Friday, March 31, 2006

Speaking of entitlement,

I just read the Dear Prudence column in Thursday's (yesterday) Slate. Usually I don't have a problem with the responses because the original Prudence was typically right on target. However, this new Prudence I'm not sure gets it and the very first bit of *advice* proves it.

Dear Prudence,

For the past few years, I've been dating a man in a significantly different socioeconomic class from mine. Between the two of us, this isn't much of a problem because his wealthy parents raised him with humility and social awareness, but among some of his friends, I often feel horrified by their entitled attitudes. They complain about having three weeks in Italy this summer and how boring that will get. They turn to me and ask which is my favorite thing about France, the city or the countryside? When I politely remind them of my status, which includes having been really hungry with nothing to fall back on, never having traveled to Europe, and paying for my own education, they say, "Oh, how lovely to have had that experience! You should write a novel about it!" How can a poor person politely explain to a wealthy one that their bourgeois dilemmas are hurtful to hear about, and that having one's painful experiences ironically aestheticized is no favor?

—Ex-Redneck Grad Student
This all seems reasonable to me as many of us have had the distinct pleasure of being around people like what Ex-Redneck mentions. You know the kind; as soon as you tell them you drive an '89 Ford Taurus, they ho-hum for a bit before excusing themselves.

Now for Dear Prudie's answer:

Dear Ex,

Maybe you've been watching too much Masterpiece Theatre—these people aren't viscounts and duchesses and you're not the scullery maid, they just grew up with more money than you. You made it out from poverty and are putting yourself through graduate school, where you can flaunt your vocabulary—"ironically aestheticized" indeed. Yes, it is obnoxious to assume everyone's traveled to France. But in response to your self-pitying tale, suggesting you write a novel was certainly more polite than pointing out that the chip on your shoulder is the size of the Appalachians. Spending the evening referring to your financial status makes you a bore—and that's true whether you're rich or poor. If you can't find more congenial topics to discuss when you're with these people, at least you can have some laughs with your boyfriend later about their cruel fate at having to spend three weeks in Italy.

I'm wondering where exactly the big chip on Ex-Redneck's shoulder lies, aren't you? I also don't recall her saying she has spent entire nights discussing her financial status with "those people". For the record, I would not find someone telling me "Oh, how lovely to have had that experience! You should write a novel about it!" as polite so much that I would find it patronizing and condescending being as they just whined about spending 3 boring weeks in Italy.

Prudie contends that because Ex-Redneck has a large vocabulary, she should be able to fit right in. Um, the last time I checked, the use of $10 words did not guarantee an individual's inclusion into the elite societies of the rich or that they would feel comfortable when there. When one considers that some young'uns lack the ability to use such words, being rich does not automatically mean smarter, especially if you were born into money instead of making it for yourself. Being rich generally means entitlement because people will suck up to you, hence the reason for Ex-Rednecks claim I think.

So, I am left thinking this new Prudie is experiencing her own sense of entitlement and, perhaps, Ex-Redneck's comment hit a nerve, yes? Prudie's response does seem to take on that lovely tone of defensiveness, which is usually a knee-jerk reaction when someone's called another out.
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Friday Random Ten: "I didn't realize just how eclectic my musical tastes were 'til I got this GoGear" Edition

Seriously, I'm not joking. NASCAR Nut jokes that I'm the kind of person who needs 3 10disk changers in my trunk with 2 12" speakers and a very powerful amp.

Huh, he just might be on to something there....

1. Dixie Chicks Top of the World
2. Kid Rock Trucker Anthem
3. Brandy Who Am I
4. Celtic Woman CD The Butterfly
5. Martina McBride Where Would you Be
6. Disturbed Stricken
7. Bette Midler Night and Day (Nora Jones also does an excellent cover of this song.)
8. Dixie Chicks Ready to Run
9. Michelle Branch Something to Sleep to
10. Joss Stone The Chokin' Kind

I downloaded some Michael Jackson songs Wednesday night, namely the 2 used in Free Willy, which Peanut thoroughly enjoyed. He loves those movies.

Now be sure to check out the video below of Peanut playing with 2 huskies. Yes, that is me laughing in the background but hey, it was hilarious! (It actually went on for about 10 minutes but digital cameras won't record for that long.)

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Thursday, March 30, 2006

So much for that happening ending

I just finished reading The Handmaid's Tale and seriously, what a shitty ending. Or should I say what a shitty way to not end a story. Because it doesn't actually end. This could be attributed to Margaret Atwood's tendancy towards dramatic drawn out writing. I tried reading Alias Grace once and it seemed so pushed I only got halfway through and stopped.

So I'm on to Jane now; it's so entirely engaging that I'm on the 2nd chapter. I was going to read Saturday's Child, but Jane seems so much more poignant given our current political climate, so it'll just have to wait.

(When I looked for this link just now, SC was grouped with Jane Fonda's book My Life So Far. I believe this would be an insult to Robin Morgan and other women of the early feminist movement in that Fonda hasn't done jack shit for women. Like ever.)

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Wednesday, March 29, 2006

links on Afghan women

(Update: Due to a recent anonymous commenter, this is going back to the top so 1) I can find it easier and 2) so can s/he.)

Everyone needs to take these links I am about to provide and put them in a post on your own blog. The more links, the more their message gets out.

First, the Afghan Women's Mission

Then RAWA: Revolutionary Association of the Women of Afghanistan

Next up it's Awakened Woman e-magazine because there are some informative articles here about women from India, Afghanistan, Pakistan, Iran, Iraq, etc.

And finally, the site that seems to encompass it all, TvNewsLIES.

So check them all out, read up on stuff you thought you already knew but, like me, didn't, and spread the information out to everyone else!
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To switch gears a little now....

I have started a series on Feminist Disability Theory, disability access and the lack thereof, the danger of words, etc. It will consist of daily installments and I anticipate it ending next Wednesday, March 29th.

I feel it's something hardly discussed in the blogosphere and needs to be addressed.

The first 2 installment's are below, with several others to follow.
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Part VII: Wrap up and Accessibility

There was a commercial I saw once, in French, which showed what the world might look like if everything were set up for persons using a wheelchair. Non-wheelchair using peeps had to bend down further to drink from a water fountain, doors were wide enough, accessible bathrooms abound, sidewalks made sense in that they weren't cobbled or bricked, and so on. It was a welcome change especially when you realize it is all those simple things we take for granted everyday that are almost inaccessible to those with mobility issues.

Take curb cutouts for example. It took the ADA making cities comply for them to become commonplace. Of course, they don't do much good when it's only on one side of the curb but perhaps cities/counties are waiting for something. Of what I have no idea, perhaps another law that tells them to get the lead out of their ass.

Just recently, a US District Judge decided that Richmond City had until 2007 to make all their public schools accessible for children and adults with disabilities. Former Governor, now Mayor, Wilder said, "We're going to appeal." (I tell you what, he may have been our first black Governor, but I'm realizing now, since I'm older, Wilder burns tons of bridges and possibly kicks too much ass.)

Before that, the US District Court also agreed with the Virginia Public School Administration that parents have to supply proof that a particular school is not meeting the needs of their child with disabilities, such as in the case of IEP's and such. While I understand the premise of such a ruling, they failed to take into account that it's already like this. Why else would the above accessibility lawsuit need to be filed if it weren't the parents who had to prove the policy sucked to begin with? (I can't find the actual article(s) that say various School Administration's appealed and won but I know it's on my site and Flea's somewhere. This will have to do.)

Ever get irritated in a department store when both you and your cart can't fit through the aisles? Or when the clothes are so close together, you end up pulling some clothes off as you squeeze by?

Ever wonder why you hardly see anyone in those stores using a wheelchair, cane and/or walker?

I remember a classmate making this statement once: "I had a hard time getting up the ramp into the Commons because it was iced over."

Calmly I replied, "Now, think about the difficulty you had and imagine someone with a disability who uses a wheelchair not being able to get up at all."

Why are accessible ramps so steep anyway? Whether someone is pushing or the person is pushing themselves, it takes a lot of muscle strength that an individual may or may not have. Just think of pushing a stroller, complete with baby, up one of those ramps. It’s tough huh?

I could go on and on about accessibility, but I'm not. Instead, I'm going to link the series here so they'll all be in one spot for us and move on. Thanks for listening!

Part I: The Heirarchy of Insults
Part II: What to say, What to say....
Part III: Beware the Retarding Environment
Part IV: To have sex or not to have sex, that is the question
Part V: Feminist Disability Theory
Part VI: Forced Sterilization of Women with(a) Disability(ies)

Update: I've been mentioned in not so charming of circumstances, but please note that I am very open to both criticism and critique if it's done honestly and tastefully, instead of simply admonishing me because I'm "normal".
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Tuesday, March 28, 2006

Part VI: Forced Sterilization of Women with (a) Disability(ies)

This is the paper I presented to the professor (and class) of my Women's Studies Sr. Seminar and in doing so, ended up defending it before I had gotten started.

The professor disagreed with my statement that every single one of us lives on a Disability Continuum. I used some "we's" and "us's", "they's" and "them's" when appropriate and she thought that wasn't right or inclusive of me to do.

I asked her how can we, as feminist learners, call ourselves inclusive if we're constantly saying "they" and "them" especially when referring to disability?

