Reimagining the Human Rights Framework on Abortion and Disability
In October 2017, the Committee on the Rights of Persons with Disabilities (CRPD Committee) issued its concluding observations from its initial review of the United Kingdom and Northern Ireland for compliance with the Convention on the Rights of Persons with Disabilities (CRPD). Two paragraphs from this set of recommendations caught the attention of sexual and reproductive rights advocates:
The Committee is concerned about perceptions in society that stigmatize persons with disabilities as living a life of less value than that of others and about the termination of pregnancy at any stage on the basis of fetal impairment. The Committee recommends that the State party amend its abortion law accordingly. Women’s rights to reproductive and sexual autonomy should be respected without legalizing selective abortion on the ground of fetal deficiency.
This marked the first time a human rights treaty body had called on a state to eliminate one of the legal grounds by which women can terminate a pregnancy on the basis that such provisions violate the right to non-discrimination on grounds of disability.The approach of the CRPD Committee directly contradicted that of other human rights treaty bodies, which have found fetal impairment provisions to be consistent with ensuring safe abortion access and protecting women’s rights to life and health.
The incoherent human rights standards stem from genuine disagreements among human rights experts on this issue. They also signal a lack of alignment between the disability rights movement and the sexual and reproductive health and rights (SRHR) movement in their advocacy before human rights treaty bodies. The recent mobilization of people with disabilities to participate in global advocacy with the CRPD Committee has pushed these long simmering tensions to the fore, as disability advocates now use this new human rights forum to challenge harmful disability-based stereotypes. Though both the disability and SRHR movements share a common foundation in the principles of autonomy and self-determination, conflicts around the issue of abortion and disability have driven a deep wedge between them and divided the broader human rights community about how the issue ought to be approached.
Continuing to avoid this impasse around the fetal impairment ground for abortion is no longer a tenable strategy for either the disability or SRHR movement. The moment has come to admit that current human rights standards are inadequate, and to collaborate in supporting the human rights system to develop a comprehensive legal framework that protects the right to abortion without devaluing the lives of people with disabilities.
The (Il)legitimacy of the Fetal Impairment Ground
Many countries that restrict the right to abortion nevertheless allow women to access abortions under certain conditions, either prior to a certain gestational age or due to specific reasons. The category of reason-based exceptions most commonly includes situations where the life or health of the pregnant woman is at risk, rape, incest, and the detection of a fetal impairment.Abortion on the basis of fetal impairment differs from the other grounds in that it is based on the status of the fetus itself rather than the health condition of the pregnant woman or the circumstances under which pregnancy occurred.
According to the Center for Reproductive Rights, 39 countries have provisions allowing access to abortion on grounds of fetal impairment, and most of these are in contexts that are otherwise highly restrictive.Those who defend the legitimacy of fetal impairment exceptions argue that these provisions provide life-saving access to abortion in many contexts where unsafe abortion is the leading cause of maternal mortality or morbidity.Although some SRHR advocates express ambivalence about the fetal impairment exception, the broader movement has historically accepted it as necessary given the political realities for women in accessing abortion in restrictive contexts. Because the fetal impairment exception is often viewed as one of the more socially acceptable reasons for abortion, it is included in a larger political strategy to expand the legal grounds for abortion one-by-one until broader liberalization is achieved.An example of how this theory has worked in practice can be found in the case of Nepal, which decriminalized abortion in 2002 to allow abortions on demand prior to 12 weeks and thereafter in cases of rape, incest or fetal impairment, or if there is a threat to the woman’s life or physical or mental health.
The legitimacy of the fetal impairment ground is often contested by disability rights advocates, who argue that such provisions reflect a legacy of eugenics entrenched in law and the medical system.They argue that the fetal impairment ground reflects the “medical model” of disability, which views a person’s impairment (or the disabled fetus) as the problem, in contrast to a “social model” of disability, which problematizes the legal, economic and social barriers that demean the lives of people with disabilities and leave them vulnerable to discrimination. When future parents receive a positive diagnostic test of a fetal impairment, but do not receive information to counter their biases, it is no wonder they imagine bleak futures for their disabled children.Although disability rights advocates generally agree that disability stigma underlies the reason why many women choose to abort after a positive diagnosis of fetal impairment, they are less aligned about the role of the law in addressing this problem.
