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FRONTIERS OF LAW IN CHINA
VOL. 11 MARCH 2016 NO. 1
DOI 10.3868/s050-005-016-0005-6
FOCUS
DISABILITY RIGHTS IN CHINA AND IN THE WORLD
PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND
PARENTING RIGHTS: AN INTERNATIONAL AND COMPARATIVE ANALYSIS
Robyn M. Powell
∗, Michael Ashley Stein∗∗
Abstract Despite important gains in human rights, persons with disabilities — and in
particular women and girls with disabilities — continue to experience significant
inequalities in the areas of sexual, reproductive, and parenting rights. Persons with
disabilities are sterilized at alarming rates; have decreased access to reproductive health
care services and information; and experience denial of parenthood. Precipitating these
inequities are substantial and instantiated stereotypes of persons with disabilities as
either asexual or unable to engage in sexual or reproductive activities, and as incapable
of performing parental duties. The article begins with an overview of sexual,
reproductive, and parenting rights regarding persons with disabilities. Because most
formal adjudications of these related rights have centered on the issue of sterilization,
the article analyzes commonly presented rationales used to justify these procedures over
time and across jurisdictions. Next, the article examines the Convention on the Rights of
Persons with Disabilities and the attendant obligations of States Parties regarding rights
to personal integrity, access to reproductive health care services and information,
parenting, and the exercise of legal capacity. Finally, the article highlights fundamental
and complex issues requiring future research and consideration.
Keywords disability, Convention on the Rights of Persons with Disabilities, human rights,
parenting, sexual and reproductive rights
∗ Robyn M. Powell, Lurie Institute for Disability Policy Fellow; Disability Law Attorney; Ph.D student, at
Heller School for Social Policy and Management, Brandeis University, Waltham, US. Contact:
rpowell@brandeis.edu
∗∗ Michael Ashley Stein, Executive Director, Harvard Law School Project on Disability; Extraordinary
Professor, University of Pretoria Faculty of Law, Centre for Human Rights; Visiting Professor, at Harvard
Law School, Cambridge, US. Contact: mastein@law.harvard.edu
We thank János Fiala-Butora, Janet Lord, and Charles Ngwena for their comments on earlier drafts; and
are especially grateful to Matthew Smith for his background research and critiques of these issues. Parts of
this article were presented as a keynote speech at a conference hosted by Frontiers of the Law in China, as
well as in talks presented at the Centre for Human Rights, University of Pretoria; the Harvard School of
Public Health Global Human Rights Course; the Hong Kong Summer Institute on Disability Rights; and the
Norwegian Centre for Human Rights.
54 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
INTRODUCTION ...................................................................................................................... 54
I. RATIONAL E S F O R DEPRIVING RIGHTS ....................................................................... 59
A. Eugenics-Based Rationale ....................................................................................60
B. “Best Interest” Rationales....................................................................................62
1. “Best Interest” of the Individual...................................................................... 62
2. “Best Interest” of the Individual and Others.................................................... 64
C. Unfitness to Parent ...............................................................................................66
II. CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES ............................... 68
A. Personal Integrity................................................................................................71
B. Reproductive Health Care Services and Information ..........................................72
C. Family and Parenthood.......................................................................................73
D. Legal Capacity ....................................................................................................75
III. AREAS OF FUTURE RESEARCH ................................................................................ 78
CONCLUSION.......................................................................................................................... 84
INTRODUCTION
In 2012, in the US, the parents of Mary Moe, a 32-year-old pregnant woman with a
psychiatric disability, petitioned a court for her guardianship in order to precipitate an
abortion.1 Despite Moe’s fervent opposition owing to religious beliefs, the trial court
appointed her parents as co-guardians and authorized that she be “coaxed, bribed, or even
enticed…by ruse” into a hospital for an abortion.2 The judge also ordered that Moe be
sterilized “to avoid this painful situation from recurring in the future.”3 The decision was
reversed on appeal, with the appellate court noting in regard to the sterilization order, “No
party requested this measure, none of the attendant procedural requirements has been met,
and the judge appears to have simply produced the requirement out of thin air.”4
In Israel, in 2015, Ora Mor Yosef, a woman with a physical disability unsuccessfully
challenged that country’s surrogacy laws.5 Yosef always wanted to be a mother but her
doctors cautioned that she would likely face significant complications from pregnancy
due to her disability.6 After a tumultuous and lengthy endeavor, Yosef had a surrogate
1 Guardianship of Mary Moe, 960 N.E.2d 350, 352–353 (Mass. App. Ct. 2012).
2 Id. at 353.
3 Id.
4 Id.
5 This narrative is adapted from Emily Harris, Quadriplegic Israeli Woman Challenges Surrogacy Rules
and Loses a Child, NPR (Jul. 16, 2015), available at http://www.npr.org/sections/parallels/2015/07/16/
419148164/disabled-israeli-woman-challenges-surrogacy-rules-and-loses-a-child (last visited Jan. 19, 2016).
See also Doron Dorfman, The Inaccessible Road to Motherhood
—
The Tragic Consequence of Not Having
Reproductive Policies for Israelis with Disabilities, 30 Columbia Journal of Gender and Law, 49 (2015)
(analyzing the Yosef case from a disability studies perspective).
6 Id.
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 55
child through her niece who underwent the procedure in India and gave birth in Israel.7
There, child welfare officials immediately declared the newborn to be in “danger” and
placed her in foster care.8 Yosef fought for more than 2 years to regain custody of her
daughter.9 According to the Israel Supreme Court, Yosef’s case marks “a crossroad
between advanced technology, individual disability, the universal yearning for parenthood
and the evolution of Israeli law.”10 However, because they are not biologically connected,
Israeli courts refuse to recognize Yosef as the child’s mother.11
Across the globe, more than 1 billion individuals, approximately 15% of the world’s
population, live with disabilities.12 Although different in many respects, Moe and
Yosef’s respective cases illustrate a common and continuing phenomenon affecting this
population. Despite important gains in human rights, persons with disabilities — and in
particular women and girls with disabilities13 — continue to experience significant
inequalities in the areas of sexual, reproductive, and parenting rights.14 Central to these
inequities are substantial and prevailing stereotypes15 that affect girls and women with
7 Id.
8 Id.
9 Id.
10 Id.
11 Id.
12 World Health Organization & World Bank, World Report on Disability 29 (2011), available at
http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf?ua=1 (last visited Jan. 19, 2016) (the
“World Report on Disability”).
13 Roberta Cepko, Involuntary Sterilization of Mentally Disabled Women, 8 Berkeley Women’s Law
Journal 122, 123–124 (1993) (discussing the US, “[o]nly a few of the dozens of cases regarding involuntary
sterilization involve the sterilization of males. Therefore, sterilization practice is interwoven with the issue of
control of female reproductive rights and, to some extent, of female expression”). But see In re Guardianship
of Kennedy, 845 N.W.2d 707 (Iowa Apr. 18, 2014) (appeal brought by a 21-year-old man with intellectual
disabilities challenging the legality of a vasectomy his guardian had arranged for him without obtaining a
court order); Renu Barton-Hanson, Sterilization of Men with Intellectual Disabilities: Whose Best Interest Is
It Anyway?, Medical Law International (2005), available at http://mli.sagepub.com/content/early/2015/06/26/
0968533215592444.full.pdf+html (last visited Jan. 19, 2016) (examining recent cases concerning sterilization
of men with intellectual disabilities and noting the frequent justification as allegedly promoting sexual
freedom).
14 World Health Organization & United Nations Population Fund, Promoting Sexual and Reproductive
Health for Persons with Disability, 7 (2009); see also World Health Organization, Sexual Health, Human
Rights and the Law 24 (2015), available at http://www.who.int/reproductivehealth/publications/sexual_health/
sexual-health-human-rights-law/en/ (last visited Jan. 19, 2016) (“Health-care providers may consider that
people with intellectual disabilities or other disabilities should not have a sexual life, reproduce or look after
children, and therefore should not need sexual and reproductive health services. Furthermore, healthcare
settings may be physically inaccessible and health information may be unavailable in different formats”).
15 Jennifer Kern, Across Boundaries: The Emergence of an International Movement of Women with
Disabilities, 8 Hastings Women’s Law Review 233, 244 (1997) (“An example of an insidious and destructive
phenomenon disabled women face throughout the world is the limitation to reproductive freedom and
choices”).
56 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
disabilities in double measure because of their disability and gender.16 Stemming from
prejudiced constructs of sexuality,17 persons with physical or sensory disabilities are
often misperceived as asexual,18 while those with intellectual or psychiatric disabilities
are wrongly assumed incapable of appropriate (meaning, non-promiscuous) sexual
relations.19 Because of these stereotypes, persons with disabilities — principally
women with intellectual20 or psychiatric21 disabilities — are sterilized at alarming
rates. Strikingly, involuntary or coercive sterilization of persons with disabilities
endures across the globe in many countries including the US,22 Mexico,23 India,24
16 Id. at 235 (asserting that “stereotypes of disabled women impinge on efforts at self-determination and
autonomy, and undermine attempts to change unjust policies that oppress disabled women worldwide”).
17 See generally Tom Shakespeare, Disabled Sexuality: Toward Rights and Recognition, 18 Sexuality &
Disability, 159 (2000).
18 Judith Anne McKenzie, Disabled People in Rural South Africa Talk about Sexuality, 15 Culture,
Health & Sexuality, 372 (2013); Maureen S. Milligan & Aldred H. Neufeldt, The Myth of Asexuality: A
Survey of Social and Empirical Evidence, 19 Sexuality & Disability, 91 (2001).
19 Ann Craft, Mental Handicap and Sexuality: Issues for Individuals with a Mental Handicap, Their
Parents and Professionals, in Ann Craft eds. Mental Handicap and Sexuality: Issues and Perspectives, at 13
& 14 (1987). Indeed, “[m]ainstream society’s discomfort with the notion of people with disabilities’ relational
intimacy is well documented.” Michael Ashley Stein, Mommy Has a Blue Wheelchair: Recognizing the
Parental Rights of Individuals with Disabilities, 60 Brooklyn Law Review 1069, 1078 (1994).
20 See World Report on Disability, fn.12 at 78 (“[T]here are many cases of involuntary sterilization being
used to restrict the fertility of some people with a disability, particularly those with an intellectual disability,
almost always women”); see also Vanessa Volz, Note, A Matter of Choice: Women with Disabilities,
Sterilization, and Reproductive Autonomy in the Twenty-First Century, 27 Women’s Rights Law Reporter, 203
(2006).
21 Rima Kundnani, Protecting the Right to Procreate for Mentally Ill Women, 23 Southern California
Review of Law and Social Justice, 59 (2013) (“Involuntary sterilizations and abortions continue to pose
problems for mentally ill woman”).
22 National Council on Disability, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities
and Their Children, 44 (2012) (the “Rocking the Cradle”) (“[S]everal states still have some form of
involuntary sterilization laws on their books”).
23 Disability Rights International, Twice Violated: Abuse and Denial of Sexual and Reproductive Rights of
Women with Psychosocial Disabilities in Mexico City, Feb. 15, 2015, available at http://www. driadvocacy.
org/disability-rights-international-dri-research-reveals-shocking-abuses-against-women-with-disabilities-in-m
exico-city/ (last visited Jan. 19, 2016) (42% of the women interviewed, all with psychosocial or psychiatric
disabilities, had been forcibly surgically sterilized or had been coerced by their families to undergo the
procedure. Moreover, certain institutions for children with disabilities in Mexico City require sterilization of
every girl admitted).