She made a few good points, in that I don't have a disability (that I know of) so by me using "us", I eclipse the experiences of women who live with a disability everyday. She likened it to those who try to use "we" when referring to the Developing World or our current poverty issues, but I insisted disability was different because it crossed class, race, religion, gender, sexual orientation boundaries all the time. Not one group, or community, is exempt from the risks of giving birth to a child with a disability. And that it only takes walking off a curb to tear your Achilles tendon, which has the potential to leave you using a can and eventually a wheelchair for the rest of your life.

I can't spontaneously turn black, Asian or Mexican, but I can get into a car accident on the way home and possibly sustain a spinal cord or brain injury, resulting in my needing care for the rest of my life.

Or I could be Terry Schiavo, whose brain aneurysm burst when she was still in her early 20's, leaving her brain dead and in a persistent vegetative state.

My point was, and still is, at any point in our life we can become "the disabled".

To my own defense, I think I make a pretty compelling argument for my use of "we" and "us". Hopefully you'll agree.

(Note: I only briefly read over this, so if there are any typo's or weird phrasings, I apologize now and ask that you please let me know so I can fix them!)

Violence against women with disabilities in developing countries: An attack on their reproductive rights

I have decided to use “we” instead of “they” as, in the midst of conducting my research, I came across a woman named Alessandra Iantaffi. While in England to gather tales of women with disabilities in higher education, she expressed her own reservations in writing about a topic she did not consider herself part of. She was worried about colonizing, or even diminishing, the experiences of those women she spoke with. One of her interviewees calmed her misgivings by saying, "If you keep saying me and them, you subscribe to that division between 'us, academics, able people on our side of the world,' and 'them, disabled, unable, different.' I think you can say us. You should say us. You are not that different really."

Susan Wendell, in her book The Rejected Body, laments on her own problems with wording and how to address the people she talks about throughout her book. She did not like "I" as it seemed to personalize the extent of others experience and "we" seemed too general as it put all women with disabilities into one category of experience. Wendell also knew that using “they” was out of the question in that it separated women with disabilities from women without disabilities, thus creating the further divide of "otherness." She was worried that another woman with a disability would read her book and become angry or rejected because Wendell was referring to all women with disabilities as having the same experiences. Her solution was to use all three in the contexts where it was justified, “attempting to create a balance in tone while trying to avoid the appropriation of 'I,' the presumption of 'we,' and the distancing of 'they (7).'"

While I understand that my first world able-bodied experiences are truly different than that of women with disabilities in developing countries, I am hopeful that by including us all into a general "we," a sort of unification amongst feminisms can be obtained. The separatist language of “they” and "them" has created the divide to begin with and I would like to try and bridge that gap within the following paragraphs of this paper. I believe that we all live our lives on a disability continuum as disability knows no boundary of race, class or gender; it affects everyone and anyone regardless of where we come from. It is also with only the identity of disability that I believe women can truly be united to represent a society that attempts to keep all women as ‘other’ regardless of our varying abilities.

Person First language
The introduction of person-first language must be made to the unaware reader before they can begin understanding the lives of persons with disabilities regardless of their geographic location. This is not necessarily forcing political correctness as much as it is forcing acknowledgement of the person attached to the disability whether it be invisible or not.

A term most often used when referring to someone with a physical disability is "suffering," or "suffers from" which is commonly used in conjunction with whatever it is we have been "afflicted" with. As once was told a newspaper reporter, we suffer from gunshot wounds, not our disability. A person’s disability is a way of life; an integral part of their identity. What anyone with a visible physical disability suffers from is the judgment and status of other.

Another commonly used moniker is the phrase "confined to a wheelchair." The definition of confinement is, "The act of restricting or the state of being restricted in movement." Indeed a wheelchair allows its user the exact opposite opportunity as it enables the person who is disabled to get around more freely. Wheelchairs help to include those children and adults who could not take part in the world outside of their houses otherwise.

The word "retarded" has been indoctrinated into the English language much like the current use of the term "gay." Both of these words had original meanings that were not offensive as retarded once meant "to cause to move or proceed slowly; delay or impede; to be delayed or in music, a slackening of tempo." Now it means someone stupid or mentally lagging behind others. We use this term to tell someone their outfit or actions are "retarded" or when we need to express that an opinion or idea is stupid. My own personal history with this word ended when I began to work for a non-profit organization that works with kids in the community that have varying degrees of Mental Retardation. [1] My co-workers would hit me every time I said the word or so much as began its first syllable; a person can get something out of their system quickly when under that kind of pressure. [2]

Having said the above, one must also keep in mind that when referring to people with disabilities, the person/gender should be used followed by the disability. Instead of saying, "The disabled woman," the order should be, "The woman with a disability." This recognizes the woman first and then her disability, giving a greater humanist approach to her well-being. Doctor’s are constantly forgetting this very basic modus operandi, especially when dealing with women, and have to be reminded often that a woman is attached to the ailment that they are dissecting. As the voices of society, we must encourage first-person speak of all peoples as we are humans first; the remaining identities are secondary and/or run parallel.

Feminist Disability Theory
Feminist Disability Theory is meant to introduce the ability/disability paradigm as a category of analysis within the larger feminist movement. It is not meant to create a separate feminism, but instead expand the one that currently exists to include the privilege of normalcy and/or medicalization of the body. Rosemarie Thomson begins by stating that without the female body to define the male body, the taxonomies of bodily value in society would collapse. Since the beginning of time, the female body has been described as the male body inside-out or broken and disfigured. Women have been blamed for all that is wrong with society because we are the disabled half. Thomson furthers this by saying, "This persistent intertwining of disability with femaleness in Western discourse provided a starting point for exploring the relationship of social identity to the body."

Aristotle once defined the female body as "disabled," and “disfigured” using this as a reason why women could not be equal to men. He concluded that because women were closer to nature, they could not inhabit both the form and soul he believed to be true to human form. He believed the male body to be the true form which is further allowed to assert privilege and normalcy. This accepted logic has allowed within discussions of race, class, gender and abilities to justify male, white, or able-bodied as natural and ‘normal’ while black, female or disabled become the different and unnatural intersection.

Many believe there is a need for a separate feminist movement for women with disabilities because able-bodied people tend to overlook those with differing abilities and the specific needs of those persons, especially women and children. Just as the issue of color is often ignored, so are the various abilities that permeate the identities of women throughout the world within a larger, mostly western-based ideology of feminism: "Because disability is defined not as a set of observable, predictable traits – like racialized or gendered features – but rather as any departure from an unstated physical and functional norm, disability highlights individual differences (Thomson)."

To give credit where due, many attempt to encompass all groups with the single word 'feminisms,' a sweeping statement, because of the growing diversity within the original movement. No longer is it only about suffrage yet Western feminists tend to focus mainly on the intersections of gender and class first, with race a close third, often leaving out rhetoric for disability theory. In order to focus on disability theory, one must go beyond the confines of gender or race and branch into a much larger spectrum where the main social power is held by those that are seemingly 'normal.' The feminist movement as a whole has tried to deconstruct the materiality of bodies, especially those belonging to women, but have yet to begin rewriting the category of woman in order to include disability.

This act of exclusion includes the pro-choice agenda within the larger feminist movement as well. Often able-bodied women become so focused on a woman’s ability to choose whether or not to have a child while a woman with a disability may long to be seen as a sexual being or desire the chance to be a mother. Many women with mental and physical disabilities are being forcibly sterilized or, when they become pregnant, forced to have abortions. This is seen more so in developing countries as the stigma of disability is greater because the idea of a perfect woman is one who can produce as many children as her husband deems necessary.

According to international law, as well as the radical feminist thought, women have the right to control and decide freely what happens to their bodies, including sexual and reproductive health, without experiencing coercion, discrimination or violence. Yet the opposite is almost always true. Women with a mental or physical disability are often uneducated about their sexuality or reproductive health under the assumption they are nonsexual beings and will never be. An opposite reaction is one where women with a mental or physical disability are sterilized so that if/when raped they cannot become pregnant and is usually done without their knowledge or consent. This is most often a choice made by the parents when the women reach the age when menstruation begins.

In some progressive Hungarian hospitals, women were unknowingly given contraceptives even when allowed to engage in sexual activity. Also in those hospitals, some doctors would purposefully over-medicate a pregnant woman so they could claim the woman must have an abortion because the high levels of the drugs could harm the fetus. Both of these examples also allow doctors or other staff members to sexually assault and/or rape these women and get away with it.

Integrating disability studies into feminist theory only proves to widen the scope of "collective inquiries, question[ing] our assumptions, and contribut[ing] to feminism’s intersectionality (Thomson)." Disability theory is meant to transform the overreaching definition of feminism to include the conceptuality of bodily influences and how differing abilities intersect with race, gender and sexuality to further enhance the dialogue within feminist discourse.

