Tag Archives: disabilities advocacy

Feeling Connected: Jon’s Lesson for Us All

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

I should know by now that when you least expect it, profound wisdom is revealed.

I was picking up my son, Jon, at the bus station. As many of you know, Jon is my adult son with Down syndrome. He enjoys, what we like to say is a fully inclusive life. He has his own home, works, volunteers, travels, has friends, belongs to a synagogue and makes his own decisions about what to eat, how much TV to watch, when to go to bed, etc.

As we drove by the airport on the way home, Jon began talking about an upcoming trip that several of his friends were taking to Washington, DC.  He decided that he did not want to go on this trip, in spite of his joy of travel.  He said he wasn’t interested in the itinerary and “they were not even going to the Holocaust Museum,” a place he had visited many years earlier with his 8th grade synagogue class. He went on to talk about our family trip to Israel, where he said, “I visited the real Holocaust Museum,” referring to Yad Vashem, I reminded him of the time we all bore witness at Dachau.

And that’s when Jonathan summed it all up. He said, “Going to all those places, it makes me feel connected.”

I began to wonder. Is it inclusion we seek or is it being connected? Jon’s feeling of being included is about being recognized as a Jew and being part of our history. Of all the gifts our community has given him, being connected is what has meaning for him.

And while we prayed together this past Rosh Hashanah, on Yom Kippur, Jon was 90 miles away, praying at his synagogue, in his congregation, feeling connected.

– Jo Ann Simons

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Shabbat Matchmaking in Israel

Friends,

I wish all of our U.S. readers a very happy Thanksgiving. This post by Inbar’s Laurie Groner reminds us of how much we have to be thankful for today and every day– including those trailblazers who foster unexpected opportunities for friendship and love.

– Jay Ruderman

By Guest Blogger Laurie Groner, Director of Inbar

On a recent  Shabbat 40 young adults in Israel gathered for a singles Shabbaton (an event over the Sabbath).  This may not usually be newsworthy, but ours was a singles event with a difference: the participants were all young adults with disabilities. They came from around the country to the northern town of Nahariya (which has Israel’s only hotel with enough wheelchair-accessible rooms) hoping to find their bashert (soul mate).  The texts used in the workshops were printed in Braille and the sessions translated into sign language.

Making the Shabbat accessible and inclusive required incredible attention to logistics. But the payoff was fantastic! People left with new friends, phone numbers, and some with dates for the following week.  Everyone left with hope that their future could include a significant other.  In the words of Yosef, who had been shot in a terror attack: “I was overwhelmed by the intensity and caring — and by the quality of the workshops which combined Jewish values with our individual narratives. This Shabbat was a once-in-a-lifetime experience.”

This was the third annual singles Shabbat sponsored by Inbar, our organization dedicated to helping adults with disabilities navigate the road to marriage.  (Editor’s note: Zeh Lezeh followers may recall seeing the video from the first Inbar wedding a few months ago.)

Inbar was established by two Israeli friends in their late 30’s: one a computer scientist, married with children, and the other a rabbi born with severe cerebral palsy and living with the harsh reality that he might never marry or have children.

Our organization began with an email sent from one friend to another, looking to establish a social network for adults with disabilities. Within a week there were so many responses that the first meeting attracted more than 40 people from around Israel.

Inbar was operated by volunteers for three years until six months ago when the founders realized that the organization had outgrown its grassroots nature. We have registered as a non-profit and began fundraising to expand and professionalize.  So far all of the funding has come from individuals, most of whom have a friend or family member with a disability. The members of Inbar– having mastered the art of overcoming barriers– are confident that our organization will grow, make its mark on Israeli society, and become a model for programs around the world.

– Laurie Groner

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The Nalaga’at Center is coming to New York City!

By Guest Blogger Talia Winokur, the Nalaga’at Center

This January, New York City audiences will have the chance to experience a unique social and artistic enterprise – the Nalaga’at Center. The Center — based in the Israeli port of Jaffa — is a meeting place for people who are deaf, blind, deaf-blind, sighted and hearing.

The Nalaga’at Center is also home to the Nalaga’at Theater, the only theater in the world with actors who are deaf-blind. The 22 ensemble actors mount two productions: “Not by Bread Alone,” the theater’s highly acclaimed show which has been running for over four years, and “Luna Park,” the new production now in trial runs.

Both shows open a window into the special inner world of people who are both deaf and blind, living in a darkness and stillness that is unimaginable to most.