24 United Nations Enable, Factsheet on Persons with Disabilities, Factsheet on Persons with Disabilities,
available at http://www.un.org/disabilities/default.asp?id=18 (last visited Jan. 19, 2016) (6% of women with
disabilities who were interviewed reported being forcibly sterilized).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 57
Australia,25 Belgium,26 and Spain.27
Erroneous cultural conventions about disability also result in decreased access to
reproductive health care services.28 For instance, women with disabilities often encounter
significant barriers to obtaining information, medical care, and services necessary for
ensuring their reproductive needs. 29 Correspondingly, disabled persons are at an
increased risk of exposure to HIV/AIDS, because of limited access to education,
information, and prevention services.30 For women with intellectual disabilities, not
25 Women with Disabilities Australia, Human Rights Watch, Open Society Foundations, and the
International Disability Alliance, Sterilization of Women and Girls with Disabilities: A Briefing Paper, (2011),
available at http://www.opensocietyfoundations.org/sites/default/files/sterilization-women-disabilities-
20111101.pdf (last visited Jan. 19, 2016) (the “Sterilization of Women and Girls with Disabilities”); People
with Disabilities Australia, Senate Standing Committee on Community Affairs: Inquiry into the Involuntary or
Coerced Sterilisation of People with Disabilities in Australia (2013), available at
http://www.pwd.org.au/documents/pubs/SB13-InvoluntaryCoercedSterilisation.doc (last visited Jan. 19,
2016); Human Rights Law Centre, Torture and Cruel Treatment in Australia: Joint NGO Report to the United
Nations Committee Against Torture (2014), available at http://hrlc.org.au/wp-content/uploads/2014/10/
CAT_NGO_Report_Australia_2014.pdf (last visited Jan. 19, 2016); Bridie Jabour, Disability Groups go to
UN over Australia’s Forced Sterilisation Practice, The Guardian, Nov. 3, 2014, available at
http://www.theguardian.com/society/2014/nov/03/disability-groups-go-to-un-over-australias-forced-sterilisati
on-practice (last visited Jan. 19, 2016).
26 Laurent Servais, Robert Leach & Denis Jacques et al, Sterilization of Intellectually Disabled Women,
19 European Psychiatry 428 (2004) (citing a 2004 Belgium study finding that sterilization of women with
intellectual disabilities is three times higher than that in the general population and is highly correlated with
institutionalization and severity of disability).
27 Open Society Foundations, Against Her Will: Forced and Coerced Sterilizations of Women Worldwide
6 (2011), available at https://www.opensocietyfoundations.org/sites/default/files/against-her-will-20111003.
pdf (last visited Jan. 19, 2016) (Spanish law allows for children with significant intellectual disabilities to
undergo forced sterilization).
28 See Sterilization of Women and Girls with Disabilities, fn. 25 at 2; Rocking the Cradle, fn. 22 at
252–257.
29 Id.; Stein, fn. 19 at 1079 (“The prevailing presumption is that if women with disabilities will not or
cannot engage in sexual activity, then they do not need access to gynecological health care”); Lori Ann
Dotson, Jennifer Stinson & Leeann Christian, “People Tell Me I Can’t Have Sex”: Women with Disabilities
Share Their Personal Perspectives on Health Care, Sexuality, and Reproductive Rights, 26 Women &
Therapy 195, 196 (2003) (women with disabilities often do not receive family planning counseling because
health care providers do not view them as sexual beings); Sibusisiwe Siphelele Mavuso & Pranitha Maharaj,
Access to Sexual and Reproductive Health Services: Experiences and Perspectives of Persons with
Disabilities in Durban, South Africa, 6 Agenda: Empowering Women for Gender Equity (Jun. 29, 2015),
available at http://dx.doi.org/10.1080/10130950.2015.1043713 (last visited Jan. 19, 2016) (finding a large
divide between the need for sexual and reproductive health services and access to such services by persons
with disabilities, particularly family planning services and information about contraceptives).
30 Nora Ellen Groce, Poul Rohleder & Arne Henning Eide et al, HIV Issues and People with Disabilities:
A Review and Agenda for Research, 77 Social Science & Medicine 31–40 (2013) (analyzing current research
regarding on the intersection of HIV/AIDS and persons with disabilities and calling for greater attention to
the topic); see also United Nations Office of the High Commissioner for Human Rights, World Health
Organization & United Nations Programme on HIV/AIDS, Disability and HIV Policy Brief (2009), available
at http://www.who.int/disabilities/jc1632_policy_brief_disability_en.pdf?ua=1 (last visited Jan. 19, 2016).
58 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
receiving sex education and information leads to higher rates of sexually transmitted
diseases as well as victimization of sexual abuse, along with a limited ability to report
those abuses due to lack of knowledge.31
Deprivation of sexual, reproductive, and parenting rights results in the denial of the
opportunity to parent by persons with disabilities.32 In addition to the insurmountable
biological barriers created by sterilization, prospective parents with varying disabilities
are also more likely to face discrimination when attempting to adopt (domestically or
internationally) 33 or to access fertility treatments. 34 Among those persons with
disabilities who do become parents, research from Canada, the US, Australia, New
Zealand, and the UK reports that parents with intellectual disabilities have their children
permanently removed by child welfare agencies at rates ranging from 30% to 80%.35
Similarly, research indicates that parents with psychiatric disabilities face
disproportionately high rates of removal, with estimates as high as 70% to 80%.36 Parents
31 Amy Swango-Wilson, Meaningful Sex Education Programs for Individuals with Intellectual/
Developmental Disabilities, 29 Sexuality & Disability 113–118 (2011).
32 See generally Rocking the Cradle, fn. 22; see also Virginia Kallianes & Phyllis Rubenfeld, Disabled
Women and Reproductive Rights, 12 Disability & Society 203, 207 (1997) (for disabled women, the
reproductive rights movement is broad and “encompasses the right to be recognized as sexual, to bear
children-even a disabled child-to be seen as ‘fit’ to mother”).
33 See generally Rocking the Cradle, fn. 22 at 181–204. Prospective parents with disabilities are
increasingly prohibited from adopting internationally because of “procedural and substantive restrictions on
foreign adoption.” See James G. Dwyer, Inter-Country Adoption and the Special Rights Fallacy, 35
University of Pennsylvania Journal of International Law 189 (2013).
34 See generally Rocking the Cradle, fn. 22; Ella Callow, Kelly Buckland & Shannon Jones, Parents with
Disabilities in the United States: Prevalence, Perspectives, and a Proposal for Legislative Change to Protect
the Right to Family in the Disability Community, 17 Texas Journal of Civil Liberties & Civil Rights, 9 (2011);
Robyn Powell, Can Parents Lose Custody Simply Because They Are Disabled?, 31 GP Solo & Small Firm, 14
(2014).
35 Tim Booth, & Wendy Booth, Findings from a Court Study of Care Proceedings Involving Parents with
Intellectual Disabilities, 1 Journal of Policy and Practice in Intellectual Disability, 179–181 (2004); Tim
Booth, Wendy Booth & David McConnell, Care Proceedings and Parents with Learning Difficulties:
Comparative Prevalence and Outcomes in an English and Australian Court Sample, 10 Child & Family
Social Work 353–360 (2005); Maurice Feldman, Bruce Sparks & Laurie Case, Effectiveness of Home-Based
Early Intervention on the Language Development of Children of Mothers with Mental Retardation, 14
Research in Development Disability 387–408 (1993); Robert L. Hayman, Presumptions of Justice: Law,
Politics, and the Mentally Retarded Parent, 103 Harvard Law Review 1201 (1990); Gwynnth Llewellyn,
David McConnell & Luisa Ferronato, Prevalence and Outcomes for Parents with Disabilities and their
Children in an Australian Court Sample, 27 Child Abuse Neglect, 235–251 (2003); David McConnell,
Maurice Feldman & Marjorie Aunos et al, Parental Cognitive Impairment and Child Maltreatment in Canada,
35 Child Abuse Neglect, 621–632 (2011); Brigit Mirfin-Veitch, Jennifer Conder & Jackie Sanders et al,
Supporting Parents with Intellectual Disabilities, 6 New Zealand Journal of Disability Studies 60–74 (1999).
36 Loran B. Kundra & Leslie B. Alexander, Termination of Parental Rights Proceedings: Legal
Considerations and Practical Strategies for Parents with Psychiatric Disabilities and the Practitioners Who
Serve Them, 33 Psychiatric Rehabilitation Journal 142, 143 (2009); see generally Jennifer Mathis, Keeping
Families Together: Preserving the Rights of Parents with Psychiatric Disabilities, 46 Clearinghouse Review
517 (2013).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 59
with disabilities are also at high risk to lose custody during divorce proceedings.37
This article examines the sexual, reproductive, and parenting rights of persons with
disabilities from an international and comparative perspective. Part I provides a historical
perspective by analyzing the rationales used by courts over time and across jurisdictions
to justify the denial of sexual, reproductive, and parenting rights to persons with
disabilities. Next, Part II examines the United Nations Convention on the Rights of
Persons with Disabilities (UNCRPD) and its applicability to sexual and reproductive
rights vis-à-vis the rights to personal integrity, access to reproductive health care services
and information, parenthood and family, and exercise of legal capacity. Part III concludes
by highlighting fundamental and complex issues at the heart of the realization of these
human rights that require additional research and consideration.
I.RATIONALES FOR DEPRIVING RIGHTS
A long and shameful practice exists of curtailing the sexual, reproductive, and
parenting rights of persons with disabilities. Forced sterilizations were initially grounded
in eugenic reasons. Over time, this practice lost broad social consensus — or at least
public discussion and approbation. Nevertheless, the ideology undergirding eugenic
sterilization continues to curtail sexual, reproductive, and parenting rights of persons with
disabilities,38 such that individuals with disabilities continue to be sterilized in many
parts of the world.39 Also prevailing is the misconception that persons with disabilities
lack the capacity to make choices and perform social roles. What has changed in the
modern era is that the rationales offered in justification of “the awesome power to deprive
a human being of his or her fundamental right to bear or beget offspring,”40 have shifted,
at least superficially. Common justifications for sterilizing persons with disabilities fall
into three broad categories: eugenic ideologies; the espoused best interest of the
individual and/or others; and the perceived unfitness of the individual to parent.41
This Part explores how these three encompassing rationales have been applied in
37 See Powell, fn. 34.
38 See Volz, fn. 20 at 216 (“An examination of the history of United States sterilization procedures
against individuals with disabilities is helpful in comprehending the government’s paternalistic tendencies
towards making decisions for citizens it deems are unable to make such choices for themselves”); Elizabeth
Tilley, Sarah Earle & Jan Walmsley et al, “The Silence Is Roaring”: Sterilization, Reproductive Rights and
Women with Intellectual Disabilities, 27 Disability & Society 413, 414 (2012) (“[a]lthough involuntary
sterilization is probably no longer a widespread practice in most western countries, its history sheds light on
contemporary practices that can be regarded as constituting a continuation of eugenic practices by other
means”).
39 See generally Open Society Foundations, fn. 27.
40 Guardianship of Tulley, 83 Cal. App. 3d 698, 704 (1978).
41 Leanne Dowse, Moving Forward or Losing Ground? The Sterilisation of Women and Girls with
Disabilities in Australia, Women with Disabilities Australia, (2004), available at http://www.wwda.
org.au/steril3.htm (last visited Jan. 19, 2016).
60 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
domestic courts across the globe, as well as how those courts perceive and engage the
notion of legal capacity in those cases.
A. Eugenics-Based Rationale
In the US, forced sterilization of those deemed “socially inadequate,”42 and especially
women with disabilities, began in the early 20th century with the eugenics movement.43
Based on the premise that the “human race [could] be gradually improved and social ills
simultaneously eliminated through a program of selective procreation,” 44 eugenics
targeted “the mentally defective, the mentally diseased, the physically defective, such as
the blind, the deaf, the crippled and those ailing from heart disease, kidney disease,
tuberculosis and cancer.”45 Indeed, the eugenics movement centered on preventing those
who society viewed as “unfit for parenthood” from reproducing. 46 The eugenics
movement led to the passage of compulsory sterilization laws in more than 30 states,47
with over 65,000 Americans sterilized by 1970.48
Involuntary sterilization of persons with disabilities was in no way limited to the US.
While accounts vary as to the actual number, it is generally agreed upon that within 1
year of enacting its eugenics law, Germany sterilized as many as 60,000 to 100,000
persons in an attempt to prohibit reproduction of those deemed defective and eliminate
their genes from the human race.49 In Canada, between 1927 and 1972, the Eugenics
Board of Alberta (a remote province) alone authorized 2,500 sterilization procedures.50
42 Jacob Henry Landman, The Human Sterilization Movement, 24 Journal of the American Institute of
Criminal Law and Criminology, 400 (1933–1934).
