All You Need to Know About Inclusion Can Be Learned From My Service Dog

Barbara BurtonBy: Barbara C. Burton

The concept of inclusion is not a hard one to grasp.  In fact, if you feel a little confused or unsure I suggest you spend time with my service dog, Pierre.

Pierre is a big, fluffy, cream and caramel colored Labrador retriever who is generally the icon for equanimity.  Pierre loves people: big ones, little ones, and people of all colors. He doesn’t care what clothes you wear and he doesn’t understand religion except that we say a bracha, a blessing, before he eats.  Pierre has seen me walk with a cane and use a wheelchair and it doesn’t faze him.  He’s used to me talking too loudly when my hearing aids aren’t in; if it bothers him he just goes off to one of his beds.  One of my best friends is blind and another is vision impaired and Pierre thinks it’s great that when we go out they navigate using a white cane or by allowing me to guide them while I hold onto Pierre. Pierre thinks it’s our version of a parade.  Following meetings when he sees the son of one of our committee members, a young man who has an intellectual disability, he always manages to ease on over to solicit a cuddle, never caring about the man’s IQ; after all, he can scratch Pierre’s neck just as well as someone who has a PhD.

That’s Pierre.  He believes people are generally good and exist to be his friend.  It isn’t a bad attitude as long as, like Pierre, you are willing to reciprocate that friendship.

Pierre completely accepts it when other people who have disabilities join me in meetings, at lunch or at parties.  He seems proud to lead the line of me and my friends while people in a restaurant wonder which of us can’t see. He thinks it is quite normal for me to race a 5K while tethered by a shoelace to a partner who is vision impaired.  As long as he can lick her hand when we get back into the car he’s happy.

To Pierre it is all good.  He is not critical and never looks askance.

Barbara and Pierre

Barbara and Pierre

Inclusion is not tolerance. How would you feel if I told you my dog “tolerated you?” It’s pretty insulting, isn’t it? Inclusion starts with an attitude of acceptance and the desire and willingness to invite others to join you to participate fully and equally regardless of what they need to do so.  It is not difficult.

We need to change the attitude we develop as children.  We learn we are not to look at people with disabilities, not to ask questions, not to talk to them.  This creates a culture of separation and fear.  There is “us” and there is “them.” “Them”, of course, would be people who have disabilities.  In an inclusive world it is all of us, together, benefiting from each other’s company. In an inclusive world we appreciate people for who they are, not whether they can walk or see or hear or join Mensa.

In Pierre’s version of an inclusive world it doesn’t matter if you have a disability or not.  As long as you let him know he’s wonderful, he’ll let you know you are wonderful.

Barbara C. Burton, M.Ed., owns Capitol Inclusion, an accessibility and inclusion consulting company. Follow her blog and engage Barbara on Twitter.

Leave a comment

Filed under Disabilities Trends

A Valuable Lesson

They say a picture is worth a thousand words. Today’s post is a fine example of that:

The above picture is from Lisbon (taken a few months ago). Wheelchair users and volunteers placed wheelchairs in the available non-disabled spots in a parking lot. The goal was to make able-bodied drivers understand what it’s like to have their spots occupied.

Additionally, notes were placed on each of the wheelchairs. The notes said “Just getting something here,” “I’ll be right back” and “It only takes me a moment.”

Hopefully the drivers learned a valuable lesson.

Leave a comment

Filed under Disabilities rights

A Year of Hopeful Trends in the Inclusion World

Howard BlasBy:  Howard Blas

As a teacher of Jewish Studies and b’nai mitzvah training children with a wide range of disabilities, and as a long time director of a disabilities program which is part of an 800+ camper Jewish overnight camp, I am immersed in the Jewish disabilities world and am part of dozens of year round conversations, conferences and panel discussions on various aspects of inclusion. I would like to share three exciting trends in the disabilities/inclusion world that I have noticed:

Increased Awareness and Discussion: Articles and videos showing people with disabilities in a positive light are everywhere—from USA Today to all over Facebook including soldiers with disabilities serving in the Israel Defense Forces, an Indiana University graduation speaker who happened to have disabilities, and a prom sensitive to people with disabilities. Synagogues are increasingly becoming aware of the needs of members with disabilities and of the fact that inclusion just makes good sense. Many Jewish institutions hosted disability awareness Shabbats this year as part of their process of becoming more inclusive. And I have to admit—I was delighted to follow the animated discussion in the New York Jewish Week’s New Normal blog about the soon-to-open Shefa School in Manhattan—and the question of just how inclusive or “separate” it is. It is wonderful when parents, professionals, and community leaders—many not directly impacted by disabilities—are joining the discussion about what a Jewish day school serving children with disabilities should look like.

