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 dictionary.com 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.