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 second of three posts containing approximate excerpts from their conversation.
On having a progressive condition that changes over time
Alice: … you mentioned that you weren’t a wheelchair user as a child and I see that you are one now. How has it, your disability, changed your life, over a lifetime…and how has it kind of changed the way you do things and organize things in your own life?
Ingrid: Part of it is about expectation. You know, I mentioned that I was diagnosed with cerebral palsy when I was like two and I had that diagnosis until I was about eleven when we just happened to go to another a different doctor because we moved. And they said, “No we really don’t think this diagnosis is right.” And I found out I had muscular dystrophy. The difference there is that, you know, muscular dystrophy is degenerative and it’s progressive and cerebral palsy is stable and non-progressive. So, I kind of went from thinking like, “Well, at least I’ll always kind of be like this. Maybe I’ll even get better.” To realizing, “Well, it’s gonna be downhill slowly, but it’s still downhill.”
The name [muscular dystrophy] for it has always been kind of a placeholder, so as far as like using a chair or using a walker, using a cane, to me its like not having a clear diagnosis kind of set me on the path of not really thinking about what might be coming up so as long as I could walk. I was a walker… when it finally just became impossible, then I transitioned and I think, I realize in retrospect, I could have made things a lot easer on myself by accepting accessories and tools earlier than I did.
Alice: … when we first became friends, it was so exciting to meet somebody else with SMA [spinal muscular atrophy and how] we both have scoliosis… in my case I was a wheelchair user at an early age and to me [it’s so odd to see so many people with muscular dystrophy fighting tooth and nail]… to remain walking and to remain mobile. And you know, [there’s] often [a] feeling that, I’m not saying you…that being in a wheelchair is a huge symbol of the trajectory in terms of progression and the downward spiral, which I have to always giggle because, you know, I have been down this downward spiral farther than you. [LAUGH] And I’m like, “Its okay, join us, you’ll save energy, there’s nothing wrong with being in a wheelchair!”
Ingrid: Okay, first of all, you’ve got two people with muscular dystrophy sitting here. Neither one of us yet has uttered the words being stricken, and of course we should clarify that we are not on the verge of death.
Alice: And we are not suffering.
Ingrid: So anybody who’s listening to this
Alice: Yeah, that’s right. We’re not near death.
Ingrid: So, but we’re talking about trajectories, because it is it is something about our condition that it does change over time, and it’s not, you know, I’m joking here, about this… I’m talking to you, the listener, this downward spiral. [LAUGH]
Alice: We are being silly.
Ingrid: This death march.
Alice: Morbidly humorous, but don’t take it too seriously. This is just our crip comedy.
Experiences with employment and health insurance coverage as a young adult with a disability
Ingrid: By the time I was in college or in and out of college and through dealing with these things, things had changed. My parent’s insurance was no longer covering me. I had good employer coverage through my own job, but…didn’t cover the same stuff, and MDA [Muscular Dystrophy Association] had stopped paying for a lot of things. So there were times when…I have a doctor tell me like “You should really be doing blah, blah, blah…” and I’d say, “How much does that cost?” And the doctor would wave the question off and say, like, “Don’t worry about that.” And I’m like, “I have to worry about that.”
And then when I was 27, I had a medical crisis where I ended up in ICU for a week and I discovered that I’d been living with sleep apnea for at least fifteen years.
Alice: Me, too… I was oxygen deprived all through [high school and college].
Ingrid: Me too. The thing was they sent me home with this machine…they didn’t tell me the cost and I found out that my HMO through my job had a $2000 dollar a year cap. And I started getting bills for $700 a month and I still think I have an outstanding bill for however many thousands of dollars. A friend of mine happened to be the head of HR where I worked. She called the broker. She made some calls and I got on to Kaiser, even when I wasn’t supposed to be able to. So the only advice I was getting, from social workers was, “It looks like you’re gonna have to quit your job… then you’ll be on public benefits”…. I was 28 years old.
Alice: And these are the…negative messages that…are given to people with disabilities where yes, you can do anything. You know we have these laws, we have equal opportunity but yet you know what, when you get more disabled and you need supports and services, you have to be on Medicaid [which means you will have] limits to how much you can earn.
So how would any young person in their right mind have to choose between a life on Medicaid, which is, I mean, it’s a subsistence life….you’re on the margins basically. Or, like what you did, you cobbled together resources and you remained working…these are choices that no person should have to make.
On being considered disabled or severely disabled related to work
Alice: On paper to doctors… [based on] our diagnoses and stuff… we are considered severely disabled. And yet depending on the program or other things, just because you accomplish things and are working, somehow it makes you less disabled, which is often, I think, a real bias because people just conflate these things together. They assume that having a disability is an inability to contribute and participate in society and that those who do are some how not really disabled.
Ingrid: I think what’s really hard for anybody. The way I see it is that if you don’t have a disability, basically you are encouraged to always present yourself in terms of what you can do. That’s your identity, hopefully, if you have a healthy sense of self. The things that you can’t do are simply the things you haven’t learned how to do yet, or that you didn’t really care about in the first place. It feels like the message that a person with a disability…your identity is based on what you’re unable to do…It’s how well you can argue for not being able to do something…. fuck that. Who wants that?
On developing a disability identity
Ingrid: …for me accepting that disability identity in a way was hugely, unsually difficult because it felt like I was buying into a group mentality that I didn’t necessary feel was authentic to me. I can do it now at 48 ‘cuz I already have sense of how I am…but it was harder when I was 18.
Alice: Yeah, I mean, for me. I was definitely one of those, like, self-hating, you know, I really wanted to be assimilationist and trying to blend in with the crowd. And I definitely had my own biases toward other people with disabilities. I do think that, as we get older, the ideas of disability have expanded…So that when we do claim this identity, it’s far more nuanced…there’s more variation now, in terms of the disability. I think…within the last decade or two, there’s just been a huge, kinda, transition toward disability pride…that’s analogous to LGBT pride. What it’s really about is the cultural aspects versus the whole functional, you know, medical aspect.
Ingrid: It started to think crips as a type of being queer. You know we’re quips [queer crips] !!
Alice: You heard it first, readers, listeners. Trademark pending.
Ingrid: Queer crips. Quips! [LAUGH]
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.