Several years ago, a good colleague of mine, Jim Charlton, wrote a classic book titled Nothing About Us Without Us. At the time of publication, the disability rights movement was riding the crest of civil rights legislation with its own passage of the Americans with Disabilities Act, better known as the ADA.

Charlton’s lived experience with disability and serving as a key member of the disability rights movement laid the foundation for his work in promoting inclusion of people with disabilities into all segments of our society. Charlton ends his classic book with this statement: “The demand Nothing About Us Without Us must mean something more than a petition for community input, it must be a demand for self-determination.”

As CEDHARS begins its journey into making the sciences more inclusive, a key factor in doing so is going beyond lip service into establishing true representation of disability across the spectrum of research. Assembling an advisory committee composed of people with disabilities is not quite what we mean by engagement (the E in CEDHARS). Our interpretation of engagement aligns with Charlton’s mantra, ‘nothing about us without us.’

Simply put, if CEDHARS is to respect and value the voice of the disability community, that voice must be heard before, during and after a grant or project is submitted, executed and completed. My hope for CEDHARS is that we begin to recruit researchers and students with disability to UAB because of our unique footprint in inclusion science; that people with disabilities will be involved at the beginning, middle, and end of the decision-making processes; and that we do a better job of explaining to members of the disability community the importance of their participation in all areas of research. This will ensure that the new generation of precision science will be translatable to various subgroups of the disability community.