Earlier, the Disability Visibility Project published a blog post featuring an interview of Ken Stein by his wife Ingrid Tischer. Alice Wong, Project Coordinator of the DVP interviewed Ingrid at StoryCorps San Francisco on July 24, 2014.
This is the first of three posts containing approximate excerpts from their conversation.
On early childhood experiences
Alice: So, Ingrid, I want to thank you for coming today… you were the first person I thought about when I started this project and I’m honored to have you share the space with me.
Ingrid: Well, thank you for the honor of being your interviewee. [LAUGH] I’m really excited too. I was born with a type of disability called Muscular Dystrophy. It’s congenital, which means I was born with it. It’s genetic. I was born, you know, in the mid-60s when a lot of things were not as advanced, right now, diagnostically. And I come from [a], you know, basic white, American, middle-class family. I have an older brother, two parents. My dad worked at Kodak. My mom stayed home and took care of us in upstate New York. And in that regard, I had a very stable, pretty happy childhood. I was misdiagnosed when I was about two with cerebral palsy and I started wearing what’s called a Milwaukee back brace when I was four from a condition called scoliosis, which is curvature of the spine. So I spent a fair amount of my very early childhood in hospital clinics for long appointments and in brace shops.
It wasn’t really a traumatic sort of experience for me because I happen to get along very well with my mother and my mother was always there. So if I had to go through that type of medical experience I would say it was about as easy as it could have been.
On going to a pre-school for kids with developmental disabilities
Ingrid: As I was a little kid when I was a very little kid…I didn’t have a lot of friends. So my mom got me into what was then a very progressive preschool near where we lived that was run by United Cerebral Palsy, I think. And…it was wonderful. I mean, it was probably the best school I really ever got to go to…It was segregated in that it was specifically for younger children who had what they think they called developmental disabilities…. [It’s like when] you’re actually, finally with tons of other people that look like you, talk like you, act like you. It can be a very empowering moment, to be just like everybody else.
For about half of the day we were in a, you know, unremarkable but good preschool environment. Toys, playing, good supervision, that kind of thing. And the toys were really top notch, I have to say. [LAUGH]… My mother, I think, was really scared that I was gonna be horrified at being dropped off there and instead, I guess, on the first day, I just turned around and walked away from her.
And it was really a big contrast couple years later to when they sent me to what was then called an integrated experimental school for first grade. This was before children with disabilities… had legal rights to attend public schools. So this was kind of the best deal they were willing to offer and that was traumatic. It was poorly run, overcrowded and I was in a large classroom with 40 other children and two teachers. And a lot of things were a lot stronger than I was. And it was just bedlam.
Alice: And was it, was this pre-mainstream in the sense that these were mostly students with disabilities [still segregated]?
Ingrid: It was experimental in that it was half and half. And the problem I think, in my experience… was that the children were not supervised. So you had really rambunctious, strong, non-disabled children also with children like me, who were more physically frail… But that’s what it was. I think I was more of a natural loner.
On feeling like an outsider among other kids with disabilities
Ingrid: …what I do remember was that even the kids there with disabilities, never really felt like me, like I still felt like an outsider. Most of the kids there were in wheelchairs and had considerably more severe disabilities than I did and there were times when I got excluded…It was, I think about as good as it could have been.
Alice: And that’s pretty amazing that your mom found out about the school and was able to get you connected and that you had that school in your area. It was in your area, right?
Ingrid: It was totally. That’s the thing, like, it was great, but it was totally by the luck of the draw. We happened to live outside Rochester, New York. Which, at the time, happened to have a much more actively engaged, privately funded community [organization], United Cerebral Palsy, largely because there was, I think, one man there, who I looked up later, named Al Segel, who had a relative who had cerebral palsy back in the 40’s. He got the business community involved and that’s how he came to be. This was not like a government-funded thing, it was purely private industry.
Alice: And this is where, you know, the huge divide is… with such privilege and how geography really determines how people with disabilities can fare well. You know, so many people are dependent on government, state-run programs that really aren’t adequate to meet the needs of… kids with disabilities, but it’s nice that you had those advantages.
Ingrid: …the thing I’d like to take away from it, talking to somebody is not like just, “Oh thank god I was lucky…” but that it’s a demonstration that under the right circumstances, with the right support, being a little kid with a disability is not like this, you know, mishmash of suffering and deprivation and isolation.
Ingrid Tischer became DREDF’s Director of Development in 2011. She’s been a Bay Area-based fundraiser, non–profit manager and activist for nearly 20 years. Her staff and consulting work has supported free healthcare services, human and environmental health policy, gender and LGBT anti-discrimination, employment civil rights, and disability rights. She got her start in 1992 in a grassroots women’s clinic before moving on to cutting–edge advocacy organizations Breast Cancer Action, Equal Rights Advocates and the Legal Aid Society – Employment Law Center. Her media advocacy experience has involved working in coalition with the Labor Project for Working Families, MomsRising and The Impact Fund. She has served on the Women’s Community Clinic Advisory Board, is an alumna of the Women’s Health Leadership (WHL) Program for emerging women healthcare leaders, and has been a faculty member of the California Asset Based Community Development (ABCD) program. Her writing has appeared in The Progressive, Ragged Edge, off our backs, and other outlets. She holds a B.A. in Philosophy from The American University in Washington, D.C.
Alice Wong is a Staff Research Associate, Department of Social and Behavioral Sciences, UCSF. Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving. Currently, she is the Project Coordinator for the Disability Visibility Project: A Community Partnership with StoryCorps and an advisory board member of APIDC, Asians and Pacific Islanders with Disabilities of California. Alice is also a Presidential appointee to the National Council on Disability, an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy.