Havdala- The Best Time Of The Week

By: Michael Raileanu

Ask anyone who has attended Camp Ramah, or almost any other Jewish summer camp for that matter, what their favorite time of the week is and one answer is bound to bubble up to the top: Havdala. With this ceremony we bring an end to a peaceful, thoughtful, and fun Shabbat (Sabbath) and begin a new week; a week of fun, excitement, educational experiences, and stories to be told later on. The music of Havdala is sweet and simple. This moment can pass very quickly, yet it remains with the campers for years to come.

Such was my experience for the first 30+ years of my Jewish camping life. Indeed, I was quite satisfied with that status quo. However, upon arriving at Camp Ramah in California five years ago I found a new and very different experience. I was invited to join the camp’s Tikvah community—the Amitzim campers and the Ezra staff (vocational education participants)—of children, teens, and young adults with disabilities. What I found there has developed into my very favorite hour of the week, not to be missed.

Following Saturday night dinner, a treat in itself, as it is the only meal that ends with ice cream, the Amitzim-ers, the Ezra staff and their counselors gather in the ga-ga court. Everyone sits on the floor and the magic begins. With the call of “Can I get a drumroll, please?” the Yasher Koach (Congratulations!) Awards begin. Each and every youngster is recognized every week for one thing or another that they have done or accomplished in the previous week. Sometimes they are recognized for significant milestones, overcoming fear of heights on the ropes course, or something small but important, using good manners at the dinner table or participating in Israeli dance. Each of the campers is called up one by one, cheered on by the entire Tikvah community and hugged with great gusto and affection by whomever announced their name. The awardees are thrilled. They cheer for their comrades, share in their victories and bask with great glee in their own accomplishments. The simple joy in the ga-ga pit is palpable and infectious. The youngsters are thrilled, thrilled for themselves and for those around them.

California Tikvah Havdalah

When visitors come to camp I strongly suggest that they join us in our celebration and invariably they thank me for the invitation. They are immediately swept up in the noise, the cheering, the sense of accomplishment, and in the pride of achievement glowing on the faces of everyone, camper and staff, around the circle.

Every week I promise myself that I am going to take that joy, that pride in oneself, with me into the new week. Sometimes I succeed, sometimes I don’t. Often, I find myself focusing on the failures or the disappointments without more than a moment’s notice to the accomplishments, no matter what either of them may be. But I think that the Tikvah kids would say that it is okay, I am trying, I am learning. That is the ultimate lesson learned from these young people: the perspective. These young people most assuredly have disappointments in their weeks, maybe more than most, but they take the time, every week, at least every week at camp, to recognize their own and one another’s accomplishments and to move beyond their mistakes, in doing so they genuinely prepare themselves (and the people around them) to have a true shavua tov, a good week.

Michael Raileanu is a lifelong Jewish educator, having received his first classroom assignment at the age of 15. He is currently a third-year rabbinical student at the Academy for Jewish Religion. Learn more about Ramah California’s Tikvah programs and connect with the Ezra vocational education programs on Facebook.

 

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Are They Related?

Jo Ann SimonsBy: Jo Ann Simons

In the past month the “Ice Bucket Challenge” for ALS, has quite literally “soaked” the United States. Everyone from Bill Gates to Tom Brady has poured a bucket of ice water over his or her head, made a donation to fight ALS and challenged others do the same or make a donation to fight ALS within twenty-four hours. Inspired by Pete Frates of Massachusetts, people are learning about amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

Robin Williams shocking death by suicide has led to an outpouring of admiration for the comic’s talents and a discussion about mental illness and depression. Depression, also known as major depression, clinical depression or major depressive disorder is a medical illness that causes a constant feeling of sadness and lack of interest. Depression affects how the person feels, behaves and thinks. We also learned that he recently received an early diagnosis of Parkinson’s disease (PD). Fellow comic and actor, Michael J. Fox, lives vibrantly with PD, a neurodegenerative brain disorder that progresses slowly in most people. Most individuals with PD will be living with PD for twenty years or more from the time of diagnosis.

Last week, residents of tony Beacon Hill in Boston (home to Secretary of State John Kerry), amounted their continued opposition and legal fight to curb cuts in their historic neighborhood. They are worried about altering the historic landscape in this section of Boston.

