?
The second situation: A petition for signatures was circulating between many disabilities organizations asking Congress to legislate the end of legally sanctioned sheltered workshops for people with disabilities. Sheltered workshops were initially created to give employment to people with disabilities; many also provided transportation, habilitation and opportunities for recreation. As a reward to the companies for hiring people with disabilities, they were exempt from paying minimum wage. Many organizations like the Salvation Army and Easter Seals signed on to create sheltered workshops, with good intentions, but that resulted in an imperfect situation for people with disabilities. What started as legislation to help people with disabilities find useful employment has turned into something comparable to slave labor, in which some people are being paid as low as 21 cents an hour.
Through this petition, many disabilities organizations are hoping to end these unfair practices. When the disabilities organization of which I am a board member was invited to sign the petition, a discussion ensued among us regarding whether to sign it because the workshops are so egregiously unfair or to reject it because the sudden closure of such places, upon passage of such a law, would hurt the exact people and families whom we are trying to help.
In our present economy, many of us know how awful it feels to lose a job, not to mention the burden to family members who might not be able to work full time because their loved one with a disability would no longer be safely occupied during the work day. Certainly we should legislate that no new sheltered workshops be allowed to open and instead, focus on government and private sector initiatives to create fair employment opportunities for both employer and employees. With the creation of productive, equitable alternatives to sheltered workshops, eventually they will become obsolete.
So here we are with two cases of people trying to right a wrong that has persisted in our midst for years – substandard situations for people with disabilities. Are we supposed to be satisfied with suboptimal measures that answer a pressing need or should we stay pure of heart and say if it can’t be done the right way then it just shouldn’t be done? As a community, we need to define what real inclusion means and take action to make it
happen, or we are left with a case of the perfect being the enemy of the good.
The Ruderman Family Foundation Blog - (Formerly Zeh-LeZeh)
You Had Me At Hello
August 14, 2014
by Shelley Richman Cohen
What a significant little word. I have been saying hi to this young woman for the past couple of months and last week she answered back. I was elated. And no, I’m not a guy who’s been waiting for a girl to notice me. I’m a neuro typical person trying to interact in a typical way with a young woman who has some type of intellectual disability that causes her to not look people in the eyes and to feel painfully shy.
Last week, after months of being together in the same spin class at my local JCC, she finally answered me back and today I introduced myself formally and then in reply, she triumphantly told me her name is “Sue” followed by a huge smile. It was clearly a breakthrough moment for us both and I began to think about what a wonderful job my local JCC does in helping to create an inclusive environment on the Upper West Side of Manhattan.
You see my JCC has a program called Adaptations that provides young people with various disabilities with social and vocational support and opportunities. On any given day these young people can be found taking part in any and all activities in our JCC. I personally am an avid gym rat who takes various exercise classes at the JCC. In my dance aerobics class there is “Lilly” who has a mild case of CP and some type of intellectual disability. In order to keep up with the class moves, “Lilly” likes to sing along with the music that plays. At times she can be a bit off key but nobody seems to mind; instead the instructor and/or classmates will say “hey Lilly why aren’t you singing? Don’t you know this tune?” In another spin class I take there is a woman who is blind and even if one enters the darkened room (that is the MO of a spin class) nobody stares or thinks twice about the Seeing Eye dog splayed out at her owner’s feet. On Fridays I am greeted in the lobby by “David” who has Aspergers Syndrome as he busily sells Challahs and candles for Shabbat.
My JCC has lectures, movies and programming for all ages and interspersed throughout these activities one can always find persons with varying degrees of some type of disability. I don’t know if my JCC is different than other JCCs. I hope it isn’t and if it is, I hope the Jewish Community Centers Association (JCCA), the umbrella organizations for all JCCs, will look to it as a best practice model to emulate.
