Category Archives: Disabilities rights

My Voice

Matan KochBy: Matan Koch

May 2, 2014 marked the end of my service as a Member of the National Council on Disability appointed by President Barack Obama.  Though no longer a public servant, I will never cease to work for the day when every American with a disability gets to experience the same gratitude that I felt on the day in 1998 when, for the first time, I got to be not only a recipient of government services, but that most awesome of American title’s which is “taxpayer.” (My first paycheck, like so many of our young people was from Jewish summer camp).

I still receive government services, and only at the end of my life will someone get to calculate the irrelevant question of whether or not my ultimate money paid in meets or exceeds the money paid out. That day, however, decisively demonstrated that the world would recognize and compensate my talents, and that I could contribute not only with my good works but also by paying my fair share. It is this dignity for which I will continue to fight. And it is a fight with many components.

I will add my private voice to NCD’s public voice that sheltered workshops and sub-minimum wage become a thing of the past, and that innovative vocational rehabilitation and supported employment allow all Americans with disabilities to find meaningful opportunities to add their talents to the American workforce and the American economy.

I will continue to raise my voice so that my new home state, Massachusetts, will one day not be the only state where Americans with disabilities need not artificially limit their income and assets in order to receive the personal care services that they need to work and live, but rather that in all states people with disabilities will have the opportunity to achieve and contribute to their utmost, with public support for those things that very few can afford on private resources, such as personal and nursing care.

I will continue to raise my voice to see that people with disabilities are included in whatever communities they choose, included in our neighborhoods and our schools and universities, included in our churches and synagogues, included in our places of public accommodation and, though the law cannot so mandate, in all of our private associations.  Let us hope to see the day in our lifetimes when we are truly made welcome anywhere we choose to be.

I will continue to raise my voice for the basic idea that Health Care for all should be a right and not a privilege, a right no more dependent on ethnic or socioeconomic status than on pre-existing conditions, because this must be a prerequisite for a just society in a nation with resources as great as our own. I leave government today, but know that the banner once taken up cannot be put down until we are indeed guaranteed life, liberty, and the pursuit of happiness, and we can truly say that there is liberty and justice for all.

We must doI believe very strongly in the above words, and I seek those of you who are willing as allies.  Jewish tradition teaches that it is not upon us to finish the work, but nor are we free to abstain from it.  One of the most important elements of this teaching in my mind is the recognition that there is only so much that any one person can do in advancement of a massive goal.  Alone, there is little I could do to affect the goals articulated above.  There may be little that you can do.  But if we each do our little part, just maybe our goal will be achieved. Any one of these issues could be a pivotal change in the life of someone with a disability, and your part, or mine, could be just what they need.  Further, I have not articulated the whole of the work.  I believe strongly in the items I have outlined, but I believe even more strongly in the call to action.  We need to advance the conversation on disability in this country, and so I urge each of you to do something, whether on the issues of outlined or on some other, so the day be not far when there is liberty and justice for all.

Matan Koch is a lawyer and freelance disability and health policy professional. Follow his blog or engage with him on Twitter.

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Professor Reuven Feuerstein

The Ruderman Family Foundation expresses sorrow upon the passing of Professor Reuven Feuerstein this past Tuesday and send our sincerest condolences to the family of Professor Feuerstein and the entire staff of  the Feuerstein Institute. Feuerstein is a valued partner of the foundation as we work together to further the inclusion of people with disabilities into society.

Professor Reuven Feuerstein

Courtesy: Feuerstein Institute

Jay Ruderman wrote in an article in the Jerusalem Post:
“Professor Reuven Feuerstein was a man way ahead of his time, who saw the world not as it is but as how it should be. Decades ago Professor Feuerstein told the world in a clear and strong voice that children with disabilities should not be seen for their disability, but should be seen as children who have every right to be included into society like every other child. In fact he believed that only through inclusion would a child with a disability be able to lead a full, healthy and meaningful life.

I have been proud to work with the Feuerstein Institute, which was founded by Professor Feuerstein, on a program which advocates for and counsels young people with intellectual and developmental disabilities toward marriage. In the Feuerstein Institute I have found a partner who is not afraid to push society’s boundaries in advocating for the full inclusion of people with disabilities in our society.”

May his memory be for a blessing.

 

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The Trials And Tribulations Of Raising A Taxpayer

Andrea GruberBy: Andrea Gruber

  • 500,000 individuals with autism will enter the job force during the next decade.
  • 65% of adults with disabilities are unemployed.
  • Hiring a person with a disability should not be considered charity. It is a sound business decision that brings well-qualified talent into the workforce.

