I met Constance Laymon for the first time in the halls of the New York State Capitol in early 2002. She was the founder and CEO of a new company, Consumer Directed Choices. (FULL DISCLOSURE – I am now an employee at Consumer Directed Choices but I am not getting paid to write this or promote my company on my personal blog.) Constance was at the Capitol that day advocating for increased access to Consumer Directed Personal Assistance (CDPA) as an alternative to traditional homecare. I was having my photo taken with some elected officials in my Ms. Wheelchair NY 2001 sash. I was not using CDPA at the time, nor was I an employee of Consumer Directed Choices. I had heard her name, and knew about this alternative model of homecare. We were polite to each other, sizing each other up as fellow advocates and deciding what impressions we would take away. She later told me she thought my sash was a bit much. I confessed I was surprised to hear her drop so many F-bombs in front of the Assemblyman we were both waiting to see.
Over the next few years, Constance’s company began to take off, growing in budget and Consumer base. I continued to advocate with Ms. Wheelchair New York titleholders. We would see each other at disability conferences, lobby days and community events. Gradually, as we learned more about our shared experiences as wheelchair users and advocates, we became good friends.
Constance sustained a spinal cord injury in the 1980’s at the age of 17. Just a few weeks before her high school graduation, she fell over 100 feet from a cliff while running through the woods with friends. Constance went through rehabilitation, learning how to perform everyday tasks in new ways. She moved to Albany to have better access to reliable homecare and transportation. She believed education would be the key to empowerment and enrolled at a local college. After college, she began working at a local Independent Living Center, where she learned about CDPA – a new model for homecare. CDPA puts the decision making back in the hands of the Consumer, the senior or person with a disability, receiving the care. Constance was always a bit of a rebel so this model appealed to her. As a “patient” she was often viewed as “difficult to serve” or noncompliant by the traditional medical model.
Constance created her company to fill a need in the community. She knew first-hand how self-direction could change lives and worked tirelessly to build the infrastructure necessary to make self-direction a reality for others. The company grew as the community learned how self-direction increased independence and empowerment. But even as she found business success, Constance always held the Consumers first in all of her actions. She was selfless in her activities and famously left an important policy meeting with the NYS Commissioner of Health to take a call on her cell phone from a Consumer in crisis.
I began using CDPA in 2008. Constance was a valuable resource as I navigated my role of employer to my care team. A night owl, we would have late night conversations about disability issues, dating, managing Personal Assistants, and living as single, independent “chicks in chairs.” In 2012, she called me to tell me of several job openings at Consumer Directed Choices. Constance knew I was unhappy and searching for another employment opportunity. I told her I didn’t want any special consideration but in all honesty, I was thrilled at the chance to work with another strong advocate. I accepted the job of Communications and Outreach Specialist and eagerly took on my new responsibilities for an organization which captured my passion.
On September 21, 2012, just a month after I joined Constance’s team, we received the terrible phone call telling us of her unexpected death. My colleagues and I sat in stunned silence in the conference room. It took weeks for the reality to set in – she wasn’t coming back. I’d never see her wheeling down the hall. I’d never hear her laugh as I put her on speaker phone while transferring into bed late at night – telling her to hang on while she said, “Come on – how long does it take you to get both ass cheeks on the bed?!” There was still so much I wanted to learn from her! I raged inside each time I went by her empty office – the room a stark reminder of what was gone.
Constance never apologized for who she was. She swore frequently, worked long hours, loved candy and Mountain Dew, and spoke the truth to everyone even when she knew it wasn’t what they wanted to hear. She was a devoted advocate and a source of strength for all of us who knew her.
Tonight Consumer Directed Choices will hold the annual Constance Laymon Personal Assistance Recognition Award Ceremony. This ceremony, now named in her honor, was started by Constance as a way to reward the Personal Assistants who provide such crucial work to those of us who rely on CDPA for our independence. I will join my colleagues, our award recipients and their employing Consumers in remembering a tireless advocate and a dear friend. I am grateful to Constance for offering me the opportunity to use my skills towards a mission which ignites me and gives me purpose. She rekindled my advocacy goals. I hope she is proud of us as we work to continue her legacy of self-direction for all.