DC's Disabled Advocates: Action!

Nothing about them, without them

DC’s population of 700,000 souls includes some with a variety of disabilities. My son has a developmental disability, and that was my entrée to the community of active self-advocates and others who work hard to maintain and advance the rights of disabled folks living here in DC. We’re a close-knit local community, so when one of our longtime advocates and friends passed away, a large crowd turned out for his memorial service last week. Thomas leaves big shoes to fill (often big red shoes), since he was active on many committees and boards and did a lot to improve life for people in DC.

One of his roles was as co-president of Project ACTION!, DC’s primary self-advocacy organization. In DC we’re proud of the fact that we no longer institutionalize people with disabilities, but some Project ACTION! members have been around long enough to have spent their early lives at the infamous Forest Haven asylum in Laurel, Maryland, one of those almost-forgotten locales that carry searing memories for those with the ill fortune to have lived there. All those now-aging former Forest Haven residents, as well as younger people like my son who now live in the broader DC community, assert “Never again” and fight to achieve deinstitutionalization in other states across the country.

In that context, it was shocking to me recently to read a Washington Post editorial that said deinstitutionalization occurred in part because “states judged it would be cheaper to tolerate more people living on the streets.” That seemed a stupid way to characterize the issue, since deinstitutionalization happened largely due to a groundswell of advocacy by disabled people and their supporters to encourage community-based services instead of continuing to segregate people “out of sight, out of mind.” But those community-based services have been inadequately funded in many places, for sure. Here, advocates have lobbied for, and are proud to have achieved, having DC at the forefront of providing community supports.

Project ACTION! leans into the dictum, “Nothing about us, without us.” And as I think about this pronouncement popularized by the disability community, I’m struck by how well it applies to DC itself. Decisions are constantly being made by national-level politicians who know little to nothing about what life is really like for the 700 thousand of us who live here - and frankly, they care very little about learning from us. Some of these same politicians also seem to favor institutionalization as a way to “beautify” our capital city. Sounds a lot like “out of sight, out of mind” to me.

Personally, I didn’t expect we would be having to revisit proud achievements like DC home rule and deinstitutionalization at this juncture. But that’s where we are, so it’s time to shout it like we mean it: NOTHING ABOUT US, WITHOUT US. And we need our allies to come along with us.

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https://www.facebook.com/dcprojectaction/

https://www.washingtonpost.com/opinions/2025/08/18/involuntary-commitment-homelessness-trump/