I think about these statistics each and every day. They haunt me like a bad dream, and float in and out of my consciousness continually. I am driven by pure selfishness to see that these statistics do not define my son. I am the mother of an incredible young man. Marc is disciplined, hardworking, congenial, and driven to succeed. However, he has one obstacle standing in his way to long-term, meaningful employment: Marc has autism. Sadly, this single characteristic will completely overshadow all of his incredible skills and attributes in many areas of his life, especially when it comes to establishing a career.

I have three children in their 20’s and, like most parents, I want my grown children to find work that they are passionate about—jobs that not only provide them income, but also get them out of bed every morning with enthusiasm and commitment. Together with my husband, we are raising taxpayers; these are individuals we hope will work hard in a meaningful job and enjoy a rich and full life. Unfortunately, the world at large does not share our vision. As difficult as it is for a typical young adult to find his or her place in the world, a person with disabilities is that much more challenged.

Our family lives in a suburb of Detroit, Michigan. But, before you roll your eyes and think, “No wonder this young man cannot find a job,” I would like to tell you that Detroit is not what you have been led to believe on the national news. There are many opportunities here. Our area is slowly growing and its residents are committed to seeing Detroit revitalized and reborn. With that said, the economics of our area do increase the difficulty in finding employment for a person with disabilities. This is a national problem.

Marc GruberFew employers seem to realize that individuals with learning differences can bring myriad skills and talents to the workplace. In fact, it has been statistically proven that individuals with disabilities increase the overall quality of the workplace. Walgreen’s, KPMG, Merck, and SunTrust Banks have all experienced this firsthand. Each of these businesses has achieved high levels of success by employing individuals without typical resumes. For example, at one of the warehouses that Walgreen’s operates, 40% of the staff members have disabilities. It is one of their highest-producing facilities in the country. All of the employees work together and bring their skills and talents to the workplace to make this facility an incredible success.

April is Autism Awareness Month. This means 30 days during which parents, educators, organizations, and all those touched by this lifelong disability try to teach others about living a life with autism. I am hoping that within the next 30 days, there will be an employer that will look at my son’s resume and be persuaded to hire him because of his ABILITIES, not the things he cannot do. My son, like so many of his peers, is capable of much more than sweeping a floor, folding laundry, clearing a table, or watering plants. My son is bright, disciplined, hardworking, driven to succeed, and congenial, and one day he WILL be a taxpayer.

Andrea Storch Gruber and her family reside in Southfield, Michigan. She is a member of the statewide group, Parents Raising Taxpayers. Most recently, Andrea helped to organize a Community Conversation to bring light to the issue of employment for individuals with disabilities. Her son, Marc, has participated in Atzmayim, Camp Ramah in Wisconsin’s Tikvah Vocational Program, which receives funding from the Ruderman Family Foundation. His resume and visual portfolio are available upon request!

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Part Of The Community

Stacy LevitanBy: Stacy Levitan

I just got off the phone with a mother whose daughter, Sarah, has been living with a roommate in their own apartment.  The parent was marveling at all that her daughter had learned in the last two years.  Two years ago, her daughter was living at home with her parents, even though she was 30 years old.  Her mother still cooked for her, did her laundry and made sure her room was straight.  She had little to do socially and tagged along with her mother on a lot of her errands.

This does not sound like the story of a typical 30 year old.  But Sarah is a person with disabilities.  And the story of her living at home with her parents and not having much to do is, unfortunately, very common.  Most people with disabilities in this country live at home, dependent on their parents, because they are unable to find the support to move out on their own.  This dependence on the parents is difficult for aging parents and inhibits the usual growth that everyone experiences when they move out on their own.

Two things have helped Sarah ’s journey to living her own life.  First, she is in the process of getting competitive employment.  Sarah began to learn employable skills by training in a program preparing and serving lunch at a local Jewish day school.  As her skills and confidence grew, she began to feel able to look for a paying job.  She has prepared a resume and is in the process of looking for a job at a local community center.  Having competitive employment is important for two purposes:  1) she is able to have something productive to fill her days; and 2) it will help her to support herself financially.  Our community should look for opportunities to hire people with disabilities because they are diligent and enthusiastic employees who appreciate being able to contribute.

Members of JCHAI and their friends on a hayride when visiting Nonesuch Farm to learn about different kinds of farming. (Credit: Benjamin Zuckerman)

Members of JCHAI and their friends on a hayride when visiting Nonesuch Farm to learn about different kinds of farming. (Credit: Benjamin Zuckerman)

Also, people in the community have reached out to Sarah and her roommate to include them at various activities.  For instance, a local woman has them over for Shabbat dinner and to visit her synagogue.  People that she has met at her internship have invited her to bridal showers outside of the internship.  This kind of inclusion enhances the other social opportunities that make people with disabilities feel happy and engaged.

