Category Archives: Disabilities rights

Defining Inclusion

2015 is the 25th anniversary of the signing of the ADA. We will be posting 25 posts over the next 12 months which will focus on the ADA- how it has changed society and what still needs to be done. Our goal is to cover for you, dear reader, as many different angles and issues as possible. Below is the third post in our #ADA25For25 series. The most recent post can be viewed here

Lisa FriedmanBy: Lisa Friedman

When I conduct professional workshops and trainings for Jewish leaders seeking to become more inclusive, I typically begin by asking them to share their definition of inclusion. (There are fun & catchy ways to do this, and most recently I have been using the prompt define inclusion in three words or less.) The reason for this set-induction is two-fold: first, it focuses participants on the task at hand and second, it helps participants to recognize, up front, that there is no universal definition of inclusion.

You may be wondering why that matters. No universal definition or standard of inclusion means that individual organizations and school districts must figure out for themselves what inclusion means and how it might best be accomplished in their setting. The Americans with Disabilities Act (ADA) guarantees that people with disabilities have the same opportunities as everyone else to enjoy employment opportunities, to purchase goods and services and to participate in State and local government programs and services. The Individuals with Disabilities Education Act (IDEA) governs how states and public agencies provide early intervention, special education and related services to infants, toddlers, children and youth with disabilities. Both of these laws prohibit discrimination. Both laws describe appropriate accommodations. But neither actually defines or explains what it means to be inclusive. As a result, there is tremendous variation from state to state and district to district.

It gets even more complicated for us in the Jewish world. As private, religious institutions we are not bound by the ADA or IDEA. There are no legal mandates requiring us to make accommodations for and/or offer inclusive opportunities for people with disabilities and their families. Advocates of an inclusive Jewish world know that the inclusion of Jews of all abilities is the right, moral and just thing to do. We know that we must look past legal mandates and turn, instead, to our own Jewish teachings and sensibilities to guide us to do what is right. But without laws or specific mandates, Jewish leaders find themselves without the proper support and guidance to make inclusion a reality.

How do we start? What do we do? Must we focus on our structures or on our people? How can we seek to bring more people into our community if we can’t accommodate their needs once they are there? Why is it that some people feel inclusion means everyone all together all the time while others prefer a balance of separate and inclusive opportunities? How do we choose what is right and what is really inclusive?

Inclusion in 3 words or less

I find myself helping to guide people to an understanding of inclusion by focusing first on what inclusion is NOT. Jewish leaders can begin to make strides toward a more inclusive culture when they avoid common pitfalls and assumptions:

  • Inclusion is NOT saying that you welcome everyone – plastering it on websites and brochures – and then having meetings, programs or events where the same core group attends and sticks together while others are left outside that “inner circle.”
  • Inclusion is NOT an event or a program where you invite people with disabilities to share their experiences. (That can be a really meaningful experience for everyone, by the way – it’s just not inclusion in and of itself.)
  • Inclusion is NOT a favor you do for someone.
  • Inclusion is NOT a social action project or something your social action committee is “in charge of handling.” Inclusion, when it is part of the culture of a community, offers everyone an opportunity to participate in a wide variety of meaningful experiences.
  • Inclusion is NOT a place or a person – it’s not a classroom, a quiet room, the inclusion teacher, the inclusion specialist. Inclusion is who we are and what we do. It can’t be an after-thought or a last minute accommodation when someone with a disability “shows up.”
  • Inclusion is NOT accidentally sending the message to be thankful that you are “whole.” This is the “I’m so lucky I don’t have (fill-in-the-blank)” message. This conveys a message of pity rather than a celebration of the gifts each person has to offer.

In the end, the message is clear: inclusion matters, legal mandates or not. It is incumbent upon each organization to develop an understanding of inclusion and work toward creating a vibrant community that includes and supports everyone.

 

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Twenty Years?!

Today’s blog post comes from Australia. This article in Mashable highlights a local train station which is clearly not accessible for people with disabilities. Two things stand out:

1) The state Transport Minister called the below video “distressing.” Just distressing?

