Category Archives: perceptions of disability

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.

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Accessible Hiking In Israel

Raz RutmanBy: Raz Rutman

Hi, my name is Raz and I love to hike. I am 20 years old from a small and quiet village in the north of Israel called Yokneam Moshava. When I was eight-and-a-half years old I was injured in a serious car accident that left me paralyzed and requiring the use of a wheelchair and ventilation machine. Today I know how to live with the disability and limitation and to enjoy life. One of the things that I really enjoy is a hike in the great outdoors.

When I turned eighteen, it was clear to me that just like my friends who enlisted in the Israel Defense Forces (IDF), I too wanted to contribute to the State so I decided to do national service. Due to my love for nature, I decided to do my service with LOTEM- Making Nature Accessible. LOTEM is a non-profit organization that guides people with disabilities in nature and develops accessible hiking trails. The outings are led by LOTEM’s soldier guides and national service volunteers and take place in every region of Israel.

Israeli culture places much emphasis on the connection between humans and nature. Despite this, there is not enough awareness in Israel about the need to bring people with disabilities out to nature and because of this, there are not enough accessible trails in the country.

In the framework of my service, I write a blog about accessible trails in Israel. Throughout the year I visit different accessible trails and review it from my point of view, with an emphasis on the issue of accessibility and suitability to individuals with disabilities.

I would like to share with you two recommendations for accessible trails:

Raz at Rutman Shmurat Hahula

Raz at Shmurat Hahula

My home trail- Nahal HaShofet– An accessible trail in Nahal Hashofet was developed by LOTEM while preserving the unique landscape of the park. JNF-USA helped fund the completion of an accessible loop, enabling individuals to hike independently on a circular trail. The path itself is simple and quite welcoming, wide and accessible for wheelchairs. There are unique markings on the pavement, such as raised stones for people with visual impairments and indications when there is a turn. There is an accessible parking lot for vehicles. Along the path there are trees, reeds and flowers which serve as a home for many animals including foxes, porcupines and more. Spending time in all this green provides a sense of calm and tranquility, what every human being needs once in a while.

My little secret- The Solelim Forest– This trail is accessible, beautiful but not well known. There is a sign marking the trail and the wide accessible parking lot. After a short distance from the start of the trail, there are remains of an ancient winepress. In my opinion this attraction is less suitable for individuals in wheelchairs because from where I sit, it is impossible to see the entire winepress. The trail boasts a large cave. At the entrance there is a wide wooden deck from which you can see the entrance to the cave comfortably. Around the deck there is a wooden railing that prevents one from falling. The height of the railing is suitable to individuals in wheelchairs and does not obstruct the view of the green fields in the area. The path continues and winds until it arrives at a view point that overlooks the eastern side of the Tzippori Stream. The view from there is beautiful and calming.

In summary, going out to nature is always good for me and I am sure that this is the case for most people, especially those with disabilities. If more accessible trails were available in Israel, then more people will merit more moments of happiness and content.

LOTEM– Making Nature Accessible is the leading organization in Israel offering accessible hikes and nature activities to children and adults with special needs. A JNF partner organization, LOTEM serves over 30,000 individuals a year. Follow LOTEM on Facebook to learn more.  Visit Raz’s blog and learn about more trails and accessible nature in Israel.

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Facebook, Football And You

Jo Ann SimonsBy: Jo Ann Simons

Recently, I posted a picture of my son, Jon, who has Down syndrome standing with Tom Brady. We New Englander’s think of him as the NFL’s best quarterback. While there may be debate on that subject don’t have it with Jon. You will not win.

While where the picture was taken is not critical to this post, it was taken shortly after Jon hit the ceremonial first tee shot at the Best Buddies Hyannis Port Challenge golf tournament in early June.

A few days after the picture appeared on Facebook, I delighted in seeing that there were 119 likes and 15 comments. I read each comment several times and I looked at each person who indicated “like” and remembered how they were in my life.

This is what I found out:

I went to public school with 14 of you in Swampscott, Massachusetts.

I went to college with 11 people.

My friends and acquaintances made up 20 individuals.

My family came in at 8.

Neighbors were 7.

Friends and parents of both my kids were counted at 18.

Over 22 are from the disability community.

At least 15 were work colleagues

Four are people who are paid to be in Jon’s life.