43 Paul Lombardo, Medicine, Eugenics, and the Supreme Court: From Coercive Sterilization to
Reproductive Freedom, 13 Journal of Contemporary Health Law and Policy, 1–2 (1996) (the “Medicine,
Eugenics, and the Supreme Court”); see generally Paul Lombardo, Three Generations, No Imbeciles:
Eugenics, the Supreme Court and Buck vs Bell (2008) (the “Three Generations, No Imbeciles”).
44 See Medicine, Eugenics, and the Supreme Court, fn. 43 at 1.
45 See Landman, fn. 42 at 400.
46 Eric M. Jaegers, Note, Modern Judicial Treatment of Procreative Rights of Developmentally Disabled
Persons: Equal Rights to Procreation and Sterilization, 31 University of Louisvile Journal of Family 947, 948
(1992–1993) (“The purpose of these laws was to protect and streamline society by preventing reproduction by
those deemed socially or mentally inferior”). The eugenic movement also inspired a number of states to enact
laws that prohibited persons with disabilities from marrying. For instance, the language used in one
Connecticut state statute was typical; it prohibited “epileptics, imbeciles, and feebleminded persons” from
marrying or having extramarital sexual relations before the age of forty-five. Robert J. Cynkar, Comment,
Buck vs Bell: “Felt Necessities” vs Fundamental Values?, 81 Columbia Law Review 1418, 1432 (1981).
47 See Medicine, Eugenics, and the Supreme Court, fn. 43 at 1–2.
48 See Three Generations, No Imbeciles, fn. 43 at 104 & 116.
49 Philip R. Reilly, Eugenic Sterilization in the United States, in Aubrey Milunsky & George J. Annas eds.
Genetics and the Law III, Springer (New York), at 227, 236 (1985).
50 Law Reform Commission of Canada, Sterilization: Implications for Mentally Retarded and Mentally
Ill Persons (Working Paper 24), 42 (1979).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 61
Forced sterilizations of marginalized women, particularly disabled women, was common
in a number of other countries, such as Denmark, Finland, Switzerland, Sweden, England,
Norway, Iceland, Belgium, Austria, India, China, Japan, and parts of Australia.51
The eugenics argument for sterilizing persons with disabilities, particularly women
and girls with intellectual or psychiatric disabilities, is borne out of fear that they will
reproduce children with similar disabilities. This line of reasoning underscored the
infamous Buck vs Bell decision in the US. 52 Carrie Buck was an allegedly
“feebleminded” woman institutionalized in Virginia.53 She was likewise the daughter of a
“feebleminded” mother committed to the same institution. At age 17, Buck became
pregnant after being raped; her daughter Vivian allegedly also had an intellectual
disability and deemed feebleminded as well.54 Following Vivian’s birth, the institution
sought to sterilize Buck in accordance with Virginia’s sterilization statute. After a series
of appeals, the statute upheld as constitutional on the premise that it served “the best
interests of the patient and of society.”55 Concluding this historical decision, Justice
Oliver Wendell Holmes, Jr. declared, “Three generations of imbeciles are enough.”56
The eugenics-based rationale for forcibly sterilizing persons with disabilities endures
across time and jurisdiction. For example, in 2004, the Family Court of Australia
authorized the sterilization of a 12-year-old intellectually disabled girl with tuberous
sclerosis, a genetic condition with a 50% inheritance risk factor.57 While the prognosis of
tuberous sclerosis is highly variable, with many who are diagnosed leading typical lives,58
51 See Tilley, Earle & Walmsley et al, fn. 38 at 414–417 (2012); (Denmark, Sweden, Norway, Iceland,
Belgium, Austria); Landman, fn. 42 at 403 (Denmark, Finland, Switzerland, Norway, Sweden, parts of
Australia); Takashi Tsuchiya, Eugenic Sterilizations in Japan and Recent Demands for Apology: A Report, 3
Newsletter of the Network on Ethics and Intellectual Disability 1–4 (1997) (between 1948 and 1996, more
than 16,500 individuals were forcibly sterilized in Japan); Lisa Alvares, Heidi A. Case & Emily J.
Kronenberger et al, Reproductive Health Justice for Women with Disabilities, Center for Women Policy
Studies (2011), available at http://www.centerwomenpolicy.org/programs/waxmanfiduccia/documents/
bfwfp_reproductivehealthjusticeforwomenwithdisabilities_nowfoundationdisabilityrightsadvisor.pdf (last
visited Jan. 19, 2016) (China); Gail Rodgers, Yin and Yang: The Eugenic Policies of the United States and
China: Is the Analysis that Black and White?, 22 Houston Journal of International Law, 129 (1999).
52 274 U.S. 200 (1927) [the Buck vs Bell].
53 Id. at 205; see Three Generations, No Imbeciles, fn. 43 (asserting that Buck was actually not
“feebleminded” but rather institutionalized as a way to hide her rape).
54 See Buck vs Bell, fn. 52 at 205.
55 Id. at 206.
56 Id. at 208 & 205–206 (Holmes, J.: “experience has shown that heredity plays an important part in the
transmission of insanity, [and] imbecility”).
57 Re H [2004] FamCA 496.
58 National Institute of Neurological Disorders and Stroke, Tuberous Sclerosis Fact Sheet (2015),
available at http://www.ninds.nih.gov/disorders/tuberous_sclerosis/detail_tuberous_sclerosis.htm (last visited
Jan. 19, 2016) (“The prognosis for individuals with TSC is highly variable and depends on the severity of
symptoms”).
62 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
the court accepted testimony from a medical specialist that sterilization was in the
best interests of the young girl, stating, in part, “Given the genetic nature of her
disorder and the 50% inheritance risk thereof, this would in my view be of great
benefit to H.”59
Regrettably, the belief that disability is a personal tragedy that is to be avoided at all
costs is not limited to the judicial system. In fact, persons with genetic disabilities often
encounter substantial resistance from health care professionals and family members if
they want to procreate because of the possibility their children would inherit their
disability. 60 Public reaction to news stories regarding disabled women further
demonstrates that eugenics-based beliefs persist.61
The residue of eugenics-based beliefs continues to have profound and alarming
consequences for persons with disabilities, particularly women and girls. 62 As
highlighted by Rashida Manjoo, the United Nations Special Rapporteur on Violence
against Women, “Although society’s fear that women with disabilities will produce
so-called ‘defective’ children is for the most part groundless, such erroneous concerns
have resulted in discrimination against women with disabilities from having
children.”63
B. “Best Interest” Rationales
1. “Best Interest” of the Individual. — Involuntary sterilization is commonly justified
under the auspices that the procedure is in the “best interest” of the individual. Indeed,
women with disabilities are often “forcibly sterilized or forced to terminate wanted
pregnancies — under the paternalistic guise of ‘for their own good.’”64 For example, in
59 See Re H, fn. 57 at 49.
60 See Rocking the Cradle, fn. 22 at 47.
61 See e.g. online response to Caroline Overington, Family Court Lets Couple Sterilise Disabled
Daughter, The Australian Newspaper (Mar. 9, 2010), available at http://www.news.com.au/national/
family-court-lets-couple-sterilise-disabled-daughter/story-e6frfkvr-1225838469430?pg=1#comments (last
visited Jan. 19, 2016) (Comment 93 of 162 posted at 10:14AM Mar. 09, 2010: “…Personally I think people
with any medium level to high level disability should be completely sterilised to keep the gene pool clean”);
see also online response to Elizabeth Picciuto, Mom with Disabilities and Daughter Reunited after Two-Year
Court Battle, The Daily Beast (Mar. 16, 2015), available at http://www.thedailybeast.com/articles/2015/03/16/
mom-with-disabilities-and-daughter-reunited-after-two-year-court-battle.html (last visited Jan. 19, 2016)
(Comment 3 of 15 posted on Mar. 16, 2015: “So one must ask what in the world is a mentally disabled,
retarded, or whatever you want to call it doing without and IUD or contraceptive implant?”).
62 See generally Susan M. Brady, Sterilization of Girls and Women with Intellectual Disabilities: Past and
Present Justifications, 7 Violence against Women 432–461 (2001).
63 United Nations General Assembly, Report of the Special Rapporteur on Violence against Women, Its
Causes and Consequences, Rashida Manjoo, 28, UN Doc. A/67/227 (2012).
64 Id. at 36.
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 63
England, court authorization was sought to sterilize “Jeanette,” a 17-year-old girl with an
intellectual disability and epilepsy.65 Jeanette had begun “showing signs of sexual
awareness and sexual drive,”66 and her mother along with local authorities expressed
concerns regarding the potential for pregnancy that they felt could pose significant
emotional risks for Jeanette.67 Since Jeanette would become of legal age within 6 months
and the court was uncertain it could retain parens patriae jurisdiction, it treated the matter
as urgent. The court ruled, and the House of Lords agreed, that the welfare and best
interest of Jeanette were of “paramount concern” and she thus warranted sterilization.68
The court also noted that less invasive birth control was unrealistic and could interact
negatively with her epilepsy medication.69 Further, that in the absence of sterilization,
Jeanette’s obesity might limit others from discovering she was pregnant until it was too
late into her term for an abortion to be performed.70
Likewise, in the UK, a court recently held a vasectomy was “overwhelmingly” in the
best interests of DE, a 37-year-old man with an intellectual disability.71 Questions arose
concerning DE’s capacity to engage in sexual relations after DE’s long-term girlfriend,
who also had an intellectual disability, became pregnant,72 and significant limitations
were imposed to keep the couple from being alone together.73 Thereafter, DE’s parents
and the national health authorities sought court approval to force DE to undergo a
vasectomy, reasoning that such a procedure would “restore as much independence as
possible” while preventing additional pregnancies.74 The court found that DE lacked the
capacity to decide whether to consent to the procedure; declared the vasectomy lawful
and in DE’s best interest; and authorized local health officials to take all necessary steps
to carry out the procedure.75 The court reached this decision despite DE’s ambivalence to
a vasectomy and his desire to use condoms.76
Disturbingly, some courts have justified involuntary sterilization of women and girls
with disabilities on the basis that doing so will protect them from sexual abuse and the
consequences of abuse, despite the irrelevance of the former and the improperly directed
65 In re B., [1988] 1 A.C. 199 (H.L.) (the “Jeanette’s case”).
66 Id. at 208.
67 Id. at 199.
68 Id. at 199.
69 Id. at 203.
70 Id. at 208.
71 A NHS Trust vs DE [2013] EWHC 2562 (the “DE’s case”) at 93.
72 Id. The girlfriend’s mother was appointed guardian of their child and raised the child.
73 Id. at 3 & 32. Notably, during the proceedings it was also determined that DE had the capacity to
consent to sexual relations.
74 Id. at 4.
75 Id. at 5.
76 Id. at 52.
64 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
concerns of the latter.77 For example, the court in Re H authorized the sterilization of a
12-year-old girl on the basis that “If she were to be the victim of sexual assault, and to
become pregnant, this would be a very complicated situation, both ethically and
medically. The hysterectomy would remove the chance of an unwanted pregnancy and
further medical complications associated with a pregnancy.”78
Equally irrelevant and offensive, courts have cited an individual’s “attractive”
appearance as justification for forcibly sterilizing women and girls with disabilities.79
Although women and girls with intellectual disabilities are at increased risk of sexual
abuse, research consistently finds that depriving the rights of women with disabilities
does nothing to protect them from abuse and may actually serve to perpetuate these
crimes due to contraception or sterilization reducing the chance of the abusers being
caught.80
2. “Best Interest” of the Individual and Others. — Some courts have postulated that
not sterilizing persons with disabilities unduly “burdens” others, usually family
members;81 but also, as in Buck vs Bell, society-at-large.82 These cases often justify
sterilization as being in the best interest of the individual and others83 because it
77 Of course, not all judges agree. Notably, Justice Brennan, In re Marion, correctly disavowed this
rationale, recognizing the fallacy of protecting against abuse via sterilization. However, his view was raised in
dissent. See In re Marion, infra note 188 at 276 (Brennan, J., dissenting).
