POWER TO ALL PEOPLE

A Call to Care

An Interview with Sharon-Shapiro Lacks

 The physical, communication, and attitudinal barriers that Jews with disabilities face need to disturb our Jewish community leaders down to the cores of their very souls.

I had the privilege of meeting Sharon Shapiro-Lacks some weeks back during Sukkos. It was only after several conversations that she mentioned Yad HaChazakah, an organization she launched 12 years ago with her husband, Yisroel, and 10 other board members, to assist and empower people with disabilities. As a person with disability, Ms. Shapiro-Lacks is well familiar with the challenges faced by those whom she helps. She’s also candid, fun-loving, and a great friend – with an impressive career history to boot. These are the kinds of attributes she wants everyone to see when they meet someone with disability – not a wheelchair. And this is what Ms. Shapiro-Lacks and her husband seek to accomplish through the multifaceted ventures of Yad HaChazakah. I am fortunate to now count Sharon among my friends, and am grateful for the time she took to explain her experiences and endeavors.

JE:  What are some challenges that you felt were not being addressed by the greater community that led you to launch Yad HaChazakah?

SSL: As a wheelchair using Torah-observant woman I cannot go to just any shul, mikvah, event hall, or yeshivah.  I am barred from attending many events, classes, or minyanim because of lack of wheelchair access.  When there is access to a shul for men who use wheelchairs, the ezras nashim is likely to be upstairs. No lifts or ramps are provided for access to the women’s sections for women with wheelchairs or walking aids.  I have been carried, but being carried forfeits my privacy, dignity, and safety.  It’s also particularly dangerous, especially for heavier women and the people carrying her.  That means that female wheelchair users are likely to stay home and remain isolated. 

Barriers to community participation come in many forms: physical, communicative, programmatic, and attitudinal.  Advertisements and registrations for community events very rarely state whether or not the venue is wheelchair accessible and that reasonable accommodations will be provided upon request.  We don’t think of offering large print or Braille handouts for people with vision disabilities or real-time captioning or sign language for those who are hard of hearing or Deaf. Autistic adults and children are misunderstood and are sometimes forced to stay in overstimulating environments with no quiet space to which they can retreat. 

If you have a visible or hidden disability, you are automatically assumed to be marriageable only to someone else with a disability, when in fact someone with a disability can be a very attractive shidduch. My husband, Yisroel (Wayne), who has no diagnosed disability, is often asked, “Is that your sister?” or “Is that your mother?”. When he says, “She’s my wife,” they extol him for being a tzaddik for “taking care of her.”  They cannot ever consider that an able-bodied man would desire to marry a wheelchair-using woman.  In their minds, it’s impossible for a wheelchair-using woman with a speech disability to be an attractive marriage partner in every conceivable way and use her strengths to compensate for his weaknesses.

We’ve been married for 35 years. We met in my college Hillel during my freshman year and his first year of graduate school. If we depended on shadchanim to choose our potential partners, we would never have met because of prejudiced presumptions. That frightens us very much. 

In 2006, these experiences plus our concerns for others with visible or hidden disabilities drove me to gather ten other like-minded people with diverse talents and disability-related experiences to form Yad HaChazakah-The Jewish Disability Empowerment Center.

JE:  Can you tell us a bit about what you do? 

SSL: Led by Jews with disabilities, we at Yad HaChazakah-The Jewish Disability Empowerment Center, empower our peers with disabilities to control their own lives and to promote access to and full participation in their communities. 

We accomplish this by serving as role models, by providing guidance, information, and self-advocacy training to groups and individuals, and by advancing access and inclusiveness in Jewish life and learning through education and advocacy.

Yad HaChazakah is the first and only Orthodox organization that heavily involves our target populations – Jews with disabilities or ongoing health conditions – in our organizational governance. No other Orthodox Jewish organization is led by and addresses the concerns of people with obvious or hidden disabilities who don’t necessarily need structured programs and merely want to lead typical Jewish lives.