2) The article states that area residents have been involved in a TWENTY YEAR BATTLE to make the station accessible. Unbelievable.

Watch the video below and see for yourselves:

Hopefully the video will cause this “distressing” situation to immediately be taken care of by local authorities.

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Jewish Self-Advocacy Education

(credit: Rachel Moses)

(credit: Rachel Moses)

By: Rachel Delman Turniansky

Rabbi Hillel asked: If I am not for myself, who is for me? If I am only for myself, what am I? If not now, when?” – Pirkei Avot (Ethics of Our Fathers 1:13)

Wrightslaw gives the following definition of self-advocacy:

“… learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship and learning about self-determination.”

There are times when well-intentioned professionals and family members have a dominating voice when it comes to decisions that impact the lives of people with disabilities (PWD), as opposed to allowing them to self-advocate. I feel that thee Jewish community needs to support the development of self-advocacy and leadership skills in a Jewish context. The need for self-advocacy education that includes Jewish middot (values) is significant. Jewish life centers around family and community connections. People with disabilities are often left on the sidelines when it comes to participating in Jewish life.

A Jewish self-advocacy training program is being piloted through Baltimore’s TAG program. TAG is a division of Gesher LaTorah, a community-based Jewish education program for students with disabilities facilitated by the Macks Center for Jewish Education. TAG stands for Torah, Avodah v’Gimilut Chassadim – Torah learning, prayer and acts of loving kindness. Self-advocacy through a Jewish lens starts with cheshbon hanefesh (self-reflection). In thinking about Hillel’s wise words, we need to first think about who we are and how we want to fit into the Jewish world. TAG participants develop their Jewish identity and build connection to the community. They work on improving communication skills and goal-setting as well as how to voice their needs in a variety of situations. Students learn how to navigate the world using the Jewish values emulated by the name of the TAG program, along with others such as kavod – respect, derech eretz – showing good manners and being a “mensch”, and b’tzelem E’lokim – people are created in God’s image. Growing as a person and as a Jew is an important step towards advocating for acceptance.

Benyamin Waldman, Nechemya Jakobovitz and Mordechai Cohen enjoy learning and laughing together at Gesher LaTorah.

Benyamin Waldman, Nechemya Jakobovitz and Mordechai Cohen enjoy learning and laughing together at Gesher LaTorah.

Exploring the Jewish community and learning how to interact with others are also components. Students spend time discussing various aspects of what it means to be a member of the Jewish community and ways to strengthen their relationships with others. Through hands-on learning, role playing and multimedia experiences, students embrace v’ahavta l’reyecha k’mocha – love your neighbor as yourself and rodef shalom – pursue peace, while learning to interact in a variety of situations. Developing social skills and leadership qualities leads to building confidence and independence.

Many Jewish communal agencies are fortunate to have programming, support and advocacy for people with disabilities. It’s time for these Jewish professionals to understand that true support must be with the PWD. To echo the message of many disability advocacy groups, an important component to this effort is embodied in the phrase: “Nothing About Us Without Us.” With the proper tools and support, PWD can explore their own strengths and challenges and become self-advocates. People with disabilities are the primary stakeholders in creating a culture of inclusion throughout the Jewish community. As self-advocates, people with disabilities can join with advisors and allies to lend their voice to the endeavor to ensure their rightful place as members of our kehillah – community.

Rachel Delman Turniansky is the Coordinator of Special Needs Programs at the Center for Jewish Education and Principal of Gesher LaTorah. The TAG – Torah, Avodah, v’Gimilut Chasadim program is the adult Jewish education program under the auspices of Gesher LaTorah. Through the support of the #MakeItHappen grant (a joint partnership of the Schusterman and Ruderman Family Foundations) TAG implemented a Jewish Self-Advocacy Program in which students are developing self-awareness, leadership and Jewish identity. Learn more about Gesher LaTorah by Liking them on Facebook.