Curb cut

Curb cut

As I thought of these seemingly unrelated events, they began to merge together for me. We need to demand a national commitment to persons with disabilities. On all levels. We must commit more tax dollars towards finding cures and treatments for ALS, mental illness, Parkinson’s and all the other conditions that rob our friends and families.

We must raise the awareness that disability is a condition worth fighting, as Peter Frates shows us with his courage to live each day fully. After his diagnosis, he became a husband and in a few months, in spite of not being able to talk and move, he will know the joys of fatherhood.

I don’t pretend to know why Robin Williams took his life but I hope it was not his recent diagnosis of Parkinson’s. If it was, I wish that Robin Williams could have seen clearly the life that Michael J. Fox lives and not the prospect of having a disability.

And how I wish that every street in Boston had curb cuts.

Because Pete Frates has the right to take his wheelchair anywhere he wants.

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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To Disclose or not to Disclose a Disability?

Benjamin A. WinnickBy: Benjamin A. Winnick

This is the first post in a series entitled “Issues I face as a working adult with a disability”

Do I tell others about my disability? If yes, when? And if no, why not? And how much information is the right amount to share?

I have chosen to disclose my disability but it wasn’t an easy choice. I want to be treated and respected the same as my peers and co-workers, but without sharing the understanding of my specific issues I face the real possibility that I could be fired for behaviors that I can’t control. In a previous job I was fired because the supervisor did not understand how I communicate and he expected me to understand his subtle facial expressions when he was displeased with my work. I had no idea that things were going badly until the day I was fired.

As an adult with a non-verbal learning disability, I am not always aware of social cues and often misread communication that others take for granted. This is especially true when faced with supervisors who don’t understand [or are not willing to accommodate] the type of direct and, often, repetitive instructions that help me be successful. I also need someone who is willing to re-focus my attention on the work that needs to be done as I am easily distracted and am not always aware of my wandering attention away from the tasks at hand.

Disclose a disability

Benjamin (right) and his fellow Transitions to Work graduates (credit: JVS staff)

I am grateful that I was able to participate in the Jewish Vocational Service Transitions Program at Newbridge on the Charles (NBOC). I am currently working [and getting paid] 3 days a week at NBOC for an organization which has made a commitment to hire adults with disabilities. Because of their commitment and the training I received from the Transitions Program, I have kept my job for over 2 years. We do have instances where my boss is not happy with something I have done [or not done] and I am not always aware that he is not happy with my work. I am lucky that there continues to be a JVS job coach working in the building who can step in to help my supervisor communicate his concerns about my work.

I didn’t start out wanting to tell everyone about my disability and I don’t want to be treated differently in my work environment. I am willing to work hard. All I want is to be the same as everyone else and treated with respect. But now that I have learned that disclosing my issues and having others at work understand my unique needs helps me to be successful, I know this is the right thing to do for me.

Ben Winnick is 32 years old and grew up in Needham, MA. He currently lives in Brighton, MA and works in the commercial kitchen at Newbridge on the Charles, an assisted living and skilled nursing facility in Dedham, MA. Ben loves animals and especially his family labradoodle, Kasey. The Ruderman Family Foundation is a proud partner in the Transitions to Work Program.

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Brought Within The Tribe

Matan KochBy: Matan Koch

I saw the beautiful grinning photo this morning of the young daughter of one of my camp counselors from the ‘90s, taken on the first day of camp.

It was typical of my social media feeds these days, replete with photos and messages of my slightly older friends sending off their children to the Jewish camp of their choice, and my peers reflecting on their children just a bit too young for camp, indulging in the dream of when they will do that first send off.

The themes of these posts, stated and unstated, are familiar; from “I can’t wait for my child to have the wonderful social and growth experience that I did” to “I can’t wait for my child to have the Jewish experience that I did” to the implied “I really hope that my child has the wonderful experience that I did and grows into the person and the Jew that I hope they will be.”

The wish that a child will have meaningful social experiences, will form strong connections to their peers and a strong Jewish identity, is one that unites all Jewish parents, especially those who went to camp. I suspect that this desire is no less strong among Jewish parents of children with disabilities, a suspicion supported by my interactions with a number of these parents over the last few months.