Jon Simons and Tom Brady

Jon Simons and Tom Brady

My Facebook friends are from down the street and from many states and from two foreign countries (Israel and Denmark). Some of you I have known most of my life and others of you I have met along the journey of life. But, each and every person who took a fraction of a second to “like” the picture and those who wrote a positive comment are part of my support system.

Thank you. When you “like” a picture or an update on Jon, whether you intended it or not, you are sending me a strong and positive message. Your “like” or “comment” means you get it. It’s a “high five” or a warm hug. You are telling me that you celebrate the good days with me and want to comfort me in the days when the struggle returns. While it has been 35 years of joy on this remarkable journey in the world of disability, there are days when I need your love and support and Facebook brings it to me.

Parenting a child with a disability is a marathon, not a sprint and I want to thank you all for running with me.

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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Opening The Doors

Ellen MaiseloffBy: Ellen Maiseloff

As the Associate Director of Special Education for the Opening the Doors (OTD) Program, part of Federation’s Alliance for Jewish Education in Metropolitan Detroit, I have the privilege of facilitating supplemental programs that enable children with diverse learning, social and behavioral differences and abilities to be included and participate in a meaningful Jewish education.

Our OTD program was designed to ensure that every child in our community with diverse learning differences receives a quality Jewish education at no additional cost to their families. Through OTD, we place Master Special Educators and trained Para Educators in our Jewish day schools and congregational schools and train teen Madrichim (counselors). Each school receives a Federation stipend, OTD supervision, consulting, evaluation and professional development opportunities for their educators and families.

In developing OTD, we learned important lessons about how to make an inclusion program successful.

Be Enthusiastic and Don’t Give Up

Initially, we had a vision for OTD, but there was no precedent in other U.S. communities. Looking back, our enthusiasm, motivation and our inspiring children drove us to succeed. While speaking with the many stakeholders we would be collaborating with, we promoted OTD with excitement and passion. Commitment from key partner schools soon followed. Today, we serve 1,000 children in our community.

That enthusiasm and partnership approach paved the way for easier conversations, when discussing programmatic details. In addition, whenever we had challenges we became solution-oriented and collaboratively made innovative modifications within the program and/or school model, always moving forward.

Opening the Doors

Edna Sable, an OTD special educator, and Ian (credit: Vivian Henoch)

Relationship Building is Critical

We continue to emphasize the value of fostering trusting, collaborative and respectful relationships with the day school/congregational administrators and teachers we work with. It is important to consider all points of view, needs and concerns whether structural, academic or behavioral. Suggestions are more readily implemented when quality working relationships have been developed and you are supportive and accessible. Our teachers truly care about our children and helping them find success, and many benefit from additional knowledge of learning styles and research-based strategies to increase their effectiveness.

Help Others Be Successful

Creating positive, individualized, interactive learning environments for all children with diverse abilities and talents may be challenging. Share your knowledge and expertise by modeling, offering strategies and extending resources that empower the teachers you’re working with, so they become more competent and effective. Additionally, provide professional training on topics such as: inclusion practices, differentiated instruction, accommodations, disability awareness, and assessments, which provide staff opportunities, strengthen their knowledge and expertise, and relevant techniques to maximize students’ success.

Max, who has Asperger Syndrome, says it best: “I want other children and young adults to have as amazing of an experience as I did.” Developing and sustaining successful inclusion programs will take passion, innovation, collaboration, relationships, engagement, funding and hard work. My hope is that some of my suggestions may help you “open the doors” to a future rich with opportunity, inclusion, Jewish identity, heritage and meaningful learning for all diverse learners.

Ellen Maiseloff, M.A., is the Associate Director of Special Education, Alliance for Jewish Education of the Jewish Federation of Metropolitan Detroit and a graduate of the First Leadership Institute on Disabilities and InclusionSlingshot recently named Opening the Doors as one of 18 leading innovative Jewish programs committed to fostering inclusion of people with disabilities, in their 2013-2014 Disabilities and Inclusion Supplement. Follow OTD on Facebook to learn more.

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My Voice

Matan KochBy: Matan Koch

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

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

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

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

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

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

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

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

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Professor Reuven Feuerstein

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

Professor Reuven Feuerstein

Courtesy: Feuerstein Institute

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

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

May his memory be for a blessing.