78 See Re H, fn. 57 at 57.
79 See e.g. Re Katie [1995] FamCA 130 (“It is highly unlikely that Katie will ever have the capacity to
understand and voluntarily enter into a sexual relationship…It is however well documented that disabled
children are particularly vulnerable to sexual abuse and Katie is quite an attractive girl”); Re A Teenager
[1988] FamCA 17 (“[I]t is unlikely she will have any form of relationship involving sexual intercourse. She
could, of course, be the victim of a sexual assault and with her normal physical development and attractive
looks that cannot be discounted”).
80 Michelle McCarthy, Whose Body Is It Anyway? Pressures and Control for Women with Learning
Disabilities, 13 Disability & Society 557, 571 (1998); Miriam Taylor & Glenys Carlson, The Legal Trends:
Implications for Menstruation/Fertility Management for Young Women Who Have an Intellectual Disability,
40 International Journal of Disability Development and Education, 133–157 (1993).
81 Beverly Horsburg, Schrodinger’s Cat, Eugenics, and the Compulsory Sterilization of Welfare Mothers:
Deconstructing an Old/New Rhetoric and Constructing the Reproductive Right to Natality for Low-Income
Women of Color, 17 Cardozo Law Review 531, 572 (1996) (today, sterilization of women with disabilities,
particularly psychiatric or intellectual, is “driven by parents, guardians, and social service providers who are
uneasy…[that] they will incur the additional burden of caring for the offspring”).
82 See Buck vs Bell, fn. 52 at 207 (“It is better for all over the world, if instead of waiting to execute
degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are
manifestly unfit from continuing their kind”).
83 See Tilley, Earle & Walmsley et al, fn. 38 at 415 (“An argument used in the United States and the
Nordic countries was that some women were unfit for parenthood, indeed incapable of parenting adequately;
sterilization would liberate such women, enabling them to live outside institutions without the danger of
pregnancy”). See also Richard K. Sherlock & Robert D. Sherlock, Sterilizing the Retarded: Constitutional,
Statutory and Policy Alternatives, 60 North Carolina Law Review 943, 951–953 (1982) (noting the use of
best interest justifications).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 65
suppresses or manages menstruation, while ignoring the reality that sterilization is only
one option for menstrual management.84
In 2010, the Family Court of Australia authorized a hysterectomy for Angela, an
11-year-old girl with Rett’s Syndrome, which caused significant physical and intellectual
impairments as well as epilepsy.85 Angela’s parents had sought approval to sterilize
Angela to prevent menstruation, asserting that less-invasive contraceptive was
ineffective.86 During the proceeding, it was submitted that the effects of sterilization on
Angela would be “relatively minimal” and the “menstrual problems” would be resolved.87
In holding sterilization was in Angela’s best interest, the court also accepted that due to
the nature of Angela’s disability, “she would not have the psychological capabilities to
consider a pregnancy into the future” and so sterilization would remedy this as well.88
Moreover, in accepting “without hesitation”89 the evidence of an obstetrician and
gynecologist, the court found the sterilization “would certainly be a social improvement
for Angela’s mother which in itself must improve the quality of Angela’s life.”90 Other
courts have made similar findings.91
The American “Ashley X”92 case provides another basis for analyzing the legal and
social policy constructs embodying sterilization of persons with disabilities, particularly
as it relates to being purportedly in the best interest of both the individual and others.
Ashley has intellectual disabilities and was described by her physicians as being
“non-ambulatory” with “severe, combined developmental and cognitive disabilities.”93 In
84 Eleanor Atkinson, Michael J. Bennett & Jan Dudley et al, Consensus Statement: Menstrual and
Contraceptive Management in Women with an Intellectual Disability, 43 Australian and New Zealand Journal
of Obstetrics and Gynaecology, 109–110 (2003); Sonia R. Grover, Menstrual and Contraceptive Management
in Women with an Intellectual Disability, 176 Medical Journal of Australia, 108–110 (2002); Laurent Servais,
Sexual Health Care in Persons with Intellectual Disabilities, 12 Mental Retardation and Developmental
Disabilities Research Reviews, 48–56 (2006); Servais, Leach & Jacques et al, fn. 26 at 428.
85 Re Angela [2010] FamCA 98 (Austl.).
86 Id. at 20.
87 Id. at 23.
88 Id.
89 Id. at 17.
90 Id. at 22–23.
91 See e.g. Re K. vs Public Trustee (1985) 19 D. L. R. (4th) 255 (the British Columbia Court of Appeal
ruled that a surgeon could perform a hysterectomy on a 10-year-old girl with an intellectual disability with the
consent of her parents because of an anticipated adverse reaction to menstruation); Re H, fn. 57 at 37, 68
(finding H would likely always need assistance managing menstruation and sterilization would prevent
menstruation); see also Sec’y, Dep’t of Health & Cmty. Svcs. vs JWB (the “In re Marion”), [1992] 175 CLR
218, 260 (Austl.) (“[I]n the circumstances with which we are concerned, the best interests of the child will
ordinarily coincide with the wishes of the parents”).
92 Daniel F. Gunther & Douglas S. Diekema, Attenuating Growth in Children with Profound
Developmental Disability: A New Approach to an Old Dilemma, 160 Archives Pediatrics & Adolescent
Medicine, 1013–1017 (2006), available at www.archpedi.ama-assn.org/cgi/content/full/160/10/1013 (last
visited Jan. 19, 2016).
93 Id.
66 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
2004, at age 6, a hospital, with Ashley’s parent’s approval, performed a series of
procedures including growth attenuation via hormone therapy, a hysterectomy, and
bilateral breast bud removal.94 In allowing these procedures, her physicians and doctors
justified the permanent alteration of her body by contending that the procedures ensured
“the best possible quality of life,” by permitting her to be more easily cared for by her
family, while also allowing her to “retain more dignity in a body that is healthier, more of
a comfort to her, and more suited to her state of development.”95 Justifying the
hysterectomy, Ashley’s parents asserted, “Ashley has no need for her uterus since she will
not be bearing children.”96 Further, Ashley’s physicians argue that the hysterectomy
benefited both Ashley and her family because it “eliminate[d] the complications of
menses.”97 Thus, Ashley’s “best interest was equated with her parents’ ability to maintain
her at home and being easily able to carry and move her.”98 Remarkably, Ashley’s
parents permitted these procedures with just the approval of an internal ethics board, sans
adjudication.99 A few years later, an investigation revealed that the hospital had violated
state law in this matter.100 Nonetheless, the “Ashley Treatment” remains popular across
the globe, with more than 100 families subjecting their children to similar procedures
while thousands more are said to have considered it.101
C. Unfitness to Parent
Perceived inability to parent is another common justification for sterilizing persons
with disabilities. Indeed, “[c]urrent sterilization statutes bring into question the
competency of a woman as a parent in determining whether sterilization is
appropriate.”102 In other words, “[i]n the sterilization context, the main question turns on
whether a woman with a disability would be a competent parent if she were to become
94 Id.
95 Id.
96 See The “Ashley Treatment,” Towards a Better Quality of Life for “Pillow Angels,” available at
http://pillowangel.org/Ashley%20Treatment.pdf (last visited Aug. 3, 2015) (the “Pillow Angels”).
97 See Gunther & Diekema, fn. 92.
98 Marcia H. Rioux & Lora Patton, Beyond Legal Smokescreens: Applying a Human Rights Analysis to
Sterilization Jurisprudence, in Marcia H. Rioux, Lee Ann Basser & Melinda Jones eds. Emory Critical
Perspectives on Human Rights & Disability Law, at 244–245 (2011).
99 Id.
100 Amy Burkholder, Report: “Pillow Angel” Surgery Broke Law, CNN, May 8, 2007, available at
http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html (last visited Jan. 19, 2016) (“Children’s
Hospital, in acknowledging its error, said that beyond implementing changes to ensure that sterilization of
disabled children doesn’t happen again without a court order, it will seek court approval for other procedures
involved in the controversial growth attenuation therapy”).
101 Ed Pikington & Karen McVeigh, “Ashley Treatment” on the Rise amid Concerns from Disability
Rights Groups, The Guardian, Mar. 15, 2012, available at http://www.guardian.co.uk/society/2012/mar/
15/ashley-treatment-rise-amid-concerns/ (last visited Jan. 19, 2016).
102 See Volz, fn. 20 at 209.
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 67
pregnant and bear a child. Such questions of competency depend upon the type and
severity of the disability, which may vary greatly in degree.”103 Accordingly, women
with disabilities, particularly those with intellectual disabilities, must contend with
pervasive stereotypes concerning their parenting fitness.104
In Jeanette’s case,105 for example, the United Kingdom’s House of Lords authorized
sterilization, in part, because of “…her inability ever to desire or care for a child, the
operation would be in her best interests.”106 Moreover, Lord Hailsham declared, “To talk
of the ‘basic right’ to reproduce of an individual who is not capable of knowing the causal
connection between intercourse and childbirth, the nature of pregnancy, what is involved
in delivery, unable to form maternal instincts or to care for a child appears to me wholly
to part company with reality.”107 Thus, the Lords were more worried about Jeanette’s
parenting ability than her capacity to make an informed choice.
Likewise, the presumed unfitness to parent influenced a 2011 Argentinian case, where
the Superior Tribunal de Justicia approved sterilization of J. V. A., a 23-year-old woman
with an intellectual disability, asserting primary consideration to her right to health and an
adequate standard of living, following a petition from her aunt (guardian).108 The lower
court declined authorization to sterilize, giving substantial weight to J. V. A.’s expressed
desire to someday have children.109 On appeal, the court acknowledged international
human rights norms yet considered them not legally binding, but rather “the efforts on the
international level to dignify the lives of persons with disabilities.”110 Moreover, the
court held that the petition to sterilize J. V. A. was not motivated merely by a desire to
avoid pregnancy but by a desire to “remove all obstacles from ensuring the effective
enjoyment of her human rights on an equal basis with others.” 111 Citing an
Inter-American Court of Human Rights advisory opinion, the court observed that not all
103 Id.
104 Id.
105 See Jeanette’s case, fn. 65.
106 Id. at 199.
107 Id. at 204.
108 Superior Tribunal de Justicia RNg. [STJ] [Superior Tribunal of Justice], 17/6/2011, “Asesor de
Menores e Incapaces N° 1 c. (A., J. V.)/insania/casación” (the “In re J. V. A.”), No. 24837/10, Sentence No. 48
(translation on file with author) (J. V. A.’s aunt submitted a number of justifications, including (1) sterilization
ensured a greater exercise of J. V. A.’s personal, expressive, and sexual freedom; (2) it was impossible for her
to take care of and educate a child; (3) there were no relatives available to assist her in the event of a birth; (4)
it was possible for her to pass her disability to her children; (5) she had experienced sexual violence and
abuse; (6) she was vulnerable; (7) persons with her disabilities were more likely to experience abuse; (8) there
would be negative consequences resulting from an abortion or adoption should she become pregnant; (9) it
was difficult to find persons willing to adopt children with disabilities; (10) it was impossible for the guardian
to ensure that she regularly follow other contraceptive regimens; and (11) alternative methods were less
effective in preventing pregnancies).
109 Id.
110 Id. at 4–5.
111 Id.
68 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
legal distinctions are discriminatory, given that there exist “de facto inequalities (among
them, the inability to comprehend the effects of procreation and to exercise
self-determination) that legitimately may be translated into differences in treatment
before the law without leading to injustice.”112 Instead, the court found that justice
requires distinctions made on the basis of actual inequalities, particularly “to realize
justice through the protection of those who appear in the eyes of the law to be weak or
vulnerable.” 113 In reaching its decision, the court discussed J. V. A.’s functional
limitations, her indigence, and her guardian’s advanced age.114 At the same time, the
court endeavored to strike a balance to best protect her rights to health, a full sexual life,
personal integrity, an adequate standard of living, form a family, and leisure and
recreation.115 While the court acknowledged there may be an “overlapping or conflict of
rights,” it was satisfied that J. V. A.’s rights, if “analyzed independently,” “may be
properly rearranged to arrive at the best solution to the case.”116 Thus, the court found
that sterilization was the only contraceptive measure to ensure that J. V. A. might enjoy “a
full sexual life,” while also avoiding a pregnancy that “would impede her from giving
effect to her rights.”117
Finally, a recent Colombian Constitutional Court decision118 has drawn considerable
criticism from dozens of national and international human rights organizations
dissatisfied by the Court’s failure to prohibit sterilization of minors with disabilities
without their consent.119 Specifically, in allowing the continued practice of sterilizing
minors with certain disabilities, the Court reasoned that “[A] person who cannot
understand the nature of the sterilization procedure nor its consequences, as in the case of
persons with severe and profound mental disabilities, is a person who will have difficulty
in assuming the responsibilities of parenthood” in consequence of which it held that
sterilization was “a form of protection of persons with disabilities.”120
II. CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES
The right to bodily integrity and the right to make reproductive choices are each
112 Id. at 6.
113 Id.
114 Id.
115 Id.
116 Id.
117 Id.
118 Decision of the Colombia Constitutional Court: Case 131/14 (Mar. 11, 2014) (the “Colombia
decision”).