I have written extensively on the benefits of Camp for social and societal inclusion. By breaking down some of the physical, spatial, and social barriers that I experienced and by including me fully in camp programs, camp allowed me to have the breadth of experience and growth necessary for successful societal inclusion as an adult.

Today, I’d like to explore a different element of that same inclusive promise, the Jewish experience. It goes without saying that we are working for a world where every synagogue, every bimah (podium), and every Jewish program is fully inclusive. But we are not there yet. In fact, most people with disabilities face significant barriers to participation in the institutions of Jewish life.

As a child, my parents did not yet own a wheelchair van, which meant that my trips to the synagogue involved wrestling me and a manual wheelchair into a car. The synagogue did not yet have an elevator, which meant that I then had to be carried upstairs, and, to this day, the bimah is inaccessible. For my bar mitzvah, I read the Torah from a specially placed folding table.

official URJ Eisner Camp Bunk 3 Photo,  2nd session 1993

Official URJ Eisner Camp Bunk 3 Photo, 2nd session 1993

I like to think that my synagogue would’ve done that for everyone, and, given that my father was the Rabbi, and who the wonderful people in the community were, it probably would have. But I’m certain many people in rural communities can’t even beat the transportation barrier to get there in the first place, let alone take the initiative for the other pieces in a community where they are not yet known. Even as an adult, none of the orthodox synagogues in my portion of the Upper West Side were accessible to me.

At camp, getting to services, classes, or Jewish programs, was as simple as getting into a wheelchair and driving that chair to get to a space that had been modified for my access. At camp, I never missed the service, and I read Torah every summer after my bar mitzvah. Eventually, I would teach B’nai Mitzvah (kids about to become bar/bat mitzvah) at camp, a circle of sorts.

Most of the other benefits of camp were those experienced by other children, just more intensified for me as a person with a disability. All kids growing up in rural Connecticut towns benefit from things like camp to meet other Jews. Since my social avenues were even more limited than most, camp was especially important for helping to build my feeling of a Jewish peer group and community.

All kids where I come from have limited opportunities for Jewish learning. In my case, even if I had lived on the Upper West Side of New York, accessibility would have limited my opportunity for Jewish learning. The camp program made those opportunities available for all participants.

What’s more, my access needs were mostly physical barriers. Many children, in order to be included, may require programmatic, practical, or even liturgical modifications. In an ideal world, all synagogues would experiment to promote inclusion, consistent with their understanding of Halacha (Jewish law). In practice, in the world of the synagogue, the settled expectations of dues paying members make change slow and innovation painful.

At camp, modifying prayer and ritual practice to promote learning, growth, and spirituality is a virtual prerequisite of the camp program. Regardless of movement, Judaism itself allows a flexibility of prayer and practice that the synagogue may resist. Embracing that flexibility provides a laboratory for inclusion which the synagogue may not be well-equipped to do. Just as one example, if you are already praying outside, how hard is it to let someone who can’t sit still walk around as they, too, connect with God? The possibilities are endless.

This, then, is my recommendation to Jewish parents of children with disabilities praying that their children may find Jewish connection and inclusion. I have no certain answers, but the power of camp as a vehicle for such inclusion cannot be overstated, and I plead with you to check out the options that are available for you and your child.

Camp helped me to be the Jew that I am today, and while it is neither desirable, nor likely, to turn out carbon copies of that Jew, I hope that camp can help your child become the best possible Jew for them.

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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You Had Me At Hello

Shelley CohenBy: Shelley Cohen

“Hi.”

What a significant little word. I have been saying hi to this young woman for the past couple of months and last week she answered back. I was elated. And no, I’m not a guy who’s been waiting for a girl to notice me. I’m a neuro typical person trying to interact in a typical way with a young woman who has some type of intellectual disability that causes her to not look people in the eyes and to feel painfully shy.

Last week, after months of being together in the same spin class at my local JCC, she finally answered me back and today I introduced myself formally and then in reply, she triumphantly told me her name is Sue followed by a huge smile. It was clearly a breakthrough moment for us both and I began to think about what a wonderful job my local JCC does in helping to create an inclusive environment on the Upper West Side of Manhattan.

