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We were sent a question about sterilization. The question came with a link to an article from Great Britain about a family who requested a sterilization procedure for their “21-year-old daughter with Down’s syndrome.” (In the US we call the syndrome Down syndrome; in the UK it is called Down’s syndrome).
“The judge stated, "It is my judgment that sterilization would be a disproportionate (and not the least restrictive step) to achieve contraception for the woman in the future."
He said there were less restrictive methods of "achieving the purpose of contraception" and, if contraception became necessary, they should be tried.
He said the woman was part of a "loving" and "supportive" family and said he had read "nothing but praise" for her parents.
The judge also said the woman's parents had concerns about how pregnancy would affect their daughter.
"(They) have become increasingly concerned that as 'K' becomes older their ability to control and supervise aspects of her life will be reduced," he added.
"Were she to become pregnant at any time in the future they believe this would have a seriously adverse effect upon her."
There was clearly concern and supportive points for both views but ultimately the judge decided against allowing the sterilization procedure to be done. A news story on the case can be found at https://www.breakingnews.ie/world/sterilisation-for-woman-with-downs-syndrome-disproportionate-ukcourt-rules-584898.html.
What is the history? What are the issues?
In the chapter “Social Policy Toward Intellectual Disabilities” of the book The Human Rights of Persons with Intellectual Disabilities: Different but Equal, authors David Braddock and Susan Parish describe the Eugenics movement. According to the chapter, from about 1880 to World War II, people with “intellectual disabilities were viewed as …social menaces.” The Eugenic movement sought to eliminate the “problem” and one method was forced sterilization.
Furthermore, the Eugenics model used in the United States was used by Adolf Hitler in his efforts to develop a “Master Race.” More information can be found at https://hnn.us/articles/1796.html. Sadly, forced sterilization of people with intellectual disabilities did not end with the end of World War II. Even today, efforts continue to stop the practice in some places. For an example, see this article from Australia from 2012 – https://theconversation.edu.au/time-to-stop-the-forced-sterilisation-of-girls-and-women-with-disability-9812.
The website of the nonprofit organization Human Rights Watch describes “forced sterilization” and “coerced sterilization”:
“Forced sterilization occurs when a person is sterilized after expressly refusing the procedure, without her knowledge or is not given an opportunity to provide consent. Coerced sterilization occurs when financial or other incentives, misinformation, or intimidation tactics are used to compel an individual to undergo the procedure. Women with disabilities are particularly vulnerable to forced sterilizations performed under the auspices of legitimate medical care or the consent of others in their name.“
They recommend:
“The free and informed consent of the woman herself is a requirement for sterilization. Only women with disabilities themselves can give legally and ethically valid consent to their own sterilization. Family members (including spouses and parents), legal guardians, carers, medical practitioners, and/or government or other public officers, cannot consent to sterilization on any woman’s behalf.
Perceived mental incapacity, including medically or judicially determined mental incapacity, does not invalidate the requirement of free and informed consent of the woman herself as the sole justification for the sterilization.
As part of any process to ensure fully informed choice and consent, women with disabilities must be provided with information that sterilization is a permanent procedure and that alternatives to sterilization exist, such as reversible forms of family planning.”
You can get more background information at https://www.hrw.org/news/2011/11/10/sterilization-women-and-girls-disabilities as well as at https://www.opensocietyfoundations.org/sites/default/files/sterilization-women-disabilities-20111101.pdf.
With that background, a much greater awareness has developed around the issues of human rights and consent for sterilization of people with intellectual disabilities both in children and adults.
In a position paper in 1999, The American Academy of Pediatrics stated:
“A person who can demonstrate adequate capacity to comprehend the facts and associated concepts and express choices about these matters can provide informed consent or refusal for contraception, including sterilization.
When the individual involved lacks the ability to consent to or refuse sterilization, the question becomes whether a surrogate may ethically authorize the procedure. Some individuals believe in an inherent freedom or legal (constitutional) right to reproduce, regardless of abilities to appreciate what it means to become a parent. From this perspective, sterilization will rarely, if ever, be acceptable.
As advocates for our patients, pediatricians have an obligation to make certain that persons with developmental disabilities are treated in accord with state and federal law, and with the respect for their interest in procreation and the responsibilities involved in bearing and raising children. If sterilization is legally permissible on the authority of parents or other legal guardians and is chosen as the best course of action, substantial effort should be made to communicate the facts and implications of the sterilization to the patient. To the extent possible, the patient should participate in planning for the procedure.”
If you would like further explanation, please visit: https://pediatrics.aappublications.org/content/104/2/337.full
In Illinois, in 2009, a state law was passed to protect people with disabilities who have guardians against unnecessary, unconsented, or forced sterilization. According to the law, a review must be completed and an advocate provided for a person with a disability before a guardian’s request for sterilization of a ward with a disability can be carried out.
According to an article in the Illinois Times, “This doesn’t prohibit sterilization — what it does is require an independent decision made by a judge as to whether this is an appropriate path to follow…the decision isn’t made between the guardian and the doctor. It has some oversight.” To see the full text of the article, visit: https://www.illinoistimes.com/springfield/new-law-prohibits-involuntary-sterilization/Content?oid=11441492. To see the full text of the act, visit: https://www.ilga.gov/legislation/publicacts/fulltext.asp?Name=096-0272.
So what are the options?
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People with intellectual disabilities and their families should discuss the issues in ways that each can understand.
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Discuss the issue with your health care provider.
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Consider alternative methods of birth control.
Education, education, education
Role of Families in Teaching:
Making Information Understandable
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Pay attention to how a person learns best
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Use pictures or other multi-sensory techniques
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Use simple, unsophisticated language
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Check understanding
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Repeat, review, and reinforce information
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“In the moment” – teachable moments
If a person with an intellectual disability expresses interest in being a parent, explore the realities of parenthood:
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School and community coursework
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Supervised childcare
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Career exploration, job training, volunteer experiences
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Mentoring experiences