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

• Citation: Vol. 26 No. 1
• Publication year: 2010
• topic: Family Law

PROTECTING THE REPRODUCTIVE RIGHTS OF CHILDREN AND YOUNG ADULTS WITH DISABILITIES:

THE ROLES AND RESPONSIBILITIES OF THE FAMILY, THE STATE, AND JUDICIAL DECISION-MAKING†

Trynie Boezaart*

1. A GIRL’S STORY

   
   

   Angela was an eleven-year-old girl with Rett’s Syndrome, a progressive neurological disorder that results in severe intellectual and physical impairment and epilepsy.1 Angela could not talk and had “neither the coordination or the mental faculties to be able to use sign language.”2 She acted “as a three month-

   old baby would.”3 In her ninth year, Angela’s menstrual periods commenced, and while her epilepsy was controlled by medication, seizures could occur

   when she had a heavy menstrual period.4 Excessive bleeding during these periods led to an “Implanon” medical procedure being performed, but this, together with oral contraceptive pills, proved to be unsatisfactory.5 The

   
   

   † This material is based upon work supported financially by the National Research Foundation (SA). Any opinion, findings and conclusions, or recommendations expressed in this material are those of the Author, and therefore the National Research Foundation does not accept any liability in regards thereto.

   * Professor and Head, Private Law, University of Pretoria, South Africa. The Author wishes to express

   her gratitude to Lee Ann Basser and Johan D. van der Vyver, who read the manuscript and who, through their comments, contributed meaningfully to its refinement. However, the Author takes full responsibility for the views expressed herein.

   1. Rett’s Syndrome constitutes a failure of the neural pathways that impact the conscious actions of the

      person. BENJAMIN JAMES SADOCK & VIRGINIA ALCOTT SADOCK, KAPLAN AND SADOCK’S SYNOPSIS OF

      PSYCHIATRY: BEHAVIOR SCIENCES/CLINICAL PSYCHIATRY 1199–1200 (10th ed. 2007) (“The cause of Rett’s

      disorder is unknown, although the progressive deteriorating course after an initial normal period is compatible with a metabolic disorder. . . . It is likely that Rett’s disorder has a genetic basis. It has been seen primarily in girls.”) Additionally, “[a]t 6 months to 2 years . . . these children develop progressive encephalopathy with a number of characteristic features.” Id. at 1199 (“The signs often include the loss of purposeful hand movements, which are replaced by stereotypic motions, such as . . . the loss of previously acquired speech; psychomotor retardation; and ataxia. . . . All language skills are lost, and both receptive and expressive communicative social skills seem to plateau at developmental levels between 6 months and 1 year. Poor muscle coordination and an apraxic gait with an unsteady and stiff quality develop. All of these clinical features are diagnostic criteria for the disorder.”).

   2. Re Angela (Angela’s Case) [2010] FamCA 98, para. 6 (Austl.).

   3. Id.

   4. Id. para. 11.

   5. Id. para. 20.

      bleeding caused Angela to become anemic and experience other problems.6 Personal hygiene was also an issue.7 Medical advice, supported by at least three medical practitioners, proposed that a hysterectomy be performed on the child, leaving the ovaries and tubes intact to provide her with normal hormones.8 Therefore, “only the source of bleeding would be removed.”9 It was submitted that the effects on Angela would be relatively minimal and the menstrual problems would be resolved.10 As the nature of her disability was “such that she would not have the psychological capabilities to consider a pregnancy into the future,” this possibility would also have been taken care of.11

      
      

      This recent case in the Family Court of Australia, Re: Angela (“Angela’s Case”),12 illustrates the tension between fundamental rights13 and the need to address the roles and responsibilities of the family and state in the context of nonconsensual14 sterilization of, specifically, girl children and female adolescents with disabilities. This case highlights the basic question of whether such matters are best catered to in the private or public domain.15

      
      

      In Angela’s Case, the Australian Family Court was satisfied that it had jurisdiction to grant an order in a case like this16 and authorized the performance of a medical procedure removing Angela’s uterus.17 This was based on the majority decision of the Australian High Court in a similar case in

      
      

   6. Id.

   7. Id. para. 9.

   8 Id. paras. 21, 30–32.

   1. Id. para. 21.

   2. Id. para. 23.

   3. Id.

   4. Re Angela [2010] FamCA 98 (Austl.).

   5. These fundamental rights include physical integrity, human dignity, and privacy, among others. See Sec’y, Dep’t of Health & Cmty. Servs. v JWB (Marion’s Case) [1992] 175 CLR 218, 265–68, 277 (Austl.), known as “Marion’s Case,” where the court sought to balance these rights. See Melinda Jones & Lee Ann Basser Marks, Valuing People Through Law—Whatever Happened to Marion?, 17 LAW CONTEXT 147 (2000), for an in-depth discussion of Marion’s Case highlighting the articulation of the principle of inclusion by the High Court. Bates calls Marion’s Case “[t]he most important case to be decided in Australian family law in

      1992.” Frank Bates, Australian Family Law in 1992—The Year of the Loud Report?, 32 U. LOUISVILLE J. FAM. L. 233, 239 (1993–1994).