119 Center for Reproductive Rights et al, Organizations in Several Countries Reject Decision of the
Colombian Constitutional Court Allowing for Sterilization of Minors with Disabilities without Their Consent,
(Mar. 18, 2014), available at http://www.reproductiverights.org/press-room/Organizations-in-several-
countries-reject-decision-of-the-Colombian-Constitutional-Court (last visited Jan. 19, 2016).
120 See Colombia decision, fn. 118 at 6.4.2.
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 69
enshrined in several human rights treaties and instruments.121 So, too, is the right to be
free from torture and inhuman treatment, which the United Nations Special Rapporteur on
Torture recently interpreted as potentially extending to the practice of involuntary
sterilization of persons with disabilities (and others).122 Nevertheless, as demonstrated in
Part I, persons with disabilities continue to experience systemic and pervasive
discrimination that results in concurrent widespread denial of their sexual, reproductive,
and parenting rights.
Prospects for countering this dire situation for person with disabilities reside in the
UNCRPD,123 the first and most comprehensive human rights convention of the 21st
century, as well as the first legally binding international human rights convention
specifically applying human rights to persons with disabilities.124 Adopting the human
rights paradigm,125 the UNCRPD is mandated “to promote, protect and ensure the full
and equal enjoyment of all human rights and fundamental freedoms by all persons with
disabilities, and to promote respect for their inherent dignity.”126 Hence, the UNCRPD
demonstrates a significant shift in attitudes and approaches to persons with disabilities in
international instruments, markedly departing from the traditional medical or charitable
models of disability that are still embedded in many domestic law and policy
121 See e.g. International Covenant on Civil and Political Rights, adopted 16 Dec. 1966, 2200A (XXI),
[Art.7, 17]; International Covenant on Economic, Social and Cultural Rights, adopted Dec. 16, 1966, 2200A
(XXI), [Art.10]; Convention on the Elimination of All Forms of Discrimination Against Women, adopted Dec.
18, 1979, 34/180, [Art.16].
122 Rep. of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or
Punishment, 48, UN DOC. A/HRC/22/53 (Feb. 1, 2013) (by Juan E. Méndez) (the “Méndez Report”); Janet E.
Lord, Shared Understanding or Consensus-Masked Disagreement? The Anti-Torture Framework in the
Convention on the Rights of Persons with Disabilities, 33 Loyola of Los Angeles International and
Comparative Law Review 27, 75 (2010); Janos Fiala-Butora, Disabling Torture: The Obligation to
Investigate Ill-Treatment of Persons with Disabilities, 45 Columbia Human Rights Law Review 214, 234
(2013).
123 Convention on the Rights of Persons with Disabilities, adopted Dec. 13, 2006, G.A. Res. 61/106, U.N.
GAOR, 61st Sess., UN Doc. A/RES/61/106 (2006) (entered into force May 3, 2008) (the “UNCRPD”).
124 See generally Michael Ashley Stein & Janet E. Lord, Monitoring the Convention on the Rights of
Persons with Disabilities: Innovations, Lost Opportunities, and Future Potential, 32 Human Rights Quarterly
689, 690 (2010). For information on the UNCRPD, including an updated list of States Parties, see UNCRPD
and Optional Protocol Signatures and Ratifications, United Nations Enable, available at
http://www.un.org/disabilities/ (last visited Aug. 5, 2015) (official website of the Secretariat for the
Convention on the Rights of Persons with Disabilities).
125 See generally Janet E. Lord & Michael Ashley Stein, The Domestic Incorporation of Human Rights
Law and the United Nations Convention on the Rights of Persons with Disabilities, 83 Washington Law
Review, 449 (2008).
126 See UNCRPD, fn. 123, Art. 1.
70 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
frameworks. 127 The UNCPRD also reflects the social model of disability 128 by
acknowledging disability “as an evolving concept” generated by “the interaction between
persons with impairments and attitudinal and environmental barriers that hinders their full
and effective participation in society on an equal basis with others.”129 To address the
widespread and systemic discrimination endured by persons with disabilities, the
UNCRPD sets forth general principles that inform its overall approach and apply across
the treaty: (1) dignity, individual autonomy including the freedom to make one’s own
choices, and independence of persons; (2) nondiscrimination, participation, and inclusion
in society; (3) respect for difference; (4) equality of opportunity; (5) accessibility;
(6) equality between men and women; and (7) respect for the evolving capacities of
children with disabilities.130
The UNCRPD is particularly important in guaranteeing the sexual, reproductive, and
parenting rights of persons with disabilities.131 While the UNCRPD ensures the rights of
all persons with disabilities, it also recognizes that certain groups experience multiple or
heightened forms of discrimination, including women and girls with disabilities who are
“often at greater risk…of violence, injury or abuse, neglect or negligent treatment,
maltreatment or exploitation.”132 Moreover, although the UNCRPD does not explicitly
proscribe nonconsensual sterilization, it ascertains a number of rights that protect against
such procedures.133 Indeed, the UNCRPD’s monitoring committee of experts (UNCRPD
Committee)134 has unfailingly recommended that States Parties implement measures to
address the nonconsensual sterilization of persons with disabilities.135 Moreover, because
the UNCRPD requires not just formal equality but also substantive equality, States Parties
have affirmative obligations (e.g. supporting persons with disability in parenting).
127 See generally Rosemary Kayess & Phillip French, Out of Darkness into Light? Introducing the
Convention on the Rights of Persons with Disabilities, 8 Human Rights Quarterly, 1–27 (2008) (providing an
overview of the UNCRPD and its reflection of the social model of disability); Gerard Quinn, Closing: Next
Steps — Towards a United Nations Treaty on the Rights of Persons with Disabilities, in Peter Blanck, eds.
Disability Rights: International Library of Essays on Rights, Ashgate, at 519–541 (2005).
128 See generally Bill Hughes & Kevin Paterson, The Social Model of Disability and the Disappearing
Body: Towards a Sociology of Impairment, 12 Disability & Society 325 (1997); Tom Shakespeare & Nicholas
Watson, Defending the Social Model of Disability, 12 Disability & Society, 293 (1997).
129 See UNCRPD, fn. 123, Preamble (e).
130 Id. Art. 3.
131 See generally Rocking the Cradle, fn. 22 at 77–82.
132 See UNCRPD, fn. 123, Preamble (q).
133 Marta Schaaf, Negotiating Sexuality in the Convention on the Rights of Persons with Disabilities, 8
Sur International Journal on Human Rights 113, 123 (2011).
134 See UNCRPD, fn. 123, Arts. 34–38 (establishing a Committee to monitor States Parties’ periodic
reports, assess information transmitted by civil society, issue recommendations to States Parties, and adopt
general comments interpreting the UNCRPD).
135 See, e.g. UNCRPD Comm., Concluding observations on the initial report of Argentina, 8th sess., Sep.
17–28, 2012, UN DOC. CRPD/C/ARG/CO/1, 31 (Oct. 8, 2012).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 71
The following sections consider how the contents of specific rights enshrined in the
UNCRPD protect the sexual, reproductive, and parenting rights of persons with
disabilities.
A. Personal Integrity
Sexual, reproductive, and parenting rights are grounded in one’s right to personal
integrity. Both Articles 15 and 16 relate to abuse and mistreatment of persons with
disabilities and should be interpreted to include forced and coerced sterilization. Akin to
other human rights instruments, Article 15 proscribes torture, cruel, inhuman, or
degrading treatment, or punishment while also adding a prohibition on medical and
scientific experimentation without consent.136 Focusing on prevention, Article 15 obliges
States Parties to take “all effective legislative, administrative, judicial or other measures”
to avert torture and other forms of mistreatment.137 Moreover, Article 16 declares that
persons with disabilities have the right to be free from exploitation, violence, and abuse
while delineating States Parties’ obligations to take, “all appropriate measures” to prevent
such abuse, including providing information to persons with disabilities, families, and
caregivers on how to “avoid, recognize and report” such abuse.138
In addition, Article 16 obligates States Parties to ensure that all facilities and
programs designed to serve persons disabilities are “effectively monitored by independent
authorities” and to ensure access to “recovery, rehabilitation and reintegration” of
disabled victims of exploitation, violence or abuse. 139 Article 16 also requires
governments to investigate and prosecute allegations of exploitation, violence, or abuse as
well as ensure persons with disabilities enjoy effective access to justice, which includes
the provision of appropriate accommodations as required.140 Moreover, Article 16
requires that States Parties develop and implement effective legislation and policies,
including women and child focused legislation and policies, to ensure that instances of
exploitation, violence, and abuse against persons with disabilities are identified,
investigated, and prosecuted. This is especially relevant with regard to sexual and
reproductive rights because women and girls with disabilities are at a heightened risk of
136 See UNCRPD, fn. 123, Art. 15.
137 Id.
138 Id. Art. 16.
139 Id.
140 Id.; see generally Janos Fiala-Butora, fn. 122 (examining the obligation on States Parties to investigate
torture).
72 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
experiencing violence and abuse, including, inter alia, sexual abuse.141
Relatedly, Article 17 establishes an affirmative right to “respect for mental and
physical integrity on an equal basis with others.”142 Article 17 addresses nonconsensual
medical interventions, such as forced treatment or surgery on persons with disabilities,
including the nonconsensual sterilization of persons with disabilities, as well as the failure
to provide interventions. 143 Whereas the UNCRPD Committee has not explicitly
addressed forced and coerced sterilization under Article 17, this UNCRPD Article
stipulates additional protection for the rights of persons with disabilities in circumstances
where they have not traditionally benefitted from them.144
B. Reproductive Health Care Services and Information
Although access to appropriate and accessible reproductive health care services and
information is vital to ensuring sexual, reproductive, and parenting rights, persons with
disabilities continue to encounter significant barriers to accessing reproductive health care
services and information which detrimentally effects their wellbeing.145 Recognizing its
importance, the initial draft language of the UNCRPD encompassed a separate “right to
sexual and reproductive health services,” originating, in part, from the Standard Rules,
which stipulated that “Persons with disabilities must have the same access as others to
family-planning methods, as well as to information in accessible form on the sexual
functioning of their bodies.”146 Nevertheless, access to reproductive services was instead
incorporated into Articles 23 and 25, relating to family life and health, respectively.
Specifically, Article 25 requires States Parties to provide “the same range, quality and
standard of free or affordable health care and programmes as provided to other persons,
including in the area of sexual and reproductive health and population-based public health
141 Women with disabilities are at least two to three times more likely than women without
disabilities to experience violence and abuse. See Department for International Development, Disability
Poverty, and Development 3 (2000), available at http://www.make-development-inclusive.org/docsen/
DFIDdisabilityPovertyDev.pdf (last visited Jan. 19, 2016). Moreover, violence can take a variety of forms —
physical, emotional, sexual, economic — and includes intimate partner violence, violence at the hands of
caregivers, sexual violence, institutional violence, and forced sterilizations and forced abortion. See Stepanie
Ortoleva & Hope Lewis, Forgotten Sisters — A Report on Violence against Women with Disabilities: An
Overview of Its Nature, Scope, Causes and Consequences, Sect. II, (2012).
142 See UNCRPD, fn.123, Art. 17.
143 See UNCRPD Comm., Concluding observations on the initial report of Spain, 6th sess., Sep. 19–23,
2011, UN DOC. CRPD/C/ESP/CO/1, 37–38 (Sep. 23, 2011).