The larger mainstream feminist movement introduced the issues of body politics with second-wave feminists such as Kate Millet and Jean Kilbourne, but disability theory would like to take the rhetoric that often surrounds this issue one step further. As Garland-Thomson writes, "Briefly put, feminism’s often conflicting and always complex aims of politicizing the materiality of bodies and rewriting the category of woman combine exactly the methods that should be used to examine disability."
Again, this would also mean including women with disabilities into the motherhood debate: should they or should they not be mothers and do they ultimately have that right? Do they have the right to sexuality education programs and should they be included in family planning discourse? Amazingly, these questions still need to be asked in the 21st Century and not just in the United States but throughout the world as well. The stereotype of a person with a disability as incapacitated somehow still permeates the mainstream ideology no matter what country we talk about, except perhaps Sweden and Canada.

Women with Disabilities in Developing Countries
A National Forum on Women and Children with Disabilities was held in Ghana in October 2001. The group leading the forum was called the Ghana Federation of the Disabled and approximately 44 people from various organizations came together to address the issues in the lack of care and general societal acceptance of women and children with disabilities in Ghana. At that meeting, a young man named Nicholas told his story before the attendees and it was quickly realized that life for a woman or child with a disability in Ghana is equated to "disability apartheid." Young girls and women are often not educated, kept hidden in their houses, not informed about their coming-of age into womanhood and discriminated against since they are unable to perform their most basic function of motherhood.

The purpose of the forum in Ghana was to identify major problems for women and children with disabilities. Of the many listed, the lack of information on health, sexuality and sex, education were included. What they listed as the number one barrier to this information was the attitudes held by the communities the women and/or children were living in. Many villages, cities and tribes remain superstitious about disability in children and women. If a woman was disabled or disfigured in any way, she was not marriage material and perhaps the stigma that surrounds disability will lead others to believe the woman will not be able to have kids, though her uterus and reproductive faculties may be functioning and undamaged.

The lack of governmental support for persons with a disability in Ghana only helps to enforce the stereotype that those living with a disability there are useless. It took years of fighting in the United States to finally get the Americans with Disabilities Act passed in 1997 and yet we still have to further the awareness of others daily. The Ghana Federation of the Disabled realized this as did the people who attended their forum. They agreed that by providing the opportunity for an education about sexual reproductive issues and sexuality, the rates of forced sterilization and abortion of women with a disability should steadily decrease as women become aware of their rights.

In other countries, such as Armenia, women have been declined treatment during the process of giving birth because of their disability, resulting in the death of the child. Women with both a mental or physical disability continue to be forcibly sterilized; doctor’s citing the need to advance the nation’s best by getting rid of societal inferiors. In Sweden, "between 1935 and 1976, doctors forcibly sterilized approximately 62,000 'genetically inferior' people, 95% of whom were women with mental disabilities (Raye, 11)." Several nations have yet to outlaw forced sterilization as they believe it may be necessary at some point in the woman’s life especially if she has any type of disability. Canada repealed its Sexual Sterilization Act in 1972; the United States has not officially outlawed it although several states have adopted their own.

By March 2000, according to the Center for Reproductive Rights (CRR), 300 million women (roughly 10% of the world’s population) around the world had mental and physical disabilities. Interestingly, women around the globe make up three-quarters of the people with disabilities in low or middle income countries and roughly 70% of these women live in rural areas where access to resources can be scarce. Women with disabilities represent a large group, yet the reproductive freedoms granted women without disabilities is not seen as being a relative freedom. The CRR defines fundamental freedoms pertaining to reproductive rights as:
"the right to equality and non-discrimination; the right to marry and found a family; the right to comprehensive reproductive health care including family planning and maternal health services, education and information; the right to give informed consent to all medical procedures including sterilization and abortion; and the right to be free from sexual abuse and exploitation (1)."

The International Consensus Documents, in Principle 5.5, state that women with disabilities should not be denied the experience of motherhood and that states should set up appropriate counseling for persons with disabilities to encourage this. International human rights law also stipulates that states can neither inhibit persons with disabilities from marrying nor allow marriages to take place without both spouse’ consent (CRR, 4).

In China, their Protection of Maternal and Child Health law demands that any woman with a disability be examined by a physician beforehand in order to determine the severity of her disability. If it is determined she has a "serious genetic disease," the couple can only marry only after adopting long-term contraception or the woman undergoes tubal ligation. In Cambodia, the act on Marriage and Family accepted in 1989 mandates that any woman with a mental disability cannot marry. And a woman who gives birth while institutionalized in Uruguay faces the permanent loss of her rights if no family member can be found who will take care of the child. To regain custody, she must be released from the institution within one year or the records will be burned and her rights forever lost.

In a national survey taken by the U.S., only 19% of the physically disabled women who responded felt that they had been given adequate sexual information (NSWPD). Women who had mobility issues said they were rarely offered information about contraceptive methods or information about their sexuality, India and several countries in Africa being some. Women are not given any information on their sexuality or sexual reproductive rights because they are considered to have no marriage prospects.

The term "woman" is often used in a way that defines us only as able-bodied women and succeeds in making all women with disabilities invisible, similar to the universal use of "man" to mean both women and men which makes the woman invisible. When making or suggesting laws that should be [3] adopted by countries, many organizations have made the distinction between all women including women with disabilities or in their wording, they seem to imply that all women are truly included under the new legislation.

The Treaty for the Rights of Women mentions specifically that all women have the right to equal treatment of men and that discrimination against women is any "distinction, exclusion, or restriction made on the basis of sex, which has the effect or purpose of impairing or nullifying the recognition, enjoyment, or exercise by women, irrespective of marital status, on the basis of equality between men and women, of human rights or fundamental freedoms in the political, economic, social, cultural, civil, or any other field (CEDAW)." Women with disabilities are not included anywhere in the 30 Articles that make up the Treaty. In the wording of the treaty, it could either be assumed the rights of women with disabilities are to be included or their needs are much greater and should have their own treaty. The reasoning of the latter only encourages the idea of women with a disability to be seen as "other" and not (or cannot be) a full participator in society. In 1993, the United Nations included women with disabilities in their statement for equal opportunity.

Persons with disabilities and their families need to be fully informed about taking precautions against sexual and other forms of abuse. Persons with disabilities are particularly vulnerable to abuse in the family, community or institutions and need to be educated on how to avoid the occurrence of abuse, recognize when abuse has occurred and report on such acts (Iglesia, et al). They furthered their stance by stating that laws may need to be introduced to ensure the protection of women with disabilities, including that of victimization and harassment. The United Nations Population Fund held a conference titled International Conference on Population and Control and they decided that:
Governments at all levels should consider the needs of persons with disabilities in terms of ethical and human rights dimensions. Governments should recognize needs concerning, inter alia, reproductive health, including family planning and sexual health, HIV/AIDS, information, education and communication. Governments should eliminate specific forms of discrimination that persons with disabilities may face with regard to reproductive rights, household and family formation, and international migration, while taking into account health and other considerations relevant under national immigration regulations (ICPD).

They, too, believe in dissipating barriers to women with disabilities getting accurate and safe sexuality/sexual education information and to be considered a viable part of society that can stand on their own if given the chance. The United Nations Fourth World Conference on Women (FWCW) from 1995 reiterates the above statement made at the ICPD by admitting that "[Governments] should ensure that women with disabilities have access to information and services in the field of violence against women (FWCW, 6)."

With the above statements reinforcing international human rights affirmations, laws and policies throughout the world still violate the rights of women with disabilities and their right to physical integrity: When a fetus has been tested and is positive for a "serious hereditary disease" or "serious deformity", doctor’s in China, under the Maternal Health and Infant Health Care Law, are required to advise women to obtain an abortion and that couple’s "should" follow the doctors recommendations. In Australia, 1,045 girls with disabilities under the age of 18 were forcibly sterilized. "Girls as young as nine years old have been sterilized for reasons that include the elimination of menstruation and the prevention of pregnancy (CRR, 2)." In 1999, a woman previously diagnosed with schizophrenia was burnt to death by villagers after having her fingers cut off and her eyes put out. The supposed explanation is that she had destroyed a copy of The Koran.

Susan Wendell asserts that the category of disability is also a social construct, one that is easier to understand when viewing it from a westernized viewpoint. Gender is not as big a concern in other countries as violence against women is. This can be recognized in the reasoning for many countries who consciously decide not to treat women with disabilities as full participants in society. The above references from Violence and Disabled Women prove that fact. The organization Women with Disabilities Australia goes further to say that disability is preconceived and presumed to be a personal tragedy and the fault of the person "inflicted" with any disability or disorder (12).

Who gets to decide?
The dangerous topic of who is allowed to be a parent surrounds the issue of forced sterilization and abortion. Of the cases aforementioned, the rights of women with a disability to experience motherhood was questioned and in many cases decided for them. Common reasons are given for why we cannot be mothers and the question most asked is: When is it okay for someone else to choose what is in the best interests of women with a disability, especially when a woman has mental disability and may have a diminished capacity for maturing into adulthood. When one looks at the assumptions of women with disabilities and their rights to be a mother, to be taught correct and accurate sexual identity information, or the right to be told about their choices of contraceptive methods, we can quickly see that the decision is based solely on the disability without taking into consideration the person behind the disability.

The CRR also states that up until a woman is able to give informed consent, she should be able to do so. Herein lies the controversy because at what point do we deem a woman with a disability unable to give their informed consent? In many states, a judge or psychologist has to deem a woman mentally incompetent. In many countries, it is often left up to her parents or caregivers. Another problem that is often brought up is the greater risk to sexual and/or physical abuse of women with a mental disability or mobility issue. At times it is these women that incite greater protective measures from their families, who end up making the decision to have them forcibly sterilized or given contraceptives.

