1. Please let me know a bit about your personal backgrounds. Where did you grow up? What was your family like as you grew up? Did you have siblings? What were the attitudes of your immediate and extended family and your community (including school and synagogue) to you regarding your disability?
NJ - We are attaching our bios. I suggest reading my My Jewish Journey blog. I grew up in Brooklyn, NY. My parents were Survivors. I have one older sister and one younger brother.
DSJ – I grew up in The Bronx, NY, with one older sister. My father's parents were Orthodox Jews from Russia/Poland. My mother's were secular Jews from Germany, both born in the U.S. We kept a kosher home, observed holidays and Yarhzeits, and my father went to High Holiday services. My sister went to religious school for a year or 2. I was never given the option. It wasn't until we decided to send our son David to religious school that I became formally involved in Judaism. David had his Bar Mitzvah in 1999. I had mine in 2005!
Neil and I both went to public school. Up to 8th grade, we were segregated with other disabled kids. In high school, we had homeroom with our disabled peers but went to regular classes with nondisabled kids. Neil went to Hofstra U. for his B.S. in math. Years later, he got an MBA from Golden Gate U. in San Francisco. I received my BA in sociology from Long Island U. and my MA in Human Sexuality, Marriage, and Family Life Education from New York U.
Our education was very important to our families as a way to level the playing field because of our disabilities. They saw it as a way for us to be successful.
2. Where do you live now? How old are you now?
NJ - We live in Oakland, Ca. I'm 67. Denise just turned 70.
3. How should I refer to you in the article in terms of your profession/professional title?
NJ - I am a retired Wells Fargo Bank Sr. Vice President. Denise is an Author and Educator
4. I understand you have a son named David. How old is he? Is it true that you are the first couple with CP to adopt a baby in the US?
NJ - David was an at-risk baby. The Question of David is a book Denise wrote about how we adopted and raised our son.
DSJ – David's now 33. I'm not sure we were the first couple with CP to adopt a baby. There have been other couples with disabilities who've adopted before we did, or have raised children.
5. Did you meet one another at Camp Jened? What year was that? How old were you? (And if I am recalling this information incorrectly from the film, please correct me!) What year were you married?
NJ - We met at a Saturday recreation program in NY when I was 8 and Denise was 11. We married in 1983.
DSJ – It wasn't until we were both living in California that we started seeing each other in 1982, after we both attended a Rosh Hashannah potluck at our mutual friend Judy Heumann's house.
6. What is your history with Camp Jened? Did you attend as a camper? As a counselor? For how many summers?
NJ - I was a camper at Camp Jened in 1968 and 1970.
DSJ – I was a teen camper from 1966-68, attended adult camp for 2 weeks after summer school in '71, and in '72, I was an adult camp counselor. After I received my Masters' in Human Sexuality, I was hired back in '77 to run the life skills program, specifically created to work with campers on their independent living skills and facilitate groups in talking about self-esteem, healthy relationships, and human sexuality. I also provided one-on-one peer counseling.
7. How did Camp Jened help shape you as personally and professionally - especially with regard to your activism on behalf of the rights of people with disabilities?
NJ - The 3 main things I learned at Camp Jened are:
1. We need not and should not assume that society and the physical environment will not change, and we have the power and responsibility to ensure that change.
2. We cannot and should not allow others to speak for us and tell us what we can and cannot do.
3. We are OK the way we are, and our bodies can feel good and bring us joy.
DSJ – Jened fostered my sense that I could be of help to others. Even as a camper, I was expected to assist my fellow bunkmates. Up until I went to Jened, I always got the message that I would always be the one needing help. At Jened, I discovered everyone has something to contribute. It gave me a sense of self-worth and my own unlimited possibilities.
8. I believe it was Neil who was quoted in the film as saying that there was a "hierarchy" of disabilities, with polio at the top and CP at the bottom. Does identity politics play into the disabilities world? When one refers to people with disabilities, that covers such a vast array of situations and conditions -- can all people with disabilities really agree on how to proceed with regard to fighting for rights for the disabled?
NJ - There are more than 50 million people with disabilities in the US. Identity politics is present everywhere. I don’t know any group that can agree on how to proceed with anything!
DSJ – I was the one who spoke about “hierarchy.” People with disabilities have had very few role models. So, in looking around, we've had to adopt the messages we've gotten from a nondisabled ableist society that has always devalued and marginalized us. That is what we have in common, and that's what drives the Disability Movement.
9. Do you think that rights for people with disabilities would have been advanced in the way they have without the movement having historically intersected with the civil rights movement, feminist movement, and the beginning of the gay rights movement, etc., in the 1960s and 70s?
NJ - The anti-Vietnam War should be added to the list of civil rights movements of the 1960s and 1970s. All of these movements are very interrelated. I don’t think any of the movements would be successful alone.
DSJ – I think there would have been a Movement regardless, but it would have looked different.
10. What have been your greatest achievements and your greatest struggles as someone with a disability?
NJ - My greatest achievements have to include having a wonderful familyand , great friends, being active in my community and my synagogue, designing the 1st 7x24 banking system, climbing the corporate ladder, and playing a significant role in the Disability Movement. My Becoming More Disabled blog describes my greatest struggle.
DSJ – Being an author (THE QUESTION OF DAVID: A Disabled Mother's Journey Through Adoption, Family, and Life—available on Amazon), a wife and mother, and an active member of our Jewish, Disability, and secular communities. I just finished writing my second book, MY CAMP JENED SUMMER: A Teenage Misfit's Tale of Love, Heartache, and Belonging, and am shopping for a publisher!
11. What still needs to be achieved vis-a-vis rights for people with disabilities? What do you think should be prioritized?
NJ - The top priorities that are needed to improve the lives and rights of people with disabilities that I see include:
1. Decrease the occurrence of homelessness and poverty for people with disabilities and their families.
2. Implement a healthcare-for-all plan that includes long-term medical expenses, such as personal assistant services, durable medical equipment, on-going therapies, and maintenance drugs. The plan must be affordable and accessible to everyone regardless of economic status.
3. Decrease the number of incarcerated people with disabilities. For too many people with mental health, learning, and intellectual disabilities; prison is the new institution.
4. Raise expectations of people with disabilities by their family, teachers, counselors, and themselves. Low expectations might be due to the belief that people with disabilities need to be poor to receive the services they need. It may also be due to the lack of peers with disabilities.
12. I recall interviewing Neil a number of years ago about inclusion and accessibility issues in the Jewish community. Please remind me of your involvement (both of you) in the Jewish community (synagogue, etc.). And how do you think Jewish organizations, synagogues, schools, etc. have been in terms of accommodation and inclusion? What more should be done?
NJ - Denise and I started the Access Committee at Temple Sinai. Denise was its 1st chairwoman. I am a Temple Sinai board member. We have presented at Union of Reform Judaism’s conferences as well as at the Hebrew Union College in NY. I am also on the board of RespectAbility – an organization that does a lot for people with disabilities in the Jewish community nationwide. See RespectAbility and Faith Inclusion. The most important thing the Jewish community can do to be more accommodating to people with disabilities is to expect more, give us more responsibility, and have fun!
13. How has the coronavirus pandemic influenced your life? And are you concerned about how the pandemic could influence the lives of people with disabilities long-term? And are you worried that people with disabilities will be discriminated against in terms of being denied critical medical care if there is not enough to go around?
NJ - After the Pandemic is a blog that I am working on.
DSJ – It is the foremost concern at the present time. We know that people see are lives as disposable and dispensable. That's why the film CRIP CAMP is so vital right now; it reminds audiences of the tenacity and resilience of the human spirit in each and everyone.
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