144 Indeed, the UNCRPD Committee may have intended to address sterilization when recommending “the
abolition of surgery and treatment without the full and informed consent of the patient.” UNCRPD Comm.,
Concluding Observations on the initial state report of Tunisia, 5th sess., Apr. 11–15, 2011, UN DOC.
CRPD/C/TUN/CO/1, 29 (May 13, 2011).
145 Id. Introduction, for discussion on barriers to reproductive health care services and information.
146 Standard Rules on the Equalization of Opportunities for Persons with Disabilities G.A. Res. 48/96, UN
DOC. A/RES/48/96, Rule 9(2) (Mar. 4, 1994).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 73
programmes.”147 In other words, the same services provided to the general population
must also be provided to persons with disabilities on the same terms. In addition, Article
25 necessitates “including on the basis of free and informed consent by, inter alia, raising
awareness of the human rights, dignity, autonomy and needs of persons with disabilities
through training and the promulgation of ethical standards for public and private health
care.”148 Thus, sterilization procedures may only be performed when individuals have
given their “free and informed consent.”149 Finally, Article 25 prohibits discrimination
against persons with disabilities in the provision of health insurance and prevents
discriminatory denial of health care or health services based disability.150
In addition, Article 9 applies to reproductive health care services and information.
Pursuant to Article 9, “States Parties shall take appropriate measures to ensure to persons
with disabilities access, on an equal basis with others, to the physical environment, to
transportation, to information and communications, including information and
communications technologies and systems, and to other facilities and services open or
provided to the public, both in urban and in rural areas.” 151 The accessibility
requirements also apply to “private entities that offer facilities and services which are
open or provided to the public” and include both physical access as well as the delivery of
information in an accessible manner.152
C. Family and Parenthood
Across the globe, the right to raise a family is unquestionably one of the most
cherished rights. Indeed, “[t]he desire to become a parent traverses all cultural, physical,
147 See UNCRPD, fn.123, Art. 25.
148 Id.
149 Notably, Art. 23, discussed infra, states that persons with disabilities must have the right “to decide
freely and responsibly on the number and spacing of their children and… [the right to] retain their fertility on
an equal basis with others.” Hence, the UNCRPD should be interpreted to permit persons with disabilities to
undergo sterilization when two conditions are satisfied: they “decide freely” to do so and also give their “free
and informed consent.”
150 See UNCRPD, fn. 123, Art. 25.
151 Id. Art. 9.
152 Id.; Persons with disabilities regularly encounter structural barriers that preclude them from receiving
adequate reproductive health care. For instance, women with disabilities regularly encounter inaccessible
medical equipment, such as examination tables, pelvic exam equipment, scales, and mammography machines,
which results in subpar — or no — reproductive health care. See generally Elizabeth Pendo, Disability,
Equipment Barriers and Women’s Health: Using the ADA to Provide Meaningful Access, 2 St. Louis
University Journal of Health Law and Policy 15 (2008); Persons with disabilities also encounter barriers to
receiving appropriate reproductive information. For example, women who are deaf or blind regularly
experience communication impediments, such as access to sign language interpreters, providers willing to
read information to patients, or information in alternative formats. Id.; In addition, persons with intellectual
disabilities confront communication barriers, including information not being delivered in an appropriate and
accessible manner, such as sexuality education. See generally Swango-Wilson, fn. 31.
74 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
and political boundaries.”153 Nonetheless, examples abound of persons with disabilities
being denied this most basic right.154
Article 23 of the UNCRPD is the most pertinent assurance of the rights of persons
with disabilities to create and maintain families. Precisely, Article 23 requires States
Parties to “take effective and appropriate measures to eliminate discrimination against
persons with disabilities in all matters relating to marriage, family, parenthood and
relationships, on an equal basis with others…ensure the rights and responsibilities of
persons with disabilities with regard to guardianship, wardship, trusteeship, adoption of
children or similar institutions, where these concepts exist in national legislation; in all
cases the best interests of the child shall be paramount…render appropriate assistance to
persons with disabilities in the performance of their child-rearing responsibilities…[and]
ensure that a child shall not be separated from his or her parents against their will, except
when competent authorities subject to judicial review determine, in accordance with
applicable law and procedures, that such separation is necessary for the best interests of
the child…”155 Thus, States Parties have very explicit obligations to ensuring the rights
of parents with disabilities and their children, many which have not yet fully been
afforded to persons with disabilities. For instance, “[i]n no case shall a child be separated
from parents on the basis of disability of either the child or one or both of the parents.”
However, substantial evidence suggests that children of parents with disabilities are
commonly removed from their parents because of their parent’s disability.156
153 See Rocking the Cradle, fn. 22 at 43.
154 See e.g. Re C (A Child), [2014] EWCA Civ 128 (In London, the child of a deaf father and mother with
cognitive disabilities as well as speech and hearing impairments was placed in foster care and subsequently
available for adoption after questions arose concerning the parents’ capacity to parent their daughter. Notably,
social workers failed to provide interpreters prior to placing in the child in foster care. The lower court found
them unable to care for their daughter due to their disabilities and the parents successfully appealed.); Philip
Lee-Shanok, Disabled Parents Fight to Keep Newborn at Home, CBC NEWS (May 2, 2012), available at
http://www.cbc.ca/news/canada/toronto/disabled-parents-fight-to-keep-newborn-at-home-1.1185318 (last
visited Jan. 19, 2016) (In April 2012, a Canadian couple, both of whom have Cerebral Palsy, faced a fight to
retain custody of their newborn after authorities threatened to remove the child if they did not obtain
“round-the-clock care from an ‘able-bodied attendant’”); Christian Gysin, Couple with Learning Disabilities
Given £12,000 Compensation after Their Newborn Child Was Taken from Them for More than a Year, Daily
Mail (Oct. 30, 2014), available at http://www.dailymail.co.uk/news/article-2814395/Couple-learning-
disabilities-given-12-000-compensation-newborn-child-taken-year.html (last visited Jan. 19, 2016) (A British
couple with intellectual disabilities was reunited with their baby and awarded damages by a High Court in
London after being separated from their child for nearly 18 months. Judge determined that social workers
handled the case of “Baby H.” incorrectly when they removed the child from custody, placed her with a foster
family, and failed to explain to her parents just why she’d been taken away in the first place. Meanwhile, it
took more than a year for officials to properly and honestly assess whether Baby H.’s family was fit to parent.
The sluggish action on the case was so appalling that the judge even felt compelled to comment on how
authorities “dragged its feet”).
155 See UNCRPD, fn. 123, Art. 23.
156 See generally Rocking the Cradle, fn. 22; Stein, fn. 19.
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 75
In addition to ensuring the rights of parents with disabilities and their children in child
protection and custody matters, Article 23 addresses the reproductive rights of persons
with disabilities by requiring States Parties to guarantee “[t]he rights of persons with
disabilities to decide freely and responsibly on the number and spacing of their children
and to have access to age-appropriate information, reproductive and family planning
education are recognized, and the means necessary to enable them to exercise these rights
are provided.”157 In other words, States Parties must safeguard the reproductive rights of
persons with disabilities, including their right to procreate if the individual so chooses. In
addition, at least one commentator has opined that States Parties have affirmative
obligations pursuant to Article 23 vis-à-vis surrogacy.158
Finally, Article 23 should be interpreted broadly to fully guarantee the rights of
persons with disabilities to create and maintain families. States Parties are explicitly
prohibited from discriminating against parents with disabilities while correspondingly
supporting persons with disabilities in their pursuit to become parents and raise families.
In fact, at least one court has referenced the UNCRPD in denying India’s government’s
request for authorization to terminate the pregnancy of a woman with an intellectual
disability and ordered the local government to provide appropriate supports to the mother
and child.159 Moreover, commentators and advocates have embraced the emphasis on
supports and suggested its application to adaptive parenting equipment.160 In addition,
Article 23 implicates States Parties’ adoption policies by forbidding bans on persons with
disabilities becoming foster parents or adopting.161
D. Legal Capacity
As previously discussed, questions concerning consent and recognition of capacity
abound with regard to the sexual, reproductive, and parenting rights of persons with
disabilities (particularly those with intellectual and psychiatric disabilities), and especially
157 See UNCRPD, fn. 123, Art. 23.
158 Lindsey Coffey, A Rights-Based Claim to Surrogacy: Article 23 of the Convention on the Rights of
Persons with Disabilities, 20 Michigan State International Law Review 259, 260 (2012) (arguing that Art. 23
is “a powerful tool for citizens to demand that their states provide effective and appropriate assistance through
surrogacy”).
159 See Srivastava, infra note 225 Art 26. (“We must also bear in mind that India has ratified the
Convention on the Rights of Persons with Disabilities on Oct. 1, 2007 and the contents of the same are
binding on our legal system”).
160 See Callow, Buckland & Jones, fn. 34 at 40.
161 See Rocking the Cradle, fn. 22 at 181–182 (“Adoption horror stories are all too common for
prospective parents with disabilities. The adoption system is riddled with de facto and de jure discrimination
that prevents countless prospective parents with disabilities from adopting. Examination of domestic and
international adoption practices reveals that reforms are urgently needed across the broad spectrum of
adoption practices and procedures”). In addition, some countries categorically deny prospective adoptive
parents based on their disability, see id. at 199–202.
76 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
when cases involve sterilization.162 Indeed, “persons with disabilities remain the group
whose legal capacity is most commonly denied in legal systems worldwide.”163 Such
denial of legal capacity has resulted in the deprivation of various rights, inter alia, “the
right to marry and found a family, reproductive rights, parental rights, [and] the right to
give consent for intimate relationships and medical treatment[.]”164 Article 12 informs
this topic, affirming, that States Parties must “recognize that persons with disabilities
enjoy legal capacity on an equal basis with others in all aspects of life.”165 Notably
Article 12’s use of the phrase “‘legal capacity’ includes not simply the capacity to have
rights (or passive capacity) but also the capacity to act or exercise one’s rights.”166
Accordingly, “States Parties shall take appropriate measures to provide access by persons
with disabilities to the support they may require in exercising their legal capacity.”167
Importantly, the “use of the word ‘support,’ and the related concept of supported decision
making, represents nothing less than a ‘paradigm shift’ away from well-established but
increasingly discredited notions of substituted decision making.”168 Moreover, whereas
the UNCRPD does not describe the exact population that “may require” support in
exercising legal capacity, it applies to persons whom many States Parties have legally
circumscribed from doing so.169
To clarify States Parties’ obligations pursuant to Article 12, in April 2014, the
UNCRPD Committee promulgated a General Comment,170 noting, “there has been a
general failure to understand that the human rights-based model of disability implies a
shift from the substitute decision-making paradigm to one that is based on supported
decision-making.”171 According to the UNCRPD Committee, “concepts of mental and
162 See discussion in Part I.B.
163 See UNCRPD Comm., General Comment No. 1 (2014) — Art. 12: Equal recognition before the Law,
11th sess., UN DOC. CRPD/C/GC/1, 8 (May 18, 2014) (the “General Comment No. 1”).
164 Id.
165 See UNCRPD, fn. 123, Art. 12.
166 Robert D. Dinerstein, Implementing Legal Capacity under Article 12 of the UN Convention on the
Rights of Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making, 19
Human Rights Brief 8 (2012).
167 See UNCRPD, fn. 123, Art. 12.
168 Dinerstein, fn. 166 at 8 (internal footnote omitted); see also General Comment No. 1 at 17 (“‘Support’
is a broad term that encompasses both informal and formal support arrangements, of varying types and
intensity”).
169 See Gerard Quinn, Personhood & Legal Capacity: Perspectives on the Paradigm Shift of Article 12
CRPD, Paper Presented at Harvard Law School (Feb. 20, 2010), reprinted in NIU Galway Centre for
Disability Law and Policy, Submission on Legal Capacity to the Oireachtas Committee on Justice, Defence &
Equality app. 6, available at http://www.nuigalway.ie/cdlp/documents/cdlp_submission_on_legal_capacity_
the_oireachtas_committee_on_justice_defence_and_equality_.pdf (last visited Jan. 19, 2016) (reflecting on
Art. 12, “And yes it does apply to even those who – to all outward appearances – cannot form or express a
preference or exert their will”).