We base ourselves on the independent living model. Centers for independent living  are defined as nonresidential, community-based, cross-disability, non-profit organizations that are designed, governed and operated by people with disabilities. There are currently 403 centers throughout the United States and more throughout the world, including Israel.

Long before I created Yad HaChazakah, I evolved, over 17 years, into an experienced nonprofit manager, policy advocate, and executive director through my employment at three centers for independent living in New York City.  I currently serve on the board of the Brooklyn Center for Independence of the Disabled.  In my different roles, I have improved access for people with disabilities to transportation, voting, health care, housing access, employment, and safety net benefits through influencing legislation, regulations, and policies.

JE:   I noticed on your website that you have speakers with disabilities who present workshops. Do you feel these have made an impact on the greater community?

SSL: Each year we deliver several presentations in New York and other Jewish communities. A person with a disability representing Yad HaChazakah is always the lead presenter.

For example, for six years running, we have been asked by Yeshiva University to present a workshop, Disability and Pastoral Counseling, to Rabbinical students at RIETS.  Anyone can join the disability demographic at any point in life. In the class, we discuss how rabbis can work with individuals with hidden or obvious disabilities and their families and find appropriate resources for support.  The students leave the class with a new appreciation for what people with disabilities can bring to our communities if rabbinic, professional, and lay leaders work to eliminate the barriers that people with disabilities face every day. We would love to expand to other yeshivos and smicha programs.  

Other workshops we’ve given thus far include How to be an Effective Consumer; Communicate Towards Success; Risk Taking, Autonomy and Responsibility; The Impact of Disability on Family; Disability: From Pity and Charity to Dignity and Empowerment; and How to Become a Welcoming Congregation. 

JE:    What are some of the best ways family and friends can help their loved ones with disabilities?  

SSL: Active listening, giving options (not advice or directives), and asking the person with the disability for help are the best ways to support someone with a disability.  Control of one’s own life is a precious gift.  Too often, we rob our loved ones with disabilities or ongoing conditions of that gift by assuming too much responsibility over their lives.

We believe our intentions are for the best. After all, we hate seeing our loved ones in possible danger or pain.  However, one grows into a uniquely independent and powerful self only by making difficult decisions, taking risks, and giving to others.

At Yad HaChazakah, we work with parents, spouses, and other family members to encourage their family member with the disability to speak on their own behalf, to identify what they want in life, and to take ownership of the process of achieving their goals to the greatest extent possible.

JE:  In what ways do you work with schools and yeshivos? 

SSL: Increasing access to Jewish schools and yeshivos is a priority for us. Every Jewish child should have access to Torah education to the fullest extent of their cognitive capacities.  No child with average or above average intelligence should be denied entrance to a yeshivah due to his or her physical disability.

We hear horror stories, too long after the fact, of kids being turned away from yeshivos due to their disabilities and due to yeshivah administrations’ reluctance to think out of the box and consult with experts in the field. Every successful leader has a can-do attitude.  Challenges don’t cause real leaders to withdraw. Challenges call to real leaders to find solutions. We want yeshivah directors and administrators to own the responsibility to make sure that every Jewish child can physically access your school. We want them to work with parents, students, and organizations such as Yad HaChazakah to figure out ways to make your yeshivah building, programs, and curricula more accessible to students with different abilities. We encourage parents to convey your stories to us at Yad HaChazakah and to contact us for help while you’re encountering resistance.

JE:  How does Jewish law play a part in what you do? 

SSL: Yad HaChazakah is an Orthodox Jewish organization, and Rabbi Benjamin Hecht, the founding director of NISHMA.org, is our primary rabbinic advisor.  We promote the examination of disability issues through Orthodox Jewish lenses. Torah is the blueprint for the world, so it is incumbent upon us to grapple with how disability and difference is handled throughout the Tanach and rabbinic discourse.     

