Women with disabilities: Overcoming the challenges
By H. Barry Waldman, DDS, MPH, PhD, Dana Roth, PhD, Rick Rader Rick Rader, MD, FAAIDD, FAADM, DHL (Hon), Steven P. Perlman, DDS, MScD, DHL (Hon)
“Women suffer from double discrimination by virtue of their sex, as well as their disability. This results in many women and young girls being denied their basic human rights.” 1
The combination of male preference in many cultures and the universal devaluation of disability can be deadly for females with disabilities. Today, in both industrialized and developing nations with access to reproductive technology, it is becoming easier to utilize selective abortion if a fetus is considered imperfect by medical profession's or society's standards.
Legislation which permits sterilization of people with disabilities, threatens both the rights of these women to procreate and the very existence of children born with disabilities. Certain countries have laws which mandate the forced sterilization of persons with genetic defects.
“In developing countries, women are too often denied access to education, rehabilitation, labor protection, and health care because of cultural preferences for males. It is seen as a waste of resources to help them become productive members of society. Consequently, women with disabilities are the last priority in these countries and are condemned to live their lives knowing that they will never improve. Women with disabilities lacking access to health care will aggravate their disability and make it difficult for them to be rehabilitated quickly.”1
“Violence committed against women is one of the major causes of disability among women in developing countries.”1
Persons with disabilities are the world’s largest minority, representing 15% of the global population (around a billion people).
80% of women with disabilities live in developing countries.
This inequality is exacerbated for women and girls with disabilities who are members of marginalized ethnic or racial groups or part of the lesbian, gay, bisexual, transgender and intersex community.
Unemployment rates are highest among women with disabilities. The United Nations estimates that 75% of women with disabilities are unemployed and women with disabilities who are employed often earn less than their male counterparts and women without disabilities.
Gender disparities also exist in education as girls and women with disabilities are the most excluded group from primary school to higher education settings due to multiple intersecting forms of discrimination.
Women and girls with disabilities often face disproportionately high rates of gender-based violence, sexual abuse, neglect, maltreatment and exploitation. Studies show that women and girls with disabilities are twice as likely to experience gender-based violence compared to women and girls without disabilities.
Women with disabilities often are denied reproductive healthcare and at times even subjected to forced sterilization. When health care services are available, they may not be physically accessible for women with varying types of disabilities, or healthcare providers don’t know how to accommodate them.
The literature on health care indicates that people with disabilities experience worse health outcomes compared to their counterparts without disabilities. Women with disabilities are more likely to have unmet healthcare needs than women without disabilities.
The exclusion and violence against women and girls with disabilities in any country carries heavy financial and social consequences. Discrimination against persons with disabilities hinders economic development, limits democracy, and erodes societies.2,3
Women with disabilities are likely to experience more frequent mental distress than men with disabilities. Mental distress is also greater among people with disabilities experiencing poverty, unemployment, and unmet health care needs due to costs.
Compared to women without a disability, women with a disability are more likely to experience intimate partner violence including sexual and physical violence, stalking, psychological aggression, and control of reproductive or sexual health.4,5
Not just in the low middle-income countries
“To date, the situation of women with disabilities in Europe has not been given the visibility and political importance it deserves and requires. Although on the one hand, problems relating to women and, on the other, problems relating to people with disabilities are being addressed separately with increasing attention and urgency, no serious approach has yet been taken to tackle the dual form of discrimination to which women with disabilities are subjected.”6
For example: “From Great Britain: News coverage showed not only the increased risk of sexual violence and abuse faced by women with disabilities, but also how they are ignored by the police and other support services when they report this violence – mainly because of their disability. One woman was told that her disabilities (autism and post traumatic syndrome disorder) made her “not a reliable witness.”
