What I Learned from Hannah: A Tale of Disabilities & Intergenerational Love

By Guest Blogger Andrea Oxman, Director, Special Needs Programs, The Jewish Community High School of Gratz College

I would like to tell you about my beloved student Hannah.  She has been a committed participant in the ATID (Advocacy, Transitions, Involvement and Development) program since its inception six years ago. At that time a Kehillah director relayed a request for Judaic programming to JCHS from a new assisted living community.

Since one of Hannah’s strengths is her ability to socialize, I thought she might enjoy interacting with the senior citizens as well as other teens. Hannah thrived in the ATID program.   She would go up to residents with no hesitation and ask them: “Can I tell you about myself?” and their answer each time was indubitably “Yes.”  Hannah, who has intellectual disabilities, wanted to “read” when we had plays, so she repeated the lines that were quietly read aloud to her.  Each year several other students who had learning, emotional or intellectual disabilities joined the class.

Our Judaic art specialist Dodi Klimoff, Rabbi Sandi Berliner and I created ATID, an intergenerational inclusion program for all teens. In addition to celebrating the Jewish holidays as a community, the teens together with the elderly residents of Sunrise of Dresher worked on Judaic craft and cooking projects, participated in games and engaged in discussions on various thought-provoking topics. The success of the ATID program has prompted our JCHS administrative team to change the focus of the special needs programs. JCHS is now providing supports necessary for successful inclusive educational programming and service learning opportunities for teens with special needs throughout all our branches in the community.

Hannah received Certificates of Merit and Service Learning as well as the Rina C. Goldberg Memorial Award for Commitment to the Jewish Community High School (JCHS) at our 2012 graduation ceremony. Hannah’s parents have brought her up with such a terrific outlook on life and have given her many wonderful opportunities.  Through ATID we all shared a lot with one another and there was a strong feeling of community among all the participants. I will miss Hannah as she is going to college next year.   I have been her teacher for the last seven years.  In reality though, it is Hannah who has taught me so much!

— Andrea Oxman

Independence Equals Inclusion: The View Through A Mother’s Eyes

By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers

He gets up with an alarm clock. Actually, it takes two of them for him to get up.  He goes to bed pretty late, especially on days when he is not working.

It takes him a bit to get going in the morning and if he doesn’t have time to make a real breakfast, he either pops something in the microwave or grabs something at the nearby supermarket.

Had a roommate once. Prefers to live alone.

After work, he might pick up something for dinner, take in a quick round of golf, go fishing, work out or play video games.   He might even do laundry or a bit of cleaning.  Mostly, he leaves it to the housekeeper who comes each week.

He likes to eat dinner after 7 p.m. and eat in front of the TV. Most evenings, he and a couple of buddies watch TV together and they gather at each others homes.  Snacks and soda round out the evening.

His refrigerator is stocked with food…and beer.

He goes to bed when he feels like it and never before 10 p.m. On nights when there is no work and no morning commitments, he might hit the bed at 1 a.m.

He showers every day when he decides.  He shaves when he feel likes it. He drinks as much diet soda as he wants.

He went to a community college and works his dream job on a golf course. Free lunch, free golf and a nice hourly wage.  He has an intellectual disability and a couple of times a week,  someone comes by to help him with his on- line banking or help him process what might be on his mind.  They might try out a new recipe, figure out a new bus route or schedule health care.

Someone else helps him send defibrillator reports to his cardiac team, monitor his CPAP use and help with his hearing aid maintenance.

Forty years ago, someone like Jon might live in an institution.  Today, many people like Jon live in group homes.

My son, Jon, lives in his own home because a home by any other name is not inclusion.

— Jo Ann Simons

Love: The Universal Language

Dear Friends,

Every once in a while you encounter something so moving it that transcends nationality, ability and language. This video is such an experience. It was recorded in Hebrew but needs no translation.

I hope you enjoy this as much as we have.

— Jay Ruderman

 

Let ADA Anniversary Prompt Jewish Communities to Act in Good Faith

By Guest Blogger Mark Pinsky, Religion writer and author

Although religious leaders were at the forefront of the movement for the Americans with Disabilities Act, which observes its 22^nd anniversary today, their lobbyists effectively wrote themselves out of it jurisdiction. That meant that for faith communities the movement toward inclusion has largely been voluntary – spurred by the efforts of activists and advocates, especially parents of young people with disabilities.

Among the most inspiring and affirming stories in my new book,  Amazing Gifts: Stories of Faith, Disability and Inclusion are those from the Jewish community, which demonstrate how much can be done:

• Ezra Freedman-Harvey, of Orange County, California. Born with familial dysautonomia (FD), a rare, debilitating, neurological condition affecting only Jews, and once considered fatal, Ezra personifies the word persistence. With the support of his parents, and various branches of Judaism, he has had a full bar mitzvah, attended summer camp, become an Eagle Scout and attended college.