People with disabilities have a lot to contribute to our communities.  With the right supports, they are able to lead the full lives that we have all come to expect for ourselves.

Stacy Jarett Levitan is Executive Director of JCHAI – Judith Creed Homes for Adult Independence — an agency selected for the Slingshot Guide Supplement on Disabilities and Inclusion.  JCHAI is in the Philadelphia area, providing supports to enable adults and young adults with intellectual disabilities and autism to live integrated in the community.  She can be reached at stacylevitan@jchai.org or 610-667-7875.

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Is Accessibility Of Public Spaces So Impossible?

Beth SteinbergBy: Beth Steinberg

As I skied down that gorgeous piste on January 27th, I wasn’t considering that I was about to make myself a living monument to Jewish Disability Awareness Month. That came a few days later, after I fell, had been surgically repaired and was hobbling down the hallways on my brand new crutches in the lovely little hospital in rural Sallanche, France, in the shadow of the majestic Mont Blanc.

Jay Ruderman is fond of saying “everyone in their lifespan will experience disability in one way or another.” He explains further, “people with disabilities are…the one minority group that we will all join one day as we age.” Sobering. A sub-group that we are all likely to experience, whether because of illness, injury or some other aspect of the aging process.

Before you go and stick your head in the sand, consider some facts about disability. People with disabilities are the largest minority group worldwide, an estimated 1 billion people. This is a number that will grow, by the way, as the world’s population grows and as medicine helps us live longer. As a matter of fact, in countries where the life expectancy is over 70 years, people may experience disability for an average of 8 years, or 11.5 percent of their life span. Compelling, no?

I didn’t need to fall that day in order to understand disability. Quite frankly, as a parent to a child who walked at the age of 6, and who continues to need significant assistance navigating his life, I get what disability is about. And yet, to experience firsthand the problems of “crutching” around Jerusalem is to remind myself in a truly palpable way of the challenges that people with physical disabilities in particular experience every day, in a city that is probably one of the least accessible in the world.

Yes, I know that Jerusalem was built 2000 years ago. I get that its infrastructure was not exactly designed by an urban planner and that roads that wind and climb were originally made for mules, not cars. But it’s 2014, and Israel is a country where a certain percentage of soldiers become disabled due to war and army service, separate from those who develop disabilities at different points in their lives and those born with disabilities. It’s time to step up to the plate and force compliance in Jerusalem, as well as in the rest of the country and worldwide, certainly in countries with the ability to support such efforts.

Just recently I was in my favorite local sushi restaurant. On the surface it seemed accessible, that is until I asked to use the restroom, which was down a few stairs. What got left out of the architectural plans and what official signed off allowing the space to open when laws have been set into place that require handicapped accessibility? It boggles the mind.

Beth Steinberg walkingI’ll bet that almost every restaurant on Jerusalem’s popular Emek Refaim stretch lacks accessible restrooms, let alone accessible entrance ways and pathways. And that goes for one which recently underwent a lovely renovation. On my first visit, I noted that the bathroom is up a flight of stairs. I haven’t gone back.

That’s not all. In Jerusalem, ramps are built at the kind of angles that nobody would want to use them without fear of hurting themselves.  Walking paths are continually built from a polished Jerusalem stone that becomes slippery to the point of being downright dangerous during winter rains. And sidewalks remain the favorite place for parking one’s car – never mind pedestrians, babies in strollers, wheelchairs and yes, people on crutches.

Jerusalem, of course, is not alone. For the nine years that we pushed a stroller/wheelchair in urban Brooklyn and NYC we struggled with a mass transit system that wasn’t completely accessible (especially then), as well as with uneven sidewalks and inadequate ramp cuts. I still have lingering elbow problems from maneuvering through snow, over ice, up staircases and through the crowds, in small shops so crowded and narrow I had to leave. I’ve traveled throughout Europe and wondered at the continued inability of major cities – think Rome, Paris and London – to make their cities, their public spaces, their mass transit systems completely accessible. Each one, especially when it comes to mass transit, has complicated access points for anyone dealing with any kind of significant physical disability. If you’ve ever shlepped a suitcase up and down the staircases in the London Underground you know what I’m talking about.