 Now “Not by Bread Alone” is set to be performed at the Skirball Center in Manhattan from January 16 through February 3. The show, a magical journey that spans various stories, dreams and locations, has been performed in Israel, South Korea and London — where it has received rave reviews. One critic called it  “a test of theater itself, the way good work can communicate across the boundaries of darkness and silence.”  (Lyn Gardner, The Guardian)

The Nalaga’at Center is also home to two extraordinary culinary venues: Kapish Café, where all waiters are deaf and communicate with the guests in sign language, teaching them a different form of communication; and the BlackOut, where the guests dine in absolute darkness and the waiters, who are all blind, serve as their guides in the unknown territory of no-vision. Replicas of both Kapish Café and the BlackOut restaurant will also be built at the Skirball Center, serving the public before and after the show.

All of us at the Nalaga’at Center invite you to join us for these unique and powerful experiences.  For more information, click here.  

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What Keeps Us Up at Night: Abuse of Those With Disabilities

Friends,

In response to a shocking news report this week, the Jerusalem Post just published my op-ed calling for a hard look at the perils of institutionalization of people with disabilities and an immediate plan to join the growing global movement toward deinstitutionalization.

Here is the link to the op-ed, or you can simply scroll down for the full text. As always, I invite your response in the comment boxes provided.

– Jay Ruderman

Managing Israel’s Psychiatric Hospitals

By JAY RUDERMAN

Until Israel takes its place alongside other progressive countries and commits to a national policy of community-based living for everyone, we should all have a hard time sleeping.  Along with Israelis across our nation, I was stunned and deeply disturbed by the news that last week law enforcement raided a psychiatric hospital in Petah Tikva and detained for questioning 75 staff members as part of a year-long investigation that uncovered widespread sexual and physical abuse at the facility.

Two days after the raid, the hospital – which had a patient population of about 150 – was shut down, and patients were transferred to other facilities throughout our country.

This is not the first case of abuse at an institution. Sadly, there have been many. As unsettling as these reports are, the investigation also showed that there were others who did not directly participate in the abuse, but knew it was happening, and did not speak up.

So much about the institutional environment and the way it operates – with its impersonal procedures, its creation of dependence on the part of those it serves, its separation from society, and its dearth of community – enables and supports a culture where abuse can be practiced with impunity.

In Israel we need to pick up the pace and dedicate far more emotion, focus and resources to creating more options for care in the community. It is in this model and paradigm in which individuals are afforded the best opportunities for growth and independence.

More than 40 years ago the United States faced its own Neve Ya’akov scandal – one that resulted when the young investigative reporter Geraldo Rivera exposed physical and sexual abuse at the Willowbrook State School, a New York state-run residential facility located in New York City.

The 28-minute video documentary – Willowbrook: The Last Great Disgrace – led to massive policy reform and, ultimately, government funding policies that promoted and supported community-based services for people with disabilities.

In my native Massachusetts in 1972, a lawsuit was filed in federal court by parents of children with developmental disabilities living in state “schools.” Judge Joseph L. Tauro made an unannounced visit to the Belchertown State School and found appalling conditions.

Under Judge Tauro’s supervision, which lasted for many years, these institutions were cleaned up and ultimately closed.

Massachusetts has one remaining institution that serves a very small number of adults with developmental disabilities, and it is expected to close very soon. It does still have state-run psychiatric hospitals.

A more recent federal lawsuit in the US, called the Olmstead case, has led to a massive shift to community care across the US. Individuals who had lived in facilities for decades have now been given the proper support for community living and for the first time are enjoying their independence in the community.

The arguments about why we must keep institutions open ring hollow. Some people insist there are “difficult cases” that require institutionalization. But the fact is that countries around the world – with the US leading in this area – are closing institutions and more and more are caring in the community for those with even the most significant disabilities.

Indeed, in the US, there are 13 states, plus the District of Columbia, which have eliminated all public institutions for people with developmental disabilities.

I am not suggesting that transitioning away from institutional care will eliminate all abuse. But it is harder to commit such acts, and harder to hide them, when people leave home every day to work, participate in day habilitation, or to go to school in the community.

It’s harder to commit and hide abuse when people with disabilities are treated by doctors and therapists with offices in the community. It’s harder to commit and hide abuse when local police and safety officials protect people with disabilities along with all other members of their community.

The media reports that Dalia, the mother of a 24-year-old man who was a patient at Neve Ya’akov, told investigating authorities “we complained to the administrator… we live in fear that tonight he will be hit or they will inject him. We don’t sleep.”

We trust that the authorities will conduct a thorough investigation of what occurred at the hospital, will uncover the truth, will identify the guilty, and will make sure justice is done.

But until Israel takes its place alongside other progressive countries and commits to a national policy of community-based living for everyone, we should – like Dalia, the mother of the patient at Neve Ya’akov – all have a hard time sleeping.

The writer is President of the Ruderman Family Foundation.

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We Have Come so Far …. Ann Coulter Notwithstanding

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

Whenever I see an old Seinfeld episode where Jerry is using one of the first portable phones, it reminds me of how many changes I have seen in my adult life. Those bulky phones now seem primitive. In reality, it wasn’t too long ago when they looked pretty impressive. Now we are walking around with phones the size of a deck of cards that also double as computers.

