This opinion article was written by Kristin Duquette, disability rights advocate, Team USA athlete, and former Obama White House appointee, and co-author Cailin Crockett, former advisor on disability, ageing and women’s health in the Obama Administration.
29 years ago this summer, the United States signed into law the Americans with Disabilities Act (ADA), which for the first time federally codified disability as a category of discrimination in all aspects of public life, including employment, transportation, education, housing, and healthcare.
This landmark law not only established baseline protections for persons with disabilities, but also laid the foundation for affirmations of sexual and reproductive health and rights, including protections in the workplace for pregnant women, and persons living with HIV.
Seventeen years after the ADA was passed, the United Nations introduced the Convention on the Rights of Persons with Disabilities (CRPD), inspired in large part by the ADA.
A slow road to progress
Despite the importance of the ADA in advancing access to healthcare, progress on sexual and reproductive health care for women and girls with disabilities has been slow in the United States.
Physical, attitudinal, and policy barriers too often result in subpar services from medical providers. And the persistence of myths about disability and sexuality prevent youth with disabilities from obtaining essential sexual health education.
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According to the World Health Organisation (WHO), the global disability population grapples with similar themes of discrimination, stigma, and inaccessible sexual and reproductive health services — despite the fact that Article 25 of the CRPD explicitly affirms the right to healthcare on an equal basis as persons without a disability.
The lack of progress in mainstreaming an inclusive, compassionate approach to sexual and reproductive healthcare for patients with disabilities is especially unacceptable given that as many as 1 in 5 women in the United States (and 10% of all women globally) has a disability of some kind.
Politically correct and uncomfortable
This year, I’m honouring the legacy of the ADA and the promise of the CRPD by sharing my story as a woman with a disability navigating what is taken for granted by so many as a routine procedure: a Pap test .
I was first diagnosed with muscular dystrophy at the age of 9 and currently require a motorised scooter for mobility. For years my body has been looked at, poked and pried by myriad health professionals. But, when I recently went for a common preventive sexual health exam, I was surprised and disappointed to feel like my disability was an inconvenience to my provider.
Disabled bodies are like all other human bodies — beautiful, imperfect, and deserving of quality care
When my appointment began, I immediately felt out of place.
The nurses who brought me into the doctor’s office looked me up and down, giving me the sense that they did not know what to do with my chair or my body. I was anxious and uncomfortable, and didn’t feel the trust and confidence I should have from a team of medical professionals.
Parts of my body felt unsafe and shaky as I coached the nursing staff on how to guide my legs and help me onto the exam table.
At one point, I asked the gynaecologist, “how often do disabled women come in for check-ups?”
“We have some here and there,” she said. Her response, though an attempt at being politically correct, felt like being told, in so many words, that patients with disabilities were not even an afterthought.
A hidden inequality
While gender-based inequities in healthcare are finally being discussed more openly, tackling long taboo topics like the minimisation of women’s pain by the medical establishment, and the unacceptable rate of maternal mortality amongst women of colour, gaps in care for women with disabilities remain hidden.
According to the National Council on Disability, women with disabilities are significantly less likely to receive annual pap smears and mammograms compared to women without disabilities, regardless of age.
We are also three times more likely than women without disabilities to postpone needed medical care, and some of us have reported avoiding gynaecological appointments altogether because accessible services are so difficult to obtain.
In low and middle-income countries, unmet needs for sexual and reproductive healthcare for women and girls with disabilities are even worse. Complications during pregnancy and childbirth are a leading cause of death and disability for women and girls in many countries, impacting as many as 50 million women each year.
But disability is not only a consequence of inadequate healthcare — it is often discrimination against women with disabilities that leads to unequal or denied services.
Not all disabilities are equal
While I am sharing my experience to shed light on a largely invisible topic, I am mindful that, as a college-educated white woman living in an urban setting in a high-income country (though one without universal health coverage), I have, despite my disability, access to resources that many others do not.
Recognising the intersection of disability with other forms of oppression is critical, especially because the rates of disability are significantly higher amongst Black and American Indian and Alaska Native women in the U.S., and more than 80% of the world’s disability population lives in low and middle-income countries.
It is imperative that culturally-competent, disability-inclusive, and affordable healthcare is available for all people regardless of age, income, race, ethnicity, sexual orientation and identity, and geography. As a whole, society needs to regard sexual and reproductive healthcare with the same level of necessity as any other type of medical care for the disability community.
We need to mainstream basic competency in treating patients with disabilities, particularly in the provision of sexual and reproductive health services. Disabled bodies are like all other human bodies — beautiful, imperfect, and deserving of quality care.
No place for shame
Since ADA was passed 29 years ago, people with disabilities have been better welcomed into healthcare facilities through accommodations that literally let us through the door, like a ramp or elevator.
But 29 years later, I, and women like me, don’t feel truly comfortable making an appointment for a routine health check — because access into a doctor’s office is not the same as full and equal treatment by a provider.
This feeling is widespread among people with disabilities across the world, and magnified in low and middle-income countries where health systems have fewer resources, and basic laws for accommodation are non-existent, or unenforced. This reality is exacerbated by the absence of a fully ratified international disability rights treaty.
For true change to occur, we need to collectively humanise those who feel dehumanised. It is normal to feel self-conscious, and at times shameful around these stigmatised topics; however, I hope more women with disabilities are empowered to share their stories.
Our words have power, and I knew once I shared my story, I wouldn’t stop. — Kristin Duquette with policy commentary from Cailin Crockett
Kristin Duquette is a globally-recognised disability rights advocate, a five-time American Paralympic Record Holder, three-time Junior National Record Holder, and the former Captain of the U.S. Swim Team for the 2010 Greek Open. From December 2015 to March 2017, Kristin served inside the Obama Administration.
Cailin Crockett is a policy expert on gender-based violence, and former advisor to the Assistant Secretary for Aging and disability in the US. Department of Health and Human Services Administration for Community Living. Her work on intimate partner and sexual violence policy spans roles in the Obama White House, the United Nations Development Program, and U.S. Department of Justice
(Picture credit: Unsplash //Ryan Ubuntu Olson)