Inconsistent Human Rights Standards
The inconsistencies in the standard setting sphere reflects the differential positions of power between the SRHR and disability movements. The SRHR movement—comparably older, larger, and better resourced than the disability movement—has worked tirelessly to establish sexual and reproductive rights as human rights. Since the early 1990s, the SRHR movement has strived to create a consistent framework that protects the right to abortion as a fundamental aspect of women’s equality and autonomy.Human rights treaty bodies have largely adopted the reasoning supporting the SRHR movement’s incremental approach to the liberalization of abortion.
The global disability movement mobilized around the establishment of the CRPD Committee in 2008 to take advantage of this new human rights mechanism and address long-standing gaps in rights protection for people with disabilities. The issue of the fetal impairment ground for abortion did not come before the CRPD Committee until the initial review of Spain in 2011.In that case, the CRPD Committee urged the government of Spain to amend a law that allowed women to access abortion in cases of fetal impairment later in pregnancy than was permitted for abortions sought on other grounds. The CRPD Committee expressed the view that differential treatment of fetal impairment compared to other legally permissible grounds for abortion perpetuates disability stigma. This contributes to a discriminatory environment against people with disabilities, therefore triggering a violation of Article 5’s right to non-discrimination.Notably, the CRPD Committee has not found that the right to life is implicated by the fetal impairment ground. This is consistent with settled human rights law that rights attach at birth, and with the CRPD drafters’ rejectionof calls to define the right to life from the moment of conception.Nevertheless, the legal reasoning of the CRPD Committee is shaky: how can there be discrimination in the absence of a discriminated subject? While carefully asserting that the aim of banning abortion on this ground is not to restrict women’s sexual and reproductive autonomy, the CRPD Committee offers no guidance to states on how to thread that needle.
The CRPD Committee’s recommendations conflict with that of other treaty bodies, which have affirmed the legality of the fetal impairment ground as a provision that protects women’s rights to life, gender nondiscrimination, and freedom from cruel and inhuman treatment.For example, the Human Rights Committee’s draft General Comment on the Right to Life frames the fetal impairment ground as consistent with the state’s obligation to ensure women’s right to life.In 2014, the Committee that monitors the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW Committee) made a statement that affirmed the importance of the fetal impairment ground along with other common exceptions to criminalization.Other treaty bodies have called on states to preserve the fetal impairment ground as an important safeguard of abortion rights.Yet, these treaty bodies have strategically avoided the concerns raised by the CRPD Committee about the ways that the fetal impairment ground perpetuates disability stigma and negatively impacts the lives of people with disabilities.
A Call for a New Framework
There is no script to follow when resolving conflicts in human rights law. Nevertheless, the first step is to recognize that the current standards are unworkable. The next is to convene people with various perspectives who may disagree but are committed to a process of listening, learning, and strategizing with one another. This process ought to provide for meaningful consultation with members of the disability and SRHR movements, especially global South activists who are leading voices on these issues within social movements yet are often excluded from discussions in the standard setting sphere due to resource constraints.
Those who come to the table must be clear about their non-negotiables. Ultimately, the disability movement is focused on dismantling disability stigma, not on the issue of abortion or the goal of limiting women’s autonomy. Their objective is to change the way disability is viewed—from a curse that condemns a person to a lifetime of suffering towards recognition of disability as another form of human difference. Similarly, the SRHR movement’s primary concern is to change the way abortion is viewed—from a sin justifying criminalization to a normalized event along a woman’s sexual and reproductive life course and a protected right. At their core, both movements aim to challenge negative views of women or people with disabilities and seek to transform the structural conditions that limit their personal autonomy and collective opportunity.
Each movement must also do some internal reflection about how well their strategies have served them. Despite the fact that many in the disability community recognize the shared value of bodily autonomy with the SRHR movement, most Disability Persons Organizations will not publicly support abortion rights out of fear they may alienate some members of the disability community. This has silenced many pro-choice people with disabilities who argue that refusing to take a stand on abortion invisibilizes the fact that many women with disabilities also need abortion services.The CRPD, with its most expansive articulation of sexual and reproductive rights of any human rights treaty to date, offers an opportunity for disability rights advocates to advance a policy agenda that recognizes the sexuality and reproductive needs of women and girls with disabilities.
