Tag Archives: advocacy

Time To Change

jo ann cropBy: Jo  Ann Simons

Everything about my new car is different. The location of the cup holders have changed, the layout of the audio system is not the same as in my old car and I am having trouble figuring out how to operate the defrost.

And when did the white appliances in my kitchen become passé and who decided that stainless steel was the correct choice?

Change is everywhere; sometimes they are minor inconveniences and other times they shift our collective thought and action.

We have to get used to both kinds.

This week we learned that, finally, the Social Security administration will become the latest federal agency to start using the term “intellectual disability” in lieu of “mental retardation.” Officials cite the change in response to the “widespread adoption” of the term “intellectual disability”.

We are witnessing the final end of the use of the “R” word. The movement to eliminate this word from our language began by self-advocates, who fiercely objected to its use and championed its elimination. They were joined by their families, friends and organizations (Special Olympics and Best Buddies  started The Spread the Word to End the Word campaign) who together stewarded a new era.

This change did not occur, as in the case of my cup holders, because of  engineers and designers of social policy, but from the widespread grass roots activism of persons with disabilities, their families and professionals.

Photo by Twitter user @sunshower70- http://bit.ly/19G5OX0

Twitter user @sunshower70 effort to end the “R” word: baked cookies for her daughter to distribute in school, to show support for her brother – http://bit.ly/19G5OX0

This has reinforced my belief in what Margaret Mead  said, “Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”

I propose that advocacy be considered the most important program for funders and policy makers, instead of an afterthought. Think of the possibilities!

Imagine what we could accomplish if the small group of committed people had armies of supporters behind them.

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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Fostering a Self-Advocacy Movement for People with Intellectual Disabilities in Israel

Friends,

Today I’m happy to share information about a wonderful project to develop leadership skills among self-advocates in Israel.

As you see, “Nothing About Us Without Us” is not only a rallying cry but also a clear direction for how best to move ahead.

What does it mean to you?

–Jay Ruderman

Fostering a Self-Advocacy Movement for People with Intellectual Disabilities in Israel

By Jean Judes, Executive Director, Beit Issie Shapiro; and David B. Marcu, CEO, Israel Elwyn

The human rights approach to disabilities shapes the piercing social message of “nothing about us without us”.  This message can raise the awareness of people with diverse disabilities, including people with intellectual disabilities, to their right to be involved in making decisions concerning all aspects of their life.  Unfortunately the actualization of this basic human right is severely lacking in most people’s day-to-day reality.  People with disabilities have been discriminated against for centuries and they have not had access to civic and political participation.  This is particularly prevalent for people with intellectual disabilities.

As a result of this injustice, a groundbreaking partnership between Israel Elwyn and Beit Issie Shapiro was created to help foster community advocacy groups for people with intellectual disabilities in Israel.  We provide the conditions, tools and accessible information necessary so that people with intellectual disabilities can be represented and heard by their immediate environment and by policy makers.  The goal is to develop grass roots leadership amongst people with intellectual disabilities and to allow for the emerging of authentic voices for this group.

Our partnership started with no experience or models in Israel from which to learn. Luckily, we have had the privilege to enter a dialogue with professionals and people with intellectual disabilities in the USA and to get a head start on this work.  People with intellectual disabilities have taught us so much and we are humbled by how well they are learning how to make their own voices heard and how to work as a group in order to impact on their environment.

Five advocacy groups have formed in Jerusalem, Be’er Sheba and the Sharon region.  Each self-advocacy group is supported by an “enabler” whose role is to help facilitate the group members to independent action and the self-management of the group. The enabler makes information accessible, aids in applying various skills and promotes opportunities for individual growth[JJ1] [JJ2]  and development. Over time, each group appoints members to various roles, such as a group leader and secretary. The enabler helps the group leader – again, a person with intellectual disabilities – to develop as a leader and to perform his or her role as well as possible.

In group meetings, the members discuss the issues that bother them in their daily lives: employment, the way they are treated by those around them, making various services accessible, quality of life at their supported living service, etc. Together they identify critical life issues and those issues where they would like to make a change. They learn to work together to achieve that change.

This unique partnership between two agencies attempting to promote an important social change and enhance quality of life for persons with disabilities has been made possible by the support of the Jewish Federation of Los Angeles.

It is our belief as agencies that “nothing about us without us” is not a cliché but a goal that can be accomplished if we believe in the power of people empowering themselves.  Working together will strengthen each of our agencies, the persons with disabilities we support and society-at-large.

David B. Marcu is the CEO of Israel Elwyn, an organization that provides support services for children and adults with disabilities and their families. 