Increased Collaboration, Sharing and Programming: We are coming out of our silos and increasingly working together. This may have started several years ago with the post-GA “Opening Abraham’s Tent: Jewish Disability Inclusion Initiative,” which was inspired in part by a visit to a number of disabilities camping programs by members of the Jewish Funders Network (JFN) and the Foundation for Jewish Camp (FJC). This year, “Hineinu: Jewish Community for People of All Abilities,” a cross denominational partnership for inclusion was announced. The National Ramah Tikvah Network included members of other camping movements in its two national disabilities training programs this year, and Ramah partnered with the 92nd Street Y (in New York City) to offer two holiday programs. In Boston, there is a great deal of collaboration between Yachad, Jewish Gateways and Camp Ramah in New England’s disability professionals and program participants.

In New York City, the UJA-Federation Task Force on People with Disabilities celebrates 18 years of bringing together professionals from various parts of the New York-area Jewish disabilities world, seven or eight times a year. FJC recently hired a director for their disabilities initiative and featured sessions at their recent Leaders Assembly on inclusion camping and vocational training programs (disclaimer: I led the latter session). We are talking to each other, attending the same conferences and sharing resources. As we prepare for our upcoming summer camp sessions, we are sharing staff training materials—across movements—and many of us are hoping to visit each other’s camps.

Increased Funding: The ADVANCE conference over the past few years, sponsored by the Ruderman Family Foundation (RFF) and organized by the Jewish Funders Network, brought together funders and professionals to share best practices. Funders are becoming increasingly aware of trends, programs and needs in the disabilities world—and they are talking to each other and learning how their effectiveness and impact increases when they work together around such issues as Jewish education and social programming, vocational training, housing, and more.

Paraolympian Pascale Bercovitch

Paraolympian Pascale Bercovitch talking at ADVANCE 2013 (credit: Noam Galai)

Several foundations have recently made important statements about the importance of funding in areas of inclusion of people with disabilities. The inaugural Morton E. Ruderman Award in Inclusion was recently awarded to Dr. Michael Stein, a trailblazer in the disabilities field and Slingshot, thanks to the support of RFF, recently published the Disabilities and Inclusion Supplement, which singled out eighteen programs making a difference in the disabilities field.

Additionally, the Harry and Jeanette Weinberg Foundation of Baltimore, Maryland has provided generous support for the vocational education program at Camp Ramah in New England and has allowed us to take our job training program to new heights. And I am personally indebted to the Covenant Foundation for selecting me, a professional in the Jewish disabilities world, as one of three recipients of last year’s Covenant Award for Excellence in Jewish Education.

Yet, with all of these positive developments, our work is not finished. I continue to receive calls each week from parents of children with disabilities who have yet to find a summer camp, or day school, or gap year program or Israel trip for their child. Let this be a summer of reflecting on our successes and moving forward to continue working together to create a more inclusive world.

Howard Blas is the director of the Tikvah Program at Camp Ramah in New England and a consultant on disabilities camping programs for the National Ramah Commission.  Howard also teaches children with a wide range of disabilities for bar and bat mitzvah.  Howard recently received the 2013 Covenant Award for Excellence in Jewish Education.

Leave a comment

Filed under Disabilities Trends

2014 Ruderman Prize In Inclusion Winners Announced

Ruderman Prize in inclusion logoThe Ruderman Family Foundation announced today the five winners of the third annual Ruderman Prize in Inclusion. The Prize honors organizations worldwide who operate innovative programs and provide services that foster the full inclusion of people with disabilities in their local Jewish community. The winners are: Jewish Vocational Service of Toronto (Toronto, ON), JewishCare Big Brother Big Sister Mentoring program (Australia), Bar-Ilan University’s Empowerment Program (Israel), Jewish Family Services of Houston (Houston, TX) and the St. Paul Jewish Community Center (St. Paul, MN). Each winner will receive $50,000 to continue their work and pursue new opportunities for inclusion in their local communities.

“Now in its third year, the Ruderman Prize in Inclusion has truly become an international recognition of excellence for the inclusion of people with disabilities in our worldwide Jewish community,” said Jay Ruderman, President of the Ruderman Family Foundation. “This year we have selected organizations from Australia, Canada, Israel and the United States. It is our hope that these awards will inspire Jewish organizations around the world to embrace the inclusion of people with all abilities in our community.”

