Dread and Gratitude

The Great Unraveling of US Disability Research begins… On 30 June 2025, I received one of the last newsletters from the IDD Health Equity program. Funding is ending. The website may disappear. Researchers, research and expertise will be lost.

I’ve been following IDD Health Equity since the Summer of 2023… I have no idea how or why I found them, but I learned from them, loved their passion and appreciated their work.

I will miss them.

There are dozens? hundreds? Probably not thousands… though who knows? of these programs and research projects across they US quietly doing their work.

Many may not have websites or newsletters. Just academic work that will hard stop when funding dies. Files will sit on computers and servers until they are totally forgotten, deleted, or purged.

We may never know what we don’t know or appreciate what we have lost.

First, we should thank all of the people who have devoted years, if not their professional lives to serving the greater disability community and advancing our knowledge of all aspects of these fields.

I hope that one day, we’ll bring you back and that you’ll forgive us.

We need to build an Ark. 

Find all of the historic data and work in progress. Bring it together and make it available for those who can carry on now and resume work once this madness ends.

Build a directory of the researchers and students and others so we can call them back. 

Do our best to ensure that nothing and no one is forgotten.

This storm will end. Or, if not, others will take up the work on faraway shores. 

Build a living community, not a memorial, so that we won’t ever again permit this work to be lost to academic obscurity.

The waters are rising.

The time to build is now.