It is most often ensued that until a woman is no longer able to give consent based on her mental health status, that she would be able to have that basic human right to decide for herself when reproductive freedoms are in question. In Russia, children who are born to parents with a mental disability are institutionalized regardless of that child having a disability or not. In South Africa, women with disabilities who have children are met with contempt and most often rejected.

Obtaining consent from a young girl is a difficult process as a conundrum becomes evident when considering the girl’s age and whether or not she will be able to understand the situation that is being put before her because of her disability. But the fact that a girl may not be able to consent in her teenage years does not mean she will unable to consent ever. Dowse reminds us of cases where a young girl was deemed incompetent, therefore sterilized before she was 18 only to find out when she had gotten older and gotten married, that she was unable to have children because of the surgery that had been done too soon in her reproductive life (16).

Who can give consent for the young girl is yet another problem as parents may be taking an overprotective stance, who wants their daughter sterilized so she if she is sexually abused or raped, complications cannot occur because of it. Doctors and psychiatrists come at the decision from a medical background that is not necessarily grounded in patient-first care ideologies, meaning communication and socialization are not of their primary concern. Therefore, consent should be determined on a case-by-case basis with everyone involved: parents, doctors, psychiatrists/psychologists in order to make the best decision.

Currently in England, the law states that courts cannot consent on behalf of a 20 year old woman, but it can decide on the legality of the operation and is usually deemed as being non-consensual. When the decision to be made is strictly for contraceptive reasons, the courts have to be involved every time. In New Zealand, a similar law is in place that allows the parent or guardian of a woman under 20 to consent to have the woman undergo a hysterectomy. For women over 20, the Family Court must authorize the procedure for those incapable of giving consent.

Perhaps this is why it is intriguing to learn of the great strides Australia has taken to include persons with disabilities into their society and to bring attention to the fact that Australia still performs forced sterilizations and abortions as of 2001. Knowing of their tumultuous past, it seemed raising awareness was an arduous task at first but upon forming a separate organization that deals primarily with disability issues and how they affect women, they are making giant waves (Dowse, Frohmader, 12).

Canada, too, has entire organizations as part of their regular government that address how persons with disabilities are portrayed in the various media outlets such as newspapers and radio. Canada has popularized and mainstreamed the lives of persons with disabilities into everyday society which included an ad campaign to advertise to the general populous what living with a disability was really like. By far, Canada appears to be the most progressive when advocating for the rights of women with disabilities. Canadian Health Network has information that can be dispersed to service providers looking for tips on how to treat women with disabilities (such as being deaf) better. The site also provides information on the myths of persons with disabilities as being asexual, different and heterosexual or cannot be mothers, amongst others (Basson, 359). Elaine Carty immediately acknowledged that "disability, much like that of race and gender, is shaped by a complex interplay of social, cultural and political forces (363)." This again reiterates what Thomson repeatedly says about Feminist Disability Theory and its need for inclusion within feminist thought.

Diana Radtke states quite firmly, "We are against forced sterilisation or abortion. We are against selecting the so-called abnormal foetuses (a woman should have the right to choose whether she wants to have the baby or not) and we are against infanticide on the ground of impairment (3)." They believe in making every child a loved and wanted one, regardless of it differing abilities. Many countries, until such Treaties as CEDAW, did not realize violence against all women was considered a human rights violation. As seen throughout the above pages, many International Organizations make the brave statement that each woman should have the innate ability to decide for herself, in support of her family, whether she wants to be a mother, including women with disabilities.

Reproductive freedom is now considered a fundamental human right in many countries such as the U.S. [4], Canada and Australia but only recently was that ideology stretched to include women with disabilities. Even the larger pro-choice movements, in many of the developed countries, have failed to see how the needs of women with disabilities differ from that of able-bodied women; myself included at times. It is a constant struggle and requires an unusual amount of perceptiveness to be able to know when certain members of society are being excluded because it is not always done consciously.

[1] This is only to be used as a diagnosis since in many states (Virginia included) this has to be the formal diagnosis in order to get funding or Medicaid.
[2] They only swatted me and didn’t leave any bruises.
[3] The general use of the term “have been” cannot be used here because while there has been a Treaty for Women’s Rights and various other political movements to include women with disabilities, not all states have voluntarily adopted such changes to their constitutions.
[4] I say this with the understanding that lately it seems it is not a fundamental right, but thank goodness there are laws that still stand on our side.

Keep reading....

Monday, March 27, 2006

Part V: Feminist Disability Theory

Due to lack of time, I'm posting a presentation on Feminist Disability Theory in it's entirety, meaning, I don't have time to tailor it to readers so it is in spoken format. It shouldn't be too hard to read and, as usual, I'm open for discussion!

WOMAN feminine, beautiful, sister, mother, daughter, friend, lover; myself, other people with similar physiological characteristics or behaviors; bearer of life; lover; wife; intelligent; married; leader; career; lovable;

WOMAN WITH A DISABILITY unable to do things most other people are abled to do either temporarily or permanently; a woman who experiences a form of mental, physical, or emotional handicap or difference as compared to what’s considered “normal”;

DISABLED WOMAN a woman without permanent abilities, hindered in fulfilling roles completely, or rather easily, must alter surroundings in order to fulfill roles as expected by society; the “disabled” aspect seems more primary in characterizing the person, as if it comes before gender identity; crippled; almost lifeless; asexual;

(I spent the first 10 min going over words and how society think of women, women with a disability and disable women. It was productive and helped them better understand the intersecting ideas, etc. And it was much more fun than writing another paper!)

The World Health Organization (WHO) defines disability as “a restriction or lack of ability to perform an activity in the manner considered ‘normal’ for a human being.”

What is the problem with this definition?
They say it requires a restriction or lack of ability – but what about those with a mental disorder and/or disability? They say in the manner considered “normal,” but who gets to define what normal is?

The Americans with Disabilities Act of 1990 defines an individual with a disability as:
having a physical or mental impairment that substantially limits one or more major life activities; having a record of such an impairment; or is regarded as having such an impairment.

What is the problem with that definition?
It is very broad and leaves the definition of physical or mental impairment up to individuals therefore its interpretation varies from person-to-person, becoming inconsistently enforced. Making someone report such an impairment means that an individual has to go through the diagnosis process but what if they are homeless, don’t understand they have a problem, or perhaps they have no health insurance for proper meds? This is why the Supreme Court enacted the Olmstead Act which is an “amendment” to operationalize the ADA. For example, making it mandatory that all public facilities make themselves accessible and within a certain set of guidelines. Before the Olmstead Act, the ADA stated within its guidelines that any building over 2 stories didn’t have to put in an elevator; now they do.

Holcomb and Giesen offer an alternative definition that a fellow classmate brought to my attention a few weeks ago which brings the issue back into society as it should be: Persons with a disability are those “who self-identify as living with an ongoing physical (or other) condition such as mobility impairment, blindness, deafness or other circumstances for which architectural and attitudinal social barriers have limited their inclusion and participation.”

Now, with that in mind, Nicola Griffith, in her essay entitled “Writing from the Body,” gives us a brief history on dualism of which Plato was the first to speak. Dualism is a theory that the world consists of two separate states of being: visible meaning your physical self and eternal meaning your soulful self. Plato said that the body is particular therefore imperfect but the soul is universal with its aim to separate itself from the body and return to the divine.

Aristotle took it a step further when he claimed individual substance is made of both matter and form meaning that the human soul cannot exist without a human body. He also stated, in Generation of Animals, that any physical difference (among humans) that ‘departs from type’ – meaning the able-bodied male – becomes a monstrosity that, by its very essence, is less than human. He claims that this first happens when a female is formed instead of a male and that society should look upon the female body as a deformity.

Paul, coming from the Judaic tradition, thought that Plato’s ideals and his Judaism would fit nicely together. Griffith states, “Evil, Paul declared, must manifest itself in the physical. The body, with its needs and functions, is evil, something from which we should seek to distance ourselves. The more physical and messy the body, it seemed, the more evil the person.” So it goes to show that the idea of women bleeding monthly and giving birth would make them anchored much closer to the imperfect physical realm than men, and persons with an obvious disability or disfigurement even more so.

The two women whose stories and ideals I will be sharing with you today have multiple sclerosis. MS is often considered relapsing-remitting MS which means that every once in a while, a persons immune system goes haywire and attacks the myelin sheath on the neurons of the brain and spinal cord. This usually means that they will wake up with something not working such as an arm, leg, foot, hand, fingers and/or various other muscles and nerves. Much like other degenerative diseases, MS worsens with time, eventually leaving the person relying heavily on canes or wheelchairs. Nancy Mair, by the end of her book, has full functioning in one hand only and uses a powered wheelchair. Keep these in mind while I tell you their stories of trying to become, and be, writers.