“Receiving an International Award for our work is a stunning achievement for JewishCare,” said Claire Vernon, CEO of JewishCare. “By recognizing our passion and commitment for including people with disabilities in our programs, the Award provides huge encouragement to continue our groundbreaking work.”

Fully inclusive programs ensure that everyone can participate together, without stigma or imposed limitations. The goal of the Prize is to celebrate the winning organizations as inspiration and models which could be replicated elsewhere. The Ruderman Prize in Inclusion is a signature program of the Ruderman Family Foundation, which believes that inclusion and understanding of all people is essential to a fair and flourishing community.

From the outset, the Prize has become an international one, with hundreds of organizations from almost every continent applying. In the past, organizations from Israel, South Africa, Russia, the U.K., Mexico, the U.S. and Argentina have received the award. This year’s winners include programs dedicated to employment, higher education, mentoring, leadership training and full inclusion in communal activities.

“We are thrilled to have been chosen to receive the 2014 Ruderman Prize in Inclusion from the Ruderman Family Foundation. It is an honor to be recognized as a global leader in inclusion within the Jewish Community,” said Lorie Shekter-Wolfson, President & CEO of JVS Toronto. “JVS Toronto has a legacy of serving the Jewish Community and supporting clients, many with barriers who would not otherwise have the opportunities they do today. Our commitment to Tikkun Olam (healing the world) drives our organization’s mission and the work we do. Most importantly, this is a special recognition for the staff who work with the students every day and who make the world a better place for them.”

This year’s winners are:

JewishCare’s Big Brother Big Sister Mentoring Program (Australia)- JewishCare’s Big Brother Big Sister Program is a mentoring program for Jewish children through to young people who may be facing challenges and adversity in their lives. The program provides them the opportunity to thrive through the ongoing support and friendship of a big brother/sister mentor. JewishCare has developed strong links with local schools, synagogues and community groups to raise awareness about issues facing young people with a disability, and about the importance of their inclusion into mainstream services.

Bar-Ilan University’s Empowerment Program (Israel)- The Empowerment Program provides students with Intellectual Disabilities the opportunity to participate in college-level academic instruction. The Empowerment Program offers three stages of academic inclusion depending on the students’ level of function, including full integration into standard college courses and the ability to receive college credit for qualified individuals. The Program is the first of its kind in Israel and one of a handful of such programs that exist around the world.

Jewish Family Services Alexander Institute for Inclusion (Houston)- The JFS Alexander Institute for Inclusion is a Houston based initiative dedicated to engaging local communities in vital discussions on how to meaningfully include people with disabilities and reduce related stigmas. The Institute develops the leadership skills of key players whose awareness of inclusion brings the conversation (and ultimately action) to the forefront of their work, academic, or communal environments. In its efforts to increase awareness across the board, the Institute uses arts and education programs to change perception and trains leaders to challenge organizations to embrace inclusion in a proactive way.

The Jewish Community Center of the Greater St. Paul Area (St. Paul)- The goal of the St. Paul JCC’s Inclusion and Accessibility Services Program is to provide children, teens and adults with physical, cognitive and developmental disabilities the opportunity to be welcomed and fully participate in any and all programs offered by the JCC. The staff works with participants who need extra support and accommodations in numerous programs including:  theater, swimming lessons, personal training, fitness programs and more. For the last thirty years, the JCC has been fully committed to inclusive programming.

Jewish Vocational Service of Toronto (Toronto)- JVS Toronto helps people succeed by providing outstanding employment, social and educational services which meet the changing needs of the Jewish community. JVS offers specialized programming for populations with Learning Disabilities, Attention Deficit Hyperactivity Disorder, Developmental Disabilities and Mental and Physical Health challenges. helping them find and maintain employment.  This year marks the 50th anniversary of JVS’ delivery of psychological services in Toronto Jewish Day Schools, supporting the schools in understanding, effectively teaching and providing a Jewish education to all children, including those with special education needs.

Leave a comment

Filed under Disabilities Trends

Double Booked: The Real Costs of Disability to Working Families

This post originally appeared on the Religious Action Center of Reform Judaism blog.

Allison WohlBy: Allison Wohl

When our youngest son was born in 2009, I was climbing the ladder at a Big 4 consulting firm doing management consulting for the federal sector. My firm had generous benefits, “wellness” benefits (they paid for my gym membership), a 401k match. They let me expense my cell phone, offered short-term and long-term disability benefits and paid personal leave. This firm even has a generous parental leave policy, but I doubt that they would still employ me in my current circumstances.

