Achieving Meaningful Leadership Against Oppression

Last week, as part of a week-long focus by National Public Radio on disability issues, I had the chance to speak to almost two million people about my work on genetics, reproductive health, and disability issues. This was a privilege, a boon to my work, and also a boost to my own re-emergence.

A friend of mine produced the series of four hour-long radio shows on key disability issues: civil rights, charity and fundraising, employment, and genetic screening. She interviewed me for the show on genetics, my big issue for the past ten years. In the interview I spoke personally and passionately about the impact on my own life of oppressive attitudes around genetic disability and about my own and my community's challenges to the ways the new genetic technologies are informed by those oppressive assumptions. These four radio programs were broadcast all over the U.S. On top of that, I got an impromptu call last Monday from "Talk of the Nation," requesting my presence as one of two guests to be interviewed the next day by Ray Suarez. The live call-in show was quite challenging! You can't know what issues will be raised by the callers, and there's pressure to answer in "sound-bites," with lots of interruptions. Fortunately, Ray Suarez was well-informed; my co-host, a clinical physician geneticist, was wonderful; we worked as a team; and the callers' questions were concise and pertinent.

Over the next few days I got dozens of calls and e-mails from friends, Co-Counselors, and relatives who'd caught me speaking on the radio by accident. This was fun, overwhelming, and validating of all the hard work I've been doing. It is difficult to predict what kind of impact this visibility will have for the disability community. The producer of the show expects a ripple effect in print and other media. (Copies of these shows can be obtained by contacting National Public Radio by phone or Internet and requesting the "Disability History Project: Beyond Affliction.")

Of course when I listened to a tape of my show afterwards I got to feel all the feelings of nervousness and the regret that I hadn't made all the right points, but mostly I felt amazed that my life's work had received this level of visibility! Now, a week later, I have received an unprecedented number of invitations to participate in or write for various projects or journals.

A few years ago I couldn't have imagined that my work would receive this level of attention. My views on genetic testing, particularly prenatal diagnosis and selective abortion, are somewhat unpopular and confusing to the general public, which tends to assume that babies with disabilities are better off not being born, so it's best to use tests to detect them and then abort. As a person with a genetic disability and as a representative of a community of people with genetic and other kinds of disabilities, I speak out to challenge these assumptions and work to engage medical providers, scientists, parents, feminists, and disability community members in dialogue (and get them to discharge whenever I can!) about the complex medical, ethical, and reproductive rights issues. These issues are very personal for me. Having been born with a genetic disability, spina bifida, I, along with so many others, was early on given the message that my birth was "a mistake." The birth memory I have worked on in Co-Counseling sessions is of the doctors' alarm at the discovery of the opening on my spine and hearing the confused and negatives message told to my parents - that I would be a burden, that I should be "put away." Many parents in all parts of the world are still being given these messages about babies with disabilities, and now it is happening even before birth, earlier and earlier in pregnancy.

This past week I told 1.7 million listeners that these and other messages have deeply hurt and oppressed people with disabilities. Wow! How to feel this! I've gone back to earlier points in my life and told my little-girl self that the terrible feelings she was internalizing would finally be validated and recognized as oppressive.

I must discharge often about despair, because we all have a load of it and social changers must keep afloat, but also because the oppression is so hard and this issue, in particular, seems to me to be very discouraging in objective reality. Most people have little clue that their basic assumptions about disability, in particular when they are operating in the restimulating contexts of birth and abortion, are confused. I have told my confidants that I didn't expect to see any shift towards the upward trend in this arena in my own lifetime. I am trying to notice that the radio shows are a pretty good challenge to that despair!

I would like to offer an insight that came to me in one of my recent sessions on despair. We all seek "meaning" in our lives, our work, our art, and our close relationships. For many people, occasional feelings of pointlessness surface: "What's the use? Who cares?" In my session I saw that the search for meaning is about connection. When something "means" something, it is part of a greater whole, it is connected. I know from my courses in philosophy and semantics that there are hundreds of books and theories about "meaning." From an RC vantage point, I'm suggesting that the "search for meaning" is a quest to break the chronic isolation patterns imposed by early abuse and unmet needs, and a desire to realize that everything is connected. I am alerted now, when the "pointlessness" feelings surface, that I am seeking a session and connection is the contradiction!

I feel very grateful to live in a time when having a disability is being transformed into a meaningful experience. People want to connect with and learn from us folks with disabilities. They want us to speak for ourselves on national radio! I feel lucky that I have the skills and connections to talk to the nation. This is a lot because of RC.

Marsha Saxton
El Cerrito, California, USA

Last modified: 2022-12-25 10:17:04+00