Advocacy Statement To a Member of the NIH Working Group on Disability

Initial Note



Writing today wanting to connect with committee members from the NIH Working Group of Disability regarding follow-up on last December's committee report outlining suggestions for inclusion of people with disabilities in the scientific workforce and in the research enterprise. My organization is well-connected with numerous disability peer communities and looking to build strategic partnerships for following through on report recommendations. Especially in regards to ongoing lack of effective lived experience inclusion in NIH-funded research efforts. 

Initial Reply

I am not completely sure what you have in mind. The NIH Subgroup on Individuals with Disabilities has actually been discontinued now that our report has formally been submitted and approved. Individual members, however, are working hard to continue getting the word out.

My team administers a national survey documenting access to health care and health outcomes among people with disabilities, based on data collected directly from people with disabilities. We would welcome any support in reaching out to possible participants.

In-Depth Answer

Another way to frame the question here is - "how to encourage or hold research institutions accountable for following through on report recommendations?". Am interested in the advocacy and direct action component, which I know can be a tricky subject. Three examples of current work my organization is engaged with include"

•  Assisting with helping a team of behavior analysts at University of Washington launch the Coalition for the Reform of Applied Behavior Analysis, a group whose goals include fundraising for development of inclusivity awareness, methods for how to provide disability-affirming ABA services, and support for direct advocacy initiatives.

•  An example of where an academic institution is failing to follow report recommendations is Boston University. There have been several attempts to ask their leadership team to engage with community members and leadership has repeatedly ignored or only given performative or tokenized support. An example of an ignored request is the following letter: Letter to Boston University Asking for Co-Empowered Peer Inclusion in Public Health Research and Support Efforts

•  Attempts to engage NIH leadership in dialogue about compliance enforcement regarding the grant awardee scientific rigor policy requirement, defined as "the strict application of the scientific method to ensure unbiased and well-controlled experimental design, methodology, analysis, interpretation and reporting of results." There seems to be no effective method of enforcing that policy or holding violations accountable. 

The NIH Subgroup report is a fantastic resource. What comes next? Much of the work above is unfunded and lacks allyship and direct support from the professional research community (including academia, government, and philanthropic sectors). Reports are useful but progress is not truly made until recommendations are acted upon in a concrete and tangible manner. Am thus wondering what the report authors and their broader networks can do to assist with the next stage of the process - ensuring that the research community acts upon the provided recommendations.

If I could perhaps be somewhat blunt, I often worry that the sole main outcome of the survey efforts your team conducts will be to document (or even at times partly misrepresent) the ongoing abuse and lack of support experienced within the many disabled and marginalized communities I am connected with. I say misrepresent because I know with certainty that certain aspects of the disability experience are, broadly speaking, not being captured in current data collection efforts. Though, that's a generalized statement about the field in general and not a specific critique of your specific survey.

These ongoing abuses and lack of support are often justified and enabled by ongoing ableist and otherwise problematic research efforts. Society always calls change and progress "hard and slow" and I find that to be a self-fulfilling prophecy and not an immutable fact. We change by choosing to change, and I'm wondering what support can be had to help make the research community choose to change. 

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