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The ADA- Unfulfilled Promises

2015 is the 25th anniversary of the signing of the ADA. We will be posting 25 posts over the next 12 months which will focus on the ADA- how it has changed society and what still needs to be done. Our goal is to cover for you, dear reader, as many different angles and issues as possible. Below is the third post in our #ADA25For25 series. The most recent post can be viewed here

By: Barbara Burton

Before passing the ADA, Congress examined the state of people with disabilities in America. They found people with disabilities experienced discrimination in areas such as employment, housing, education, transportation, communication, recreation, institutionalization, health services, voting and access to public services. People with disabilities were frequently isolated and segregated from the rest of society and were routinely excluded from many aspects of life due to a lack of accessibility. Further, they found people with disabilities who have experienced discrimination, unlike people who experienced discrimination on the basis of race, color, sex, national origin, religion or age, often had no legal recourse for that discrimination and were unable to win compensation.

Congress decided the nation’s goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living and economic self-sufficiency. Then it decided the purposes of the Americans with Disabilities Act are (among others): to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities; to provide clear, strong, consistent, enforceable standards addressing discrimination against people with disabilities; and to ensure that the federal government plays a central role in enforcing the standards established in behalf of people with disabilities.

To the people who had worked hard to secure the passage of the Rehabilitation Act of 1973 (the closest thing to a precursor of ADA there was) including participating in long-term takeovers of HEW buildings in San Francisco and other cities, the first version of the ADA introduced to Congress in 1988 was exciting and promised an end to lives of segregation and ongoing discrimination. While the final version of the ADA signed by President Bush in July 1990 came with changes and compromises, across America people with disabilities cheered their victory.

Now here we are 25 years after that historic day. How do we decide if the ADA is all it was supposed to be? I suggest making it personal. 25 years later are people with disabilities doing better than prior to 1990? Are we doing as well as Congress promised?

More people with disabilities are employed now than were in 1990, but overall people with disabilities are underemployed and have an employment rate much lower than people who have no disclosed disabilities.

Wheelchair users traveling by air recount horror stories about damaged or lost wheelchairs and injuries caused by contract employees who do not know how to transfer the traveler safely from the aisle chair to a seat on the plane. Guide dog and service dog teams report a routine inability to hail a taxi in cities across America because drivers do not want the dogs in their cabs.

Reports released in 2014 confirm that healthcare is unavailable to many people with disabilities. Physicians refuse to hire ASL interpreters for patients who are deaf, instead insisting the patient’s children interpret for them. Wheelchair users are often turned away when trying to make an appointment because the office is not accessible.

Voters who are blind or vision impaired find they are unable to vote at the polls because of poorly trained poll workers or non-functioning accessible voting machines. Voters who use wheelchairs frequently discover their polling place is inaccessible.

mid sidewalk poleCity infrastructure is often poorly maintained and designed, making travel around town difficult for people with a variety of disabilities. In some towns utility poles are installed in the middle of the sidewalk leaving no room for a wheelchair. In my city, our new Town Square comes with very high curbs. In one area there is no curb cut allowing someone to cross the street to reach the curb cut on the other side.

It is not unusual for people with severe disabilities to wait for years on a list hoping to be assigned care providers and home services. Until that time many are sent to nursing homes or other institutions. Imagine being a 16 year-old with quadriplegia and living among people in their 70s and 80s. This is true segregation.

This is where we are 25 years later. Yes, we have seen gains, but they have come very slowly. We have bounced back and forth as court decisions whittle away those gains and then return them piecemeal.

Why are we still fighting 25 years later? Where are the legal solutions promised in 1990? The business community, which should be embracing ADA as a relatively inexpensive way to achieve a larger customer base, has fought the changes imposed on it. They balk at installing accessible bathrooms and ramped entrances claiming the cost will put them out of business. With over 20% of the population experiencing some kind of disability, it seems the cost of installing an accessible entrance will be defrayed by the increase in business. We are an aging population and more and more of us require accessibility features.

We cannot legislate respect. After 25 years of the ADA what will it take to change the way Americans think about people with disabilities? Without respect there is no interest in or commitment to change.