This is how a Jewish community should function. It should be this way in all of our institutions – our synagogues, day schools and camps. Everyone having a place, feeling comfortable and being able to participate at whatever level they can. So that Sue who has difficulty with social interactions feels comfortable in our day schools and has teachers trained with the knowledge of how to teach to students with disabilities, and Lilly can pray loudly and off key at her synagogue having been taught the Hebrew prayers and singing them in her own way without stares and outward manifestations of unease. Just people interacting and sharing a common sense of belonging.
Inclusion of people with disabilities into the Jewish community needs to be a priority and nurtured within all of our institutions and yes, sometimes it begins with just a simple hello.
The NY Jewish Week - The New Normal
In Memory Of My Son, A Plea And A Plan To Make Synagogues Wheelchair-Accessible
04/12/2013 - 13:07
Shelley Richman 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 five years to develop an accessibility plan? And then five 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.
The Ruderman Family Foundation Blog - (Formerly Zeh-LeZeh)
Lessons From My Son
December 10, 2013
By: Shelley Richman Cohen
My son Nathaniel was a person who never could take “no” for an answer. It wasn’t that he never listened or misbehaved to get his way. He just was a believer that anything in life is possible and therefore could never accept the word no. “Say ‘maybe’ Mommy, not ‘No.’ Just maybe you could change your mind.” He always held out hope for change even if he heard the word ”no.”
I learned much from Nathaniel and his too short life, and I have found that with each passing day I have become more like him, I too have trouble accepting the word “no” and look for the “yeses” and “maybes” in life.
Throughout Nathaniel’s lifetime I heard more “no’s” than I care to remember. “No” to a Jewish Day school education (from every religious denomination.) “No” to a mainstream summer Jewish camp experience. “No” to creating accessible programming in my synagogue. I always believed in Nathaniel’s right to be a part of all of these Jewish institutions despite his muscular dystrophy, so my husband and I kept trying to find our way in and, despite many rejections, Nathaniel ultimately got to be part of the greater Jewish community through its schools, camps and synagogues.
Not only was Nathaniel a part of these institutions, he added greatly to the spirit of these places. At both his eighth grade and high school graduations he received standing ovations from both faculty and classmates alike. At camp, he not only became a camper but ultimately was put on Sport staff even as he became a quadriplegic – his mouth worked and he could use a whistle to referee the games.
The truth is wherever Nathaniel went he was cherished by all who knew him. So the question remains – why was the first response to Nathaniel’s being included in our Jewish institutions always “No.” I place the reason somewhere between fear and ignorance. At the time Rabbis, Principals, and Camp Directors just didn’t know how to see the possibilities. They were overwhelmed with the thoughts of dealing with someone who fell outside the norm with which they were used to dealing.
That was sixteen years ago and things have improved. Now almost every Orthodox summer overnight camp has an inclusion program for children with disabilities and camps run by other denominations do as well. But schools and synagogues still seem to be struggling with the concept of inclusion. It is for this reason that I have created The Jewish Inclusion Project, with the help of a grant from the Ruderman Family Foundation. The prefix “in” in the word “inclusion,” sounds so easy to do – come to me and I will let you in. But the reality is that inclusion is a very proactive process.
One has to proactively include people with disabilities. A person with visual impairment won’t think of praying in your synagogue if they don’t know that a Braille or large print prayer book is readily available from which they can pray. A family that has a member with Tourette syndrome won’t feel comfortable going to a prayer service unless they know the Rabbi and community value people with differences, even if those differences are occasionally disruptive. The Jewish Inclusion Project teaches rabbinical students and Jewish leadership how to create proactively inclusive Jewish environments in synagogues, schools, camps and Jewish organizations. Through Jewish learning, role playing, lectures and panels, TJIP teaches our future and present leaders how to proactively create communities that are inclusive of people with disabilities so that every Jew has a place at the table.
In time, I hope to prove Nathaniel correct, and see to it that there are no “no’s,” only “maybes” that can turn into an enthusiastic “YES!”