The five years I spent helping to launch this new cross-disability advocacy organization were amazing and intense -- I learned so much (sometimes as the result of serious mistakes I made); met incredible people who continue to inspire and humble me; benefited from the guidance of several very wise, accomplished women; and truly contributed to improving the quality of life for people with all types of disabilities.
As had already happened so many times in my life, I found myself in the right place at the right time and benefited greatly from it. My tenure as the executive director of this organization coincided with the heyday of Dr. Jack. I was chosen to represent my organization and the disability community on the Michigan Commission on Death and Dying, which was created by the state legislature for the purpose of making policy recommendations about the issue of physician-assisted suicide, and co-authored the Commission‘s subcommittee report on procedural safeguards. (The Procedural Safeguards proposal for decriminalizing assisted suicide received the majority of votes cast, although not a majority vote from the 22 members of the Commission.) Several years later, I was one of 300 people with disabilities from across the country selected to participate in the National Council on Disabilities Summit on Disability Policy to help develop recommendations on how to change national health care policies to better meet the needs of individuals with disabilities. My most enduring achievement came as one of the leaders of the coalition that lobbied for the introduction and passage of Michigan’s Wheelchair Lemon Law.
Interestingly enough, the experience during that time that had the greatest influence on my future didn’t take place on the job. In early 1995, I developed a severe case of pneumonia and was off work for more than a month. While out sick, I was inspired to log on for the first time to the still relatively new World Wide Web after reading article in “Mother Jones” magazine about the best sites online. After my first hour of surfing, I was hooked, and I spent the remainder of my recovery time teaching myself HTML and building my first web site (a one page monstrosity loaded with links, graphics, and an appalling amount of annoying, blinking text). I had no idea at the time just how beneficial this early exposure to this new online world would be.
After five years at the head of this small advocacy organization, the ever present stress from raising enough money to keep the staff paid and the programs running was taking its toll on my mental and physical health. I missed being directly being involved in program work -- I wanted to get back to creating and implementing advocacy strategies and working on the front lines to get people to take action on the issues that directly affect their lives. So when a prominent national consumer health care advocacy organization offered me a job working with state groups to improve their advocacy skills and strategies, I seized the opportunity and moved to Washington DC.