Has anyone ever read a book by or about someone with a disability? How about Flannery O’Connor? Homer who was blind? Edgar Allen Poe who had diabetes, depression and alcholism? Lewis Carroll, George Bernard Shaw, Leo Tolstoy who all had ADD? F. Scott Fitzgerald, Hans Christian Anderson, Agatha Christie who all had dyslexia? A new interpretation of Hans Christian Andersons work puts him as having Aspergers Syndrome, Sylvia Plath and Virginia Woolf were bi-polar, Tennessee Williams had diptheria as a child and so therefore was weak for the rest of his life…

Of the many books I either read or looked at, it is not uncommon for all womens writing to be considered autobiographical regardless of differing abilities. After all, we discussed how some womens narratives are filed away in the self-help section of major bookstores. As for finding a specific autobiographical text written by a woman with a disability, it’s tough, but it is possible. I will expound on this idea later.

In Nancy Mairs book Waist High in the World: A Life Among the Disabled, she writes about her amazement in how advanced England is in accomodating those with disabilities as opposed to the leper-like treatment she gets in the U.S. She first visited England when she and her partner found out he had cancer and so they decided this was the time to visit England since they had never been. On that 1st visit they discovered how much easier it was to travel around England as opposed to the U.S. England quickly became their vacation spot of choice; they even had a cozy, accessible cottage they rented each time. She noted that if the buildings in England weren’t accessible, they would compromise with Mair and her partner to find a way in and around. Such an example is when she visited the home of Virginia Woolf and they could only get in to see the garden. Think about Richmond with its inaccessible cobblestone and brick walkways, steep hills and various other “roadblocks.”

She then discussed how she was acknowledged as one of the Who’s Who of Western Writing yet did not feel she qualified for such a title, because 1. she was not orginially from Arizona but Boston instead (which is not in a western frame of mind) and 2. when you think of the west, you generally think of actions requiring free movement such as walking across deserts, climbing or riding up and down the Grand Canyon, visiting the Alamo, Yellowstone and so on. As she succinctly stated, she had to wait for the west to be paved before she could explore it’s many natural wonders.

In her chapter, “Writing West: A Reclamation Project,” Mair wrote that a couple of editors, who had asked her to write about the west, replied with “No, not that story. We had something else in mind.” They then proceeded to give her some examples: “pieces built around backwoodspersons and long reflective walks by the verges of isolated lakes, about the uses of firearms and childhood encounters with Indians.” Nancy Mair has riden belly-button high for a number of years so her stories would not be like any other woman who had written for that particular publication. They wanted to know her differences but only how they qualify her existence within the mainstream views of mobility. In her words:

But that’s not how disability works. It does not leave one precisely the same woman one would have been without it, only (in my case) shorter. It does not merely alter a few, or even a great many, details in the life story that otherwise conforms to basic narrative conventions: the adventure, the romance, the quest. Instead, it transforms the tale
utterly, though often subtly, and these shifts in narrative tone and type arouse resistance in both the ‘author’ and the ‘reader’ of the outlandish plot.

Nicola Griffith speaks to this very idea in her essay, “Writing from the Body.” In her words:

Multiple Sclerosis changed some things about my life. As I have changed, so has the way in which I draw my fictional characters. Most of them suffer a great deal, emotionally and physically and – compared with my earlier work – solutions to personal and plot problems are no longer wholly physcial. In fact, they are rarely so. One criticism of Ammonite has been
that the confrontation between the Mirrors and Echraidhe was anticlimatic. ‘There should have been a battle!’ But battles, the simple smashing together of armies followed by a body count, no longer interest me that much. What intrigues me now are the minutiae from which such conflicts spring.

Griffith tells readers how she counts on her days being “good” – meaning she wakes up with the ability to use all or most of her body – but when she has her (increasing) “bad” days, she lies on her couch or bed staring out of her window and into the sky to watch its amazing colors, shapes and transformations. She states how this ability to see is attributed to her success in writing her latest science-fiction novels . She is thankful for this ability because most other writers do not get such a luxury and she believes it has led her writing into a deeper dimension.

Griffith also makes a great point in her article when she says that almost all women’s writing is seen as autobiographical, even in her case and she writes only science fiction novels. She uses the example of her first review of her novel Ammonite. The book is about a woman who ends up on another planet and experiences a number of things impossible in our reality today such as aliens, rearrangement of DNA and a deadly retrovirus. What is the reviewer’s obvious mistake? He pegged her novel as being autobiographical. Somehow Griffith herself ended up on another planet and faced aliens. What finally dawned on her was that the reviewer caught on to the fact that the main character in the novel loved another woman therefore since Griffith was a lesbian, she was writing about herself. Interesting how the reviewer took out of the novel the only part that could have been remotely autobiographical – the existence of a lesbian relationship – and dismissed the rest.

Griffith gives us her explanation for the suppression of women’s writing. Because women are still thought to be unable to transcend the physical and actual and soar into the realm of pure imagination, we are still considered to be hampered by our bodies and incapable of seeing beyond personal experience. We are often not considered artists so therefore our writing is most often labeled autobiographical. This theory is telling as to why a woman attempts to keep her disability hidden so her writing will not be judged by this standard.

Think back to the times you have encountered a person with a disability within a work of literature. More often then not, they have not had a viable status within their society. Deborah Kent, in her essay “Disabled Women: Portraits in Fiction and Drama,” states how the literary image of disabled women may influence how they are seen and judged in real life. She conducted her own research because she was trying to find a role model for herself, yet came up short on finding positive depictions of women with a disability. The overwhelming issue that I have found, which Kent supports, is that women with disabilities don’t have the necessary ability to take care of a man in a relationship. A man might feel as if he lowered himself within society because he was only able to obtain a substandard partner. On the other hand, a woman with a disability is intriguing to other men because she is seen as mysterious or vulnerable.

Now, what makes this all so interesting is that a woman is more likely to get involved with a man who has a disability because of her purported nurturing behavior. It is said that most women have a maternal instinct to care for someone or something and it is this instinct that perhaps drives the relationship. She sees a man who is disabled as needing something from her while most men might see a woman who is disabled as not being a whole woman and therefore not able to bare children, clean the house and/or other socially defined wifely duties.

Kent also brings to our attention how, in literature, women with disabilities are often portrayed as victims to whatever their disability may be. She is often characterized as having been victim to some outside onset of the disability, which is a man in many cases. Looking at this from a victim’s point of view portrays these women as vulnerable, weak and helpless in the eyes of readers, therefore forming the societal perceptions on how we view persons with a disability whom we may encounter in our everyday life.

Michelle Fine and Adrienne Asch cite in their essay “Nurturance, Sexuality and Women with Disabilities: The Example of Women and Literature,” statistics obtained in the early 1980s from a Current Population Survey. It reported that 60% of men with disabilities were married while 49% of women with disabilities were married. 14% of men termed “severely disabled” were divorced while 26% of women termed “severely disabled” were divorced. What it boils down to is that divorce rates are higher when the onset of the disability comes after marriage with women in the largest percentage bracket.

Asch and Fine go on to explain the “attractiveness stereotype” which, as some of us are aware of, is persistent in our mainstream society. Those who are attractive are seen as more sensitive, kind, interesting, poised, sociable, sexually warm and will often hold better jobs, be more successful in their marriages, and have happier lives. The stereotypical measure of attractiveness is also somehow linked to virtue. What Asch and Fine also state is that a woman’s attractiveness is seen as a reflection of the male partner’s social status. Because of this attractiveness quotient, it should come as no surprise that heterosexual women with disabilities are more likely to be alone than are heterosexual men with disabilities. Men may assume incorrectly that a woman with a disability could not contribute either physically or mentally to a growing relationship. The example Asch and Fine gave is that “if a woman cannot sew on a button because she cannot use her hands, she may be thought unfit to help with the mending of emotional fences as well.” Asch and another research partner, Sacks, discovered in a review of autobiographies from women and men that the men sought out sighted wives so that they would be complimented, to ensure the normalcy and successful status and to be sure their navigation throughout society was smooth both literally and figuratively.

This then brings me to my main argument: why Feminist Disability Theory, or at least Disability Theory, should be integrated as a separate component in all sociological, psychological and women’s studies programs across the world. Much like Felski and her argument for the need of a Feminist literary criticism which helps to shed some light on the way society affects the lives of women. We then read and understand these theories through the literature feminist critics write, and so the same could be said for a Feminist disability criticism. By reading the biographical and/or autobiographical texts of persons with disabilities regardless of their gender allows those of us who live on the outside to acquire the proper terminology and knowledge for acceptance into yet another level of sociological difference.

Feminist Disability Theory will allow us to learn that the term disability is really an oxymoron because the persons this word is used to describe are not disabled at all, but simply have differing abilities. We will begin to learn the history of such words as handicapped, which dates back to the return of the men from World War II, who would hand out their caps to collect money because they were homeless and hungry. We will also learn that such phrases as “confined to a wheelchair” or “wheelchair bound” are also oxymoronic in that persons using a wheelchair are not confined or bound to their chair, but instead are able to adapt and move about society with greater ease. Feminist disability theory will allow us to examine the relationships between heterosexual and homosexual couples were one or the other has a disability and how these differing abilities become yet another facet of their identity. We talked about such theorists as Patricia Hill Collins who stated that we shouldn’t forget she is black and only see her as black at the same time; a concept that goes back to Plato’s original idea of dualism. Women with disabilities are asking the same thing. We shouldn’t see them as only their disability, but we shouldn’t forget that they have one either. My friend Lori is going through this very concept right now. Certain family members are constantly reminding her that because they can’t see her disability it is contained only in her head yet because of her disability her outlook on life has changed significantly in the past few years since its onset.

