Persons with disabilities and their sexual, reproductive, and parenting rights: an international and comparative analysis

• Author: Robyn M. Powell, Michael Ashley Stein
• Pages: 53-85

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. RATI ON ALE S F OR 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”).