You see my JCC has a program called Adaptations that provides young people with various disabilities with social and vocational support and opportunities. On any given day these young people can be found taking part in any and all activities in our JCC. I personally am an avid gym rat who takes various exercise classes at the JCC. In my dance aerobics class there is “Lilly” who has a mild case of CP and some type of intellectual disability. In order to keep up with the class moves, “Lilly” likes to sing along with the music that plays. At times she can be a bit off key but nobody seems to mind; instead the instructor and/or classmates will say “hey Lilly why aren’t you singing? Don’t you know this tune?” In another spin class I take there is a woman who is blind and even if one enters the darkened room (that is the MO of a spin class) nobody stares or thinks twice about the seeing eye dog splayed out at her owner’s feet. On Fridays I am greeted in the lobby by David who has Aspergers Syndrome as he busily sells Challahs, and candles for Shabbat.

CommunityMy JCC has lectures, movies and programming for all ages and interspersed throughout these activities one can always find persons with varying degrees of some type of disability. I don’t know if my JCC is different than other JCCs. I hope it isn’t and if it is, I hope the Jewish Community Centers Association (JCCA), the umbrella organizations for all JCCs, will look to it as a best practice model to emulate.

This is how a Jewish community should function. It should be this way in all of our institutions – our synagogues, day schools and camps. Everyone having a place, feeling comfortable and being able to participate at whatever level they can. So that Sue who has difficult social interactions feels comfortable in our day schools and has teachers trained with the knowledge of how to teach to students with disabilities, and Lilly can pray loudly and off key at her synagogue having been taught the Hebrew prayers and singing them in her own way without stares and outward manifestations of unease. Just people interacting and sharing a common sense of belonging.

Inclusion of people with disabilities into the Jewish community needs to be a priority and nurtured within all of our institutions and yes, sometimes it begins with just a simple hello.

Shelley Richman Cohen is the Founder and Director of The Jewish Inclusion Project, which educates rabbinical students, Rabbis and communal leaders on the obligation, need and methodology for leading the creation of more inclusive synagogues, schools, summer camps and community organizations that fully embrace the communal, social and religious needs of people with disabilities and their families. The Jewish Inclusion Project is funded in part by a grant from the Ruderman Family Foundation.

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Accessibility: Technology’s Answer to the Golden Rule

Dana Marlowe

(credit: Rebecca Drobis Photography)

By: Dana Marlowe

What if there was a commentary in the ancient religious texts about technology? How would leaders in the early millennia have interpreted smart phones and tablets? We can take one page out of their user manuals and apply it to our tech products of today. One of the most memorable Talmud quotes was delivered to an individual who asked the scholar Hillel if he could learn the whole Torah standing on one foot. Hillel’s profound response was: “What is hateful to you, do not do to your neighbor…the rest is the explanation of this.” In modern society today, this tenet is referred to as “The Golden Rule.”

So, how does this tie into technology? It would be impossible to have one person master all of technology while standing on one foot. Products are innovating swiftly; the newest version is not always usable out of the box. Just as easily as technology opens up for some, it shuts the door for others. Especially those with disabilities. Fortunately, the solution is accessibility.

Accessibility and technology is the fusion of IT and disability; the focus on the user over the device. It is the human side of technology by personalizing the impersonal. Instead of shutting out individuals, or having organizations fearful of lawsuits, accessibility is a groundbreaking chance for new technological development with the inclusion of assistive devices. It can put people with disabilities at the helm of innovation and dictate progress focused on human experience.

As technology dictates our interpersonal reactions, accessibility can ensure that no one gets left out. Simple suggestions include screen magnification for users with visual disabilities, speech recognition for those with mobility disabilities, captions for those who are Deaf and Hard of Hearing, alternative input and keyboards are standard in some devices, but not all. These options can be toggled on or off for a user’s preference, but don’t discriminate based on disability.

Technology and accessibility

Dana speaking with a man who is hard of hearing and visually impaired about innovative assistive technology while she was keynoting a conference in Trinidad.

On other levels, simple recommendations are to include alternative text for all images and non-textual items, have heading structures in documents, tables with headers, caption audiovisual media, and utilize proper color contrast. These are just a few suggestions. Accessibility enables anyone to use anything.