   6. The Author uses this term to underline the fact that children with severe intellectual impairment,

      irrespective of age, are unable to consent to any form of medical treatment.

   7. See generally Re Angela [2010] FamCA 98 (Austl.).

   8. Id. paras. 46–47.

   9. Id. paras. 57–58. The court considered appointing an Independent Children’s Lawyer (in terms of Sections 4 and 68L of the Family Law Act 1975) for the child but decided against it because Angela would not benefit from an appointment. Id. paras. 36–42.

      1992, Department of Health & Community Services v JWB (“Marion’s Case”),18 and on the assumption that the invasive and irreversible medical procedure19 would be in Angela’s best interests20 because the quality of her life would improve after the procedure.

      
      

      Some analysts criticized the court’s decision.21 According to University of New South Wales disability scholar Leanne Dowse, the “‘unusual’ court ruling was the first in many years to side with parents seeking an invasive, irreversible medical procedure for their disabled child.”22 Dowse argues that, “[b]eyond raising the issue of who had the right to make a decision for a

      disabled child, the case highlighted an increasing lack of services for carers of people with a disability.”23 Dowse states that since the 1980s, governments had progressively reduced residential services without improving other community support, which had placed increased strain on families.24 Referring to the

      
      

   10. Id. paras. 44–47; see also Sec’y, Dep’t of Health & Cmty. Servs. v JWB (Marion’s Case) [1992] 175 CLR 218 (Austl.). Marion was a fourteen-year-old girl with mental disabilities (mental retardation, severe deafness, and epilepsy, with an ataxic gait and behavioral problems) who resided in the Northern Territory. See Kate Parlett & Kylie-Maree Weston-Scheuber, Consent to Treatment for Transgender and Intersex Children, 9 DEAKIN L. REV. 375, 377 (2004).

   11. Re Angela [2010] FamCA para. 48. One of the medical experts was adamant that the procedure was

       not a sterilization in this particular case. Id. However, the fact that the procedure was invasive and irreversible took it outside the ambit of normal parental responsibilities. Id.

   12. Id. para. 46 (“[T]he Court must regard the best interests of the child as the paramount consideration.”).

   13. Walk in Our Shoes, AUSTRALIAN BROADCASTING COMPANY, http://www.abc.net.au/4corners/content/ 2003/transcripts/s880681.htm (last visited June 7, 2010).

   14. Courtney Trenwith, Parents Win Bid To Sterilise Daughter, BRISBANE TIMES (Mar. 9, 2010),

       http://www.brisbanetimes.com.au/queensland/parents-win-bid-to-sterilise-daughter-20100309-ptlf.html (quoting Leanne Dowse).

   15. Id. See Jones & Basser Marks, supra note 13, at 163–64 for the protocols and guidelines that have

       been developed for special medical procedures in Victoria following Marion’s Case. These protocols establish a link between the Family Court, the Office of the Public Advocate, and Victoria Legal Aid, supported by the Department of Human Services. Id. Similar protocols have also been developed in Queensland. Id.

   16. Dowse continued:

       
       

       It means that something like menstruation for a family is just one more problem issue that they have to deal with in this massive set of unmet needs . . . .

       . . . .

       Decisions like [Angela’s] have to be seen in that context; it’s often for people who are at their wits end already.

       . . . .

       It’s been a very difficult decision and I’m sure that nobody would take it lightly but . . . it’s important to understand that those people are trying to make that decision in the context that their services [and] support needs are not being met. We see this increasingly in disability where there’s an enormous amount of unmet need.

       . . . .

       Convention on the Rights of Persons with Disabilities (“CRPD”), she argues that “individuals with a disability have a right to respect for his or her physical integrity.”25

       
       

2. HYPOTHESIS

   
   

   The scenario outlined above brings, or seemingly brings, the best interests principle in conflict with other rights of children with disabilities, such as the right to physical integrity, the right to human dignity, as well as the right to retain fertility on an equal basis with others.26 The main question is: What is in

   the best interests of a child in circumstances such as these? Secondary questions in this regard are whether the courts can assume, and even expand on, parental rights to decide what is in the best interests of a particular child or whether any other forum is better informed and equipped to do so. Finally, the strengths and weaknesses of different legal frameworks in addressing the issue of nonconsensual therapeutic sterilization of children with disabilities are

   considered and evaluated.27 Recommendations are made to improve on the

   current South African framework in this regard.

   
   

   The Family Court judgment referred to the earlier Marion’s Case, which addressed these issues in a thought-provoking manner.28 The...