I would like to leave you all with two questions that Griffith posed to her readers and I think they are a perfect to leave with you in closing:

1. Who are you when you have nothing left but your inner resources?
2. Once a particular self-image has been shown to be patently untrue, who and what is there to replace it?

Keep reading....

Sunday, March 26, 2006

Part IV: To have sex, or not to have sex, that is the question....

Sexuality is defined as “the condition of being characterized and distinguished by sex; concern with or interest in sexual activity; sexual character or potency.” Our Bodies, Ourselves(11) defines sexuality as not merely the physicality of sex, but a woman’s sexual desires, fantasies and the ability to pleasure herself through learning about her own body. The Arc’s position on sexuality is, “Every person has the right to exercise choices regarding sexual expression and social relationships. The presence of mental retardation and related developmental disabilities, regardless of severity, does not, in itself, justify loss of rights related to sexuality.” (13) This paper does not discuss the physicality of sex itself, but instead focuses more on societal perceptions of sexuality with regards to women with visible physical disabilities and the sexual education that does or does not pertain to these women for the purposes of finding out their own sexuality. What is taught in most schools usually focuses on the non-disabled, heterosexual aspect of life, which excludes those who choose to live alternative lifestyles.

Blue Belle(3), a young lesbian woman with several disabilities, and LJ, a young heterosexual woman who is married and has an invisible physical disability, are two women whose voices will be heard throughout the following pages. They wish to remain anonymous and so pseudonyms are used to represent them. Other individuals and documented cases from various disability-specific literature will be cited as well to provide examples in order to illustrate key points.

A woman with a physical disability, seen or unseen, is often thought by able-bodied persons to be “asexual.” Thus are viewed as not having any sexual urges or any desire to be loved by another person. They are typically seen as disability first, woman second: “We are invisible.”(4) In fact, women with physical disabilities (WWPD) can be very sexual and do identify themselves as homosexual, bisexual or heterosexual. Mainstream society tends to advocate that a physical disability of any kind prevents a woman from participating in a communities social functions, such as dating, marriage, or something as simple as going out to a movie and dancing. Sexual health, sex education and gynecological exams are challenges for women with disabilities since they have less access to qualified specialists and accessible exam rooms. In some cases, gynecological exams can cause a great deal of pain if the doctor is unaware of the necessary accommodations required for most women with a physical disability.

There are several different definitions of “disability”. defines it as “the condition of being disabled; incapacitated; A disadvantage or deficiency, especially a physical or mental impairment that interferes with or prevents normal achievement in a particular area; something that hinders or incapacitates”. Victoria Brownworth(5) says that disability is “any condition – disease, illness or syndrome – that impedes or prevents a woman from living what our non-disabled society considers a ‘normal’ life.” The Americans with Disabilities Act(1) broadly defines disability “as nearly any obstacle or impediment to accessing public accommodations, the workplace or institutions of higher learning.” This paper focuses primarily on women with visible physical disabilities though LJ will be mentioned because while her chronic illness is now “invisible”, her experiences with various doctors are pertinent.

Societal Perceptions
Our nation's history in the treatment of persons with physical disabilities is a long and arduous one. Virginia forcibly sterilized women from 1912 to 1979 when, finally, eugenics language was removed from Virginia state law. The main purpose of Virginia’s eugenics law was “to rid society of the ‘burden’ of people who were ‘inadequate’ – by stopping them from breeding.”(12) Approximately 60,000 women in the United States, 8,300 in Virginia, were forcibly sterilized from 1907 onwards and were often not told about it. These women were often given spurious reasons for needing surgery but were sterilized instead because they had been labeled as “insane, idiotic, imbecile, feeble-minded or epileptic”(12) at some point in their lives. Dr. De Jarnette, who later had a state treatment facility named after him, was most influential during this time in pressing for eugenics in Virginia stating, “No person unable to support himself on account of his inherited condition has a right to be born.”(12)

On many occasions, there was no basis for their claim. Psychological evaluations were inept because a societal norm had already been established and anyone who did not meet those qualifications was considered incompetent. Freud speaks well of this, as he was a leading psychoanalyst of this time as well as being a strong supporter of the eugenics movement. Former United States Supreme Court Justice Oliver Wendell Holmes stated in his report on the case of Carry Buck, the first woman in Virginia who was chosen to be sterilized that, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…Three generations of imbeciles are enough.”

Women with physical disabilities deal with discriminatory attitudes from society because of the mainstream media’s representation of “the perfect body”. Because WWPD are more visible, this will be my main focus. Women with a developmental delay, such as Down syndrome, also receive this kind of treatment, but only because, again, it is outwardly visible. WWPD endure discrimination more from the societal, cultural and economic views of disability than by their own body or limitations. It was found that men with a physical or mental disability make approximately $.87 to every $1.00 that is earned by a man without a disability. Women without a disability make $.77 while women that have a physical or mental disability make only $.2214 for every dollar that is earned by a man without a disability. Divorce is more likely to happen when it is the woman who has the physical disability and WWPD are at an increased risk for emotional, physical and/or sexual abuse.(14)

WWPD tend to experience the effects of disability differently from MWPD in that they are studied, paid and work less. Activists and scholars of the civil rights movement of individuals with disabilities rebuff the view of disability that has been our country’s tradition for centuries – that WWPD have broken bodies that need to be fixed. Instead, they are advocating for the right of WWPD to choose what is best for each woman individually and to make the mainstream society aware that it places much more of a “handicap” on WWPD than they do day-to-day.

A good example of sexual and disability discrimination is the Sharon Kowalski-Karen Thompson case.(5) In November 1983, Sharon had been driving her niece and nephew back to their house when they were hit head-on by a drunk driver. All three were flown to different hospitals, Sharon’s niece later died and Sharon was in a coma for approximately six months. During this time Sharon’s parents learned of the true (lesbian) relationship between Sharon and Karen Thompson and, eventually, did not allow Karen to visit. More than fourteen years passed, and from the beginning, Sharon’s parents did not think she was mentally able to decide what was best or to make her own decisions without a psychological evaluation ever being done on her. Throughout this long, drawn-out court battle, Donald Kowalski had, in more than one interview, stated that Sharon would be better off dead. Still, he was allowed legal guardianship even though he did not have Sharon’s best interests at heart; Karen stated that neither parent had ever discussed with Sharon what she would like to happen.

The judge who presided over the numerous hearings based his decisions on pure homophobic notions about the gay/lesbian community as well as the anti-gay stance that Mr. Kowalski held and had been allowed to introduce during the hearings. The Kowalski’s believed Sharon did not have a chance at a better, more fulfilled life and so, before they had even started, gave up all hope and placed her in a retirement home. Because they did not provide Sharon with access to physical therapy, the proper equipment for her rehabilitation, or psychological therapy, she lost the most precious years for gaining back all that she had lost in her speech and her mobility. However, Karen kept fighting for Sharon and after fourteen years, a final decision was made in April 1993, allowing Karen to finally take Sharon home, which finally became a reality in 1999. The point of the above example is to show that even ones own parents do not think of a WWPD as a whole person, therefore denying them treatment and information that could make for a better life.

WWPD, like all women, are multi-faceted, have different skills and/or interests. A woman who is defined by her disability is like other women being defined by their skin color, how many tattoos/piercings they have or even by their hair/eye color. Every one of these women still has the qualities of a human being. Societal attitudes towards women with physical disabilities can range from complete invisibility to denial that the woman with a disability is in front of an individual, actively seeking information. Some WWPD have reported that other persons without disabilities talk to whoever is accompanying them, thus rendering them invisible. Sharon Wachsler(18), who has Multiple Chemical Sensitivity (MCS), had just this kind of experience in her gynecologist’s office after her exam. The receptionist kept speaking to Sharon’s friend, Heidi, instead of Sharon herself, even when Heidi would direct the receptionist to her. Below is her account of what transpired:

Sharon: Can I pay here?
Receptionist: (to Heidi) Does she have a co-pay?
Heidi: (pointing at Sharon) I dunno.
Sharon: Yes, it’s five dollars.
Receptionist: (still looking at Heidi)
Heidi: (finally) Yes, I guess its five dollars.
Sharon: (tearing out the check and putting it on the counter in front of the receptionist) Here.
Receptionist: Will she be paying now?
Heidi: (pointing to my check on the counter)
Receptionist: (staring with vague expectation at Heidi)
Sharon: (picking up the check and waving it in front of the receptionist’s nose)
Receptionist: (taken aback) Oh.

Sharon stated that this had happened numerous times. She decided to write about this particular visit with hopes of making others aware of their own biases towards WWPD.