The disability movement must guard against co-option of its agenda by an anti-abortion opposition that cares much more for establishing fetal personhood and eroding sexual and reproductive rights than protecting the rights of disabled people. Indeed, abortion opponents have instrumentalized disability in order to build the case for fetal personhood: by arguing that the disabled fetus is a subject of discrimination, the fetus becomes a rights-bearer capable of asserting rights claims against the woman whose womb it inhabits.The CRPD’s recommendations to Spain to amend the fetal impairment ground in 2011 may have given momentum to the conservative Popular Party to introduce abortion law reforms aimed at repealing the prior government’s liberalization of abortion.Massive street protests in Spain ultimately prevented the law from passing, thus avoided an inconvenient scenario that human rights law could have served as a justification for abortion restrictions.
The SRHR movement has its own reckoning to do. The moment has come to openly recognize that fetal impairment exceptions make people with disabilities feel devalued and dehumanized. And they are not alone: the exceptions strategy by design creates an “abortion hierarchy” that legitimizes some reasons for abortion (rape, incest, threat to health) and stigmatizes others (poverty, later term, repeat abortions). Acknowledging the ways that this strategy has hurt people with disabilities is also an opportunity to remind the SRHR movement of its core principles and generate a more transformative vision. If women’s autonomy is indeed the underlying principle for abortion rights, the SRHR movement ought to pursue a strategy that eradicates all kinds of stigma and rejects any one reason for abortion as more legitimate than any other.
Yet, the trend towards retrenchment on abortion rights is real, and SRHR advocates know that losing any legal ground for abortion jeopardizes women’s lives. As they work towards broader liberalization, SRHR advocates can embrace a robust health exception—rather than a fetal impairment exception—that would provide a woman broad leeway to determine whether continuing with a pregnancy jeopardizes her physical, emotional, social or mental health. This approach, which focuses on the woman’s decision-making based on her individual and subjective experiences, and not on the condition of the fetus, has been endorsed by disability rights organizations.
At the same time, the SRHR movement must commit to a legal framework that transforms the social and economic structures that devalue the lives of people with disabilities—and therefore constrains the ability of pregnant women to make a meaningful choice when they have indications of a fetal impairment. This will require not only new frameworks, but long-term investments in strategies to combat disability stigma in the medical system, law and policy, and society at large.The SRHR movement’s policy agenda must expand to include supports and services for families raising a child with disabilities, including access to appropriate health care, inclusive education, and economic support.
Facing these challenges will require time, resources, and commitment by human rights advocates and lawmakers.However daunting that may seem, the costs of continuing to avoid this challenge are far higher. Inconsistent standards leave the human rights system vulnerable to claims that it lacks credibility to resolve complex and controversial issues. To the contrary, the human rights system is best positioned to develop a practical framework that balances competing concerns while articulating a vision for a more transformative and inclusive future.
Convention on the Rights of Persons with Disabilities (CRPD) Committee, Concluding Observations on the United Kingdom of Great Britain and Northern Ireland (2017), U.N. Doc. CRPD/C/GBR/CO/1 (2017), ¶¶ 12-13.
As discussed infra in text surrounding note 11, the Committee had previously called on states to eliminate distinctions in law that allowed termination on grounds of fetal impairment to occur later in pregnancy than abortions sought for other reasons.
The definition of fetal impairment varies widely by jurisdiction. Some countries distinguish between “fatal” and “non-fatal impairments” while others list specific disabilities that fall under this exception.
As of 2014, 39countries retained an exception to the criminalization of abortion for the reason of fetal impairment. See Center for Reproductive Rights, The World’s Abortion Laws (2014), http://worldabortionlaws.com.
It is worth noting that evidence does not support the theory that the fetal impairment ground paves the way towards broader abortion liberalization, at least in comparison to other grounds such as rape. E.H. Boyle, M. Kim, W. Longhofer, Abortion Liberalization in World Society, 1960-2009, AJS. 2015 Nov; 121(3): 882–913, at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4764996/
SeeErik Parens & Adrienne Asch, The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations, 18 Mental Retardation & Developmental Disabilities Research Reviews40 (2003).
Center for Reproductive Rights, Reproductive Rights Are Human Rights, https://www.reproductiverights.org/sites/crr.civicactions.net/files/documents/RRareHR_final.pdf.
