Running head: INTELLECTUAL DISABILITIES 1

Intellectual Disabilities and Equal Reproductive Rights

Old Dominion University

Leah Crouch
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INTELLECTUAL DISABILITIES

Intellectual Disabilities and Equal Reproductive Rights

Coerced sterilization was an indirect result of the term eugenics that was introduced by

Francis Galton as a method for altering genetics to improve livestock. His way of thinking

unintentionally trickled over to the alternative way of thinking of genetically controlling the

birthrate of those with various disabilities through forced sterilization (Roy et al., 2012).

According to Ashwin Roy, Ameeta Roy and Meera Roy (2012), the United States was the first

country to begin forced sterilization of disabled women for eugenic purposes. This agenda began

in the early 1900s due to Oliver Holmes, a judge promoting forced sterilization as a means of

purifying the population of mental health related illnesses (eugenics), passed the Buck v. Bell in

1927. These types of sterilization often took place under false pretenses, such as during

Caesarean births or supposed appendectomies (Roy et al., 2012). After the coerced sterilization

of over 65,000 Americans living with mental illness and developmental disabilities, a

revolutionary Supreme Court battle was fought in the case of Skinner vs. Oklahoma in 1942

stating that forced sterilization infringed upon one’s individual right to procreate regardless of

mental health (Ko, 2016; Reynolds et al., 2015). This issue continues to be relevant today as

professionals continue to question the rights of the intellectually disabled to reproduce.

Arguments for Equal Reproductive Rights

This issue of equal reproductive rights continues to be a prevalent concern primarily

among healthcare professionals and the intellectually disabled and their caregivers. Healthcare

professionals who are in favor of continual rights of the intellectual disabled stand on three

primary platforms: legal rights, the unreserved ability to mainstream people with intellectual

disabilities appropriately into society, and the aggressive training of medical professionals on

handling these often “side-swiped” situations. The first and most serious concern would be that
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of legal rights. The excerpt below is from the Committee of Economic, Social and Cultural

Rights (ESCR) that states in no uncertain terms that forced sterilization (a now criminalized form

of punishment) is illegal in the United States:

According to the ESCR Committee, accessibility requires non-discrimination, including

that “health facilities, goods and services must be accessible to all, especially the most

vulnerable or marginalized sections of the population, in law and in fact, without

discrimination on any of the prohibited grounds.” The Committee on the Elimination of

Discrimination against Women (CEDAW Committee) has provided further guidance on

non-discrimination in the provision of health services for women, noting that

reproductive health services are services that primarily women need due to their

reproductive capacity. The CEDAW Committee has then found in its General

Recommendation No. 24 that states should not restrict access to health services or clinics

to women “because they are women,” nor should they criminalize health services that

only women need or punish women who seek those services (Center for Reproductive

Rights & Women Enabled, Inc., n.d. ¶ 8).

This expert indicates that the intellectually disabled reproduce and maintain the same sexual

needs as women without intellectual disabilities; therefore, legally, they should not be punished

for seeking out care nor should the care provided be below standards compared to that given to

women without intellectual disabilities.

"My mom does everything that a regular mom does, so I never thought of her as

different, and I don't want other people to” (Keller, 2013, ¶ 4). This is the quote of a daughter

who lives with a mother diagnosed with an intellectual disability. Bonnie Brown, the mother of

fifteen year old Myra Brown, works with three specialists twenty-nine hours a week to aid her in
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everyday tasks such as paying bills. Surrounded by a supportive community, Bonnie and Myra,

as “unconventional” as this pair might seem, live in perfect harmony despite Bonnie’s

intellectual disability. ABC News described disabled parenting as a less of an oddity as it was as

recently as a single generation before (Keller, 2013). However, Bonnie still tells her daughter

Myra that overcoming public opinion and perspective, not her intellectual disability, was the

hardest task she had to overcome in her life (Keller, 2013). Anita Silvers, Leslie Francis and

Brittany Badesch (2016) speak to such misperceptions that have been adopted by many including

healthcare professionals. The first assumption that people tend to make is that women with

intellectual disabilities do not have the same competence level as comparable adults without

intellectual disabilities. Even medical professionals often disregard the need for patient consent

making the incorrect assumption that said patient with an intellectual disability would not

comprehend what is being asked of them (Silvers et al., 2016). The United Nations Convention

on the Rights of Persons with Disabilities (CRPD) attempts to rectify this mishap through its

Article 12 which requires the equal legal recognition of person with disabilities (Silvers et al.,

2016). The second assumption made is regarding a disabled persons’ sexual and reproductive

interests. It is a fault that the United States has in inhibiting the proper assimilation of people

with intellectual disabilities into mainstream society by looking at them as nothing more than

potential sexual predator victims and victims of exploitation rather than provide them with the

necessary sex education and protective contraceptives that would be provided a non-disabled

figure. This can be seen as the motivation for medical professionals not providing the sensible

medical reproductive care as they would to people of similar age and gender (Silvers et al.,

2016). Often times people with intellectual disabilities are not often offered mammograms,

noninvasive birth control or pap smears in the assumption that they are not sexually active due to
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their disability. It is a hope of this population that the problem might be rectified through proper

training of medical personnel in handling OBGYN care for those intellectually disabled (Silvers

et al., 2016).

