Written by:
Kelly Huegel
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this Issue of Curve:
Vol. 12#2
ER’s Kerry Weaver aside, when was the last time you saw a lesbian with a disability represented in popular media? We all know that visibility can be a struggle for lesbians in general. Those of us who also have a chronic illness or a disability fight not only for acceptance, but sometimes even for acknowledgment. The sad fact of the matter is, in my own experience at least, that illnesses and disabilities are often more likely to be accepted by straight society than by our own lesbian community. Doesn’t it sound like it should be the other way around?
HEY, WE’RE OVER HERE!
Lesbians with chronic illnesses and disabilities share a desire to be recognized within our own community. As a group, we often feel the push-pull of not having our sexuality accepted by the larger society, and of not having our illnesses and disabilities accepted by the smaller lesbian community. For many of us, visibility among lesbians is a constant struggle, one that we face in addition to the battles of dealing with insurance companies, physicians and even our own health.
As Catherine Odette, creator and publisher of the newsletter Dykes, Disability, and Stuff, says: “Having a disability is just one more way that you’re an outsider. … Every so often, we’re dragged out to the front of the parade, but when the day is over, we disappear again. All we want is to be a part of some kind of community and to be able to count on that community.”
I know, you’re feeling uncomfortable because Odette’s comments fly in the face of traditional lesbian wisdom that says that we take care of our own. To an extent, dykes are great at lending a helping hand. Look at the tremendous success of groups like the Mautner Project for Lesbians with Cancer. Sure, there are resources out there for women with well-known illnesses like cancer, but if we have something that hasn’t captured media attention, we often face silence. The conversation can go something like this:
“Hi, Susie. How are you?”
“I’m hanging in there. I just got back from the doctor and she gave me something for pain, so that should help.”
“Oh, um, what is it that you have, again?”
“Crohn’s disease.”
Crickets chirping.
“Fiona?”
“Uh, sorry Susie. I, um. … Did you hear that they’re going to be re-running the Ellen special on HBO?”
Ann Van Soest has Arnold-Chiari malformation, a rare disorder in which the back of the skull has not formed properly. When Van Soest began to develop serious problems, she felt her support system fall away. “If you don’t have a disorder that’s recognized,” she says, “it’s very isolating.”
Van Soest, who lost a number of friends because of her illness, felt herself pulling away from the lesbian community. “I felt like, ‘If I can’t get recognition here, I’ll go elsewhere.’” Van Soest eventually found community in not one, but two support groups. She attends a support group for chronically ill lesbians and also works to make her Arnold-Chairi group more gay-friendly.
COMING OUT, AGAIN
For those of us whose physical limitations are not obvious, there is a second coming out when we tell new friends, acquaintances and lovers about our illnesses or disabilities. And don’t think that you healthy lesbians don’t sometimes intimidate the bejeezus out of us. Several women I spoke with have lost lovers and even friends after talking about their disability. As Odette puts it: “The lesbian community is tough.”
“Coming out in regards to having a disability is much more difficult than coming out as a lesbian,” says Jolene Ann Griffieth, who spends some of her spare time meeting and chatting with other lesbians online. “As soon as I add the words ‘womyn living with a disability,’ [I am often met with] silence.”
Those of us with invisible illnesses and disabilities often face disbelief from people who question whether there is “really” anything wrong with us. Lynn McIntyre is a survivor of a traumatic brain injury that left her with no sense of smell, no short-term memory and a propensity to become mentally exhausted — symptoms that have made it impossible for her to work. “I thought … our lesbian community would openly welcome … a smaller minority group within our community. Was I ever wrong,” she laments. “I am tired of others constantly judging me [for my inability to work]. … Don’t other lesbians and [society at large] realize that we are scrutinized by the government before we are approved for social-security disability?”
The inability to work is an issue faced by many people with illnesses and disabilities. Our society as a whole looks down upon people who can’t “pull their own weight.” In this world, at least, money buys power. It buys a voice. What, then, becomes of a group with relatively little money?
Compounding these issues is the fact that, according to a study published in the April 2001 edition of the American Journal of Public Health, lesbians and bisexual women are less likely to have health insurance coverage than our straight counterparts. So few companies offer domestic-partner benefits that those of us who are partnered often cannot join a spouse’s plan. Additionally, the high cost of health insurance is prohibitive to many of us who need access to the best plans.
Add to that the sheer exhaustion of having to deal with day-to-day issues of health and making ends meet and what is left is very little time or energy to fight for recognition.
DEALING WITH DOCTORS
Many physicians are homophobic. Doctor visits, with their inherent potential for stress, can be further complicated by the discomfort that comes from discussing personal matters with someone who does not “approve” of your orientation. This problem is exacerbated for those of us who must seek medical treatment on an ongoing basis.