CRPD Committee’s Concluding Observations on Spain, ¶ 18, U.N. Doc. CRPD/C/ESP/CO/1 (2011); see also Hungary, ¶ 17, U.N. Doc. CRPD/C/HUN/CO/1 (2012); Austria, ¶ 14, U.N. Doc. CRPD/C/AUT/CO/1 (2011).
Carole J. Peterson, Reproductive Justice, Public Policy, and Abortion on the Basis of Fetal Impairment: Lessons from International Human Rights Law and the Potential Impact of the Convention on the Rights of Persons with Disabilities, 28 J.L. & Health 121, 151-54 (2015).
Amanda Mellet v. Ireland, Human Rights Committee (HRC), Communication No. 2324/2013 (2016) (finding that Ireland’s law prohibiting abortion in cases of fatal fetal impairment violated Ms. Mellet’s rights to privacy, equality and non-discrimination on the basis of sex or gender, and freedom from torture or ill-treatment); CEDAW, Communication No. 22/2009, L.C. v. Peru, 50th Sess., Oct. 18, 2009, U.N. Doc. CEDAW/C/50/D/22/2009, § 8.17 (finding that Peru’s failure to allow L.C. to obtain an abortion in a timely manner, which led to her paralysis, violated her rights to equality and nondiscrimination). See accordR. R. v. Poland, App. No. 27617/04, 53 E.H.R.R. 31, 159 (2011).
Statement of the CEDAW Committee on sexual and reproductive health and rights: Beyond 2014 ICPD review, http://www.ohchr.org/Documents/HRBodies/CEDAW/Statements/SRHR26Feb2014.pdf.
Committee on the Rights of the Child, Concluding Observations on Costa Rica, CRC/C/CRI/CO/4 (2011), ¶ 64(c); Committee on Economic, Social and Cultural Rights, Concluding Observations on United Kingdom of Great Britain and Northern Ireland, E/C.12/GBR/CO/5 (2009), ¶ 25.
See Generations Ahead, A Disability Rights Analysis of Genetic Technologies: Report on a National Convening of Disability Rights Leaders, 16(2009), available athttp://www.generations-ahead.org/files-for-download/articles/GenerationsAhead_DisabilityRightsConveningReport.pdf
Model “disability selective” abortion bans are recent favorites of anti-abortion lobby groups in the U.S. See, e.g., Americans United for Life, Prenatal Nondiscrimination Act: Model Legislation & Policy Guide for the 2016 Legislative Year, http://www.aul.org/downloads/2016-Legislative-Guides/Abortion/Prenatal_Nondiscrimination_Act_-_2016_LG.pdf; Nat’l Right to Life Committee, Inc., When They Say… You Say: Defending the Pro-Life Position & Framing the Issue by the Language We Use17 (2014), http://www.nrlc.org/uploads/WhenTheySayPacket.pdf (“you can show them that aborting a child because of possible abnormality is nothing less than blatant and deadly discrimination against people with disabilities”).
See, e.g., submission by the Center for Disability Law and Policy to the Human Rights Committee, Human Rights Committee’s Half Day Discussion in Preparation for a General Comment on Article 6-Right to Life (June 2015), pp 4-5, at http://www.ohchr.org/EN/HRBodies/CCPR/Pages/WCRightToLife.aspx
Some promising models can be replicated and scaled up. For example, the global organization IPAS has developed programmatic guidance for how to address ableism within the medical system. IPAS, Access for Everybody: Disability inclusion in abortion and contraceptive care,
http://www.ipas.org/en/Resources/Ipas%20Publications/Access-for-everyone–disability-inclusion-in-abortion-and-contraceptive-care–overview.aspx. The Center for Reproductive Rights has developed rights-based national policy frameworks and forged partnerships with Disability Persons Organizations to advocate for improved human rights standards. Center for Reproductive Rights (CRR), Shifting the Frame on Disability Rights for the U.S. Reproductive Rights Movement, https://www.reproductiverights.org/document/shifting-the-frame-on-disability-rights-for-the-us-reproductive-rights-movement; CRR and Women Enabled International, Shadow Report to the Human Rights Council on the Second Periodic Review of the United States, https://www.reproductiverights.org/document/shadow-report-to-the-un-human-rights-council-on-second-periodic-review-of-the-usa.