Medical professionals have and still do often misjudge people with intellectual

disabilities assuming that a woman coming in for prenatal care is wanting an abortion or not

offering regular reproductive care such as pap smears to women that are intellectually disabled.

Medical professionals often make these calls based on the assumption that women with

intellectual disabilities are perhaps not capable of raising a child on their own despite having a

strong support system from family and friends. However, it is noted by those in opposition of

these views that often times people without intellectual disabilities share similar struggles in

raising children, so why would we single out people with intellectual disabilities (National

League for Nursing [NLN], 2017)? The NLN (2017) deals with the issue of intellectually

disabled women who often will not seek medically indicated reproductive care or prenatal care

due to a fear of negative reactions from medical professionals. Numerous women in these

situations have reported being discouraged by healthcare professionals from considering

pregnancy. Similar women already impregnated seeking prenatal care have testified that their

healthcare providers assume they came in seeking an abortion (NLN, 2017). The NLN

emphasizes the importance of being able to understand and provide proper preconception and

prenatal care for women of disabilities by being trained in how to handle situations dealing with

their medications during pregnancy, knowledgeable prenatal classes relevant to their diagnosis

and safely handling labor and delivery issues with their intellectual disability in mind (NLN,

2017).
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Arguments Against Equal Reproductive Rights

Likewise, healthcare professionals who are not in favor of providing equality but equity

stand on three equally strong platforms: the level of competence it requires to raise children

without compromising their adolescence into adulthood, the increased vulnerability of this

population in sexual assault crimes, and strain on the body of severely disabled women whose

caregivers choose alternative contraceptive methods. One of the most widely discussed concerns

regarding the reproductive rights of women with intellectual disabilities is the improper care that

children receive that in turn affects their adolescence into adulthood. While it is true that some

adults have a support system of friends, family and social services, it is equally common that

similar adults with varying levels of intellectual disabilities lack the knowledge to seek out aid

from Social Services and similar organizations to support their pursuit of parenthood. Many

adults with intellectual disabilities have limited mental function and struggle with basic life

skills, such as Bonnie Brown and her inability to do a basic job of paying her bills without the

aid of three social workers. It is popular belief that people with intellectual disabilities, due to

their limited mental function, may not fully understand the potential consequences of

participating in sexual activity (Reynolds et al., 2015). Women with more severe intellectual

disabilities may not even comprehend what is going on in their body when going through the

process of pregnancy resulting in psychological care that would otherwise not be necessary to

their intellectual diagnosis (Reynolds et al., 2015). In addition to the incompetence of some

intellectually disabled women, there is the high risk of the resulted children experiencing ill-will

towards their intellectually disabled parents. One anonymous adult referenced their childhood as

often being a burden on their mother who suffered from severe anxiety. They continued to
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express their discontentment with inheriting the intellectual diagnosis of severe anxiety (Smith,

2016). Unlike their mother, they sought therapy and worked tirelessly over their lifetime to

master best strategies in order to deal with their diagnosis in a healthy manner; however, they

stated that they would not reproduce because “having children would exacerbate my anxiety in

ways I would probably not be able to control, and in a way that is likely to burden my children—

just the way my mom burdened me” (Smith, 2016, ¶ 2). The heartbreaking question of “Why did

you do this to me?” was the response from another grown child who inherited the intellectual

disability passed down from their mother suffering from the same diagnosis of bipolar disorder

(Smith, 2016, ¶ 3). Smith (2016) emphasizes the fact that parents are the closest role models that

children have in their adolescent life, and those developing childhood experiences are often

crucial to how a young adult might approach their adult life.

The story of Pauline is a common one for people who live with intellectual disabilities.

Pauline was sexually assaulted by two boys related to her caregiver’s family. Sexual assault on

people with intellectual disabilities takes the highest rate in these types of crimes (Shapiro,

2018). These types of crimes are accompanied by the high risk of unwanted pregnancies which

produce a financial and emotional strain on people already dealing with an oftentimes

unprecedented diagnosis of an intellectual disability. While sexual assault already offers it fair

share of taxing emotional consequences, an unwanted pregnancy in a person who already

struggles with intellectual deficiencies can cause unnecessary stress, anxiety and strain on the

both the disabled person and their caregiver (Shapiro, 2018). Women with disabilities would be

taking a measure of prevention of these types of situations by requesting sterilization (Bach,

2018). This is encouraged due to the fact that over eighty percent of women living with

disabilities will be sexually assaulted, thus placing themselves at a great risk for an unwanted
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pregnancy and its accompanying consequences (Disability Justice, 2018). Women with

intellectual disabilities stand a risk four times higher than their general female counterparts of

experiencing sexual assault, and the only permanent prevention of an unwanted pregnancy and

STD-related illnesses would be through sterilization (Isogna & Fiester, 2015).

