The three-day Global Dialogue on Abortion, Prenatal Testing and Disability convened activists, scholars, donors and other key representatives of the disability rights, women’s rights, and sexual and reproductive health and rights (SRHR) movements to address long-standing tensions around prenatal testing and abortion that have prevented these social movements from collaborating with one another and building their collective power.
The long-term goal of the convening is to lay the foundation for a new rights-based framework that respects reproductive freedom for all without devaluing the lives of persons with disabilities.
During the Global Dialogue, participants interrogated five key sites where the issues of prenatal genetic testing and abortion are debated and contested: the market, law and policy, medicine, culture, and social movements.
Through an in-depth exploration of each domain, participants gained exposure to a range of disciplinary approaches and new perspectives on the issue, with the goal of challenging their own and others’ perspectives.
The Market
The rapid evolution of genetic technologies presents social movements with difficult questions about the reproductive choices and practices that are suddenly not only possible but widely available. The dialogue explored questions such as:
-Do genetic technologies expand access to information in ways that benefit all women, or do they reinforce harmful social stereotypes that restrict women’s autonomy and rights?
-Precisely which women are benefitting from these technologies?
-What principles ought to guide discourse and policy around assisted reproductive technologies in order to avoid market-driven imperatives for “designer children,” e.g. those lacking in traits considered socially undesirable including disability, dark skin, or intersex genitalia?
-What strategic interventions will help guard against the excesses of the market while still ensuring women receive the information and services they demand?
Law and Policy
Following the recognition of SRHR has women’s human rights at the UN global conferences in the early 1990s, feminists have invested deeply in law reform as a key strategy to advance women’s rights and SRHR in particular. In India, for example, social movements seeking to address sex ratio imbalances focused their energy on regulation of genetic technology used in sex selection. More than 25 years later, the law that Indian feminists championed is being used to surveil women’s decision-making and limit abortion rights, and it remains both legal and socially acceptable to use genetic technologies for the purpose of disability selection.
This example raises questions about the limits of a law reform strategy designed to address complex social problems, and about the consequences of failing to work collaboratively with other social movements in designing legal strategies, including:
-What are the legal frameworks and strategies around abortion and prenatal testing that feminists may need to reexamine — or new ones that ought to be developed — in light of the emerging rights claims by people with disabilities?
-How are the current debates around international human rights standards reflective of these divides, and how might social movements align to push them in a more constructive direction?
Medicine
The “medical model” views disability as an illness or condition in need of fixing through medical interventions. The model is based on the idea that disability is a deviation from a ‘normal’ body and therefore ought to be treated and cured. In the largely unregulated field of prenatal genetic counseling, many pregnant women receive information about potential fetal impairments from a medicalized perspective. Abortion is the presumed “solution” to the “problem” of disability. Rarely is information contextualized to include evidence-based research about living with a particular impairment, contact information for other families in similar circumstances, or social and economic supports available for parents of children with disabilities. Moreover, the use of technology to predict “abnormalities” in the fetus has led to a medicalization of pregnancy itself, with measures such as the surveillance of pregnant women increasingly tolerated in order to produce the desired outcome a “healthy” fetus.
The dialogue explored how social movements can challenge medicalization of both pregnancy and disability in order to maximize women’s autonomy throughout pregnancy while ensuring their decisions are grounded in truth, not fear or stigma.
Culture
The widespread availability of genetic technology has changed the social experience of pregnancy for many women. The circulation of ultrasound images on social media, for example, has turned pregnancy from a private and intimate experience with close family and friends into a matter of public interest, with the health and development of the fetus a concern that even strangers feel entitled to comment upon.
Genetic technology is shifting the perception of the fetus as an entity interconnected with the pregnant woman to a separate being with interests that need protecting — sometimes from the pregnant woman herself. This poses new questions, including:
-How does the “disabled fetus” both support and complicate this narrative, considering that cultural representations of disability range from disgust and fear to reverence for the divine?
-Pregnant women wrestle with multiple and often conflicting messages about disability that influence their decision-making when they receive news of a potential fetal impairment.
-What are the feminist responses to these cultural narratives that can challenge negative stereotypes around disability while respecting women’s subjective experiences of pregnancy?
Social Movements
The topic of prenatal testing and abortion is typically framed as a “conflict of rights” issue that sets up a false divide between the disability movement and the SRHR/women’s rights movements. This narrative obscures the foundational principle of personal autonomy shared by both movements, as well as the commitment to the indivisibility of rights that guides all human rights movements.
Indeed, it is the Convention on the Rights of Persons with Disabilities that offers the most expansive articulation of SRHR of any human rights treaty to date. The increased presence of the disability community in global advocacy circles since the CRPD came into force has paved the way for greater collaboration between the two movements.
Yet, significant barriers remain, starting with the marginalization of women with disabilities in both the mainstream disability movement and the SRHR/women’s rights movement. Neither movement has been motivated to challenge their positions for fear of alienating their core constituencies.
The Global Dialogue was a space discuss:
-What work does each movement need to do internally to overcome a historical legacy of mistrust, and begin to build the relationships upon which future collaboration will depend?
-How can feminists with disabilities be supported to play a leading role in this effort? -What are the structural barriers, such as resource and access constraints, that must be dealt with in order for genuine cross-movement work to take place?
Methodology
Participants at the convening included a cross-section of people with different expertise from the women’s rights, SRHR and disability rights movements. The focus was to invite people with deep substantive expertise, although every effort will be made to have diverse regional participation and diversity across disabilities. Participants included SRHR and disability advocates, feminist activists with disabilities, medical ethicists, reproductive health professionals, and technical experts in law, policy and human rights.
In preparing the agenda, CREA consulted with our extensive network of partners in the regions where we work and at the global level to identify relevant scholarship and resources and provide feedback on the agenda.