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

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The ADA Enters The Digital Space

2015 is the 25th anniversary of the signing of the ADA. We will be posting 25 posts over the next 12 months which will focus on the ADA- how it has changed society and what still needs to be done. Our goal is to cover for you, dear reader, as many different angles and issues as possible. Below is the second post in our #ADA25For25 series. The first post can be viewed here

Dana Marlowe

(credit: Rebecca Drobis Photography)

By: Dana Marlowe

The Internet allows us all to relive our glory days. If you celebrate Wayback Wednesday, Throwback Thursday or Flashback Friday (with their associated Twitter hashtags, of course), some of the images, videos and memories might time travel you back to 1990.

If that’s a year that’s near and dear to you, perhaps you would fondly remember waiting for an episode of a new cartoon called “The Simpsons,” or maybe you were anticipating the first images to come from the Hubble Telescope. Probably more than you care to admit you were synchronizing hand motions to Madonna’s “Vogue” or jamming to MC Hammer.

But do you remember where you were when President George H.W. Bush signed the Americans with Disabilities Act (ADA)? That was the equivalent of disability advocacy going quadruple platinum. And it’s still rocking our charts twenty five years later. So strike a pose, because ‘U Can’t Touch This’ blog from taking a ride on a nostalgia rocket.

Writing this from the perspective of an accessible technology company, my favorite flashbacks come not only in music, but in tech products and devices. It’s always entertaining to see the differences between then and now. People ‘back then’ were saving on floppy disks as opposed to the cloud now. They were gaming on MS DOS, not touchscreens on tablets. The World Wide Web was just proposed–HTML then was not as fully developed as it is now. People with disabilities were using human readers to access print content in the 80s and 90s, and now PDFs scan text to access screen reading software. They were calling with TTYs and now text messaging and voice relay is ubiquitous. Look how far we’ve come, both in business and personal advances!

The ADA covers public accommodations, or entities, both public and private, that are used by the public. Used primarily more in the physical sense of physical buildings and services, language from the 90s never fathomed how prevalent and pervasive the Internet would be, nor the supporting technology. All of those places the ADA mentions have websites, yet are those sites covered?

Bill Gates has said that “The Internet is becoming the town square for the global village of tomorrow”, and he’s truly right. The Internet builds upon itself in unfathomable speed and innovation. But if all the architects don’t have a voice, can they get inside a structure that could be laden with barriers? Ironically, also in 1990, Tim Berners-Lee, the father of HTML, published a more formal proposal for the World Wide Web and the first web page is written. You don’t have to believe in coincidences, but websites are as old as the ADA, and the two grew up simultaneously.

I believe that technology is a great unifier. It levels the playing field. Accessibility is the nexus where technology innovation and disability advocacy meet. It’s an incredible union.

Dana Marlowe presenting at the “Comics & Medicine Conference” at Johns Hopkins School of Medicine about the intersection of graphics medicine, technology, and accessibility. (credit: Sharon Rosenblatt)

Dana Marlowe presenting at the “Comics & Medicine Conference” at Johns Hopkins School of Medicine about the intersection of graphics medicine, technology, and accessibility. (credit: Sharon Rosenblatt)

When the ADA was revised in 2010, more attention was placed on accessible design with inclusion of new technologies. Many notices of proposed rulemakings included the Internet as a focus. Yet, as of publication date of this blog, there is no specific published law or section that defines how the ADA is applied to the Internet. Moreover, it doesn’t consider how a person with a disability would access content, especially with their assistive technologies like screen reading software, magnifiers, Braille displays, and more.

The lack of coverage in the ADA hasn’t stopped the fight for access by people with disabilities. In fact, many organizations have been sued for the inaccessibility of their websites under the ADA arguing that the web is a public space. Netflix was sued by the National Association of the Deaf for failure to provide captioning for some streaming content. Companies like the one I work for, Accessibility Partners, help prevent lawsuits proactively by ensuring that accessible solutions are released pre-development and with the input of users with disabilities.