A blind woman’s reports on repeated sexual assaults were dismissed, because she could not “identify her perpetrators.”7
“Female doctors make a difference for female patients.”8
There have been dramatic increases in the proportion of females entering medical schools (e.g. in 2021, 53.7% of the first year matriculated students in U.S. medical schools were female).8 “Multiple recent papers suggest female patients receive better care from female physicians.” 7
Similarly, there has been an increase in the proportion of females among dental school graduates (from 46.0% in 2009 to 50.6% in 2021) and females dentists (from 24.1% in 2010 to 46.0% in 2021).9
The Centers for Medicare & Medicaid Services Office of Minority Health (CMS OMH) developed a set of directions to support clinical and non-clinical staff in health care settings as they collaborate to improve quality, satisfaction, and physical accessibility for people with disabilities. Physical accessibility refers to factors in the physical environment affecting access to care for individuals with disabilities.10
Despite dramatic efforts by countless government agencies, private organizations, and health care professions to improve the conditions for women with disabilities, we cannot neglect the cruelest reality that:
“About 1 in 4 women have experienced contact sexual violence, physical violence, and/or stalking by an intimate partner during their lifetime. Research has shown that women with a disability are more likely to experience intimate partner violence (IPV) than those without a disability. In fact, researchers found that, compared to women without a disability, women with a disability were significantly more likely to report experiencing each form of IPV measured, which includes rape, sexual violence other than rape, physical violence, stalking, psychological aggression, and control of reproductive or sexual health.”11
In a recent study reported from France, 90% of women with autism reported to have suffered sexual violence. Results also revealed that 75% of the victims were assaulted multiple times, with two thirds first abused when they were able to report the assaults.12
A research study carried out by a leadership group of women with Disabilities at the Beit Issie Shapiro, Israel, reports on their negative personal experiences with health care providers and medical systems, especially in the area of women's health. The women in the study ranged from 27-70 years of age and individuals with various disabilities and evaluated routine visits, ultrasound, mammography, tests, fertility treatments, childbirth and/or surgeries.
Lack of accessibility parameters (physical, sensory and service), professional proficiency, and knowledge were all thoroughly discussed in the research report.
The conclusions indicate that women with disabilities continue to face humiliating, disrespectful, and insulting attitudes when interacting with Israel’s medical system.13
“Our understanding of women's health has changed drastically over the past few decades. For much of modern medicine's history, experts say, doctors largely followed a philosophy of bikini medicine, which theorized that men and women were medically interchangeable save for the parts of a women's anatomy that could be covered by a bikini. This, coupled with the paradoxical belief that men were easier to study, meant that women were routinely excluded from medical research, and, consequently, from the understanding of the various ways diseases present in people.”14
It is clear that much work needs to be done to positively impact the quality of health care for women.
References
United Nations Enable International norms and standards relating to disability. Available from :https://www.un.org/esa/socdev/enable/comp504.htm
US Aid. Advancing women and girls with disabilities. Available from: https://www.usaid.gov/what-we-do/gender-equality-and-womens-empowerment/women-disabilities
Matin BK, Williamson HJ, et al. Barriers in access to healthcare for women with disabilities: a systematic review in qualitative studies Available from: https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-021-01189-5
CDC. Supporting Women with disabilities to achieve optimal health. Available from: https://www.cdc.gov/healthequity/features/women-disabilities/index.html
Beleza ML. Discrimination against women with disabilities. Available from: https:rm.coe.int
Council of Europe. Addressing the invisibility of women and girls with disabilities. Available from:
McIntyre A. Female docs make a difference for female patients. Available from: https://tradeoffs.org/2022/02/08/women-doctors-female-patients
Murphy B. Women in medical schools: Dig into latest record-breaking numbers. Available from: https://www.ama-assn_org/education/medical-school-diversity/women-medical-schools-dig-last-record-breaking-numbers
AMA: Kane CK. Recent changes in physician practice arrangements: private practice dropped to less than 50 percent of physicians in 2020. Available from: https://www.ama-assn.org/system/files/2021-05/2020-prp-physician-practice-arrangements.pdf
CMS. Modernizing health care to improve physical accessibility: A primer for providers. Available from: https://www.cms.gov/files/document/cmsmodernizinghealthcare.pdf
CDC. Disability and Health Information for Women with Disabilities. Available from: https://www.cdc.gov/ncbddd/disabilityandhealth/women.html