As for me, I’m still getting a handle on this crutches thing. I’ve gone out just a bit since I got home and even the trip to my local health clinic wasn’t exactly a walk in the park, located as it is on a steep street with tough sidewalk access from the car. I’d like to get into work but I’m worried about the elevator to the 4th floor, it doesn’t always work, and the entrance into the building, not so perfectly pitched, and our flooring is a bit uneven.  I have a presentation I’m making next week – hoping to find a way to get into the building safely, otherwise I won’t be able to go. Forget about my favorite locations, like the outdoor market, Machane Yehuda, and even my new coffee place around the corner, down a flight of stairs. Until I get more secure handling stairs, it’s just not worth the risk.

But it’s only a couple of months. By April, I should be up on two feet, working at therapy and getting myself back to my crazy schedule of two jobs, working out a few times a week and generally running myself ragged. Because I will be able to – thankfully. What if I couldn’t? Quite frankly, I’d be considering moving out of Jerusalem.

So next time you think to yourself, “We don’t have any people with disabilities in our neighborhood,” consider the possibility that they’re shut into their houses because they’re simply unable to maneuver local streets and byways safely. I say it’s time for a change.

Beth Steinberg is the executive director and co-founder of Shutaf, offering year-round, inclusive informal-education programs for children and teens with disabilities in Jerusalem. Shutaf is committed to a teaching model that welcomes all children – with and without disabilities – regardless of educational, religious and socio-economic differences. Engage Shutaf on Twitter, Like them on Facebook, learn more about inclusion on their blog or, if you love pictures, follow them on Pinterest!

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All Year Round

jo ann cropBy: Jo Ann Simons

The Jewish community is celebrating Jewish Disability Awareness Month this month. It is a time to bring more attention and awareness to the issue of disability. I do not know when it started. I do know that it did not exist in 1979, when my son was born with Down syndrome and 4 heart defects.

I know this because the issue of disability and especially intellectual disability was something that made most of the Jewish community uncomfortable. Religious women were being told, by their rabbi’s, to give up children with Down syndrome for adoption and then require that they be adopted by Jewish families.

As a Board member of the National Down Syndrome Congress at that time, it made me and other Jewish board members feel much shame, as we knew that this requirement meant that it was unlikely that these children would be adopted. Few Jewish families were lining up to adopt children with disabilities.

I learned that Golda Meir was so ashamed of her granddaughter with Down syndrome that she refused to acknowledge her existence and she wrote Meira out of her autobiography.

It was against this backdrop that I was determined to do my part to make my son a full and equal member of our Jewish community. I can actually say that he has been welcomed and celebrated each step of the way: at 12 weeks old, he began day care at the North Shore Jewish Community Center and his therapist came there to provide him services and the other children learned sign language alongside of him. He continued at the “J” in all aspects of camping where he was the only camper with a significant disability. He began religious studies at age 5 at Temple Emanuel and became a Bar Mitzvah, Confirmed and Post-Confirmed.

JDAM logoThis is not about Jon but about the fact that our community needs an awareness month at all. It’s actually sad that we join the list below (and I am not sure that it is even a complete list) in vying for attention to disability issues.

Disability Awareness Calendar 2014

February
Jewish Disability Awareness Month
AMD/Low Vision Awareness Month

March
Intellectual and Developmental Disability Awareness Month
World Down Syndrome Day March 21, 2014

April
National Autism Awareness Month

May
Mental Health Month
National Children’s Mental Health Week May 2-8, 2014
Mental Health Awareness Week May 12-18, 2014
National Anxiety and Depression Awareness Week May 4-9, 2014
National Schizophrenia Awareness Week May 19-25, 2014

June
National Post-Traumatic Stress Disorder Awareness Day June 27, 2014

September
National Deaf Awareness Month

October
National Disability Employment Awareness Month
ADHD Awareness Month
National Down Syndrome Month
Rett Syndrome Awareness Month
Disability History and Awareness Month
Learning Disability Awareness Month
Mental Illness Awareness Week (MIAW) – First week in October. October 3-9, 2014
World Mental Health Day – October 10, 2014
OCD Awareness Week October 9-15, 2014

November
Epilepsy Awareness Month
Mental Health Wellness Week  November 9 – 15, 2014

December
International Day of Persons with Disability (United Nations) – December 3, 2014

Some might suggest that disability awareness should be celebrated all year long but I suggest that I hope that time comes, very soon, when awareness months are not necessary because people with disabilities are fully included in Jewish life.

Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers

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Using Dance, Music And Theater To Foster A More Inclusive Environment

Elaine HallBy: Elaine Hall

Sarah sings like an angel, but if another child joins in, she screams and retreats into a corner. Ezra draws beautiful animation, except he doesn’t want to stop putting marker to paper to connect with others.  David is sitting back in his wheelchair, head downcast, gazing wishfully at his active peers. Chava needs to move her body – all the time. Brian is embarrassed by outbursts from his brother, Jason. Kenny makes fun of kids he thinks are not as cool as he is.