But that Netflix case was almost three years ago. Today, there is a lot of momentum behind making the Internet an inclusionary public space. The Internet is only scratching the surface of what it means to have access to a public space. How do we get to the Internet? The answer is through our devices and hardware technology. Items like smart phones, tablets, kiosks, computers, and more that have broadband capabilities. These devices must factor in accessible design with feedback by users with disabilities. We’ve found that using testers and engineers with varied disabilities not only levels the playing field for technology, but also helps employ those with disabilities. It’s truly a success in multiple categories.

The ADA realizes the necessity of accessible technology for access to the Internet. While on the radar, it is slow moving. For another flashback, in June 2014, they proposed a rule that will address technical standards and obligations of state and local government agencies and public accommodations to make websites accessible.

Mark your calendars! The next regulatory process is scheduled for March 2015. There are already laws that cover government web content, and we are very optimistic that the ADA will be expanded to cover more public spaces. Wishing a very happy twenty-fifth year to this groundbreaking law, but with the caveat to continue helping those with disabilities as you mature.

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 Accessibility Partners on Facebook and engage Dana on Twitter to learn more.

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2014 Recipient Of Morton E. Ruderman Award In Inclusion Announced

In continuing its commitment to advocating for the full inclusion of people with disabilities into society, the Morton Edward Ruderman Award in InclusionRuderman Family Foundation (RFF) announced today that it will award the second annual Morton E. Ruderman Award in Inclusion to Ari Ne’eman, President of the Autistic Self Advocacy Network and Member of the President’s National Council on Disability. The $100,000 award recognizes an individual who has made an extraordinary contribution to the inclusion of people with disabilities in the Jewish world and the greater public and is based on past achievements and the potential for future contributions to the field.

“As a person with autism, Ari Ne’eman serves as an inspiration to millions of people with disabilities around the world,” said Jay Ruderman, President of the Ruderman Family Foundation. “As one of the leading disability self-advocates in the United States, Ari is extremely wise beyond his years. His voice advocating for people with disabilities taking control of their own lives is respected in our nation’s capital and throughout our country. My father, someone who believed that we all deserve a fair shot in life, would have been proud that Ari has received an award in his name.”

Ari is one of America’s most recognized self-advocates for the rights of people with disabilities. He is the President and co-founder of the Autistic Self Advocacy Network, an advocacy organization run by and for Autistic adults seeking to increase the representation of Autistic people across society. In 2009, President Obama nominated Ari to the National Council on Disability, a federal agency charged with advising Congress and the President on disability policy issues. From 2010 to 2012, he served as a public member to the Interagency Autism Coordinating Committee, a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism. Ari also served as an adviser to the DSM-5 Neurodevelopmental Disorders Workgroup convened by the American Psychiatric Association. In 2010, he was named by the New York Jewish Week as one of their “36 by 36.″

Ari Neeman “I am sincerely honored and humbled to receive this award from the Ruderman Family Foundation,” Ari said. “This recognition carries special meaning to me, not only as a person with a disability, but also as a Jew. The Ruderman Family Foundation’s continued leadership on issues of disability inclusion in the Jewish community should be a source of sincere admiration and pride.”

“People with disabilities deserve the right to have our voices at the center of the national conversation about us. I believe that no conversation on autism or any disability is complete without the meaningful inclusion of those most directly impacted: people with disabilities ourselves.”

The Award was named after Mort Ruderman, a founder of the Ruderman Family Foundation. Morton E. Ruderman was a successful entrepreneur, mentor and proud family man. He saw his success as the result of help he received from others and was therefore passionate about providing opportunities for others – including assisting many people in becoming independent and successful in business.

The work of the foundation addresses Mort’s view that the exclusion of persons with disabilities- in Jewish life and society at large- is fundamentally unfair. Twenty percent of the U.S. population has a disability, yet they are the most excluded group in many ways; for example, 70 percent of working age adults with a disability are unemployed.

The primary consideration for the award is whether the recipient’s work has made life more equitable for people with disabilities. This award joins other signature programs of the Ruderman Family Foundation, which believes that inclusion and understanding of all people is essential to a fair and flourishing community.

