Is The Disability Real If It’s Not Physical?

Benjamin A. WinnickBy: Benjamin A. Winnick

This is the second post in a series entitled “Issues I face as a working adult with a disability.” Read the first post: To Disclose or Not to Disclose a Disability?

How do you explain to others that a disability is real when it is not physical?

It is really hard. It is easy to understand that accommodations are needed when someone has a physical disability. Society has come to accept that a physically disabled adult has limitations but also real competencies. My challenges are harder for people to understand because they are invisible. I don’t need a wheelchair or ramp, I don’t need a seeing-eye dog, I don’t need hearing aids; but I do need other types of accommodations that are more subtle and I need understanding when my social interactions don’t always mesh with accepted behavior. It is a constant struggle for me to monitor my behavior and control my impulses in order to live a successful independent life. Since my disability is subtle it is much harder for the general public to appreciate my abilities and it is hard for me to find a social niche where I am comfortable and accepted.

I have a non-verbal learning disorder diagnosis – so, what does that mean? It is a gray area and similar to Asperger’s syndrome…but most people don’t “get it.” When I first meet people they may not appreciate that I struggle in social situations and sometimes they may think that I act inappropriately.

At work I might be perceived as not capable, but if I have the right type of work, environment and supervision I can be very successful. If people don’t give me a chance and if I don’t have the accommodations that help me, I may appear either stupid or lazy; in reality I am neither and it is upsetting when I am treated as such.

Disclose a disability

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

My current job is a good fit; but it took quite some time for me to learn how to complete the expected tasks to my supervisor’s satisfaction, and the same amount of time for him to learn how to assign and supervise my work to allow me to succeed. He didn’t initially understand that I am easily distracted and disorganized – not because I wasn’t trying, but because I just couldn’t process too many instructions and responsibilities at one time and I have trouble staying on task. I was lucky to have a job coach from Jewish Vocation Services who helped explain my needs and issues to my boss and to help explain my boss’ issues to me. I am also lucky that my co-workers were willing to learn and adapt the work environment which helps me complete my assignments.

We now have a great working relationship and everyone I work with understands that I need very structured and limited work assignments. Every day I get a specific list of tasks that I am expected to accomplish…and I can do it! I am happy we have figured out how to make it work. I need to give a huge amount of effort and concentration to make it work and that is exhausting but I am grateful for the opportunity.

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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The Inclusion Confession

As Yom Kippur approaches, we are reposting this post from last year.

Rebecca SchorrBy: Rabbi Rebecca Schorr

The central section of the Yom Kippur liturgy is the public confession known as the “viddui.” Originally patterned after the priestly narrative of Yom Kippur in Leviticus 16, the current iteration, with its poetic catalogue of sins, is the work of our rabbinic sages, who believed that the best way to have mastery over our behaviors is to recognize, name, and internalize our wrongdoings. Only then can we hope to overcome them. Following the traditional rubric, this new viddui is meant to help us recognize, name, and internalize the many ways we continue to exclude those in our community whose abilities differ from ours.

For the sin that we have sinned before You under duress and willingly; and for the sin we have  sinned before You through the hardness of heart.

For the sin that we have sinned before You by failing to include every member of our community.

For the sin that we have sinned before You by making it difficult for those who are different to find their places in our synagogues, schools, and organizations

and for the sin that we have sinned before You for thinking that we are doing all that we can.

For all these, O God of mercy,

forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You by building ramps without widening doorframes.

For the sin that we have sinned before You for dedicating seats for those with mobility difficulties without constructing accessible bathrooms.

For the sin that we have sinned before You for installing assisted hearing devices and allowing speakers who believe themselves to have loud voices to speak without using the sound system

and for the sin that we have sinned before You for believing we are being inclusive when we don’t truly include all.

For all these, O God of mercy,

forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You by using words to tear down rather than build up.

For the sin that we have sinned before You by not removing words from our vocabulary that are outdated, outmoded, and unacceptable.

For the sin that we have sinned before You for standing idly by while our family, friends, neighbors, and co-workers use words like “retard” or “retarded” to describe a person or situation

and for the sin that we have sinned before You by not speaking out when these words are  bandied about by rock stars, sports figures, and pop icons.

For all these, O God of mercy,

forgive us, pardon us, grant us atonement.

Courtesy of B'nai Amoona Synagogue, St. Louis

Courtesy of B’nai Amoona Synagogue, St. Louis

For the sin that we have sinned before You for judging that child’s mother rather than offering her a sympathetic glance.

For the sin that we have sinned before You by accommodating those with physical limitations while not making accommodations for those with developmental limitations

and for the sin that we have sinned before You by not providing support and respite for the parents and caregivers.

For all these, O God of mercy,

forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You under duress and willingly; and for the sin we have sinned before You through the hardness of heart.

For the sin that we have sinned before You turning away from those who seem different.

For the sin that we have sinned before You by putting those who seem different into categories such as “less able” and “undesirable.”

For the sin that we have sinned before You for failing to recognize a piece of You in every soul.

For ALL these, O God of mercy, forgive us, pardon us, grant us atonement.