When Julian was born with Down syndrome, the consulting career I knew was over. While our son is healthy, he still requires more than most typical work settings can tolerate. He has doctor’s appointments, school meetings, and speech therapy. Since he is only 4, these things are still fairly simple. But as he gets older, there will be more uncertainties and fewer child care options. For instance, It is unlikely that our after care provider will take on Julian when he goes to kindergarten; providers often cite “medical concerns” but in reality they are fearful of what it would mean to bring a child with a disability into their environment. They believe that their staff doesn’t have the resources. And at a certain point, child care can become more expensive than a family’s income can absorb.

I knew that I would be able to use the valuable consulting skills I’d acquired to advocate for my son and others like him. I now run a coalition of 22 national groups that work for the full inclusion of Americans with disabilities in every facet of life. Most of my colleagues are family members of people with disabilities or people with disabilities themselves. When I say that we have a doctor’s appointment, I am supported. And I have flexibility and control over my schedule, which is invaluable.

But that flexibility comes with real costs. My salary is less than one-third of what it would have been had I stayed on my career trajectory (and even less than it was before I went to business school). I have no IT help desk, no support staff, no benefits, and certainly no 401(k) match.  Thankfully, my husband works for the federal government, so we do have health insurance and some measure of consistency. But not all families have these options.

The Wohl family

The Wohl family

This path has been my choice and one I made enthusiastically. The work I’ve done over the past few years has been the most important of my career. I benefited from the corporate world but longed to do work that was more meaningful to me.  In my current position, I happen to also have a vast support network and a job that allows me work flexibility to meet the demands of my family’s life.

But what about the single parent who must stop working because her child requires round-the-clock care? There are millions of children with disabilities and/or childhood diseases, and caring for these children, which most parents are honored to do, is expensive in so many ways.

It has been estimated that providing supports for a person with a disability would cost an individual family between $2 and $3 million over the course of a lifetime. Few families in this country can afford such supports. One family I know lost their house while their adolescent son was on a waiting list for adult services; in the meantime, they had to foot the bill for his medical insurance and ended-up filing for bankruptcy. Sadly, this is not an unusual scenario.

Kofi Annan said that “the happiness of any society begins with the well-being of the families that live in it.”

Our society—through government policy and private workplace supports—must do a better job of meeting the needs of working families because without such supports, our society is fragile. If our only goals are maximum productivity and efficiency, we have lost our most valuable assets: community and compassion.

Allison Hassett Wohl is the executive director of the Collaboration to Promote Self-Determination, a coalition of 22 national groups advocating for the full inclusion of citizens with significant disabilities. She is the mom of three boys, the youngest of whom has Down syndrome. CPSD is a partner of the Ruderman Family Foundation. Follow CPSD on Twitter or Like them on Facebook.

Leave a comment

Filed under Disabilities rights

Independence Day?

Jo Ann SimonsBy: Jo Ann Simons

We recently celebrated Independence Day in the United States. We celebrate with parades, picnics, baseball, concerts and fireworks. I am not sure how many people actually took time to reflect on our independence but I thought a lot about the independence I take for granted. Not grand independence like freedom from tyranny or the right to vote but the independence that most people with disabilities still do not have.

Last night, I went out to dinner and ate too much. Then I took my 5 and 7 year old nieces out for ice cream- way past their bedtime. This morning, I decided to sleep late. I went to the gym and worked out for as long as I wanted. Spur of the moment, I met a friend for coffee. I decided to skip breakfast and have lunch before noon. I ate popcorn after my early lunch because I felt like it. I haven’t made my bed.

July 4thThe point I am trying to make is I have the independence to control much of my life. Sure, I have obligations and responsibilities but I don’t ask permission from anyone about when I go to sleep, wake up or what I eat or when. I am free to be with whoever I want. I can do things spontaneously, like keeping my young nieces out after 10 PM- or occasionally bending the rules, like when small children should go to sleep.

Most people with disabilities who depend on others for care, do not even have even enjoy this level of independence. Caregivers often make the decisions about these simple acts of daily living without input from the people they serve. While we work for the full inclusion of persons with disabilities in major areas of life, such as economic security, employment, housing, education and religious life, let’s not lose sight of the very important rights to independence:

The right to choose your friends.
The right to set your own schedule.
The right to eat when you want.
The right to skip your chores for another day.
The right to take risks.
The right to skip breakfast and eat popcorn.
The right to make bad decisions.

I have personal and professional experience. As a professional, I have seen the loss of dignity that comes when others make the decisions about when a person gets up, showers, exercises, eats and controls their access to friends and even family.