To read more about Ari Ne’eman

To learn more about Morton E. Ruderman

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A Simple Question

(credit: Lisa M. Collard)

(credit: Lisa M. Collard)

By: Susan Glairon

The woman does not want to call attention to herself. It’s Friday night. Shabbat services. Another week of screaming tantrums are over. She is looking for a break.

As she silently prays, one of her sons rocks back and forth. Quiet pauses between verses become filled with the thumps of a small back rhythmically hitting a chair. A stranger angrily mouths “Quiet!” to the young mother. The woman moves to the back of the sanctuary, taking her two young children with her, and stands and prays. The same son twirls around. Another congregant asks her to leave.

But there are things that the congregation doesn’t know. The young single mom has two children with autism. She has come here for community. For support. For five minutes of conversation during an oneg (Shabbat celebration).

There are other things they don’t know. They don’t know her or her children. They don’t know that she spent most of her life living in Israel. They don’t know all the gifts autism has taught her, such as patience and fortitude. They don’t know how bright and inquisitive her sons are.

The weary mom doesn’t tell them these things. She just leaves. Similar to when strangers in stores stare when her children melt down, she feels rejected, this time in a place she thought she’d find community. Still, she is an “autism mom,” someone who has fought for her kids since the day they were diagnosed. She does not give up easily.

The following week she tries a second synagogue, but the response is similar.

The third week the mother visits a church, where the congregants know she is Jewish, but they consistently give her the support she craves. When either of her sons fidgets during services, church members offer to help. They invite her to dinners and even give the financially struggling mom grocery gift cards.

The story is true- but the point is not that one “religion” or “house of worship” does a better job than the other. As a lay leader in Jewish inclusion, I talk a lot with parents and have attended leadership institutes and Jewish disability meetings where the lack of inclusion is often discussed. Nationwide, those with disabilities and their families often feel left out of their Jewish communities. Simply put: Synagogues and Jewish communities could be doing a much better job at fostering an inclusive environment.

Elaine Hall (center) speaks with Rabbi Ruthie Gelfarb (R) of Congregation Har HaShem, while left to right Rabbi Mark Glickman, HHS interim rabbi, Susan Glairon and Yonatan Malin listen.

Elaine Hall (center) speaks with Rabbi Ruthie Gelfarb (R) of Congregation Har
HaShem, while left to right Rabbi Mark Glickman, HHS interim rabbi, Susan Glairon and Yonatan Malin listen.

Most congregations embrace the words “tikkun olam (healing the world).” They feed the homeless. They fill the freezers of congregants who have lost loved ones. They participate in blood drives. Yet they often have no contact with families who spend their days trying to find the best therapies for their children and their nights worrying what will happen to their adult children after they can no longer care for them. Some of these parents care for adults who cannot toilet independently or who have feeding tubes and oxygen. Many have spent their retirement accounts on therapies. Often their spirits are weary from the physical and emotional needs of extra caretaking and from fending off insensitive comments from a world that blames the actions of all children on the parents.

These parents would love a tender word, a warm meal brought to their home, and ways for themselves and their loved ones to participate in Jewish life. Inclusion is not about expensive equipment or programs. It is about awareness and acceptance. It’s not about tolerance; it’s about embracing these families.

There is no way the synagogue congregants could have known the woman’s story without her telling it. But no one knows a person’s story the first time they meet. Inclusion starts with asking, “How can I help?”

Susan Glairon works to improve inclusivity of people with disabilities in her Boulder, Colo. Jewish community. Susan received a #MakeItHappen micro grant (from the Schusterman Foundation in partnership with the Ruderman Family Founation) and worked with two reform and conservative congregations to bring Elaine Hall to Boulder for three speaking engagements. Visit Susan’s Web sites at www.inclusionconnections.com and www.jewishinclusion.org  Susan is the mother of 22-year-old son, who has autism and a 19-year-old daughter, who has dyslexia. Both her son and daughter were bar mitzvahed and confirmed.

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