Ordained by the Hebrew Union College-Jewish Institute of Religion, Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow, a contributing author of The New Normal: Blogging Disability, and the editor of the CCAR Newsletter. Writing at her blog, This Messy Life, Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Engage with her on Twitter!

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Video Contest For Jewish Campers!

The Ramah Camping Movement and the Ruderman Family Foundation are happy to announce “TIPTOE 2014 (The Inclusion Project: Through Our Eyes),” an inclusion-themed video contest for participants from all Jewish camps.

Campers and college-aged staff members who participated in a North American Jewish summer camp program in 2014 are eligible to submit 30- to 90-second videos that show their view of inclusion of children with disabilities in their Jewish camp. As an incentive, the first place prize includes $1,000 to the participant and a $1,750 donation to the winner’s camp’s inclusion program.

TIPTOE 2014

Contest submissions are due by November 14, 2014. Additional details about the TIPTOE contest are available on the contest website, www.tiptoe2014.org.

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Happy New Year

Happy New Year

Our entire staff wishes you and your family a Happy New Year- a year filled with happiness, health and peace. We look forward to working with you in the coming year to help create a fair and flourishing Jewish community worldwide.

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Access to Web-Based Content: A Civil Right and a Human Right

Credit: Kanji Takeno

Credit: Kanji Takeno

By Dr. Jonathan Lazar

People with disabilities need to have equal access to web-based content and the resulting opportunities in education, socializing, employment, and commerce. If you are using an alternative form of input or output, such as a screen reader, alternative keyboard, alternative pointing device, or captioning, you need to have equal access. It’s a fundamental civil right and a human right. That last line often makes people pause, especially people who work strictly in technical fields. A civil right? A human right?

Well, think about this. You are Deaf, and there was a radio show in DC, on the topic of accessible technology, streamed online, but the show was not live captioned for the Deaf and Hard of Hearing. So, you were cut out of participating in the show, or e-mailing into the panelists with questions. You were excluded from the conversation. You did not have equal access.

You are blind and utilize a screen reader, but the web sites of some major airlines are inaccessible. So, since the web site won’t work for you, you call the airline and ask for flight information, and when you are put on hold, the airline recorded message says, “lower fares available on our web site.” As it turns out, the airline does quote a higher fare on the phone than the price quoted online, and the airline also may charge you a “call center fee.” You have just paid a higher fare because you are blind, compared to people who can see, for the exact same airline ticket. You have just experienced pricing discrimination.

If you want to apply for a job, nearly all companies require that you apply for that job online. So you go to apply online, but the web site won’t work for you, either because you are blind and utilize a screen reader, or you have limited use of hands (due to a motor impairment such as repetitive strain injury), and can’t utilize a pointing device such as a mouse. You can’t apply for the job online. You call the employer to ask if you can apply on paper, or apply over the phone, and they demand to know why. Do you identify that you have a disability before even applying for the job? Or do you act sheepish and say, “it’s just hard to use” and then, it is likely that the employer will write you off as unqualified? You have just experienced employment discrimination.

If you want to apply for a job, nearly all companies require that you apply for that job online. So you go to apply online, but the web site won’t work for you, either because you are blind and utilize a screen reader, or you have limited use of hands (due to a motor impairment such as repetitive strain injury), and can’t utilize a pointing device such as a mouse. You can’t apply for the job online. You call the employer to ask if you can apply on paper, or apply over the phone, and they demand to know why. Do you identify that you have a disability before even applying for the job? Or do you act sheepish and say, “it’s just hard to use” and then, it is likely that the employer will write you off as unqualified? You have just experienced employment discrimination.

These are three examples of discrimination, which have previously been well-documented. International technical standards to make web sites accessible have been in existence since 1999. There is a large body of statutory law, regulations, case law, and best practices, for making web sites accessible for people with disabilities. Inaccessible web sites exclude people with disabilities from education, commerce, employment, and other opportunities to participate equally in society.

Yes, web accessibility is a civil right. In fact, inaccessible web sites that violate the Americans with Disabilities Act or the Rehabilitation Act of 1973, are investigated by the Civil Rights Division of the U.S. Department of Justice. Related to human rights law, the UN Convention on the Rights of Persons with Disabilities (CRPD) specifically mentions access to information technology and the Internet, in Articles 9 and 21. It’s not just about technology. It’s a civil right and a human right.

Dr. Jonathan Lazar is a Professor in the Department of Computer and Information Sciences at Towson University. He is the director of the undergraduate program in Information Systems. And some of the work mentioned in the blog posting, is based on the year he spent as the Shutzer Fellow at the Radcliffe Institute for Advanced Study at Harvard University.

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Moving Towards A Mandate

Sharon Shapiro-LacksBy: Sharon Shapiro-Lacks and Rabbi Michael Levy

“Check this Out!” appeared in the subject line on an email to me by Rabbi Barry Kornblau, Director of Member Services from the Rabbinical Council of America (RCA). My heart pounding with anticipation, I double clicked the subject line.  It was a press release entitled “Disabled Jews Strengthen Orthodox Jewish Communities.”  I thought to myself, “This is big… really big.”  The RCA, a major Orthodox Rabbinic association officially proclaims the importance of involving Jews with obvious or hidden disabilities in our communities and for the communities to provide us the access, accommodations, and attitudinal shifts we, Jews with disabilities, need in order to be involved.