Jean Judes is the CEO of Beit Issie Shapiro, an organization committed to social change in Israel for people with disabilities.


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The Shoulders of a Giant

Friends,

Today the United States observes the federal holiday, Martin Luther King Day. Dr. King’s soaring rhetoric and political wisdom still have much to offer us, whether we are working for the rights of people of color or of people with disabilities. I have asked Beth Zwick, our U.S. Program Officer, to reflect on the connections between these two historic movements.

–Jay Ruderman

The Shoulders of a Giant

By Beth Zwick, Program Officer, Ruderman Family Foundation

For hundreds of years, African-Americans and people with disabilities in our country have been marginalized in similar ways: by widespread assumptions of inferiority, by extreme institutional segregation, by almost universal discrimination, by denial of fundamental rights– even by enforced sterilization.

Understandably, then, “the disability rights movement adopted many of the strategies of the civil rights movements before it,” Arlene Mayerson observed in 1992. “Like the African-Americans who sat in at segregated lunch counters and refused to move to the back of the bus, people with disabilities sat in federal buildings, obstructed the movement of inaccessible buses, and marched through the streets to protest injustice. And like the civil rights movements before it, the disability rights movement sought justice in the courts and in the halls of Congress.”

The women’s movement, the gay rights movement, and early narratives of disability activism all drew on iconic images and ideas derived from the African-American civil rights movement. In fact, the very language of the 1990 Americans with Disabilities Act (ADA) was lifted from the 1964 Civil Rights Act.

More recently, however, scholars and activists have questioned whether a focus on civil rights has best served the disability community—or whether we should instead be demanding inclusion under the much broader umbrella of human rights. Human rights are the focus of the recent United Nations Convention of the Rights of People with Disabilities (CRPD), for instance. Shockingly, the U.S. failed to ratify this relatively benign international agreement—reminding us that fear and reactivity are alive and well in America today.

So there is much work to be done. But for inspiration we still have Dr. King’s legacy of patient, thoughtful, farsighted struggle on behalf of all marginalized people.

“If I have seen further it is only by standing on the shoulders of giants,” said Sir Isaac Newton. Today let us honor the man whose powerful shoulders support so many campaigns toward a more just and humane world for all.

Happy Birthday, Dr. King.

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A True Pioneer

Friends,

My colleagues in Boston are telling me about the passing of Rex Trailer, a popular children’s television show host half a century ago. He is being remembered as not only a great entertainer but also an exemplary human being. Rex Trailer earned the respect and devotion of fans, coworkers, and – long before modern ideas of inclusion – disability advocates.  Jo Ann Simons reminisces below about a man whose attitudes were light-years ahead of his time.

Do you remember Rex Trailer’s show, and his pioneering 1961 wagon train?

–Jay Ruderman

A True Pioneer

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

I remember his smile and his voice and I can still shout loudly along with the refrain of the theme song to Boomtown.

“Boom- Boom- Boomtown!”

Boomtown was a weekend children’s show on WBZ-TV in Boston that ran from 1956 through 1974. The host was Rex Trailer, a singing cowboy, who died this week at age 84. Rex rode his horse Goldrush onto the western-themed Boomtown studio set for several hours on Saturday and Sunday mornings and into our family’s only television.

My brother and I watched regularly with excitement. Rex showed us, his “posse”, special cowboy tricks and taught us cowboy ways. We were treated to songs and beloved cartoons. I cherished my weekend mornings with Rex Trailer.

Apparently over 200,000 children appeared on Boomtown over the years, and millions more watched from home. Imagine my surprise when I learned decades later that his studio audience had included children with disabilities. While schools were routinely excluding them from an education, they were welcomed as full participating members of his “posse”. I do not recall any of those children on TV as having disabilities– and I guess that was the point. Could his subtle example of inclusion have helped shape my capacity for acceptance when my son Jonathan was born with Down Syndrome in 1979?

In 1961, Rex used his popularity to further propel the movement for respect and dignity. With the organization now known as The Arc of Massachusetts, he led 18 covered wagons across the state from Greenfield to the State House steps to raise awareness of the needs of children with intellectual disabilities. Each evening the wagon train would host a campout and community event for his “posse” and their families. Highlights of the trip would run daily on WBZ-TV and radio so the general public could keep up with the wagon train– and his with educational message to the public about disabilities.

Not as well-known was his decision, following President John F. Kennedy’s assassination in 1963, to ban weapons from his television show and studio.

By any definition Rex Trailer led an honorable and inspiring life. His life and work was a gift to the people and times in which he lived.

We have never needed a reminder of what one person’s compassion and visionary leadership can accomplish more than we do today.

