The Autistic Self Advocacy Network’s Symposium on Ethical, Legal, and Social Implications of Autism Research, funded by the Administration on Developmental Disabilities, was a huge success. The symposium video will be made available in the coming weeks with captioning. We’d like to thank our co-sponsors, the Harvard Law Project on Disability, the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics and the UNESCO Bioethics Chair, American Unit for helping to make this event possible.
Our conversation was broad and wide ranging. Perhaps the most interesting characteristic of the Symposium was the people that came to the table. Our participants – split evenly between self-advocates and researchers – identified a wide number of ways to help advance the inclusion of Autistic people ourselves in the research process. From Community Based Participatory Research processes to greater inclusion of Autistic adults on IRBs and Grant Review panels, a number of actionable next steps emerged from our discussion. ASAN will be following up on this through a series of targeted policy briefs and collaboration with our federal partners to make those ideas reality.
One of the key issues to emerge out of our conversation in Cambridge was the inclusion of Autistic people and other people with disabilities as grant reviewers on federally funded grants. In response to our symposium, several key federal funders have offered to work with ASAN to identify Autistic adults and other people with disabilities interested in serving on forthcoming federal grant review panels.
As a result, we’re issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. Please include any areas of expertise within your resume. Resumes can be sent to email@example.com with the Subject line GRANT REVIEW.
Generally, individuals who serve on grant review panels participate in the review of grants pro bono, although sometimes a federal agency may provide a small honorarium (usually $500 or lower) to reimburse participants’ time. Reviewer opportunities are not for employment positions, so they involve neither full-time nor part-time positions. Most grant reviews adopt some combination of online communication, phone communication, and in-person discussion for the grant review process. The grant review process usually takes place over a time frame that may vary from several hours to multiple weeks or even months depending on the size of the grant and the agency’s logistics.