These thoughts also remind me of the positive changes I have seen in the disability world. We can argue the decision to hire an able-bodied actor to portray the Glee character who uses a wheelchair.  But we have to celebrate the producers’ use of Lauren Potter, an actor with Down syndrome, to portray Becky, one of the hit show’s cheerleaders.  And it was the decision to hire a 50- year-old actor with Down syndrome to portray Sue Sylvester’s older sister that I celebrated most.  Her character died in the second season, but the storyline was realistic. The life expectancy of persons with Down is now close to 60 years old but only a few decades ago it was 20.

Having depicted both a teen and an older adult with disabilities, Glee is bringing another generation of actors into the storyline. Last season ended with Sue revealing her pregnancy, and this season we have learned that baby Robin—named for the actress who played Sue’s sister—also has Down syndrome.  While we all wait to see exactly how this will be played out, I took a moment to celebrate how disability is finally being seen as just a part of humanity.

My moment of celebration was cut short when I read about commentator Ann Coulter’s recent description of President Obama as a “retard.” Despite an outcry from people with disabilities and others, she said she was not sorry for her use of the “R” word.

Coulter defended this with an irrational logic: she claimed the word is synonymous with the word “loser.”  But that is the whole point…  The high school kid who yelled “here comes the retard” as I drove my son to school was calling him a “loser.”  That is exactly how that kid wanted my son to feel.

So I can’t fully enjoy the progress we have made with Glee, because there are still those like Ann Coulter who just don’t get that the world has changed.

– Jo Ann Simons

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Abuse of People with Disabilities Cannot be Tolerated

Dear Friends,

I want to share with you an update of an opinion piece I published this week in Commonwealth magazine online.  Please take a moment to consider this serious problem.

–Jay

Abuse of People with Disabilities Cannot be Tolerated: Laws and Attitudes Must Change

By Jay Ruderman

The abuse of children is so disturbing that we will go to any lengths to prevent, educate and prosecute in what can only be called a “war” against child abuse.  However, just as disturbing but often lacking the headlines and the political will to prevent it, is abuse against people with disabilities. Unfortunately many people with disabilities can present a particularly easy target for abuse, as we have learned from recent incidents reported in the news.

In August, a person with a disability was beaten on a subway platform in Boston when he tried to help a woman who was arguing with three men.  Earlier in the year, the father of a child with a disability in New Jersey suspected that his child was being abused by a school teacher and sent his child to school with a hidden recording device.  The vitriol recorded by that teacher makes it too difficult for many to even listen to the entire recording.

These incidents and others like them demonstrate that we remain far from creating an inclusive society where people with disabilities are treated equally to those without a disability.

One can understand how such abuse occurs. Disabilities can prevent a person from getting away from an abuser or defending one’s self, and a person with a disability may be unable to call for help.  Some with disabilities may be unable or limited in their ability to tell anyone what happened to them, making abuse against these individuals particularly ruthless and tragic.

More troubling yet, many people with disabilities don’t have friends or peers to help advocate for them, and this is due in part to the fact that our social, cultural, and employment institutions have not been fully open and welcoming to them.

We know the reporting of such abuse is far below the actual level of occurrence, because it goes unreported so often. This fact compounds the hurt and suffering reflected in the abuse data that we do have.

In one year from 2009 to 2010, cases of serious violent crimes such as rape and sexual assault, robbery, and aggravated assault against people with disabilities increased from 270,830 to 282,460, according to the United States Department of Justice.

In 2010, such instances of serious violent crime made up about half of all violence against people with disabilities– a rise of 36% from the previous year.

A story that ran on March 12, 2011 in the New York Times focused on appalling incidences in which employees of New York state’s group homes for people with disabilities abused the residents.

The story, “At State-Run Homes, Abuse and Impunity,” described how few allegations of criminal abuse were referred to law enforcement, even though state law requires these allegations be referred to authorities. The story also detailed widespread lack of accountability and oversight of employees, and how 25% of employees who had been accused of sexual, physical, and emotional assault – with each accusation supported by credible evidence – were transferred to work in other state-run homes.

The story reported the case of 47-year-old supervisor accused of sexually abusing a 54-year-old woman with severe disabilities.  Evidence against him included an eye witness and physical evidence found on the victim. Despite the evidence, he was placed on administrative leave and then transferred to another group home.  He eventually was arrested, tried, convicted of a misdemeanor, and spent less than a year in jail.

“Law enforcement officials had trouble explaining the delays and errors in the case and blamed the victim’s inability to communicate,” wrote the reporter in the Times article.

Blaming the victim: haven’t we learned to be better than this?

As a civilized society we cannot tolerate this level of abuse.  It is an indictment of our values and a direct result of the lack of inclusion in our community and in our world.