 

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Memories For Everyone

This originally appeared in eJewish Philanthropy.

JayRudermanBy: Jay Ruderman

The late nights in the bunks with friends, swimming in the lake, color war breakout that always came as a surprise and the ‘bug juice’ at lunch. Those memories for a lifetime were and are priceless for the tens of thousands of Jewish youngsters who had the privilege of attending a Jewish summer camp.

But they should be memories for everyone in our community- not just for the “privileged.”

Our foundation was proud to co-sponsor the recent Foundation for Jewish Camp (FJC) Leader’s Assembly. We believe that Jewish camping should be accessible to everyone and recognize the importance of Jewish camping as essential to ensuring continuity in our community.

My personal experience demonstrates this. I spent five summers at Camp Ramah in New England. Although I grew up in an observant Kosher home, I believe my time at Ramah was a critical part of instilling a connection in me to the Jewish people and to Zionism. I believe my current commitment to philanthropy in the Jewish world is partly thanks to Camp Ramah and Jewish camping.

My time at Ramah helps explain why I believe the inclusion of Jews with disabilities—at camp and everywhere else—is essential to boosting Jewish continuity.

Most Jewish philanthropists, and many Jewish communal organizations, focus heavily on keeping our children Jewish. Camping, day schools, trips to Israel, and numerous projects seek to engage our youth in wonderful experiences designed to persuade them to remain inside the Jewish community.

However, in many of these efforts to ensure continuity we chase after highly educated, upwardly mobile young people while excluding many other populations who are actively seeking a place in our community. By doing so, we arbitrarily decide who we want to stay within the walls of our community and who we want to keep out.

Chief among these excluded populations are people with disabilities and their families, who make up roughly 20% of our population. Disability is not a niche issue; it impacts everyone- family, friends, colleagues and co-workers. By being exclusive rather than inclusive, we disenfranchise many of our fellow community members, at a time when we should be inviting them in.

FJC logoIn the end, if we continue to create a society that excludes people with disabilities, we will become completely unattractive to the very young people we are trying to attract! I believe that inclusive Jewish camping can play a major role in creating a more fair and flourishing Jewish community.

Children and youth in the U.S. have already internalized inclusion. They live it every day at school, on the playground, at youth groups. To them, inclusion is the norm. This is mainly because the national culture in the U.S. has surpassed the American Jewish community in its embrace of inclusion.

If young Jews grew up with certain expectations, how will they view their own schools, synagogues and summer camps if they are exclusionary? In the end, they will turn away from a Jewish community that has no place for minorities and instead looks like an old-school country club.

Pursuing, promoting and fostering inclusion is not only the right thing to do according to Jewish values– it is also the strategically smart thing to do, so we build a community to which our youth want to belong.

There is no magic bullet that will bring us to inclusion. Inclusion needs to be a value explored and internally embraced by every single one of us! There is no replacement for the central tenet we hold dear: Kol Yisrael arevim zeh lazeh– we are responsible for each and every Jew. A sense of solidarity, the notion of oneness is what will ensure the future survival of our people.

Outsiders may provide seed funding and access to expertise, but the fundamental commitment to inclusion must come from within the community itself. Only then will it become a fully sustainable part of a newly inclusive American Jewish culture.

It is for this reason that I was excited to participate in the Leader’s Assembly. The FJC made inclusion a focus of the conference and they are working to make all Jewish camping inclusive. I commend their leadership on this issue and believe their involvement and commitment will help build a Jewish community which is exciting, vibrant, welcoming and attractive for everyone.

One of the keynote speeches was delivered by Alexis Kashar, a disability advocate, civil rights and special education lawyer who is deaf. In her address, she discussed her summer camp experience and how it helped shape her views on inclusion. She challenged the conference participants to help make the joy of Judaism available to everyone.

Summer camp is fun, relaxing and allows everyone to participate in joint activities. Now imagine that kids with disabilities had access to Jewish camps, participated and what the end result would be: other kids would see them for who they really are, kids like everyone else.

Our march to inclusion has to start somewhere. Over a cup of pink bug juice is as good a place as any.

Read our last post: Strangers Among Us
Come visit us on Facebook to learn more about inclusion of people with disabilities

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