170 General Comment No. 1, fn. 163.
171 Id. at 3.
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 77
legal capacity have been conflated so that where a person is considered to have impaired
decision-making skills, often because of a cognitive or psychosocial disability, his or her
legal capacity to make a particular decision is consequently removed.”172 Instead, the
UNCRPD requires “[s]upport in the exercise of legal capacity must respect the rights,
will and preferences of persons with disabilities and should never amount to substitute
decision-making.”173 Thus, “States parties must holistically examine all areas of law to
ensure that the right of persons with disabilities to legal capacity is not restricted on an
unequal basis with others.”174
When ensuring the sexual, reproductive, and parenting rights of persons with
disabilities, States Parties must also be cognizant of their obligations pursuant to Article
23, which, in part, obligates that “the means necessary to enable them to exercise these
rights [to decide freely and to have access to information] are provided.”175 Thus, States
Parties must provide the necessary means to permit persons with disabilities to exercise
their right to decide freely concerning sterilization. In other words, instead of establishing
an exception for persons with disabilities who are perceived unable either to decide freely
or to give their “free and informed consent,” the UNCRPD constructs an affirmative
obligation to adopt measures so that persons with disabilities may themselves, with or
without assistance, exercise this right.
Contrary to a number of domestic laws, the UNCRPD does not explicitly provide for
any situations where the decision of a third party may operate as a permissible substitute
for the decision of a person with disability.176 Instead, the UNCRPD requires that
supported decision-making processes replace the existing substitute decision-making
arrangements sanctioned by many States Parties’ laws.177 This supported decision-
making mandate in Article 12(3) extends to all decisions that have legal effect, including
172 Id. at 15; but see Melvin Colin Freeman, Kavitha Kolappa & Jose Miguel Caldas de Almeida, et al,
Reversing Hard Won Victories in the Name of Human Rights: A Critique of the General Comment on Article
12 of the UN Convention on the Rights of Persons with Disabilities, The Lancet Psychiatry (2015), available
at http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00218-7/abstract (last visited Jan. 19,
2016) (asserting “the General Comment on Article 12 of the UNCRPD threatens to undermine critical rights
for persons with mental disabilities, including the enjoyment of the highest attainable standard of health,
access to justice, the right to liberty, and the right to life”).
173 Id. at 17.
174 Id. at 7.
175 See See UNCRPD, fn. 123, Art. 23 (emphasis added).
176 See Annual Report of the United Nations High Commissioner for Human Rights: Thematic Study on
enhancing awareness and understanding of the Convention on the Rights of Persons with Disabilities, Human
Rights Council (the “OHCHR Thematic Study”), 10th sess., UN DOC. A/HRC/10/48, 45 (2009) (interpreting
Art. 12 to prevent legal capacity restrictions whether they are directly or indirectly based on disability).
177 See UNCRPD, fn. 123, Art. 12; see also OHCHR Thematic Study at 43; see generally Dinerstein, fn.
166.
78 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
acts that require free and informed consent.178 Arguably, the decision to undergo
sterilization is an example of one such decision. Hence, in light of Articles 23 and 25,
combined with Article 12, States Parties must provide disabled persons the necessary
means to make such choices, including the provision of decision-making supports, if
necessary. Further, given the nature of sterilization and the long history of abuse, States
Parties must establish safeguards “to prevent abuse in accordance with international
human rights law.”179 In sum, decisions regarding sterilization of persons with disabilities
must always reflect the individual’s wishes.
III. AREAS OF FUTURE RESEARCH
As this article demonstrates, issues concerning sexual, reproductive, and parenting
rights of persons with disabilities are complex and require further information and
consideration. Many issues remain for scholars, the legal profession, and policy makers to
resolve. Given the historical treatment of the sexual, reproductive, and parenting rights of
persons with disabilities, these contemplations will at times be initial ones for law and
policy makers who will also need to overcome deeply embedded and pernicious
stereotypes about the group. When engaging these issues, law and policy makers must
honor the mandate and spirit of the UNCRPD by actively consulting with persons with
disabilities and their representative organizations.180 In this Part, we highlight some
issues for future attention.
A common absence across the cases addressing the sterilization of persons with
disabilities cases is the question of whether the individual has consented to the requested
sterilization procedure. Courts instead have presumed that the person with a disability is
incapable of making an informed decision, and so have not required their consent.181
Thus, although the general presumption in bioethics is that “the interests or desires of the
178 See Comm’r for H.R., Council of Europe, Who Gets to Decide? Right to Legal Capacity for Persons
with Intellectual and Psychosocial Disabilities, CommDH/Issue Paper 2 (Feb. 20, 2012), available at
https://wcd.coe.int/ViewDoc.jsp?id=1908555#P282_28306 (last visited Jan. 19, 2016) (“Legal capacity is
essential for benefitting from the principle that medical interventions must be based on free and informed
consent”).
179 See UNCRPD, fn. 123, Art. 12 (“States Parties shall ensure that all measures that relate to the exercise
of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with
international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal
capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue
influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and
are subject to regular review by a competent, independent and impartial authority or judicial body. The
safeguards shall be proportional to the degree to which such measures affect the person’s rights and
interests”).
180 See UNCRPD, fn. 123, Art. 4. See also Janet E. Lord & Michael Ashley Stein, Jacobus tenBroek,
Participatory Justice, and the UN Convention on the Rights of Persons with Disabilities, 13 Texas Journal on
Civil Liberties & Civil Rights 167 (2008).
181 See General Comment No. 1, fn. 163 at 35.
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 79
medical patient reign supreme,” this same presumption has been “disregarded or
dismissed as insignificant when considering the desires of a woman with a disability.”182
Notably, even when judicial outcomes prohibit sterilization of persons with disabilities
under the best interest standard, these same courts assume that persons with disabilities
cannot determine or express their own best interests.
The leading Canadian Supreme Court case, E. (Mrs.) vs Eve,183 provides a clear
example of how even progressive courts fail to consider the individual’s wishes and
instead assume she is incapable of deciding. Here, the mother of Eve, a 24-year-old
woman with intellectual disabilities, sought court approval to force Eve to undergo a
hysterectomy for the purpose of preventing pregnancy.184 Despite the positive outcome,
denial of involuntary sterilization, the Supreme Court nevertheless accepted the lower
court’s categorization of Eve as incompetent.185 Notwithstanding extensive evidence that
Eve was fully integrated in her community, regularly attended a school for adults with
disabilities, and had romantic interests in a peer,186 the lower court found, and the
Supreme Court accepted, that Eve was incapable of making decisions regarding her
personal relationships and reproductive health. Ironically, the Supreme Court’s holdings
were made while also pronouncing that “In the absence of the affected person’s consent,
it can never be safely determined that [sterilization] is for the benefit of that person.”187
Similarly, the landmark Australian case of In re Marion,188 exemplifies out how even
well-intending courts often ignore an individual’s desires and assume incapacity. Here,
the parents of a 14-year-old girl with an intellectual disability, severe deafness, epilepsy,
and “behavioral problems” sought court authorization for a simultaneous hysterectomy
and ovariectomy to prevent pregnancy.189 In ultimately deciding against sterilization, the
High Court of Australia did not consider Marion’s wishes, but instead determined that in
the absence of valid therapeutic medical treatment, her best interests militated against the
procedure.190
Likewise, the court in In re Estate of K. E. J.,191 disregarded the wishes of a person
with a disability, while nonetheless denying authorization to sterilize a 29-year-old
American woman with an acquired brain injury, which left her “mentally disabled.”192
This case is particularly distinctive because it quoted K. E. J.’s expressed wishes
182 Volz, fn. 20 at 209.
183 [1986] 2 S.C.R. 388 (Can.).
184 Id. at 389.
185 Id. at 394 (accepting “that Eve is not capable of informed consent[.]”).
186 Id. at 393.
187 Id. at 390.
188 See In re Marion, fn. 91.
189 Id. at 221.
190 Id. at 250.
191 V. H. vs K. E. J., 887 N.E.2d 704 (ILL. APP. CT. 1ST DIST. 2008) (the “In re Estate of K. E. J.”).
192 Id. at 708.
80 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
considerably,193 but nonetheless held that K. E. J.’s desires were not pertinent to
determining her best interests because she was incapable of making decisions regarding
sterilization and reproduction. 194 The sterilization was denied on the ground that
alternative, less invasive contraception options were available.195
The above cases demonstrate how even when courts decide favorably for persons
with disabilities, they often do so without considering the individual’s wishes because
they assume the individual is not able to consent. Further, as demonstrated in Part I.B.,
the “best interest” standard in sterilization has perpetuated discriminatory attitudes
against persons with disabilities and facilitated the practice of forced sterilization. Indeed,
arguments surrounding “best interests” often have little to do with the rights of persons
with disabilities. Rather, they relate to social factors such as avoiding inconvenience to
caregivers, the lack of adequate safeguards to protect against sexual abuse and
exploitation, and the absence of adequate and appropriate services to support persons with
disabilities when deciding whether to parent.
In contrast, and as described in Part II, the issue of legal capacity permeates all
informed decisions regarding the sexual, reproductive, and parenting rights by persons
with disabilities. Strikingly, Article 12 of the UNCRPD 196 and the UNCRPD
Committee’s General Comment197 make clear that equal legal capacity can only be made
operative within an environment where support is provided, when needed, for
decision-making.198 Accordingly, States Parties must provide appropriate supports to
enable the individual to decide whether to undergo a sterilization procedure — or any
other determination affecting their sexual, reproductive, and parenting rights. But what
would such support look like? How would it manifest? What safeguards are needed? And
what else is required to enable the inherent decision-making abilities of persons with
disabilities within a human rights-based mechanism? Governments, law and policy
makers, academics, public health officials, and many others globally are grappling with
these issues without consensus beyond the basic platitudes of honoring the dignity and
autonomy of persons with disabilities and enabling their equal decision-making.199
193 See e.g. id. at 710 (“However, she said that she did not want a tubal ligation. Instead, she wanted to
have two children when she was married to a husband who would support her and help her take care of
them”).
194 Id. at 718.
195 Id. at 721.
196 See UNCRPD, fn. 123, Art. 12.
197 General Comment No. 1, fn. 163.
198 See discussion in Part II.D.
199 Compare, e.g. Tina Minkowitz, The United Nations Convention on the Rights of Persons with
Disabilities and the Right to Be Free from Nonconsensual Psychiatric Interventions, 34 Syracuse Journal of
International Law and Commerce 405 (2007) (asserting that only individuals with disabilities can make valid
determinations as to their own desires), with Melvin Colin Freeman, Kavitha Kolappa & Jose Miguel
Caldas de Almeida et al, Reversing Hard Won Victories in the Name of Human Rights: A Critique of the
General Comment on Article 12 of the UN Convention on the Rights of Persons with Disabilities, 2 The
Lancet Psychiatry 844 (2015) (maintaining that some decision-making must occur in collaboration with
health care professionals).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 81
The current default mechanism, in the US and elsewhere, requires courts to begin
these cases by determining the capacity of the affected individual with a disability.200
Thus, a judge must first determine if the individual “is capable of making her own
reproductive decisions.”201 If an individual has been “deemed incompetent for the
purpose of giving informed consent,” courts apply one of three standards to determine
whether to proceed with sterilization or termination: (1) the substituted judgment standard;
(2) the mandatory criteria rule; or (3) the best interest standard.202 All three standards
require court authorization as a way to “protect the interests of the mentally disabled.”203
Yet, as demonstrated throughout this article, courts are influenced by the same stereotypes
regarding the decision-making capabilities of persons with disabilities that influence the
rest of society, and in consequence render judgments that violate the legal personhood of
individuals with disabilities when it comes to their sexual, reproductive, and parenting
rights.204
To ensure judicial impartiality, commentators have presented a range of
recommendations to better guarantee the sexual and reproductive rights of persons with
disabilities, namely vis-à-vis limiting forced and coerced sterilization. For instance, some
opine, “courts should consider staying of this arena altogether,”205 while contending if
the judicial system is going to continue to reign over these decisions, they must resolve to
address the many existing weaknesses. For instance, “[c]ourts must devote more energy
to examining the least restrictive means to prevent conception, both present means and
what current research may show as plausible future contraceptives.”206 On a more basic
level, these decisions must be made truly neutrally, based on the actual best interest of the
person and not antiquated and false beliefs about persons with disabilities. Relatedly,
some have argued a statutory and regulatory approach may be more apposite for resolving
200 Kundani, fn. 21 at 72.
201 Id.; see also Jaegers, fn. 46 at 961.
202 Maura McIntyre, Note, Buck vs Bell and Beyond: A Revised Standard to Evaluate the Best Interests of
the Mentally Disabled in the Sterilization Context, 2007 University of Illinois Law Review 1303, 1311–1312
(2007); see generally Kundani, fn. 21 at 78.