Kelly Mack(9) spoke about her growing awareness of the societal perceptions to her physical disability. She feels like her body is broken, something doctor’s feel they must fix and that she is not seen as a whole woman. She says, “a disabled female body is not coveted like the women of magazines or movies: it is hated, feared, and ignored. To be a disabled woman is to be reminded that I am not able-bodied enough to even be a woman. To be disabled means to not have a body of worth. To be a disabled woman means to not even be worth society’s expectations of conformity and femininity.” As she struggles with acceptance within herself and fights this societal perception on a daily basis, she adds how others would refer to her as “the wheelchair” and how the bus driver would announce to other passengers “watch out because the wheelchair was debarking.” Her response is quite humorous as she wondered out loud where her wheelchair was going without her. She feels that she is a constant advocate because societal norms need to be advocated against – they need to change: “Women with disabilities living in this society are not exempt from the influence of messages that attempt to dictate what is desirable and what is not in a woman.”(4) One of the many reasons why women with visible physical disabilities are not accepted into society is because they are not perfect, but who is? Even full-figured women are hardly seen in clothing ads or in television shows, and when they are, the shows do not do well because they, too, do not represent the ideal female body.

How much a woman’s body is portrayed in the media can have a negative affect on those women who do not look like supermodels. So much emphasis is placed on having the perfect body that it can make it quite impossible for women to obtain, which can cause women to have a negative view of their body, which in turn can greatly affect their sexuality;(4) a woman who does not feel she is beautiful will be unable to convey this to others: “Whether we were born deaf or with spina bifida or develop multiple sclerosis or lose a limb later in life, women with disabilities too often find other people assuming that we are not sexual beings.”(9)

Blue Belle stated that she receives mixed reactions from society and it all depends on how much she conforms to the mainstream, as in not having all the daily challenges in her life that she does. She then said that on several occasions she has been told to her face by women and men that she has known for a while that they perceive her as “asexual”, that they believe she does not have her own sexuality or desires. She feels that she is a woman, a writer, a feminist activist and a woman with a physical disability simultaneously, often each identity running parallel and on occasion intersecting, so when others that she has known for a long period of time compartmentalize her, she finds hurtful and degrading.

The following wellness perspective of sexuality for WWPD conveys expectations that empower these women:(14)
* Positive Sexual Self-Image – she is accepting and not ashamed of her body; exercises bodily autonomy and appreciates her own value; the ability to restrict her limitations resulting from her disability to her physical self and not let it impose on her sexual self.
* Sexual Information – she actively seeks credible and reliable information about sexuality and is able to apply it to herself; has knowledge about how her disability affects her sexuality.
* Having Positive, Productive Relationships – she generally feels satisfied with her relationships; feels the ability to communicate well and stability within the relationship; is able to control the nature and amount of contact with others.
* Managing Barriers – she has learned to reduce her vulnerability; is able to recognize psychological, physical and sexual abuse and take necessary actions to reduce and eliminate it; recognizes her right to live in a barrier-free world and takes action to achieve it; confronts societal barriers by using good communication skills to educate her partner, friends and family.
* Maintaining Optimal Health and Sexual Functioning – she participates in health maintenance activities and engages in health promoting behaviors; manages her environment to optimize privacy for intimate activities; is satisfied with the frequency and quality of sexual activity; is able to communicate freely with her partner about limitations and devices, and about what pleases her sexually.

Sexual and Sexuality Education
When attempting to find information on sexual education programs for WWPD, there were none that spoke specifically to women with any disability and instead focused on the heteronormative ableist view of sexuality.

In many cases, parents, educators and medical professionals find no need to discuss the issue of sexuality with women whom they believe might not, nor should, be having sex whether it be homosexual, heterosexual or bisexual. When looking over the SIECUS website(7), I found only two instances where the sexual health of women with disabilities was mentioned within their sexual education curricula. The first was, “all bodies are special, including those that are disabled” and the second was, “people with disabilities can have and care for children.” Granted, this is a widely used curriculum for sexual education in public schools, but in Virginia as well as several other states, the teaching of abstinence is required with no room for deviation. I did not find a specific topic outline concerning the sexual health of WWPD. There were several books listed on an annotated bibliography on the SIECUS website; however, the current school curriculum available in most states does not include those persons with a physical or mental disability which in turn excludes them from participating fully in what is supposed to be a safe and inclusive environment.

One website did include information on what and how to teach youth with developmental disabilities about their sexuality, but that information did not apply to WWPD. The physical act of sex can have different limitations because of a woman’s physical disability and therefore, should not be treated the same as women without a disability in that regard. At the same time, WWPD can have sexual intercourse and physical desires just like women without a disability. The very fact that there is a lack of sexual and sexuality education programs for these women proves they are still excluded from modern society and are not viewed as a whole person.

I posed this question to Blue Belle (3), “What type of sexual education have you had? Did it address issues related to disabilities?” Her response was, “[Plus], none of these courses address people with disabilities as being sexual beings. We are assumed to be, for lack of a better term, ‘asexual’ which I always find upsetting on a variety of levels.” She also mentioned the lack of information she has received from her gynecologists or general practitioners - which would be close to nothing. She figures that because she is a lesbian and not at risk for pregnancy, they assume they do not need to discuss any information with her regarding sexually transmitted diseases, safer sex practices and so on: “Access to accurate sexuality materials is very important for women with disabilities, their families, and health care providers.”(14) Blue Belle has led safe-sex workshops in conjunction with activists groups for lesbians and is always amazed at the lack of fundamental information that is available in her community.

Studies have found that women in general learn about sex from their peers; however, women with a physical disability usually do not have the same type of interactions with their peers in order to get that kind of information. They tend to learn about their sexuality through books, other printed materials, and unfortunately, violent experiences as women with a mental or physical disability are much more susceptible to sexual and physical abuse. Friends, peers, and romantic partners do happen but because of the societal perceptions in regards to physical disabilities, this usually takes a while. This suggests that women with a disability learn through the same sources, just in a different order. Since women without a disability are likely to have a romantic partner or a close peer group first, this is how they might learn of their sexuality, then come the therapy books and other printed materials, as they get older.(10)

The University of Iowa has several publications (printed using funds provided by the state) regarding women with both developmental and physical disabilities. Finding such state funded programs in Iowa instead of Virginia can be quite discouraging and even more so since Iowa ranks amongst the top ten for fiscal effort for Mental Retardation/Developmental Disabilities services since 1992, with Virginia ranking in the bottom ten.(16) There is even one publication that deals directly with the health issues concerning WWPD such as their sexuality and gynecological exams. It seems that the major barrier to women receiving sexual health and sexuality education that deals specifically with their disability is their inability to locate the programs within each state. These programs are not mainstream information and usually get passed around only by word-of-mouth. In fact, WWPD are usually excused from learning about sexuality because they are often thought as “asexual” while in contrast, women with mental disabilities are often excused because they are considered “sexual deviants” and parents or caregivers do not want to entice them into improper behavior.(6)

Most, if not all, sexual health programs leave out any information for women with regards to forms of contraception. A section of Our Bodies, Ourselves(11) is devoted to the pros and cons of certain types of oral contraception, intrauterine devices (IUDs) and barrier methods for WWPD to use that coincide with their specific disability. A chart lists some of the types of disabilities – not all are visible, physical disabilities – and their effects on sexuality and ways to get around those problems such as myocardial infarction (destruction of heart tissue resulting from obstruction of the blood supply to the heart muscle) in which birth control pills are not recommended. Latex allergies are also discussed, whether a woman has sensation in her pelvic area, and what medications she is currently taking since birth control pills might neutralize them. It is important to remember that the types and numbers of medications a woman is on can also have a direct effect on a woman’s sexuality since they can have various side effects such as vaginal dryness, low sexual drive, etc. A lot of patience and understanding as well as creative ways to find sexual pleasure are needed from both partners in order to have an active and satisfying sex life. It is a very useful list and helps to diminish the perceptions of the “asexual” tag that is often attached to women with a physical disability.

In having Crohn’s disease, LJ’s activities are constricted considerably since one of the many symptoms of Crohn’s is to either have diarrhea, constipation, or a combination of both. She has to pick where she is going carefully and make sure she has access to a restroom at all times. She reports that sometimes having sexual intercourse with her husband can be painful and the medications that she used to take had a serious impact on her sexuality. At one point she was on a severe narcotic that kept her dazed and tired all the time, which depleted her sex drive.

Mitchell Tepper, PhD, MPH, posed a question to disability-focused forums and lists found on the Internet.(15) He asked them, “What does your partner find sexy about your disability?” He received several answers from men and women telling Mitchell what they thought: “My babe is 6 months new to a C5-C6 SCI, incomplete injury. I find her extremely sexy. I always have and I always will”; Anonymous notes, “I didn’t know the person I love before (the disability), but I have seen pictures. They are just as sexy to be now as they are in those pictures….more so maybe because of the special person they are inside and out….and gorgeous….gorgeous indeed!”; Darlene, who has cerebral palsy, asked her able-bodied partner, who replied, “Who said I found anything about your disability sexy? How about you send something in that says I find YOU sexy notwithstanding your disability.”

Within the past several decades, society has realized that WWPD can have children and are able to have loving and meaningful relationships with other women and men. An increased amount of research is being conducted to further the comfort level of WWPD and new ways of making public facilities more accessible are becoming readily available in order to make community participation easier. So you see statements like the ones above and think, “Then there is nothing to worry about, nothing to advocate against since all of our problems are closer to being solved.” That could not be further from the truth.

