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Celebrating the Life of Sally Johnston

Last night, Sally Johnston, a true leader in our world, passed away. Sally was the voice of conscience in our movement. She dedicated her life to improving the lives of others. Many of you know Sally and the critical role she played in our life. You are the lucky ones, because I can truly say that every person who came in reach of Sally had their life improved – as well as tens of thousands who never knew she existed.

Early career

Sally started her career in advocacy in 1975, at the age of 30. By her own admission, she didn’t know what advocacy was, she was just stubborn and had opinions. In her words, she didn’t have a college education because they told her “You’re too disabled to go to college. You’re too disabled, you’ll never get a job.” And Sally being Sally, well, she said “Really? Screw them. I’m gonna go get a job.”

With that, she began volunteering at a brand new community center. Again, as she tells it, she might have been a volunteer, but she was opinionated – and not shy. At every staff meeting, Sally spoke up and said “I have an idea.” And one of those ideas resulted in two folks with disabilities coming into the center and asking to use some space for a meeting.

This was Sally’s introduction to the disability rights movement. And anyone that knows Sally knows that she doesn’t do anything halfway. So she went out, bought a book by famed community organizer and activist Saul Alinsky, and began organizing. She also began educating. Working with members of the community to talk to and build relationships with county elected officials, she eventually succeeded in getting public office buildings made accessible throughout Syracuse and Onondaga County – over 15 years before the ADA!

Then she turned her sights on transportation. For 14 years, Sally worked with activists across Syracuse to make the buses accessible. For 14 years she would lie down in front of buses. She would chain herself to buses. She would literally risk her life (you’ve seen a bus, right?) to fight for accessibility. But it didn’t stop there. She also did her research. She used her connections from years of getting public buildings made accessible, and finally – she won. Making buses in Syracuse accessible prior to the ADA.

Sally and CDPA

That was when Sally got involved in long-term care. She would continually get calls from people to get out of nursing homes. But there were no services, or they were insufficient. That’s when a demonstration program passed for the creation of a small new program that would run in New York City and one Upstate county. Sally made sure, through her connections with County officials, that Onondaga was that county.

That program was the precursor to CDPA. The demonstration would go on and pave the way for the statewide implementation of CDPA a few years later – after Sally’s work created strong, bipartisan interest.

Then she went to all the advocates who joined her fighting for CDPA and convinced them that the victory would be for nothing if there was not a statewide organization fighting for it in Albany. She brought together all the advocates who fought for the program and the Consumer Directed Personal Assistance Association of NYS was born.

Sally was the first Board President of CDPAANYS and played the critical role in getting the organization off the ground, creating much needed relationships within DOH to advocate for it and make sure that reluctant counties implemented it – and properly. Properly of course didn’t mean the way the state wanted – it meant the way SALLY wanted it!!

Sally continued with CDPAANYS throughout her career, and into retirement. She came to Albany repeatedly, even as her health was beginning to struggle. She was here throughout the effort to #SaveCDPA. She was here for the fight to #ProtectMedicaid. She was featured in a commercial about #FairPay4HomeCare (and that was just the start of her efforts there!!).


Sally never stopped fighting, and her legacy lives on across the state. In 2011, CDPAANYS honored Sally with our Advocacy Award, which that year was also permanently renamed The Sally Johnston Award for Advocacy. This award recognizes the lifetime of work Sally has done, going each year to a person or group whose advocacy efforts have moved CDPA forward in a dramatic way.

In 2022, Sally was recognized further for her work when she was inducted into the Disability Rights Hall of Fame, created and run by the New York State Independent Living Council.

And she will be with us in every fight, because her legacy lives on in every person who makes a phone call, or sends an email, or meets with their Legislators, or…gets arrested.

Sally will be will us in our fight, because she would not want us to stop fighting, even for a second. I consider myself extremely fortunate to have gotten to know her, to have fought beside her, and to have called her not merely a colleague, but a friend.

Sally would call me and get so mad about different things. But that anger was never cynical. It was never defeatist. That anger was productive. It was always “What are we gonna do about this?” Sally would never accept defeat, and she always worked to build.

In her memory, I hope we can all continue to work to build from Sally’s legacy. Her fight moved us all forward, and left a lasting legacy in laying the foundation for the movement CDPAANYS is proud to lead. I hope you will join in continuing her fight as she finally takes her moment to Rest in Power.

Thank you Sally.

-By Bryan O’Malley