Rest in Peace, Rex—and treat Goldrush to some carrots from all of us.

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Unforgettable Summertime Shabbat: An Inclusive Prayer Service at Ramah

Friends,

As the days shorten and we move toward the darkest time of year, I want to share with you a summer memory from one of the summer staff at Camp Ramah’s Tikvah program in Wisconsin. Such tales of true inclusion move us deeply, all year long.

–Jay Ruderman

By Guest Blogger Daniel Olson, 2012 Rosh Atzmayim (Vocational Program Director) at Camp Ramah, Wisconsin

It’s a rainy Friday night in July at Camp Ramah in Wisconsin. The Tikvah group, teens in Ramah’s disabilities program, and Atzmayim, a college-age group with disabilities, were leading Friday night services together for the whole camp. What transpired was a prayer experience that no one present would soon forget.

The kehilla (community) grew silent as Ari– a Tikvah camper for four years and an Atzmayim participant for two — stood up to speak about his growth at camp. Ari reflected on the large circle of people who have been part of his life. He spoke of his counselors, the friends he’d made in Tikvah and Atzmayim, and the campers who volunteer each summer as inclusion buddies, spending significant time with Tikvah friends. During the speech, he invited anyone who had ever been a part of this circle to rise. Half of the room rose to its feet. He thanked everyone present for helping to shape the lives of all the campers with disabilities who come to Ramah. Now, everyone in the room was on their feet, applauding, moved by Ari’s powerful words.

But what happened next was even more moving.

Before Tyler — a second-year Atzmayim participant — began the early evening service, he covered his eyes with his prayer shawl and said the proper blessing. Many members of the kehilla may have questioned why he would need to cover his eyes. After all, Tyler is blind.  As leader of the service, though, he knew his responsibilities and his respect for tradition was clear. Tyler is also deaf, and wears two cochlear implants, which allow him to hear. So while Tyler’s tunes may have been unconventional, they were charged by a deep love and appreciation for Jewish ritual. As his index finger flew across the pages of his Braille prayer book, he demonstrated intense and meaningful kavana (focus and religious intention).

Members of the community could not contain their emotion when Tyler finished. Some were sure they felt the shekhina (divine presence) in the room. Others said they had not felt as close to G-d in a long time. One Israeli staff member wants to use Tyler’s praying as an example at home, to show that Jews with disabilities can participate in religious life and take on leadership roles. Indeed, thanks to Tikvah, that Friday night service was one of the most meaningful religious moments those of us in camp had ever experienced.

– Daniel Olson

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Being in Two Places at Once: Our Foundation’s Challenge and Advantage

Friends:

I’m writing to share an op-ed I wrote this week for ejewishphilanthropy.com.  I have been reflecting on why — even with the logistical difficulties of running a foundation with offices thousands of miles apart — the strategic advantages to having a dual presence far outweigh the challenges.

As always, I welcome your comments.

– Jay

Being in Two Places at Once

by Jay Ruderman

There’s an old Yiddish expression that says you can’t have “ein tuchus oft da ganze velt” or, simply put, you can’t be all over the place at once.

But like many foundations today, our agenda transcends nations. We work toward the goal of full inclusion for Jews with disabilities wherever they may live and we also seek to strengthen the bond between Israel and the Jewish community in the United States.

Unlike many foundations, however, we felt we could not be fully effective at this work without a physical presence in both Israel and in the U.S. Our foundation is one of the few to have its principal decision maker live in Israel, while keeping the organization headquartered in the U.S. This unusual arrangement has given us a broader perspective from which our organization and those we serve truly benefit. It has also given us the opportunity to be a peer-to-peer resource for other funders in both the U.S. and Israel.

There are times that the increased coordination required by this arrangement is challenging. But the advantage of having feet on the ground in both places, and the additional involvement with grantee programs that it provides, cannot be measured. We believe that our twin locations provide us with a distinct perspective on philanthropy. Being in two far-away places at one time truly lets us understand the special and unique relationship between Israel and the U.S. Jewish community and how to most effectively pursue our foundation and program goals.

Looking back to Israel’s failed ad campaign in 2011 to woo expatriates to return home, we had a unique vantage point. We could both see the particular forces in Israel that led to the development of the campaign and better understand why it was so poorly received among American Jews.

More recently, during the military conflict with Hamas, we were able to provide our partners in the U.S. with a first-hand account of what it was like in Israel living beneath the thunder of the Iron Dome explosions, as Israeli anti-missile defenses collided with incoming rockets from Hamas, and also report to the public about how Israelis with disabilities were adversely impacted by a shortage of services during the crisis.

