No Guts, Not Glory: Where Are the Feminists on Terri Shiavo?
Once upon a time, I believed being a feminist meant never having to say, “I agree with Randall Terry.”
As a woman with a disability and a progressive, I have never felt so alone as I have this week following the mainstream media’s portrayal of the so-called right-to-die case in Florida.[Editor’s note: Terri Schiavo is the disabled Florida woman whose husband is petitioning the court to remove her feeding tube.] The facts of the case you will not have read are these: there is no medical consensus that Terri Schiavo is in a vegetative state; she is not terminally ill; and the extent of her “life support” is a feeding tube she uses for food and water. The husband who wants to remove the feeding tube has a financial motive for seeking her death, has withheld rehabilitative treatment and basic medical care for his wife since she entered the hospital 13 years ago, and is eager to marry the mother of his new child in a Catholic church. Perhaps most frightening in its absence is evidence raising the specter of past domestic violence. I learned this information from disability rights’ media sources. During a week of e-mails from otherwise progressive women’s rights organizations about the assault on abortion rights, I have heard nothing about this ongoing assault on the life of a woman who is severely disabled. Not terminal, dying, or on her deathbed. Disabled. I understand the critical difference between dying and disability. Many others do not.
For some reason, women who ordinarily approach the news with a skeptical eye-sometimes even a jaundiced eye-have accepted the opinion of the mainstream media without even wondering whether they are getting a biased story. The New York Times editorial page, slammed by conservatives as too liberal, ran an editorial on October 22 calling for Schiavo’s right to be starved to death in the name of bodily integrity. I’m sitting here, waiting, waiting…waiting for a word from NOW or any women’s organization, to come join me in questioning how bodily integrity is being defined, and by whom. I haven’t heard from any nondisabled women who call themselves progressive. This isolation leaves me in an ideological pickle, a pickle with a face that looks like anti-abortion activist Randall Terry who opposes taking out the feeding tubes. I don’t enjoy linking arms with Randall Terry but that’s politics. I’ll get over it. Since I can do that, I am officially asking women who generally “get it” to get over their tizzy about what-if-it-happened-to-me.
Start listening to women and men with disabilities. Notice that 14 disability rights organizations signed briefs in support of Schiavo. Show some respect to the activists with disabilities who did what I shrink from: Hang out with the religious right if it meant saving the life of a woman with a disability.
I suspect most women, however enlightened, do not accept that Terri Schiavo is a woman. Not really. Her medical condition too easily eclipses her humanity. I can certainly understand (and share) the deep emotions and fears this case raises. What I cannot understand is the silence. The unwillingness of nondisabled women to try to see beyond their own narrow perspective on what constitutes a “meaningful life.” So much for that cornerstone of the women’s movement, prizing the voice of the person with the experience. Don’t ask me, a woman who’s been disabled all of her life. By all means, ask a doctor.
I’m waiting to hear from long-time feminists who told male doctors that radical mastectomies weren’t the answer to every lump, that hysterectomies weren’t the cure for the common cold; who told male police officers that no means no, even when it isn’t spelled out in a contract.
I’m waiting to find out to know why they’re so quiet now, the women who kept hammering the message that women’s lives are valuable even when they aren’t gestating a child, pleasing a man, or wrapped in skin of a certain color. Is it because you see Schiavo less as a woman and more as a disability?
I’ve heard women I respect recently discuss why the women’s movement has lost so much support, and is so dismissed by the women and girls who have benefited from the gains it achieved. There were theories and strategies for engaging younger women and reestablishing connections with other generations. After watching the collective failure of the women’s movement to respond this week to the Schiavo case, I have a new theory. The women’s movement has no guts. Literally. I haven’t heard a message from any women’s rights organization lately that in any way equals the instinctive twist in the gut that comes with learning about Terry Schiavo. That twist in the gut should be a call to action.
In my opinion, the women’s movement doesn’t know how to be revolutionary anymore. Even worse, they are ignoring the connection between stigma, silence and oppression. Where once it taught us to say “vagina,” now it gets stuck on “poop.” Women who understand the political importance of talking openly about menstruation start looking at the floor when incontinence comes up. Women who comfortably disclose their race, age, and sexual orientation at work hide their psychiatric medication. Women who understand all other forms of diversity roll their eyes when other women ask them to not wear perfume.
Disability rights issues could redefine the women’s movement. If the women’s movement avoids the Schiavo case, it will be choosing not to grapple with the issues that will be facing more and more women in the coming years. They are issues of dependence and control, the classics of the women’s movement that, unfortunately, never go out of style. The issues in the Schiavo case are the headlights of the car speeding right at every older woman, every chronically ill woman, every woman with a disability in this country. You don’t have to tell me it’s scary as hell to be standing in the middle of that dark road.
What gets to the point faster than hearing a woman with a disability say, “Incontinence is not all incongruous with my having a dignified, meaningful life”? Is it possible not to respond, even if all you do is mutter, “Oh my god, I can’t believe she just said that”? Just try to find a more daring example of self-worth than a woman telling the world she deserves what the dainty call “help with personal hygiene.” Women don’t have to agree on everything-women with disabilities certainly don’t. But what the women’s movement would gain from embracing disability rights is a vanguard. It would have a new source of leadership.
The women’s movement needs a needle-sharp point; the point would prick some but it would also pierce the complacency that is the real enemy of change. It would point the way out of the apathetic bog that characterizes current attitudes about women. The mainstream women’s movement needs women with disabilities to hone their blunted edge.
The battles are huge. They include access to affordable healthcare, long-term community-based care and living wages for the workers (a largely female population) who provide personal assistance. We will be fighting the nursing-home industry, big pharma, HMOs, and corporations that pollute the environment. We will be up against the same old bullies like abusive families, autocratic doctors and discriminatory employers. We may not have traditional allies such as the ACLU and we may have unexpected allies in the religious right. Will that stop the women’s movement? No! Because the women’s movement will know that its own progress is doomed if it fails to include women with disabilities. If it sacrifices Terri Schiavo because being her ally is, regretfully, beyond their scope at this time.
Each wave of the women’s movement has asked the impossible, and in so doing, galvanized huge numbers of women. Speaking the unspeakable, asking for the moon, these are what the women’s movement did once upon a time. They did it because women’s lives were at stake. Women’s lives are still at stake. Terri Schiavo is a woman, remember? That’s all that matters. If denying equal protection under the law to women with disabilities through right to die laws isn’t “violence against women,” just what is?
Copyright Off Our Backs, Inc. Jan/Feb 2004
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