In addition to the pressure that reproduction applies to an already cognitively impaired

person, there is the consequence of bodily strain that alternative methods of contraception such

as IUDs can cause. Caregivers, often in an effort to avoid sterilization, choose contraceptive

injections or an IUD as a preventive method of unwanted pregnancy in the case of erotic

tendencies of said person or sexual assault (Isogna & Fiester, 2015). When sterilization is forced

on the back burner of choices for contraception, one would expose women to an array of

invasive contraceptive procedures that could result in trauma due to their medical diagnosis.

More specifically, there are risks for uterine perforation when a woman attempts to have an IUD

placed and it fails. She must also go through the replacement process for IUDs, which would

require the use of general anesthesia multiple times in her lifetime which can be detrimental to a

generally healthy individual, including long-term cognitive dysfunction to an already

intellectually disabled person (Insogna & Fiester, 2015; American Society of Anastesiologist,

n.d.). Because of their intellectual disability, these women have a higher risk of viewing these

procedures as a physical violation and overall humiliating event resulting in psychological

distress; therefore, caregivers and healthcare professionals need to reconsider sterilization as a

sound option for women with intellectual disabilities instead of ruling it out completely as an

inhumane form of contraception (Insogna & Fiester, 2015).

Reflection
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What once started as a method to improve livestock in the early 1900s quickly spiraled

into a hot topic international debate. While one side insists upon the preservation of the

intellectually disabled’s legal rights, the opposing side warns of the potentially tragic

consequences of the affected children (both wanted and unwanted). There are equally strong

arguments for both the pros and cons of allowing the intellectually disabled rights to reproduce.

One of the biggest takeaways from this paper would be learning to look at both sides of the coin

when dealing with sensitive matters such as this. It is imperative for one to not jump to

conclusions as these debates do not ever have a “one-size fits all” solution.
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References

American Society of Anastesiologists. (n.d.). Effects of Anesthesia. Retrieved from

https://www.asahq.org/whensecondscount/anesthesia-101/effects-of-anesthesia/

Bach, B. (2018). Reproductive choices facing women with disabilities require careful

consideration. Retrieved from https://scopeblog.stanford.edu/2018/08/13/reproductive-

choices-facing-women-with-disabilities-require-careful-consideration/

Center for Reproductive Rights & Women Enabled, Inc. (n.d.). [PDF]. Retrieved from

https://www.womenenabled.org/pdfs/WE%20and%20CRR%20Comments%20on%20CR

PD%2

0Draft%20Article%209%202014.pdf

Disability Justice. (2018). Sexual abuse. Retrieved from https://disabilityjustice.org/sexual-

abuse/

Keller, K. (2013). Disabled mother and gifted daughter lead ‘regular’ life. Retrieved from

https://abcnews.go.com/Health/disabled-mother-gifted-daughter-lead-regular-

life/story?id=1849343

Ko, L. (2016). Unwanted sterilization and eugenics programs in the United States. Retrieved

from http://www.pbs.org/independentlens/blog/unwanted-sterilization-and-eugenics-

programs-in-the-united-states/

Insogna, I., & Fiester, A. (2015). Sterilization as last resort in women with intellectual

disabilities: Protection or disservice? American Journal of Obstetrics and Gynecology,

212(1). doi:10.1016/j.ajog.2014.10.016

National League for Nursing. (2017). Pregnancy in women with disabilities. Retrieved from

http://www.nln.org/professional-development-programs/teaching-resources/ace-d/additional-
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resources/pregnancy-in-women-with-disabilities

Roy, A., Roy, A., & Roy, M. (2012). The human rights of women with intellectual disability.

Journal of the Royal Society of Medicine, 105(9), 384-389. doi:10.1258/jrsm.2012.110303

Shapiro, J. (2018). The sexual assault epidemic no one talks about. Retrieved from

https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about

Silvers, A., Francis, L., & Badesch, B. (2016). Reproductive rights and access to reproductive

services for women with disabilities. The AMA Journal of Ethics, 18(4), 430-437.

doi:10.1001/journalofethics.2016.18.4.msoc1-1604

Smith, R. I. (2016) Deciding to become a parent or not: Your stories. Retrieved from

https://www.theatlantic.com/notes/2016/12/weighing-the-pros-and-cons-of-

parenthood/509783/
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Honor Code

“I pledge to support the Honor System of Old Dominion University. I will refrain from any form

of academic dishonesty or deception, such as cheating or plagiarism. I am aware that as a

member of the academic community it is responsibility to turn in all suspected violators of the

Honor Code. I will report to a hearing if summoned.”

Signature: Leah Crouch

Date: 11/28/18