The phrase ?nothing about us without us? has guided disability rights advocates for decades. The basic premise of the phrase is that conversations about disability, policy decisions affecting people with disabilities, and technological developments impacting disabled people should include members of the disability community, so that they can bring their lived experiences with disability to the table. ?Nothing about us without us? is particularly relevant to the domain of genetic science and genetic medicine because it informs a range of disability-oriented criticisms aimed at those practices. Critics argue that prenatal genetic testing, used in part to facilitate decisions about bearing children with disabilities, endorses the idea that disability is something to be avoided rather than accommodated. A genetic policy that recommends testing or screening for certain conditions but not others is also judged suspect by some disability advocates because the list is an implicit endorsement of the idea that there are certain traits which make a life not worth living or excessively burdensome to families and society. Parents making decisions about the result of a genetic test, disability advocates also warn, are often given poor information about what it is like living with the disability in question. Attempts to involve people with disabilities in conversations about the ethical, legal, and social implications (ELSI) of genetic technologies, policies and practices are hindered by the fact that, while students with disabilities are enrolling in higher education at increasing rates, those students are also dropping out at higher rates. Long-term mentorship programs are one way to address this retention problem; in particular, programs that embed students with disabilities into a mentorship network with multiple mentors at the near-peer and faculty levels, and both with and without disabilities, have proven effective. These programs foster social integration, self-determination, and a sense of purpose. The goal of this project is to create a program that will equip undergraduate (2/year) and graduate (2/year) students with disabilities with mentoring, research, and curricular resources that facilitate their advancement towards becoming members of the professional community of ELSI scholars. Mentoring resources include a mentor network that incorporates a faculty research mentor, a mentor with a disability, a near-peer mentor, and an administrative mentor who monitors their overall progress. Research resources include the opportunity to participate in one or more ELSI research projects, and then support to present the results of that research at a local research symposium and at national academic conferences. And curricular resources include enrollment in an interdisciplinary ELSI course, a course on the responsible conduct of research, and a grant writing workshop (for graduate students) or a graduate record examination test preparatory course (for undergraduate students).
The purpose of this R25 Diversity Action Plan grant proposal is to create a program that will equip students with disabilities with mentoring, research, and curricular resources that facilitate their advancement towards becoming members of the ELSI community of scholars. Disability rights advocates argue conversations about disability, policy decisions affecting people with disabilities, and technological developments impacting disabled lives should include members of the disability community; however, this demand??nothing about us without us??is hindered by the fact that individuals with disabilities are underrepresented in academia. The proposed program is designed to embrace this demand by creating a future generation of ELSI scholars who have experience living with disability.
