Background Paper: Disabilities

Posted by on Jan 30, 2012 in Group 1: Disabilities | 2 comments

Background Paper Abstract:

According to the World Report on Disability and Health, “More than a billion people are estimated to live with some form of disability, or about 15% of the world’s population (based on 2010 global population estimates).”  In the region of the Americas, the Pan American Health Organization has estimated that 1 in 10 persons have some form of disability. Data illuminates that women with disabilities constitute a significant proportion of overall persons with disabilities.  Globally, women or girls, who have some form of physical disability, mental disability, or some combination of disabilities thereof, equal in the range of three hundred million individuals. Women constitute three-fourths of people with disabilities in low- and middle-income countries. Data show that women with disabilities are likely to be unemployed or underemployed, are likely to be poor, and are likely to be excluded from equal access to an array of services, supports, and systems provided by civil society . . .

DOWNLOAD AND READ THE BACKGROUND PAPER HERE. The Conference welcomes all constructive comments within the comment section below.These papers have been prepared by WCL Students Fellows for the purpose of guiding the discussions during the panel sessions and the working groups.  They are not  official papers of PAHO or WCL and are not intended to reflect the opinions or official positions of those institutions.



2 Responses to “Background Paper: Disabilities”

  1. I have tried to submit comments twice, but each time I have managed to delete them inadvertently before hitting “send.” I am trying a new tack, which is to write my comments in Word and paste them into the Comment box so that if I do this again, I won’t have to reinvent the wheel one more time. If by some chance the comments were submitted anyway (which doesn’t seem likely, since no comments come up when I click on the comment bar), please excuse the repetition.

    I thought the paper sets out nicely some of the basic issues that women with disabilities face, either uniquely or more commonly than men. My comments are in the nature of suggesting some additional material/sources that the paper might explore regarding these issues.

    Part IV, C. Equal Recognition Before the Law—Legal Capacity (p.6—unpaginated)

    I would like to see the discussion go into greater depth on this issue. For example, the paper might examine the mis-use of plenary guardianship and failure to use less restrictive alternatives for individuals whose decision-making in some areas may be in need of supplementation. More fundamentally, Article 12 presents a paradigm shift in this area, away from substituted decisionmaking (such as in guardianship) and toward supported decisionmaking. Women are likely to be particularly vulnerable to over-use of guardianship. NGOs noted the connection between limitations in the recognition of capacity of women (addressed in CEDAW) and those that have operated for people with disabilities.

    Part V, Introductory Review of Prejudice, and Its Stigmatizing Affect (sic—should be “Effect”) on the Body and Reproductive Choices (p. 9—unpaginated)

    Here, one might look at those instances in which women with disabilities have been forced to bring their pregnancies to term (e.g., the case in Florida from a few years ago where Gov. Jeb Bush and legislators got involved) or, alternatively, have been forced to have abortions because someone presumed they could not function as adequate parents (see discussion below). On another front, the recent controversy over forced ultrasound screenings in VA and other states has raised again the vexing issue of prenatal diagnosis and disability. This is an issue where conventional views of women’s rights and disability rights may seem to be in conflict, though they need not be. (See Adrienne Asch’s important work on this intersection). Although women, both with and without disabilities, should have equal access to prenatal screening, it should (and does) trouble disability advocates that pregnant women informed that their fetus has Down syndrome (the most common disability for which screening can provide useful information) choose to abort approximately 92% of the time. (Some have argued that this number, drawn from a few studies, may be too high, but it is likely that the number is quite high no matter what.) Is there a way, consistent with a woman’s right to reproductive choice, to address the effect of continued stigmatization of intellectual disability on the choices women make? Is counseling that brings out the positive aspects of Down syndrome (and on families who have members with DS) the answer? See the 2008 US legislation, sponsored by Sens. Kennedy & Brownback, Prenatally and Postnatally Diagnostic Conditions Awareness Act, which, in theory, attempts to address this knowledge/counseling gap.

    Part B, Access to Health Services, 1. Physical Access to Health Services (p. 11, unpaginated)

    In addition to the excellent work by Elizabeth Pendo that the paper cites, you might look at investigations that the Equal Rights Center in Washington, DC, has conducted re inaccessible health care. (Not all of these relate to women with disabilities, but some do.) See “Ill-Prepared: Health Care’s Barriers for People with Disabilities, Nov. 2011, available at

    Also, Michael Schwartz, a Deaf law professor (and clinical law teacher) at Syracuse University College of Law, has written about and litigated cases in which Deaf patients have been denied access to sign-language interpreters during hospital visits. Some of these cases have run into standing problems under Title III of the ADA, but the practice reflects the lack of meaningful access to health services that Deaf people experience.

    In General: See also recent work by the Mental Disability Advocacy Centre (MDAC) before the European human rights system and in Eastern European countries (identified in a mass e-mail sent out on March 9, 2012, the day after International Women’s Day) regarding such problems as involuntary sterilization of women with intellectual disabilities (France), abortion without consent (Croatia), provision, without information on side effects, of contraceptives to women (but not men) in Hungarian social care institutions, guardianship for a pregnant woman with intellectual disabilities in Russia (imposed through a proceeding in which she did not participate) followed by seizing her child and putting the child in an orphanage, and an investigation into whether women in South Africa are being subjected to forced sterilizations and abortions.

  2. While health-related rights violations perpetrated against women and girls with disabilities require urgent attention, I am aware of several instances where courts have protected to varying degrees such rights for women and girls with intellectual disabilities, arguably the most vulnerable of this population.

    In 1991, the Australian High Court in Dept. of Health & Community Svcs. v. JWB prevented parents from having their 14-year old, intellectually disabled daughter undergo a hysterectomy without court authorization, even though the Court found that she was incapable of giving informed consent. For the full judgment, visit: See the Canadian Supreme Court’s related judgment in Re Eve (60) (1986) (holding that sterilization “should never be authorized for non-therapeutic purposes under the parens patriae jurisdiction”).

    More recently, in 2009, the Indian Supreme Court in Suchita Srivastava v. Chandigarh overturned a lower court’s order that a 19-20-year old, intellectually disabled ward of the state terminate a pregnancy that allegedly resulted from sexual assault by staff of the institution where she resided. Despite the circumstances of her pregnancy, the woman had expressed her desire to carry her pregnancy to term. The Court cited to the CRPD in holding that “it is amply clear that we cannot permit a dilution of the requirement for consent for proceeding with a termination of pregnancy.” The full judgment can be accessed at

    Though court protections may not always be foolproof or readily accessible, the paper might be well-served to consider cases in which women and girls with disabilities have been able to protect their health-related rights. In some respects, it may be equally, if not more, urgent to document possible solutions to rights violations than the violations themselves.

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