Yet, too often today, people are shut out of utilizing a piece of technology, whether a notebook, smartphone, desktop, touchscreen kiosk and beyond, due to inaccessibility. The best course of action is to have an open and consistent dialogue with developers and people with disabilities to create technology that is inclusive and powerful. It can propel a future where all can access any device or technology interface. By building in a strong foundation now, it ensures that all future developments move in the direction that benefits and values people with disabilities and fosters an inclusive society.

The Golden Rule teaches us to humbly consider the experiences of our neighbor. This value is applicable to technology innovation. Instead of trying to please lofty users with dazzling features, perhaps technology should think bigger picture, but closer to home. People with disabilities are the fastest growing demographic on the planet and one that anyone can join at any time in their life.

Accessibility might take some years to implement universally, but as Hillel also says, if we are only for ourselves, than what good are we?

Dana Marlowe is the Principal Partner of Accessibility Partners, L.L.C., an IT consulting firm. Dana works to remove barriers in technology, and to make opportunities available for people with disabilities. Dana partners with Federal Agencies, international organizations, and Fortune 500 businesses to help them create accessibility roadmaps and audit products to make them more usable for everyone. Like them on Facebook and engage Dana on Twitter to learn more.

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A Dream We Are ABLE To Enact At Last

William DaroffBy: William Daroff

Recently, disability activists across the United States, including myself, were greatly encouraged as the Achieving a Better Life Experience (ABLE) Act moved one step closer to passage in Congress, thus bringing many in the disability community one step closer to being able to plan for their futures.

Standing together without fear of partisanship or petty political squabbles, the bill was passed by the House Ways and Means Committee with unanimous support. Advocates have spent more than eight years urging Congress to pass this legislation, which would further the ability of the most vulnerable among us to lead healthy, independent and financially secure lives. Now is the time to pass this important legislation and make this dream a reality.

The ABLE Act, which has bipartisan support in both chambers of Congress, would provide a tax-advantaged savings account of up to $100,000 for disability-related and long-term care expenses. These funds would supplement, but not supplant, the benefits received from sources such as private insurance, Medicaid and the Supplemental Security Income program, providing new and valuable lines of support to people with disabilities and their families.

ABLE accounts will be able to fund education, housing, transportation, employment support, health prevention and wellness, assistive technology and personal support. With these new savings accounts, families of children with disabilities will have access to new funds to help pay rent, hire a tutor and obtain job-related training in the future.

William and Rep. Cathy McMorris Rodgers (R-WA) from Jewish Disability Advocacy Day 2013. Rep. McMorris Rodgers is one of the leaders in the House pushing the ABLE Act.

William and Rep. Cathy McMorris Rodgers (R-WA) from Jewish Disability Advocacy Day 2013. Rep. McMorris Rodgers is one of the leaders in the House pushing the ABLE Act.

ABLE accounts would provide tremendous support to people with disabilities and their families – support that simply does not exist at this time. Right now, the laws that are in place discourage people with disabilities from saving for the future, as those with more than $2000 in assets are ineligible for many essential government benefits. The ABLE Act allows people with disabilities to save for their future without putting those much needed benefits in danger.

There’s a reason that the Jewish Federations, alongside our partners in the Jewish Disability Network (including our co-chairs at the Religion Action Center of Reform Judaism), have worked so hard to make the ABLE Act and other similar legislation a reality over the past four years. Inclusion, one of the central tenets of Judaism, is necessary in enabling individuals to achieve self-determination. By reaching for greater inclusion in our communities, we will allow people with disabilities to participate fully in the way that they deserve.

Countless organizations, both in and out of the Jewish community, are doing incredible work improving the lives of people with disabilities- through employment, housing, educational and numerous local initiatives. One such initiative is our partnership with the Ruderman Family Foundation in developing the Ruderman Family Foundation Opportunity Initiative, placing interns with disabilities in Jewish Federation offices throughout the country. Federations are beginning to walk the walk, hiring interns and staff with disabilities, and we encourage other employers to afford people with disabilities the same opportunities as anyone else.

The ABLE Act is a necessary measure to ensure equality and independence for all Americans. It signifies that our country values the rights of all individuals and recognizes the potential within each and every one of us. The time is right, and the time is now, to make this dream a reality at last.

William Daroff is the senior vice president for public policy and director of the Washington office of The Jewish Federations of North America. Follow William on Twitter to learn more.

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