• Rabbi Lynne Landsberg, of the Religious Action Center for Reform Judaism (RAC) in Washington, D.C. A graduate of Boston University, Hebrew Union College-Jewish Institute of Religion in New York and Harvard Divinity School, Landsberg was a rising star in the Reform movement when, in 1999, her SUV skidded on a patch of black ice in Washington, resulting in traumatic brain injury. Landsberg battled back to become one of the nation’s outstanding advocates for people with disabilities, of all faiths.

• Shelly Christensen, of the Minneapolis Jewish Community Inclusion Program for People with Disabilities. She found Izzy Rosen, then in his 90s and in a state facility. Through the Jewish Family and Children’s Service, Christensen enabled him to locate and visit his parents’ graves in a local Jewish cemetery; to observe Jewish holidays, including a Seder with others in the Jewish disability community; and to be buried in a Jewish service.

• Rabbi David Aaron Kay, now of Congregation Ohev Shalom in Orlando, Florida. As a young man – and aspiring rock musician – he became interested in making Jewish worship accessible to those with hearing impairment and deafness. After attending the Jewish Theological he has made himself an expert in opening Jewish congregations to this constituency.

These stories – a kind of compendium of multi-faith best practices – demonstrate what can be done where there is a commitment. The hope is that readers will see what has been done elsewhere, often at very little cost, and say: “Our congregation could do that.”

Note: Today is also a very special day for me. I’m honored to be among those individuals and organizations selected for recognition by the American Association of People with Disabilities (AAPD) “Justice for All” awards in a ceremony on Capitol Hill.

— Mark I. Pinsky

Music plus Motivation = Milbat: A Guitarist Returns Home

By Jay Ruderman

As Plato told us long ago, necessity is the mother of invention.

One recent example of this is a very special assistive device developed by a volunteer at Milbat in Israel. It’s a clever invention with a unique purpose: it allows 20-year-old Oved to play the guitar, something he never thought he would do again.

Everyone knows you need two hands to play a guitar: one for the frets and the other to strum. However, even after losing his arm in an automobile accident, the young man now is able to strum using foot pedals in place of the missing arm.

During his rehabilitation, Oved turned to Milbat with the hope that they could help him play the guitar again. But the occupational therapists he met with could not find a solution.  That’s when the challenge was passed on to Uri Pinhasi, a Milbat volunteer who is an industrial designer for the Israeli Aircraft Industry.

Uri, who was as determined as Oved was, developed a series of models over the next ten months. After countless false starts, he developed one that replaces the fine motor movements of strumming with the gross motor movements of the leg muscles, connected to the guitar with bicycle gear cables.

Milbat is an Israeli nonprofit, working with people with disabilities of all ages. For the past 31 years, Milbat has been improving their quality of life, raising their level of independence, and integrating them into the workforce and the community through an adapted technological environment.

In cases where no commercial product is available that could meet the expressed need, the Milbat volunteer team– 300 experts in the areas of technology and design– develops a new device. And Oved and others like him reap the benefits.

Recently Oved marked the one-year anniversary of his accident. The most exciting moment of the event was when he played for family and friends a guitar solo of the Israeli song that begins “To start everything from the beginning…”

I hope you enjoy this video of Oved playing the guitar. 

— Jay Ruderman

For Israeli Arabs with Disabilities, the Opportunity for Independence, Inclusion

By Guest Blogger Hanaa Shalata, Director of the Regional Center for Independent Living for Al Manal

Hello. My name is Hanaa Shalata. I was born in Sakhnin 30 years ago, the younger sister to three brothers and two sisters, in a family with limited means. My father worked in construction and my mother was a housewife.

Immediately after I was born, I was diagnosed with a severe visual condition — “blindness.” 

I was raised with a complicated set of expectations as a blind Arab girl. My family was not surprised by my cognitive abilities, often this is what is expected of a person with a visual disability – abilities that compensate for the disability.

In spite of my abilities and the expectations of me, I faced limitations and environmental barriers stemming from negative attitudes and perceptions towards people with disabilities.

Following in the path laid out by my older brother, who is also blind, I studied in a Catholic boarding school in Nazareth first with children with special needs and from the age of 10 integrated into regular classes. Life in boarding school was difficult and challenging with many rules and limits that force one to develop coping abilities and to maintain calm in the face of pressure.

University studies provided me with my first opportunity to live independently and to develop my unique social circle. At university, I developed the ability to sit for long hours typing lessons and studying, and I also got used to the idea of getting around using a cane, something that is very stigmatized in small Arab towns. At university I also became aware of the discrimination I faced both as an Arab woman and as a blind person. I was exposed for the first time to feminist theories which both angered me but also provided the impetus for change.