Admittedly, some laws and stories in the Tanach and Talmud raise questions for and cause discomfort to people with disabilities, such as the prohibition for Kohanim with mumim, blemishes or certain disabilities, to serve in the Beis Hamikdash or partake of the offerings. However, we must take time to learn and struggle to understand exactly what G-d and the Rabbeim are conveying.  

Most notably, the Rabbinical Council of America reached out to us to draft its 2014 resolution on Increasing Access for and Participation of Jews with Disabilities in the Orthodox World. This was a crowning achievement for Yad HaChazakah because the RCA relied upon our expertise on the issues and now we have explicit rabbinic authority behind our advocacy to increase disability access, acceptance, and participation.  

JE:  Can you give us some detail on the coaching and support you offer?

SSL:  We use our professional coaching and counseling skills, knowledge of resources, laws, and safety net and social service systems, and personal experience with disability to help our callers get married, prepare for employment, or manage their personal care. We work with couples and families, as well as individuals.

For example, a young professional woman with a physical disability was seriously dating a scholarly young man who has no disability. However, the young man had understandable concerns about the extra physical attention she might need, especially as they age.  They were married two months after a coaching session with Yad HaChazakah staff that addressed how they would constructively approach possible physical care challenges.

JE:  Do you feel that strides have been made in the way the greater world views, accommodates, and accepts people with various disabilities?

SSL: America, for people with disabilities, is much better than it was decades ago.  When I was a child in the 1960’s I never saw other wheelchair users rolling along on the street. Today, you see wheelchair users on buses, in restaurants, at amusement parks, and in secular school classrooms with our able-bodied peers. You see captions on YouTube videos that benefit people with hearing disabilities or audio processing, and you hear clear bus or train stop announcements that benefit Blind people as well as all passengers.  Accommodations originally designed for people with disabilities end up benefiting everyone.

But please recognize: these changes were hard fought.  People with disabilities with their ventilators, personal care attendants, sign language interpreters, and service animals testified before Congress and state legislators and led major protests and month-long sit-ins in order to pass and implement the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990.  Today, we have to vigilantly ensure that disability-related laws are correctly implemented and not eroded and that we are not forced into nursing homes due to decreases in or lack of expansion of Medicaid funded and community-based long-term care options.

Many people with disabilities are fighting against assisted suicide or “medical aid in dying” laws that give doctors power to determine who has “just cause” to expedite their death up to six months before expected natural death.  These laws have been passed in eight states thus far and Yad HaChazakah is a leader in the fight against passage of this law in New York State.

Doctors are human and have their own fears about becoming disabled. Therefore, doctors should not have the authority to determine who should live or die based upon their assessments of a person’s rationality; they can deem it rational to want to die if one expects not to be able to walk or talk.  We at Yad HaChazakah know from experience that even if a person might eventually need to use a bedpan and have someone clean them, he or she can live with disabilities in dignity and with purpose until they die, given they have proper care, technology, and pain management.

Jewish communities have made many strides towards increasing community inclusiveness through the work of many organizations that devote themselves to the concerns of Jews with disabilities. You see us more often in your synagogues, stores, and restaurants.

However, Deaf people or those who are hard of hearing still cannot access most community events or online Torah videos. Yeshivas and day schools too often are still reticent to accept qualified students with disabilities. Campers with physical disabilities need sleep-away or day camps that will accommodate and welcome them along with their nondisabled peers for more than a week. Wheelchair users cannot access many shuls and most bimahos, shulchanos, and ezras nashim. Blind people still cannot effectively access many Jewish publications and websites. For marriage, disability is still sadly matched with disability or other challenges rather than person with person.  

The physical, communication, and attitudinal barriers that Jews with disabilities face need to disturb our Jewish community leaders down to the cores of their very souls. We can no longer accept dismissive, laissez fair, and nothing-can-be-done attitudes.  Some solutions are easy, and some are more difficult. However, if we are determined to enrich our communities by the participation of all people of all shapes and sizes with different abilities and unique personalities and sensitivities, we will take the steps needed to become more accessible, accepting, and inclusive communities.