Personally, I have worked hard to make sure that my son Jon, who has Down syndrome, has as much control over his life as possible. I may not like all his decisions and choices- he stays up until after midnight most nights, he drinks too much diet soda, he has had way too much success in trying to taste every kind of beer in the world. But I work hard to smother all my maternal instincts and let him live his life and respect that he is 35.

It is hard sometimes and occasionally dangerous. Jon does not like to bother people and when he was sick recently, he minimized his symptoms. He has a complicated cardiac condition and in the area of his health, I draw the line. I choose his physicians but he makes his treatment decisions.

We don’t have to wait until next July 4th to start our own kind of fireworks, where people with disabilities get to control their own lives and the rest of us step back.

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

Leave a comment

Filed under Uncategorized

The Beautiful Ones

Ariella BarkerBy: Ariella Barker

My entire life, I have been told by many strangers, “Has anyone ever told you you’re beautiful!”  I find this statement to be both flattering and offensive. The question implies that there’s the possibility that no one, not even my own mother, has ever, not once, told me that I’m beautiful. The exclamation implies surprise that I could be so beautiful being that I am in a chair.  Replying to this statement is always an awkward and uncomfortable situation. Do I simply thank the person and move on? Do I say, “No. Not even my own mother,” in a sarcastic tone. Or, do I say, “Yes, many have. People with disabilities can be beautiful too.” I usually just choose the easy and polite “thank you” and move on, as I know whatever my response may be will fall on deaf ears, no disability pun intended.

People are shocked to see a beautiful woman in a chair, and, for that, I blame the media and lack of awareness.  For years, people with disabilities were hidden from society, placed in nursing homes or forced to stay in their home due to lack of accessibility. Once the ADA was passed in 1990 and Israel’s Equal Rights for Persons with Disabilities Law went into effect on January 1, 1999, America and Israel changed by allowing people with disabilities to enter society as equals to the able-bodied. As we came out of our houses, nursing homes and forced special education classrooms and into the light of our beautiful countries, the public was ignorant as to whom we really are.

For years, the media has misrepresented us. Until very recently, the media never included characters with disabilities on television or film. When they seldom did, they portrayed us as child-like, asexual, uneducated, deformed, dying, unattractive nerds. This misrepresentation negatively shaped society’s opinion of us, right when we were finally given equal rights and the ability to enter the world and live life.  Even today, when we see characters with disabilities on television, they are almost always played by able-bodied actors and falsely portray the disabled community.

Society needs to see the truth about disability. And, that is: We are beautiful. We are intelligent and educated. We are successful.  We are sarcastic and funny. We are fashionistas. We are sexual and desirable. We are not a burden. We are an asset.  We may use a wheelchair or have differently shaped bodies, but we are no different than the able-bodied.

Ariella Barker

Ariella Barker (credit Permobil Inc.)

I recently won the title of Ms. Wheelchair North Carolina and am now in the running for Ms. Wheelchair America, which are disability advocacy and awareness positions. With these titles, I hope to encourage television and film directors to include more characters and actors with disabilities; to make employers realize that we are just as capable, in some cases more so than the able-bodied population; to make politicians realize that we do get married, but are discouraged from doing so for fear of losing our benefits; and to demonstrate to society that we have been misrepresented by the media and underestimated by society.

We should all remember the most underestimated character in the Bible was King David. His “disability,” if you will, was that he was but a mere ruddy child and small in stature.  But this did not prevent him from being the only one capable of slaying the giant Goliath with but a measly sling shot. G-d anointed David, as a young boy, and crowned him King of the Jews, despite the fact that David’s older brothers seemed to be more suitable for the position. King David later became the sweet singer of Israel and the greatest human king of the Jewish people.

Never underestimate yourself or others, strive to be the most you can be, live a fulfilling life, and show the world and the media that, despite our disabilities, we, too, are beautiful.

Ariella Barker is an attorney, published author and professor of law from Charlotte, North Carolina.  She was crowned the 2014 Ms. Wheelchair North Carolina and will represent North Carolina at the Ms. Wheelchair America Pageant. Before winning this honorable title, Ms. Barker obtained her bachelors in business and administration and doctorate in law from Emory University in Atlanta, Georgia, receiving the dean’s list award and scholarship at both schools.  After graduating, she was a litigation attorney for New York City and its Mayor, Michael Bloomberg. She is now a professor of law at Charlotte School of Law, teaching litigation practices and disability law. You can follow Ariella on Facebook.

Leave a comment

Filed under perceptions of disability