When I finished my Bachelors degree in education and sociology, I became aware of that I had the ability and power to create change and so began volunteering and working with a number of voluntary organizations. This social action encouraged me to greater achievements and further academic studies – culminating in my Masters degree in Gerontology.

As the years passed, I became more confident in my ability to make changes in society. This is apparent in my work today – for the last six years I have been working in the disability field in Sakhnin and established together with JDC the supportive community and with Israel Unlimited I became the director of the Regional Center for Independent Living at the Al Manal Organization. As I become aware of the needs in the community around me, I find the ability to assist, to change, to help individuals, families and the community.

The Regional Center provides a variety of services for adults with disabilities, including classes in career skills and placement, peer counseling, life skills training and programs to raise awareness.

One example of the impact of the CIL on Sakhnin is the work done with the religious leadership and institutions in the town. The CIL organized a workshop for Muslim and Christian leaders on disability issues and rights which inspired these leaders to make the mosque and church accessible.

The CIL is currently operating out of a rented space. Due to the significant impact the CIL has had on people with disabilities and the community as a whole in the Sakhnin, the Sakhnin municipality has allocated a piece of land for a permanent home, and the National Insurance Institute recently approved funding for building the permanent home.

— Hanaa Shalata

Let’s All Spread the Word to End the R-Word

By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO, Cardinal Cushing Centers

“Sticks and stones may break my bones, but words will never hurt me.”

Most of us have heard this saying during childhood, but the student speaker at last month’s Cardinal Cushing Centers graduation really brought into focus how far it misses the mark. Erik began his graduation speech with the usual expressions of gratitude, but then he said: “People say that ‘sticks and stones may break your bones, but words will never hurt you.’ People are wrong. Words do hurt.”

Ask any special education students or their families what they think of the words “retarded” and “retard” and they will tell you: they hurt. This is poignantly demonstrated in this moving video.

Why do we continue to use words after we have been told they hurt?

Special Olympics, Best Buddies and over 200 other organizations around the world have joined together to Spread the Word to End the Word™ and build awareness for society to stop and think about its use of the R-word. That R-word is something hurtful and painful – “retard” or “retarded.” Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families, and friends. The R-word is just as cruel and offensive as any other slur, as is made clear here by a couple of Glee cast members.

As I have learned about this movement for the humanity and dignity of people with intellectual disabilities, the Ruderman Family Foundation has decided not to allow the use of this word in any of our communications or business. The R-word has no place in philanthropy or society.

Please join me in raising the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and pledge to stop using the R-word.  Please visit www.r-word.org to make your pledge today to spread the word to end the word. I did.

— Jo Ann Simons

The Dangerous Kind of “Reform:” When Budget Cuts Cut Off Lifelines

By Jay Ruderman

Dear Friends,

There are times when I take the opportunity that Zeh Lezeh affords to share with you something that simply but powerfully reminds us of why we do what we do here at the Ruderman Family Foundation. Putting the critical importance of services for those with disabilities in clear and poignant human terms, Mike Ervin’s op-ed that ran recently in The New York Times (see below) demonstrates more than any study possibly could how tenuous the safety nets are that mean the difference between truly living and barely surviving.

— Jay Ruderman

“Times are hard. The states are broke, and some say it’s the fault of people like me, sucking up Medicaid dollars.

Last week, here in Illinois, the governor signed into law $1.6 billion worth of Medicaid “reform.” The ax came down on disabled children and young adults who are M.F.T.D. — medically fragile, technology dependent — those who have tracheostomies, are ventilator-dependent or need central intravenous lines. New co-payments and income caps could mean that many of these young people will no longer be able to receive care at home and will have to be institutionalized. No more free lunch for them!

I’m 55 years old, and I’ve been sitting in some sort of wheelchair all my life. My wife sometimes uses a motorized wheelchair, too. We live in a condo with our two dogs, and we depend on public programs like Medicaid to keep us out of nursing homes. But the reformers have been on such a scorched-earth rampage of late that I dread that the next state budget will be the one that cuts us out.

My wife and I employ a pit crew to help us do all the ho-hum stuff everybody does every day, like getting dressed and cooking and the laundry. Someone lifts me out of bed each morning, washes my face and combs my hair and gets me set up for the day. Someone else lifts me onto the toilet and into the shower and hoses me down at night. That’s how it will be for the rest of my life. But it’s really no big deal. I hire and fire and direct the members of my pit crew, and their wages are paid by the state through a Medicaid-waiver program.

My wife and I would probably be considered middle class; she works full time managing a disability rights organization, and I’m a freelance writer. But we would become dirt poor mighty fast if we had to pay for this assistance ourselves. It would probably cost us at least $50,000 a year. Anybody out there have that much discretionary cash sitting around?