Experiences with Health Care Providers
When visiting a gynecologist, many WWPD get put into very uncomfortable positions in order for the exam to be done properly. In many cases, though, the speculum can be turned upside down so that a woman does not have to be moved. Blue Belle(3) stated that she has to ask for special accommodations when making her doctor’s appointments and then reminds the nurses when she arrives. If they are not willing to provide this, she will leave and search elsewhere for a more accessible doctor, reporting the incident to her insurance company and disability advocate. She recently shared with me some of her experiences when visiting her gynecologist.
She gets put into the same cold room as other women without a disability, is told to strip from her waist down, then make herself comfortable on the table and the nurse will be back in shortly to check on her. Blue Belle has mobility issues so therefore, is usually still sitting in her chair when the nurse comes back in to check on her, flashing everyone in the hall because the nurse had fully expected Blue Belle to be undressed and on the table within five minutes. Because she is not, she gets her next instruction, to “hop up” on the table. She thinks, “Sure, in my next lifetime since I’ve never hopped anywhere in this lifetime.” Then she stares at the door until they come back in and say, “Oh, you’re not on the table.” Sometimes they will have an accessible and/or friendly assistance table but will leave her in the stirrups while they go and get the doctor, which sometimes could take several minutes. Leaving anyone in this position can leave one feeling vulnerable and at a loss for control.

Her body gets placed into all sorts of uncomfortable positions during this part of the exam and she usually leaves in a great deal of pain and so to be left in such a position only exacerbates the problem. The nurses have even suggested for her to bring a friend. Who would you trust to go into a gynecological exam with you? You would have to be able to trust that person to put your feet up in the stirrups, to help negotiate your body into positions that it just does not want to make, or to speak up for you or with you in order to remind the doctor of their “client”: “The client is the woman and person in whom you are treating; she is not just a slab of meat. Please remember your client and talk to her because I am just here to assist with the body but she does have a brain and is able to make pertinent decisions herself.” She then went on to say that her partners usually get extremely angry by the attitudes and treatment before, during and after her exam that they want to go straight to a government office to complain about the state of disabled health care in this country.

The accessible and/or friendly assistance examining table mentioned above was invented by Sandra Welner(19), M.D., in order to make gynecological exams much easier, safer and more comfortable for WWPD. The features of this table include (19):
* The examination table lowers to wheelchair height with the press of a lever to allow for easy transfers.
* No more awkward, dangerous or humiliating lifting will ever be needed.
* Strong, adjustable hand rails for patient safety, independence and security.
* Interchangeable foot attachments allow for choice between regular gynecologic stirrups and custom-designed leg holders that encase the whole foot with soft cushioning and security straps. These foot-leg boot supports can adjust to the most spastic, contracted, or limited range extremity.
* Different leg lengths? Different knee flexion/extension capacity? Different hip joints abduction/adduction capabilities? These concerns are not an issue with this custom-designed table. The table can accommodate any patient's physical ability or limitation. The patient can be treated with dignity and respect.

The attitude of the doctors in which WWPD have chosen to see has also been found to be one of the greatest barriers in their search for accessible care. WWPD have a greater chance of having a negative experience when seeking care from either their gynecologist or primary care physician than a woman without a disability because of the doctor’s, and his/her staff, inexperience and lack of training. Whether male or female, doctors can have a negative attitude, use discriminatory language, stereotype, not have the correct knowledge about the patient’s specific disability and/or lack the proper instruments to give the woman the best care. WWPD report that their health care providers rarely initiate any discussions regarding sexuality. Health care providers need to take responsibility for this but also offer assistance rather than avoiding or overemphasizing the issue.(14)

“Part of the reason why I didn’t see a gynecologist until I was 28 years old was because I was scared to go because I was afraid of what she would tell me. I was afraid that she would say you can’t have sexual relations. And in my early twenties, that wasn’t a problem because I didn’t have a boyfriend. I blocked it out is basically what I did. I just didn’t want to find out. Another scary thing for me is going to the gynecologist and finding out that I may not be able to carry a child.” (33-year old woman with cerebral palsy) (10)

LJ has also reported negative attitudes from doctors, nurses and others in the medical profession. They have seen her as a Crohn’s disease “inflicted person” instead of a woman who just happens to have a chronic illness attached to her. She has retold many nightmarish stories of trips to the emergency room where she is usually left undiagnosed. LJ’s mom and sister constantly blame her for developing a chronic illness and not getting better – they claim she does not “push herself hard enough.” It took two full years of constant testing to get a final diagnosis which is short considering most women will end up waiting ten years to get one. Women in general are the most commonly misdiagnosed so one can only imagine the frustrations when trying to get a disability officially diagnosed.

One such journey was taken by Diane Kholos Wysocki (8) who was correctly diagnosed with von Willebrand’s Disease (a bleeding disorder) after eleven years of fighting for one, at the age of 39. She had a partial hysterectomy in 1983, which resulted in massive bleeding under the skin. This occurrence finally prompted the consultation of a hematologist who first diagnosed her with hemophilia because von Willebrand’s Disease was not possible since it was so rare for women to have a bleeding disorder. Approximately ten years later, this ended up being exactly what she had.

WWPD often have no control over how their bodies are “probed” and looked at, often becoming objectified throughout the medical process. (4) Women recount the numerous medical exams which were done in front of several male doctors who, to them, were just a bunch of strange men who happened to have medical degrees as well as “regular routines such as dressing ourselves, or other activities are observed by doctors while on their ‘rounds’, as this is seen as an excellent training for new doctors.”

Many women have been subjected to the experience of having to display their bodies to groups of male doctors for the sake of “medical treatment.” (4) Sometimes they are asked to strip and walk in front of a group of doctors so they can better assess what the physical problem is, or videos and pictures are taken of that are used in classes as educational tools for future doctors. Blue Belle states that when she was a kid, she thought the phrase, “Dr. X, come in here, you won’t see this again in your career” was part of her name and LJ recalls a time, while having her rectum examined, she looked back to see ten male Japanese doctors staring at her and talking amongst themselves. All of this is done without their knowledge, consent or any regard to their needs to have control over their own bodies or control over who sees them.

Some women who have a physical disability have also undergone difficult surgeries only to end up in more pain or discomfort and sometimes even alter the physical state of their body, all for the hope that they will look “normal”. This can push some women with disabilities to gain control over their bodies through bulimia, anorexia, severe dieting or other forms of bodily mutilation.

Accessibility and the ADA
When Blue Belle had to visit a doctor’s office for a severe sinus infection recently, she found that “their handicapped slots don’t properly accommodate the handicapped and they aren’t aligned with space so cars don’t crowd them. Then, when it snows, the plow just dumps snow next to the slots which makes the concept a joke.” The “restrictions” on most handicap parking spaces have come to include just about everything from someone having a broken ankle or a brain tumor to someone with a learning disability or who really does have a physical disability. While having a broken ankle might feel like a disability, it is temporary; the person will become able again once the cast is taken off.

“Many medical facilities have numerous architectural barriers such as non-elevating exam tables and lack of platform scales to weigh person who use a wheelchair. Even if the facility is architecturally accessible, furniture placement can make the examination room functionally inaccessible.”(14)

The American with Disabilities Act (ADA) (1) does not include accessibility once in a public facility, just that persons with a disability be able to access the facility and have a restroom stall as well as parking spots for them. The number one problem is, until recently, many parking spaces were not accessible to vans nor were the wheelchair accessible stalls in restrooms wide enough for a chair to get through, which is required by the ADA. “Elevators are generally not required in facilities under three stories or with fewer than 3,000 square feet per floor, unless the building is a shopping center or mall; the professional office of a health care provider; a terminal, depot, or other public transit station; or an airport passenger terminal.”(2) It does specify that all accommodations that make it easier for a person with a disability should be made but within reason. In other words, if it is not cost efficient in the long run, than it is not necessary. The problem with the ADA becoming so vague is that those that really do need this get looked upon differently, as if they are just trying to park closer or to get preferential treatment.

General Information on Virginia
Virginia currently ranks 49th out of 51 states (including the District of Columbia) in its total percentage of monies spent on mental retardation/developmental disability (MR/DD) community services while ranking 47th in overall fiscal effort and 46th in the amount spent on education. In 1977, Virginia was ranking among the top thirty.
The Commonwealth ranks 13th in the amount of capital, therefore making its lack of attention a question of priorities for public spending.

As an example, somehow Virginia Governor Mark Warner managed to find the necessary funds to reopen the previously closed DMV offices, yet continues to cut funds for community service programs such as those serving the MR/DD population. Medicaid and Social Services are just two organizations that are taking some of the biggest hits. In addition, from 1977 to 1992, Virginia only spent a little over $100 million on community programs for people with MR/DD.(16)

It is hard to think of something outside of ourselves especially since we get into living our daily lives and tend to not think about it – almost an out-of-sight, out-of-mind philosophy. Hopefully this subject has made readers more aware of their own biases and misgivings. Whenever you go down the street, do not think that women who use a chair can merely get up anytime they want and walk around. Sit down and talk to them instead, do not be afraid. Get down on their level, crouch or sit down next to them so that they will not have to crane their neck. You might find that they have had boyfriends and/or girlfriends, a job, as well as many other experiences just like other able-bodied people have had. You can start being an advocate for disability rights by mailing letters or calling your state representative to show your support for laws and regulations regarding accessibility and funding of community service programs. Or, more simply, you be an everyday voice for inclusion by reminding others in society that everybody is special, no matter what they look like on the outside.

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