How can we use music, dance, and theater to foster inclusion for these aspiring artistic and differently abled minds? Through shared creative experiences in an inclusive environment – everyone benefits.  I have had the privilege over the past twenty-five years to witness transformations in individuals with and without disabilities and their families.  How do we bring out the best in others and ourselves?

1. Focus on the ability within each individual. In Exodus 4:10, when Moses shies away from G-d’s challenge to lead the Israelites out of Egypt because he is “slow of speech and slow of tongue,” G-d replies, “I will be with your mouth and teach you what you shall speak; therefore, go.” G-d tells us to use what strengths we have to be a positive influence in the world. We all have strengths and challenges. Being a creative type, myself, it is easier for me to write a script for a play than it is for me to copy, collate, and ultimately find a place to file it. If I were judged for not being able to adequately manage paperwork, my self-esteem would be diminished, impacting all aspects of my life; in time, even my writing would suffer. By focusing on each person’s abilities, everyone has an opportunity to shine.

For a child like Ezra, whose drawings bring him comfort and calm, we encourage him.  We do not remove his markers to stop him from drawing; on the contrary, while he is concentrating on his drawing, we notice him and his work, and every time he glances up, we say, “Ezra, you’re participating.” One second of engagement turns into five, which turns into minutes – until one day Ezra takes part in all aspects of the class and shouts, “I’m participating!” We soon learn that in addition to his drawing gifts, Ezra has a beautiful singing voice and now engages in the entire class, performing solos in our productions. Ezra’s drawings become the covers for our show programs and for the T-shirt designs.   He takes an animation class and his later artwork becomes the inspiration of best selling author and illustrator, Tom Lichtenheld’s book “E-mergency!”

Elaine Hall post I

Danny Wolf, a Miracle Project Judaica participant with Jason Weisbrod, Miracle Project Judaica staff member, performing on stage. (courtesy: The Miracle Project)

2.  Join in their world.  Rabbi Shawn Fields-Meyer teaches our parent group about the Baal Shem Tov’s (founder of Hassidism)  poignant parable of the “Turkey Prince,” where the King’s son thinks he’s a turkey and hides under a table. In the story, Royal doctors cannot cure the “turkey prince,” but a sage appears and sits under the table with the prince, gently guiding him one-step at a time, patiently, without judgment, helping him to rejoin regular kingdom life. Like the king’s dilemma, traditional therapies did not work for my own son, Neal, non-verbal, withdrawn into his own world, diagnosed with severe autism. My ‘sage,’ the esteemed Dr. Stanley Greenspan OB”M guided me to enter Neal’s world. When Neal stared intensely at his hand, I stared at mine. When he screeched, I screeched. When he spun in a circle, I took his hands and spun with him, round and round for as long as he wanted, until the two of us were breathless, connecting, relishing our own unique form of “Ring Around the Rosie.” All this led to a progression of days and experiences that were magical, unique, and amazing. Bit by bit, Neal relinquished his solitary, isolated world. Gradually he merged into mine.

So, too, do we join the interests and abilities of our students.

Dr. Greenspan encouraged me to rally my creative colleagues and use these same methods to enter the worlds of other individuals with disabilities. If one of our students is too frightened to participate in class, one of our volunteers will literally hide under a table with them, until they feel confident to come out.  Suzanne was so shy when she first started classes, she stayed by the door hugging onto her mother’s leg. Our volunteer stayed beside her; never forcing her to come in the room, but rather, building a relationship with her until she felt trusting and safe to join the group.  Within a few weeks, Suzanne chose on her own to sing, dance, and act with everyone.

(Part II next week)

Elaine Hall is an internationally renowned arts educator for her starring role in the HBO Emmy Award winning documentary, Autism: The Musical. Her groundbreaking Jewish musical theater and film program, The Miracle Project Judaica, has been named by the Slingshot Guide as one of North America’s best Jewish organizations to foster inclusion.  Elaine’s memoir, Now I See the Moon, was selected reading by The United Nations for World Autism Awareness Day 2011 and for Jewish Disability and Inclusion Month 2013. Elaine is a motivational speaker seeking to change attitudes towards Inclusion through her religious and arts education programs, and through the I Win (Inclusion from Within) programs. Elaine lives in Santa Monica, California with her inspiration, her son Neal Katz diagnosed with autism at age three, and husband,  therapist, Jeff Frymer  – as she answers the call to bring The Miracle Project Judaica to communities nationwide. Connect with Elaine on Twitter or learn more on Facebook.

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