If we lost the waiver for this home care, I guess we’d have to let ourselves become impoverished to the point where we could qualify for ordinary Medicaid, which would then have to pay for our incarceration in a nursing home — probably at a much higher cost. That won’t happen, right? It’s too ridiculous. Surely the Legislature can add an additional tax on 40-ouncers or casino profits or come up with some creative way to address the fiscal mess. Each time budget negotiations build to a boil, I reassure myself that common sense, empathy and justice will prevail.

But that’s gotten harder to believe after this latest round of cuts. It’s a nightmare: the vicious, man-eating Reformasaurus has gone berserk. Even holding up M.F.T.D. kids as human shields can’t ward it off these days. If it will swallow them up, what chance is there for a bearded, sarcastic, unsympathetic character like me?”

Mike Ervin is a writer and disability rights activist.

New Population Study Reveals Communal Ignorance, Spotlights Need for Change

By Guest Blogger Jason Lieberman, disability advocate and Vice President and Treasurer of Matan: For Every Child. For Every Community. The Gift of Jewish Learning, who was diagnosed with Cerebral Palsy at 11 months.

While earning a BA in American Studies, I learned the importance of community studies and censuses as indicators of both the relative standing of communal subgroups, and communal needs and priorities. As I studied Nonprofit Management, earning an MPA, I learned their importance, as primary tools for funders, setting allocation priorities, and organizations, setting program and service objectives. Therefore, as a disability advocate, firmly entrenched in the Jewish community, I eagerly anticipated the publication of the 2011 Jewish Community Study of New York.

I was disappointed, not by what it said, but by what it omitted. Rather than showing our engagement, and growing communal impact, through its omissions, the study demonstrates the extent to which communal ignorance persists concerning people with disabilities and their families’ impact on all aspects of Jewish communal life.

By my count, the study mentions the terms “disability” and “disabilities” each four times, all in sections referring to human services requested or unemployment and poverty, and the term “special needs” once, in reference to requesting human services. “Disabled” appears three times in the demographics section, but only as a cause for unemployment and poverty.  Furthermore, while education appears 38 times, and Jewish education 11 times, special education, of either the Jewish or secular variety, was not mentioned.  Additionally, while the study mentions engaging Jews of almost every other subgroup, we are ignored in that context.

Taken together, these facts suggest that the study’s authors view people with disabilities and their families as solely needing care, rather than people capable of being engaged, empowered and integrated community members. This, is not only untrue, and a disservice to the disability community, but, by ignoring over 20% of the population’s impact on both the community’s challenges and opportunities, most likely causes inaccurate assumptions and conclusions. In doing so, the authors powerfully demonstrate the need for more effective advocacy.

Let us, the Jewish disability community and its allies, therefore, use this report as a call to action, mobilizing through education, empowerment and advocacy, for fuller Jewish communal appreciation, recognition and integration of people with disabilities and their families.

— Jason Lieberman

New Inclusion Index Measures Levels of Inclusion in Community Life

By Guest Blogger Suzanne Cannon, Director of Resource Development, Bizchut, The Israel Human Rights Center for People with Disabilities

The results of Israel’s first-ever Inclusion Index created by Bizchut, The Israel Human Rights Center for People with Disabilities, in conjunction with the Ruderman Family Foundation were published in March 2012.  The Index intends to improve the extent to which persons with disabilities are included in community life by examining inclusion in the areas of education, housing, employment, transportation, leisure and access and encouraging local authorities to take steps to address gaps revealed.

The first pilot phase looked at six local authorities: Carmiel, Dimona, Hod Hasharon,Holon,Nazarethand Shoham and focused on inclusive education and the extent to which children with disabilities were effectively integrated into the local education system.  Information and data were provided by the Education Ministry and the local authorities themselves. The Index found that Shoham is the most inclusive city with the total number of children with disabilities exercising their right to inclusion in the regular school system greatly surpassing those of other places. Carmiel and Hod Hasharon came in second and third places respectively whileNazarethand Dimona had much weaker grades andHoloncame in last. Responses from the local authorities were mostly encouraging with Holon requesting a meeting with Bizchut to discuss the findings and look at ways of improving inclusion in their city. National media coverage of the findings served to expose the general public to the issue.

By placing a spotlight on local authorities the Index highlights their responsibility to take steps to promote and facilitate inclusion in their localities in line with the social model of inclusion. Bizchut is now planning the second stage of the project during which we hope to look at inclusive education on a national scale and examine levels of inclusion in various areas among the 10 largest cities in Israel. We look forward to the day when cities actively compete to be at the top of the Index or when inclusion is so part of society that we no longer need to measure.

— Suzanne Cannon