Legislative Briefing Papers on Disabled Young Women
BRIEFING PAPER #1
Health Care Overview for
Girls and Young Women with Disabilities
By Alice Wong & Corbett O’Toole
In California there are nearly half a million girls and young women with disabilities. They are members of multiple communities. As both females and people with disabilities they face restricted access to health care, education, social participation, and employment. While advances in legislation such as the Americans with Disabilities Act and medical/assistive technology have opened up opportunities for greater participation and access to services, females with disabilities are still poorly underrepresented in social and medical research, health policy, and professional training.
Only recently has research on people with disabilities shifted from a pathological perspective to a social one. Traditionally, research on people with disabilities focused on the physiological aspects of their limitations. “This focus exposes a societal view that disabled women are not whole women; rather they are seen as defective women. In fact, three-fourths of people surveyed believe that maternal disability is cause enough to restrict childrearing. Many physicians conform their clinical practice to this societal view. ”
Since the 1970s the independent living movement emphasized the social organization and construction of disability. That is, a woman with cerebral palsy isn’t necessarily “disabled” from cerebral palsy; rather, it is the exclusion from equal access to health care, transportation, education, housing, and employment that create barriers. It is very important to be aware of the multiple and shifting perspectives, not just the dominant ones, and the historical and political climate in which research is taking place.
Historically, medical professionals have viewed disabled girls and young women as defective. “To those ends, many disabled women have been violated with the instruments of eugenics: physical, communication, and clinical barriers to obstetrical and gynecological services; involuntary sterilization, forced abortion, sex segregation, and injects of harmful contraceptives; and the loss of child custody (Waxman 240).”
INFORMATION & PUBLICATIONS
Sexism, racism and ableism at the institutional level affect the health education information and publications that are available to disabled girls and young women. Much of the literature on sexuality and disability has centered on men with spinal cord injuries and penile function. In research or popular magazines, journal articles, the Internet, books there is very little on women with disabilities, chronic illnesses, and sexuality.
Finding information that connects disability with sexuality and sexual and reproductive health is an important goal for adulthood. When one disabled young woman found an article about her disability and pap smears, she was thrilled. Without the article, she had trouble convincing providers that she experienced pain during gynecological exams and required a smaller speculum. With the article, she had a source of information and power that validated her and gave her the evidence to make additional decisions. Previously, she had Pap smears every year and due to the pain she wanted to alternate every other year. It was against the advice of the providers and the clinics. The work she put in finding this information changed her health care. Perhaps the absence of literature and information creates a vacuum of uncertainty regarding disability and sexual and reproductive health. The vacuum mirrors the societal attitudes toward disability, women, and sexuality. Disabled girls and young women want their sexuality and right to health care to be as much a priority for the medical system as it is for them.
MANAGING MULTIPLE NEEDS
Traditionally, the needs of girls and young women with disabilities have been relegated to various medical specialties. The compartmentalization of females with disabilities to specialties rather than primary care is a criticism by disability activists who claim this as evidence that doctors avoid those whom they cannot cure and reject disability as everyday part of life . The split between medical specialties and general primary care creates gaps for girls and young women with disabilities.
While negotiating through the complexities of sexual and reproductive health care, young women with disabilities shuttle to different providers for different needs. It is a mistake to assume that a woman with a disability has such “special” needs that she cannot see an ob/gyn or primary care physician. However, there are aspects of her disability that her specialist might be able to address. The challenge for young women with disabilities is managing the multiple providers, specialists, health conditions in her life and getting health care providers to address her as a whole person.
A woman with a disability can try to find a provider that can attend to her multiple needs. She may also have other providers and types of care that she needs to manage. Psychiatric disabilities, along with physical disabilities are bifurcated as if they do not relate. Processing the interactions between various treatments, medications, procedures, and information is part of the work for women with disabilities.
A common misperception is that “access” is an objective standard that is equitable regardless of gender, race, class or age. While it is often presented this way, the lack of definitions of age and gender-appropriate standards of access leads to lack of health care for disabled girls and young women. For example, an examination for young women needs accessible systems for having a gynecological examination. Also, an examination table that is adequate for an adult physically disabled male may be insufficient for a young physically disabled girl.
Disabled girls and young women are often seen in such a striated way that the multiplicity of their experience is often erased. Young women with disabilities have higher rates of substance abuse both from street drugs and from overuse of prescription medications. Yet specialized programs for addressing this problem rarely focus on issues for young women and never expect a disabled young woman to need their services. So an Asian deaf woman will rarely find a program that can provide her with accessible, culturally appropriate services.
Lack of research that includes girls and young women has led to medical misperceptions about chronic health problems that are disproportionately represented in women. Medical literature abounds with erroneous and defamatory “facts” of women’s experiences of health problems. Women with Multiple Sclerosis, chronic fatigue, chemical sensitivities, and fibromyalgia have all been mislabled as “imagining” their medical conditions when, in fact, it was the medical system’s persistent ignorance of health conditions that predominate among women.
• Specialized health care programs such as mental health, substance abuse recovery, and need to be made accessible to girls and young women with disabilities.
• Increased research on disabilities that impact young women and girls including autoimmune disorders, environmental disorders, and other chronic conditions.
• Standardized assessment tools that evaluate the level of age-specific and gender-specific accessible health care available for disabled girls and young women
• Sensitive and individualized delivery of services based on patient’s needs and abilities