Courtesy of Sandee Brawarski, NY Jewish Week

Courtesy of Sandee Brawarski, NY Jewish Week

Early in 2014, and resulting from prior conversations, Rabbi Kornblau asked us at Yad HaChazakah-The Jewish Disability Empowerment Center  to provide the first draft of the “whereas” and “therefore” provisions for a proclamation regarding the imperatives to expand disability access to and participation in Jewish communities and Torah life.  His request was itself a breakthrough; clear evidence that the RCA, a visionary organization, understood that the voice of the Jewish disability contingent, speaking for itself, is vital in shaping disability policy.  We were gratified that the RCA selected Yad HaChazakah, an organization led by and for Jews with obvious or hidden disabilities within Orthodox parameters, to draft the provisions.

The Torah generally doesn’t speak in terms of “rights” of a particular individual or group.  Instead it stresses one’s obligations toward G-d or one’s fellow community member. We, Jews with disabilities or ongoing conditions, don’t demand “rights” within Torah, per se.  Rather, we understand that the Torah expects us to be part of the community, learn Torah according to our capacities, and perform the many mitzvot (c0mmandments) that apply to us.  We cannot achieve these Torah-based expectations unless our communities eliminate the physical, communication, and attitudinal barriers that prevent us from doing so.

Developing the proclamation, in consultation with Yad HaChazakah’s rabbinic advisor and RCA member, Rabbi Benjamin Hecht, was an awesome responsibility!  It was necessary for the document to stress the Torah’s concerns for human dignity, our responsibilities towards our fellow Jews, and the mandate to be part of community life.  It was vital that it address the broad umbrella of people who are stigmatized due to conditions that affect their appearances, mobility, communication, cognition, mental health, or social or environmental sensitivities.  It was essential to use language that reflects the disability empowerment model; not well intentioned social service, special education, caregiver, or medical-rehabilitation terminology.

Honoring the passage of the Rabbinical Council of America’s Resolution on Increasing Access for and Participation of Jews with Disabilities in the Orthodox World. Rabbi Mark Dratch, RCA Executive Vice President (upper left), Rabbi Michael Levy (Upper right), Rabbi Barry Kornblau, RCA Director of Member Services and Sharon Shapiro-Lacks (lower left).

Honoring the passage of the Rabbinical Council of America’s Resolution on Increasing Access for and Participation of Jews with Disabilities in the Orthodox World. Rabbi Mark Dratch, RCA Executive Vice President (upper left), Rabbi Michael Levy (Upper right), Rabbi Barry Kornblau, RCA Director of Member Services and Sharon Shapiro-Lacks (lower left).

We congratulate the RCA for its pioneering breakthrough. We look forward to fulfilling the RCA proclamation as we educate Orthodox leaders and community members about the how to better involve people with disabilities in our communities as well as how to push us along with everyone else to learn Torah, do mitzvot and engage in communal services and events. Lastly, we encourage and invite community leaders and members to work with people with the full range of obvious and hidden disabilities and conditions in order to increase disability access and accommodations and to dispel myths and misconceptions.

Sharon Shapiro-Lacks is the Executive Director of Yad HaChazakah-The Jewish Disability Empowerment Center and Rabbi Michael Levy is the Board President. Yad HaChazakah provides guidance, resource information, advocacy, and community for people with obvious or hidden disabilities as we promote access to Jewish community life. Serving all people regardless of background, Yad HaChazakah is led by Jews with disabilities and is operated according to Orthodox Jewish standards. Follow Yad Hachazakah on Facebook.

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When Summer Ends

Jo Ann SimonsBy: Jo Ann Simons

It’s September and that time of year when many young people are making the transition from summer life to school life. For some campers on the North Shore of Massachusetts, they are bringing back to school with them a new vision- a vision where all children are valued, welcomed and included.

These day campers, at the North Shore Jewish Community Center, experienced a new kind of camp. A camp where every child was accepted, regardless of their ability. Here is what happened:

summer camp inclusionThat young counselor in training. The one with CP in a wheelchair? He became a leader and while the chair didn’t entirely disappear, it made for some pretty cool rides.

That beautiful blond 7 year old girl. The one who attends school in a separate classroom and in a segregated building? She made her first friend. I dare you to pick out which one is the child whose school district sends her miles from her home and family each day to attend school.

summer camp inclusion

But summer ends and with it, our vision for an inclusive society sputters. Because most of these campers will return to our Jewish day schools and to some public schools where children with disabilities do not exist.

The campers with disabilities will, too often, be in separate classes, buildings, buses and playgrounds. They may be absent from synagogue life.

As we approach the High Holy Days, this is an opportunity for all of us, not just those who are family members of people with disabilities, to look around. Does your Jewish community have the human and physical supports that invite all to be among us?

Do these children of summer have an inclusive life beyond the summer?

As we come together to usher in a New Year, let us pray that all who are among us find room in our tent.

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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