Such a perspective is helpful in an environment where major Israeli philanthropists tend not to fund programs outside of Israel. At the same time, many American foundations that fund programs in Israel do not have offices and staff here, even if they visit frequently.

The fact that I choose to live in Israel makes a statement to our board and partners that our foundation understands how Israeli civil society operates. It would be hard for our foundation to be as effective without this structure, in the same way that it would be hard for a newspaper to report on a community if it did not have a presence there.

Similarly, our Ruderman Fellows program, which brings Members of the Knesset to the U.S. so that they can learn more about the Jewish community in the U.S., benefits from our presence in both places. By being located in Israel we are able to directly recruit Members of the Knesset for the program and our operation in the U.S. is able to design the right experience for the participants as well as handle the thousands of details that make these trips a success.

The power of a dual or multi-location operation for foundations should not be underestimated today. In a world where information, influence, and contacts defy boundaries, the strategic advantage of being in two places at once often translates into the greater fulfillment of goals and the coalescing of mission.

Jay Ruderman is President of the Ruderman Family Foundation.  For more on this topic, please follow Zeh Lezeh, the Ruderman Family Foundation’s blog.

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Kelim Shloovim: The Shopping Experience That Gives as Well as Gets

Friends,

Today I’m happy to introduce you to an innovative employment initiative in Israel. Recently Shikum Acher opened a gift shop on one of Tel Aviv’s most fashionable shopping districts. The shop is staffed by people with disabilities and markets high-end products made by people with disabilities. Shikum Acher’s store not only represents a successful employment model but also demonstrates inclusion to the public every day.

– Jay Ruderman

By Guest Blogger Michal Topaz, Executive Director & Founder of Shikum Acher

Eight years ago, while I was studying for my undergraduate degree, I volunteered at the Geha Psychiatric Hospital. I was exposed for the first time to people with mental illness as well as the widespread social stigma they must contend with. As a result I established Shikum Acher, a non-profit committed to developing progressive employment opportunities for people with mental health issues. The success of Shikum Acher motivated me to open Kelim Shloovim, a new store in central Tel Aviv operated by our clients.  It sells products from our factory, other non-profits, and numerous young Israeli designers. This is a new and innovative project that we hope will inspire similar initiatives in the future.

Shikum Acher’s store simultaneously increases the general public’s involvement with and awareness of the disability community. It serves as a social business initiative, providing respected and meaningful employment for members of that community– while reinvesting its profits into Shikum Acher programming. Working in the store better prepares people to work in the free market.

Kelim Shloovim is an extension of our website by the same name (www.kelimshloovim.org.il), and is a physical space in central Tel Aviv. The store is located on Dizengoff Street, one of Tel Aviv’s most popular shopping locations. It showcases the abilities of our constituents to create quality products and to run the store professionally.

The store constitutes a regular, mainstream job and steady source of income for individuals with mental illness, who have difficulty finding employment elsewhere. This framework of a non-stigmatized workplace that advocates integration and inclusion is known as a “social firm” and has been a successful model in other countries.

Tomer, one of Kelim Shloovim’s shift managers, has diagnoses of depression and borderline personality disorder. He commented, “Working here and being able to immerse myself in day-to-day tasks helps me maintain equilibrium, fills me with pride, and is helping me integrate back into society.”

Opening our beautiful new store has provided Shikum Acher the opportunity to multiply the positive impacts we have on the disability community and on Israeli society as a whole.

Visit Kelim Shloovin online at www.kelimshloovim.org.il, or in Tel Aviv at 229 Dizengoff Street.

– Michal Topaz

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Did High Expectations Begin with the Maccabees?

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

With Hanukkah approaching, I can relax knowing that my shopping is complete, my candles have been purchased, and the chanukiahs (menorahs) are cleaned and waiting to be lit. So I have had time to reflect on the miracle of the holiday.

Is it possible that the high expectations we have for ourselves and for our children began with the dedication of the Holy Temple and the victory over tyranny? I like to think that although there was only enough oil for one night, there were believers among the Maccabees who knew that more was possible from the oil. When the sacred oil lasted eight nights instead of one, did we learn that setting high expectations might be the best route to success?

I think so.  And I believe that we in the Jewish community, as in the larger U.S. society, are finally applying that principle of high expectations to people with disabilities.

For too long U.S. society has acted as though, as far as people with disabilities were concerned, the oil would only last one night. So that’s all we expected.  We built inhumane institutions and filled them, we provided inadequate medical care and little if any dental care, we segregated children into separate schools and apart from their siblings, we built “special” swimming pools and recreational facilities, and we operated “sheltered” training sites while providing little in the way of employment opportunities.