Should lesbians attempt to bypass these problems by remaining closeted? A 1999 report by the Institute of Medicine on lesbian health found that 53 to 72 percent of lesbians do not come out to their doctors when they seek medical care. Kate O’Hanlan, a gynecologic oncologist who is a past president of the Gay and Lesbian Medical Association (GLMA), says these figures are unacceptable if we want to receive the highest quality care possible.
“Lesbians should be out to their doctors 100 percent of the time,” O’Hanlan says. “It’s always wonderful,” she muses, “when a patient slips in ‘and so-and-so, my domestic partner, said …’” Clearly, it’s possible to simply tell your physician straight out, so to speak, that you are a lesbian. “Patients have to remember that they are hiring us to provide them with culturally comfortable, competent health care. Doctors are patients’ employees,” O’Hanlan adds.
If you feel that your doctor is treating you differently because you are a lesbian, O’Hanlan advises: “Name it. Ask: ‘Is this a problem?’” Nowhere in the current medical guidelines are doctors forbidden to discriminate on the basis of sexual orientation. O’Hanlan advises patients who experience rudeness or otherwise unacceptable treatment from physicians to tell the physician, “I am not satisfied with how I am being treated and I am discontinuing care. Also, I do not expect to receive a bill for today.” (If you’re having trouble finding a lesbian-friendly doctor, use the doctor locator tool on the GLMA Web site at www.glma.org.)
SO … NOW WHAT?
Where does this leave lesbians with chronic illnesses and disabilities? To a large extent, that’s up to you. You see, I believe that our community can come through. I hope that having read this, you will be outraged, that you will take up our flag and shout: “All lesbians are equally valuable within this community!” Or something like that.
As women living with chronic illnesses and disabilities, we spend a large part of our days fighting the medical community, battling insurance companies, and demanding equal access. We’re counting on you, our friends and partners, our families of choice, for support. Odette puts it well when she says, “As a [lesbian] … I have faith in this thing we call community. … I believe our words can and will reach the hearts of those who are in the power position to make permanent change.”
All of us who lent our voices to this article love and embrace the lesbian community. The only thing we ask is to be loved and embraced right back.
QUICK FACTS
>> Crohn’s disease, a chronic inflammation of the digestive system, affects up to 1 million American women annually.
>> Addison’s disease affects one in 200,000 women, and causes hormonal problems that can result in weight loss, muscle weakness, fatigue and low blood pressure.
>> Rheumatoid arthritis is a chronic inflammatory illness that disables about 8 percent of women in the United States. Symptoms include joint swelling, joint tenderness, stiffness and pain.
>> Fibromyalgia affects roughly 8 percent of American women. Symptoms include widespread musculoskeletal pain, fatigue, sleep disturbances, morning stiffness, irritable bowel syndrome and extreme anxiety.
ALL-ACCESS PASS/FAIL
Unfortunately, many of us feel that we are not supposed to quibble over “tiny” issues like the fact that many events in the lesbian community are off-limits to us. “How does that happen?” you may ask. To learn more, take the test below — and see how well you understand the issues.
Question: It is that time of year again — a women’s music festival has come to town. Organizers have created handicapped access in the form of wheelchair ramps and have provided ASL interpreters for deaf patrons. The price of admission is $50 for adults, and children get in free. No animals are permitted. Food must be purchased on the grounds. What’s wrong with this picture?
Answer: First, not every disabled person uses a wheelchair. Though this type of access is appreciated, it does not constitute full access. Several of you will have spotted the “no animals permitted” and will have exclaimed, “Ah-ha! Guide dogs!” Good for you, but that’s not all. Many disabled people rely on helpers — people whose sole purpose is to assist them, and without whom they are not fully mobile. So, on top of the $50 entry fee, a disabled woman must pay an additional $50 for her helper, who, by the way, doesn’t give a rat’s tookas about women’s music. Add to that the fact that many disabled and chronically ill people are on social security, disability, or otherwise have limited incomes, and that spells trouble.
But wait — there’s more. The festival prohibits attendees from bringing their own food. The upshot? People like me, who have to follow special diets, will have to subsist on overpriced spring water for the day.
If you found only one thing wrong with that scenario, unfortunately, you’re not alone. If you found at least three things wrong, you’re reasonably enlightened. If you found everything, I’d love to meet you and find out if you’re single.
Seriously, though, few people can identify all the problems with the above scenario, and that’s understandable. It’s not OK, but it’s understandable. After all, many lesbians with chronic illnesses and disabilities, even those in wheelchairs or who rely on guide dogs for support, are practically invisible to most people.
RELATED WEB SITES
GimpGirl.com: http://www.gimpgirl.com
QueerLadies: http://www.gimpgirl.com/lists/queerladies
Gay, Lesbian, Bisexual, and Transgendered Disabled Veterans of America: http://www.webring.org/cgi-bin/webring?ring=glbtveterans;list
GayHealth.com: http://www.gayhealth.com
Dykes, Disability, and Stuff: http://tps.studentorg.wisc.edu/MGLRC/Groups/DykesDisabilitiesStuff.html |