In recent years, we have tackled the age-old problem of bullying.  We educate our children about the hurt and suffering that result when a child is tormented.   We have embraced a zero-tolerance approach to bullying and we now suspend or expel students when they bully others.

We must take the same approach to abuse of people with disabilities. We must view it as unacceptable in our society and commit to eradicate it at every level.

Yes, we need tougher laws and better enforcement.  I know that as a former prosecutor.  Even more difficult than changing laws– no mean feat in itself– we need to examine our values.

We must look ourselves in the mirror, search our souls, and admit: yes, we must do better.

Jay Ruderman is president of the Ruderman Family Foundation

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Who Wins When We Team Up with Educators? The Student with a Disability … and Everyone Else

By Guest Blogger Sharon Shapiro-Lacks, Executive Director, Yad HaChazakah

Let me introduce myself: My name is Sharon Shapiro-Lacks and I am the Founder and Executive Director of Yad HaChazakah–The Jewish Disability Empowerment Center (Yad HaChazakah-JDEC).  We are a New York-based empowerment organization for and led by Jews with disabilities, and we provide guidance, resource information, advocacy, and community for people with obvious or hidden disabilities as we promote access to Jewish community life. 

Yad HaChazakah-JDEC takes on many different issues, but at this time of year we get a disproportionate number of calls about school. The Jewish holidays are over and students now can fully immerse themselves in the new school year.  They have met their teachers, rabbis or college professors and each has formed first impressions of the other.  But in order to get down to the business of learning, many students with disabilities need accommodations in order to access the classroom, take examinations, or follow along in class. These considerations add more layers of concern to the student-teacher and parent-teacher relationships. And each year students and parents wonder how amenable the teachers or school will be toward providing the needed accommodations.

Of course it’s a relief for us to work with a teacher who has had prior experience in working with students with disabilities, is motivated, and knows how to access the right resources or make the appropriate accommodations.

But we also hear from countless parents and students this time of year who have met up with a teacher or school administrator who seems to resist the notion that some students have conditions, learning differences, or limitations over which they have no control. Or, even if she understands that the student has a disability that affects the ways in which the student learns, completes assignments, takes tests, or participates in classroom or extra-curricular activities, she may not know how to accommodate the student.  He may make erroneous assumptions about the condition and the nature of the accommodation required, and thereby overwhelms himself into resistance or procrastination.  The teacher or professor may even reject an accommodation on principle, feeling that the accommodation would provide an “unfair” advantage to the student with the disability. This happened to a college student with a learning disability in math who contacted Yad HaChazakah-JDEC for assistance because her statistics teacher would not let her use a particular calculator as an accommodation.

We at Yad HaChazakah recommend that students—and parents, when applicable—do the following prep work:

  1. Understand the disability very well and how it may affect the student’s ability to follow instruction and course content, participate in classroom activities, do assignments, and take exams.
  2. Evaluate what has worked and has not worked in the past.
  3. List whatever accommodations the student may need.  This can range from note-taking to extra time on exams to paraprofessional and professional supports.  Have an appropriate professional support your accommodation request whenever possible.
  4. Make sure that the student has an IEP (Individualized Education Plan) on file in his or her school or school district and that it is up to date. If the student is in college, make sure the disability support services office has what it needs in case it has cause to intervene.
  5. Know your rights under the Individuals with Disabilities Act, the Americans with Disabilities Act, state and local regulations, and school policies.

Once the prep work is done, the student and family need to do the most important thing: meet with and get to know everyone who will be working with the student: the teacher/professor, rabbis, guidance counselor/advisor, the disability services office, and so on.  You not only want to tell the school personnel about the student and what he or she needs, you want to get to know the teachers, professors, rabbis, and administrators.  Listen for what they value in their work. Acknowledge the good they do and what they’re striving for.   Share what the student looks forward to learning in the class or classes and what would make it possible for him or her to gain maximum benefit.  Teachers, professors, and rabbis want to feel that their positive impact on their students will last a lifetime.

Toward that end, you will want to show how the appropriate accommodation will make it possible for the student to learn the valuable material and lessons that the teacher wants to convey. Show too how the accommodation will enable the teachers to attend to the educational needs of the other students of the class rather than having to call or pay unnecessary negative attention to the student with the disability.  Anticipate and address the possible concerns, worries, and assumptions teachers may have about the student or the disability. Reassure them that you’re on their team and on their side. Give them whatever information they need in order to provide the accommodations. The less research and work they need to do, the more supportive and cooperative school personnel will be.

Yes, we can and should fall back on “our rights” when we need to.  That said, we should assume the best in those who chose education for their career. You want teachers and school administrators to feel that you are all on the same team with shared visions. When the students, teachers, and parents all care about and address each other’s goals, values, needs, and concerns, all benefit.

– Sharon Shapiro-Lacks

 

 

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