But there were believers among us who envisioned a different world. Led by people with disabilities and their families, these modern-day Maccabees believed in the light and set high expectations. They have shown us that people with disabilities can lead completely inclusive lives.

So, as we strike the match to light our chanukiah, let those candles be our call to action. Let us end the tyranny against people with disabilities. Let us empty our institutions. Let us build community living options. Let us train more medical professionals. Let us provide access to health and dental care. Let us end segregated education and include children in typical schools. Let us promote the success of inclusive post-secondary education and make community based employment available to all who want to work.

This year I will recite the traditional Hanukkah prayers, and in addition each candle will symbolize a basic human longing of people with disabilities:

First night: for inclusive education

Second night: for community recreation

Third night: for health care parity

Fourth night: for economic self sufficiency

Fifth night: for access to higher education

Sixth night: for community housing

Seventh night: for real employment opportunities

Eighth night: for family supports

Please join me in dedicating this Hanukkah to the sacred struggle for fairness, freedom, and high expectations.

– Jo Ann Simons

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Double Challenge: Disabilities in Time of War

Friends,

I want to share with you this snapshot of the recent military conflict in Israel vis a vis people with disabilities.  It was sent to me and my wife Shira by Avital Sandler-Loeff, the Director of Israel Unlimited (a project of the American Jewish Joint Distribution Committee, our foundation, and the government of Israel).

–Jay Ruderman

Dear Jay and Shira,

I am writing to describe to you some of the activities undertaken on the ground by Israel Unlimited during the recent conflict with Hamas.

Toward the end of the conflict we learned that a 45-year-old woman who used a wheelchair (and had two daughters with schizophrenia) had been sleeping on the floor in the corridor for a week because she was afraid she would not be able to get out of bed on time during the sirens at night. She called our Center for Independent Living (CIL) in Beer Sheeva. Our volunteers from the CIL arranged a room for her and her daughters in Kibbutz Hagoshrim in the upper Galilee.  Soon she was able to get a good night’s sleep in a real bed.

Over the course of the conflict those of us from Israel Unlimited– with the help of the Jewish Federations of North America (JFNA)– distributed 125 portable toilet kits, 300 first aid kits, and provided direct service to hundreds of people with disabilities in Beer Sheeva.  We worked with the emergency coordinator there and fifteen volunteers from Ben Gurion University. We were able to move almost 200 people with mental illness to more peaceful accommodations outside of the conflict region of Negev. Our coordinators in the affected communities in the Negev and the whole accessibility community worked around the clock. We checked people’s needs constantly and reacted very quickly.

Let us hope that the fire cease will continue to hold.

Avital

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Friends,
Today we have another story about the Young Adult Transitions to Work Program we support here in Boston.  Enjoy a glimpse into one young woman’s working life and, as always, feel free to leave your thoughts in the comments box provided.

You can learn more about Transitions here

– Jay Ruderman

Becky Cleinman tells us she loves everything about her life. She loves her neighborhood in Arlington, MA where she lives with her parents. She loves the dogs that live down the street. And she loves her job as a greeter at Au Bon Pain in Downtown Boston, an easy subway ride from home.

But mostly she loves her customers. “I see them every day and they know me,” says Cleinman. Although things can get pretty hectic around the lunch hour, she always manages to keep an eye open for her regulars and make sure they get taken care of.

Cleinman landed this job after completing Young Adult Transitions to Work, a groundbreaking new program the Ruderman Family Foundation established with two of our Boston-area partners: Jewish Vocational Service (JVS) and Combined Jewish Philanthropies (CJP).

Like many people with disabilities, the 23-year-old had found great difficulty obtaining meaningful employment. But as one of more than 30 area young adults who have completed the Transitions program, she has successfully learned a variety of job skills preparing her for employment. Like many of the others, she was placed in a job with a Boston-area employer—in this case, Au Bon Pain.  Another of these employers is Hebrew SeniorLife (one of the 40 largest employers in Massachusetts), which now has many Transitions graduates working at its residential centers for older adults.

Transitions doesn’t just train and place young adults with disabilities: it provides ongoing job support, maximizing the probability of success. For Cleinman, that means being able to connect with a staff member from the Transitions to Work program regularly.  “If I ever have a question, I can ask Meghan and sometimes she’ll come in and watch me and give me advice,” Cleinman says. “I know I can always call her.”

We are proud of Becky and of all of our Transitions graduates who are now able to enjoy the sense of productivity, confidence and independence that comes with a job. But with many more members of Boston’s Jewish community ready and eager to work, but still unemployed, the challenge is huge.  There is work ahead for all of us.

– Jay Ruderman

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