203 McIntyre, fn. 202 at 1312.
204 The same is true for other social opportunities, for example, political participation. See János
Fiala-Butora, Michael Ashley Stein & Janet E. Lord, The Democratic Life of the Union: Toward Equal Voting
Participation for Europeans with Disabilities, 55 Harvard International Law Review 71 (2014).
205 See Cepko, fn. 13 at 164 (“Petitioners, who are usually parents and other relatives, carry with them the
loudest voice, the most credibility, and the aura of parental martyrs, skewing the process in their
favor…Court-appointed representation is often hollow, unconscionably failing to present arguments in
opposition to the petition. Neither the interests of mentally disabled individuals nor those of the mentally
disabled community in general are being advanced. Mentally disabled women themselves seldom appear in
court, or if they do, are often unable to voice their own concerns. Current practice discourages healthy debate,
or any debate at all in some cases, of what is in fact in the best interest of the individual”).
206 Id.
82 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
the ongoing deprivation of persons with disabilities.207 Nevertheless, whether it is
adjudicators or legislators, clearly there are “some very basic flaws in the process” that
must be swiftly addressed.208 Indeed, “the power to authorize sterilization is so awesome,
its exercise is so open to abuse, and the consequences of its exercise are generally so
irreversible, that guidelines, if not rules, should be prescribed to govern it.”209
Related to capacity and consent issues is the legal mechanism of guardianship.
Regrettably, “[a]cross the world, adults with disabilities are stripped of their rights
(including the right to refuse sterilization) through a process known as guardianship. If a
court declares a person ‘incompetent,’ all of her decision-making rights are transferred to
a guardian. In many countries, guardianship is both overused and abused.210 Indeed, a
recent survey in the US found full guardianship continues to be favored while
less-restrictive alternatives are not often discussed. 211 Notably, the World Health
Organization (WHO) recommends that persons with disabilities be provided supported
decision-making rather than traditional substituted decision-making or guardianship.212
In addition, WHO has avowed, “Like any other contraceptive method, sterilization should
only be provided with the full, free and informed consent of the individual.”213 Echoing
these sentiments, in 2011, the International Federation of Gynecology and Obstetrics
(FIGO) adopted recommendations vis-à-vis obtaining an individual’s “free and informed
consent” to undergo sterilization procedures. In so doing, the FIGO recognized, “Human
rights include the right of individuals to control and decide on matters of their own
sexuality and reproductive health, free from coercion, discrimination, and violence. This
includes the right to decide whether and when to have children, and the means to exercise
this right.”214 We agree with these principles. Nevertheless, the mechanisms whereby
such decisions can be adequately supported, and in a manner that elicits genuine and
207 Id.; see generally Elizabeth Ann McCaman, Limitations on Choice: Abortion for Women with
Diminished Capacity, 24 Hastings Women’s Law Journal 155 (2013) (examining issues related to abortion
among women with disabilities who have been deemed to lack capacity and recommending a statutory and
regulatory scheme for women with diminished capacity to have abortions).
208 See Cepko, fn. 13 at 164.
209 See In re Marion, fn. 91 at 272 (Brennan, J., dissenting).
210 Open Society Foundations, fn. 27 at 6.
211 See generally J. Matt Jameson, Tim Riesen & Shamby Polychronis et al, Guardianship and the
Potential of Supported Decision Making with Individuals with Disabilities, 40 Research and Practice for
Persons with Severe Disabilities 36 (2015).
212 World Health Organization, Eliminating Forced, Coercive and Otherwise Involuntary Sterilization: An
Interagency Statement 6–7 (2014), available at http://www.who.int/reproductivehealth/publications/
gender_rights/eliminating-forced-sterilization/en/ (last visited Jan. 19, 2016).
213 Id. at 1.
214 Comm. for the Study of Ethical Aspects of Human Reproduction & Women’s Health, Female
Contraceptive Sterilisation, in Ethical Issues in Obstetrics and Gynecology 122–123 (International Fed’n of
Gynecology & Obstetrics, 2012), available at http://www.glowm.com/pdf/English%20Ethical%20Issues%
20in%20Obstetrics%20and%20Gynecology.pdf (last visited Jan. 19, 2016) (the “FIGO Guidelines”).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 83
informed consent, have not yet been elucidated.
Similarly linked to the issue of capacity and consent, and thus to guardianship as well,
is the politically charged question of whether family members have a role to play in
decisions relating to the sexual, reproductive, and parenting rights of persons with
disabilities.215 Many of the cases described in this article portray situations where family
members — at times against the express wishes of their progeny with disabilities, even
those who are adults — use their legal role as guardians to seek and implement their
children’s sterilization or abortion. That dynamic was clearly on display in the Ashley X
case where a family authorized the performance of sterilization and growth attenuation
procedures on their young daughter, citing their desire to improve Ashley’s quality of
life.216 Families in sterilization cases involving individuals with intellectual disabilities
regularly employ similar rationales.217 For that reason, FIGO has opined that “only
women themselves can give ethically valid consent to their own sterilization” and that
family members “cannot consent on any woman’s or girl’s behalf,”218 and some
commentators have argued that such decisions be removed from parents to ensure
impartiality.219 Discovering a suitable, human rights-based mechanism that empowers
person with disabilities while also protecting them against possible misuse, will require
time, resources, and much reflection.
Also connected to this discussion is the role, if any, of family. A specific article on the
role of the family was not included in the final UNCRPD, yet the preamble requires that
“persons with disabilities and their family members should receive the necessary
protection and assistance to enable families to contribute towards the full and equal
enjoyment of the rights of persons with disabilities.”220 Further, for better or worse, in
most parts of the world, families provide the primary support for persons with
disabilities.221 This begs the question of whether family members have a role to play,
whether via Article 12 in supporting decisions or otherwise, in the sexual, reproductive,
and parenting rights of persons with disabilities. It raises, in stark relief, the question of
how such a role could be implemented in a manner that truly honors the equal dignity,
215 See generally Arie Rimmerman, Family Policy and Disability 175–195 (2015).
216 See Pillow Angels, fn. 96.
217 See e.g. In re Marion, fn. 91 at 306 (finding that caring for a child with an intellectual disability “adds
a significant burden to the ordinarily demanding task of caring for children” and that subject to the child’s
best interests, “the interests of other family members, particularly primary care-givers, are relevant to a
court’s decision whether to authorise sterilisation.” Id. at 306).
218 See FIGO Guidelines, fn. 214 at 123.
219 Trynie Boezaart, Protecting the Reproductive Rights of Children and Young Adults with Disabilities:
The Roles and Responsibilities of the Family, the State, and Judicial Decision-Making, 26 Emory
International Law Review 69, 85 (2012).
220 See UNCRPD, fn. 123, Preamble (x).
221 See World Report on Disability, fn. 12 at 137 (“Most assistance and support comes from family
members or social networks”).
84 FRONTIERS OF LAW IN CHINA [Vol. 11: 53
value, worth and human rights of persons with disabilities as rights holders. Article 12 of
the UNCRPD obliges States Parties to implement supported decision-making procedures
that curtail conflicts of interest,222 but provides little guidance on what that means in
practice. The same is true for the UNCRPD Committee’s General Comment, which
requires that “the ‘best interpretation of will and preferences’ must replace the ‘best
interests’ determinations.”223 We agree once more with these general principles, but again,
have not discovered detailed programs that make clear how they ought to be implemented.
Who, for example, is to engage in such interpretation, and what safeguards should be put
into place to ensure that the inferred desires of these individuals are true? How will such a
mechanism avoid the current perils of guardianship?
Finally, States Parties’ obligations do not end at restraining themselves from
sterilizing persons with disabilities. Indeed, Article 23 of the UNCRPD requires States
Parties to support persons with disabilities in raising families.224 Such obligations were
recognized in a 2009 landmark decision, where the Supreme Court of India denied a
request to authorize an abortion on a woman with an intellectual disability, upholding her
right to parenthood.225 In addition, the Court recognized that the woman would likely
need assistance parenting and so directed the government to provide care to the woman
and her child.226 Future research should also consider approaches to implementation of
supports and services for parents with disabilities and their families. For some
governments, particularly those with limited resources, questions concerning allocation
judgment will arise. However, evidence suggests that in-home supports and services are
cost-effective compared to the long-term costs of termination of parental rights.227 Thus,
we recommend States Parties dedicate increased attention to the development and
implementation of supports and services for parents with disabilities and their families.
CONCLUSION
Whereas sexual, reproductive, and parenting rights have largely been recognized as
one of the most basic rights, persons with disabilities continue to experience substantial
and pervasive discrimination in these areas. Indeed, for persons with disabilities,
adjudication of sexual, reproductive, and parenting rights has overwhelmingly centered
on involuntary sterilization, forced abortion, and the removal of children instead of on
222 See UNCRPD, fn. 123, Art. 12.
223 General Comment No. 10, fn. 163 at 21.
224 See discussion Part II.C.
225 See Suchita Srivastava & Anr. vs Chandigarh Administration, 243 A.I.R. 2010 S.C. 235 (India).
226 Id. at 31; see also id. at 19 (“It is evident that the woman in question will need care and assistance
which will in turn entail some costs. However, that cannot be a ground for denying the exercise of
reproductive rights”).
227 Dale Margolin, No Chance to Prove Themselves: The Rights of Mentally Disabled Parents under the
Americans with Disabilities Act and State Law, 15 Virginia Journal of Social Policy and the Law 112,
139–141 (2007).
2016] PERSONS WITH DISABILITIES AND THEIR SEXUAL, REPRODUCTIVE, AND PARENTING RIGHTS 85
equal access to sexual and reproductive health care services and information and
parenting with a disability.
Deprivation of the sexual, reproductive, and parenting rights of persons with
disabilities is largely the result of longstanding stereotypes that portray persons with
disabilities either as asexual or as unable to engage in intimate relationships or sexual and
reproductive activities. Sterilization exemplifies the significant stigma disabled persons
face in the realm of sexual, reproductive, and parenting rights. As this article
demonstrates, jurisprudence across time and diverse jurisdictions reflect a strong
propensity toward restricting the rights of persons with disabilities. Historically, these
decisions were openly grounded in eugenics ideology, whereas nowadays the influence of
eugenics is more implicit. Consistent across time and jurisdictions are stereotypes
regarding the inability of persons with disabilities to determine their own sexual,
reproductive, and parenting needs. Indeed, even when prohibiting sterilization, courts fail
to even consider what the individual with a disability wishes, assuming instead that they
are unable to decide such matters.
The UNCPRD symbolizes a paradigm shift in the way sexual, reproductive, and
parenting rights of persons with disabilities are to be considered and implemented.
Breaking with historical stereotypes of persons with disabilities, the UNCRPD requires
equal access to all types of health care — including that related to sexual and
reproductive health services and information, mandates respect for family and parenting
relationships, and requiring recognition of an individual’s autonomy even when their
decisions require support mechanisms. Ensuring that these rights are operational, however,
also requires specific programming and resource commitments, including the complex
issue of structuring a human rights-based supported decision-making model for
stakeholders who require such support.
Many issues remain for scholars, the legal profession, and policy makers to resolve.
Further research and consideration must address highly significant issues involving
capacity and consent as they relate to supported decision-making mechanisms. Future
attention must also focus on approaches that can implement support and services for
parents with disabilities and their families.