Supreme Injustice, Supreme Indifference: Roe v. Wade and the Disability Community

 

by Gloria Satriale & Gina Kernicky

A Decision with Tragic Foreseeable Consequences

On June 24th, lightning struck, killing reproductive rights in the United States of America. 

For years, the storm has been brewing, clashing the ideology of politicians, right-wing extremists and religious groups, and the most basic civil rights of all Americans. Watching the forecast, at least 20 states postured themselves for an immediate response to rapidly ban abortion in nearly all circumstances, including rape, incest, fetal genetic and medical abnormalities, and many instances of maternal morbidity.



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Far-Reaching Implications for Those Least Able to Advocate for Themselves

The socioeconomic and healthcare inequities that have already been decried in the USA and exacerbated by the COVID-19 pandemic will inevitably exponentially increase as safe abortion will no longer be equally accessible to all. The divide in social determinants to a quality of life will widen leaving the disadvantaged more marginalized than ever and out of the conversation. 

The abortion debate frequently targets the “use of abortion as contraception” and the fundamentalist position that abortion is legalized murder. People of reproductive age with developmental disability have not typically figured in these discussions, but those of us parenting young women who are severely disabled or clinicians dedicating their lives to increase the quality of theirs, can only shudder as we ponder what may now happen to many of our patients, clients, and loved ones as a result of the Supreme Court Decision.It is a dark day when ideology rather than medicine drives decisions regarding women’s health.

Disabled without Reproductive Choice: A Recipe for Harm

As of 2021, the CDC estimated that 1 in 44 US children will be diagnosed with autism, and at least 40% of autistic individuals also have intellectual disability (ID). It is globally estimated that 1% of the US population has an intellectual disability, or an IQ less than 70, and significant impairments in adaptive living skills.

A quick Internet search reveals that in 2020 approximately 64.5 million women of reproductive age were living in the US; this number is expected to increase to approximately 77.7 million by 2025. So, currently, there exist in the USA somewhere between 645,000 to 777,000 women with ID who could become pregnant.

It is well-known that medical, psychiatric and behavioral comorbidities abound in ID and autism, and high-support-needs individuals require lifelong 24/7 adult supervision, support and services to reach even a modicum of personal safety, health and quality of life.

Heightened Risk for SA among Disabled People Increases Risks

Disabled individuals are at heightened risk for abuse, and that includes sexual abuse, assault and rape. A 2021 meta-analysis by Tomsa et al. documented a 32.9% prevalence rate of sexual abuse in adults with intellectual disability, with prevalence increasing from mild to severe ID.  As a result of such abuse, disabled girls and women, some of whom are profoundly impaired and require lifelong intensive support and care to accomplish the most basic activities of daily living, can and do involuntarily become pregnant.

These women may also have medical, genetic or psychiatric comorbidities, or take various medications, that render pregnancy quite dangerous for mother and fetus/baby.

Furthermore, the international medical literature has documented increased risk of multiple serious pregnancy and birth complications for women with intellectual disability.

A 2012 Swedish study reported:

  • heightened risk of preterm labor
  • small-for-gestational-age infants
  • low Apgar scores,
  • stillbirth and perinatal mortality 

A 2015 US study documented increased risk of preterm birth, pre-eclampsia, Caesarian section, low birth weight and stillbirth.

A 2015 Canadian study confirmed similar increased risk of pre-eclampsia, preterm birth and growth restriction, as well as stillbirth and neonatal morbidity and mortality [4]. This same study documented higher rates of post-partum hemorrhage in mothers with ID, a finding that was duplicated in a 2020 Australian study with the chilling reminder that postpartum hemorrhage is one of the leading causes of childbirth-related morbidity and mortality.

Forced Birth and the Intellectual Disability Community

Furthermore, these women may have absolutely no capacity to care for a child. Many adults that the National Council on Severe Autism represents depend on ever-dwindling Center for Medicaid Services for their own care needs. 

But what if these women, unable to care for themselves, had become pregnant? Is it appropriate for an individual who cannot care for themselves to be forced to give birth?

Many individuals living with a significant disability are required to manage symptoms with medications that could have highly deleterious effect on fetal development. Forcing individuals with severe disabilities to carry a pregnancy to term would, in many cases, result in significant trauma and worsening of their already highly compromised life circumstances. Yet in up to 40% of US states, they may no longer be able to readily access safe pregnancy termination services. 

Then there is the question of care and support services following a birth.

Disability support services in the United States presently cannot provide for the population of disabled individuals now. To ask the most common questions up-front: Who will care for these mothers and their children? Who will pay for it?

Health care and specialty needs of individuals with ASD are unmet:

  • 58% of individuals diagnosed in childhood with ASD remained unemployed after graduation from High School
  • 83% still live at home with their aging parents
  • 85% of families of individuals with ASD cannot access support services
  • Over 800,000  individuals with disabilities are currently on the waiting list for Medicaid services

Is there sufficient capacity in an already overburdened and insufficient support system to deliberately and forcibly add to it?

Formal Responses from Medical, Disability and Mental Health Organizations

In response to the Supreme Court Decision, the American Academy of Family Physicians announced:

It is important to keep decisions medical decision in the hands of those trained to address them. Giving the states the power to interfere is not in the best interests of Women’s health in America.  Patients must be able to depend on their physicians to help them make critical decisions about their personal health. Physicians must be able to practice medicine that is informed by their years of medical education, training, experience and the available evidence, freely and without the threat of punishment, harassment or retribution.  This Court’s decision prevents these basic tenets of health care. [7]

To me and those in the disability community, this Court’s decision is an arbitrary constriction of and prejudicial to the legitimate health care needs and concerns of the disabled and is tantamount to usurping the role of the physician allowing politicians to practice medicine without a license.

Many national mental health and disability organizations promptly denounced Friday’s ruling, including the American Academy of Child and Adolescent Psychiatry, the American Psychiatric Association, the American Psychological Association, the Autism Self-Advocacy Network, the Association of University Centers on Disabilities and the American College of Medical Genetics, and others will follow suit.

The United States no longer universally guarantees fundamental personal freedoms for its female citizens, and further reproductive health inequities will invariably be witnessed amongst the most vulnerable groups of American women. The realities of the consequences of an absolute ban on termination of pregnancy for developmentally and intellectually disabled women and pregnancies determined through prenatal genetic testing to possess severe, incurable disability, they are not few and must not be forgotten.

 


 

Gina Kernicky is double graduate of the University of Miami, with degrees in Psychology and Criminology. She received a Master’s Degree in Social Service from the first Social Work program in the country, Bryn Mawr Graduate School of Social Work and Social Research (clinical application track) at Bryn Mawr College.

She has over 10 years of professional experience in the mental health, therapeutic, and counseling fields, with a specialization in autism spectrum disorder (ASD) and disability. As a sibling of an individual low on the ASD spectrum, in addition to numerous other medical and mental health diagnoses, Gina has over 30 years of direct experience with individuals and families dealing with ASD.

Currently, Gina works as the Director of Social Services, a department she founded to teach Social and Emotional Learning (SEL) to take on and better serve individuals higher on the spectrum as well as creative therapies such as art, music, and movement, at the PAAL (Preparing Adolescents and Adults for Life) program for individuals with a primary diagnosis of ASD under MECA (Mission for Educating Children with Autism).

Gina also operates as an independent Alternative Medicine Counselor and Cannabis Advocate.

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