Disability & Reproductive Justice
Clinical genetics providers have an obligation to understand and appreciate the needs of the disability community within reproductive justice frameworks.
Disability justice may be a learned expertise for many.
The Collective commits to upholding a safe space to learn, grow, and share as we prioritize an attitude of humility in what we do not yet know.
We recommend reading the resources created by Women Enabled International, a non-profit, non-governmental organization advancing human rights at the intersection of gender and disability.
Abortion and Disability: Towards an Intersectional Human Rights-Based Approach (Women Enabled International, 2020)
Key take-aways from this resource:
The fight for personal autonomy cuts across both the disability rights and reproductive rights movements; working together to strengthen protections of this right will make both movements stronger (p. 26)
Language matters.
‘Fetal impairment’ (referring to a diagnosis that a fetus is developing in a manner different from expected fetal development for any number of reasons) should replace other terms such as ‘anomaly’ or ‘abnormality’ (p. 3)
Avoid using language which perpetuates disability-related stigma, such as the notion that having a child with a disability is ‘tragic’ or ‘traumatic,’ language that conflates disability with pain and suffering, or language that suggests that children born with disabilities are ‘abnormal’ or ‘defective’ (p. 26)
Recognize that distinguishing between ‘fetal impairment’ and ‘severe or fatal fetal impairment’ is not necessarily a meaningful distinction for the disability rights movement and carries the risk of reinforcing stigma about the ‘quality of life’ of people with disabilities (p. 26)
Avoid language that reinforces the perceived ‘burden’ of parenting a child with a disability; where advocacy relates to the social well-being of the pregnant person, focus instead of the personal circumstances of the pregnant person and on the failure of the State to provide appropriate and locally-available supports for children with disabilities and their families (p. 26)
Recognize the pervasive harms of the medical model of disability. In advocacy related to abortion counseling, reflect the need for:
anti-disability bias training for healthcare providers
information about the lived experiences of people with similar disabilities
information about available supports and services in the local community for children with disabilities and their families, and
referrals upon request to professional organizations and/or DPOs that could provide additional information and resources, including about family or parent support networks (p. 27)