How Joe Got Started
How Joe Got Started
It was the time of hippies, bell bottoms, and communes as well as various amounts of mind altering substances. It was the time my parents, family, and friends refer to me as the one who ran away to join a commune. Frankly, I wasn’t joining anything. I was invited to live in Amherst by my friend Chris Palames. Chris had started the Stavros Center for Independent Living. Of course I didn’t know what an Independent Living Center was but I figured it was an adventure. I met Chris during my rehabilitation stay in the Mass General Hospital Rehab Center. He had left the year before me and during that time he visited the Berkeley Center for Independent Living in California. Chris had been introduced to the idea of independent living while staying there. He had spent some time with Ed Roberts (The father of independent living).
Chris named the organization after his deceased brother Stavros who had died in a motorcycle accident the previous year and his mother fronted the funding to purchase a farmhouse in Amherst. That’s where Stavros was born. That’s where I became a “Peer Advocate Counselor”. To this day I like to joke with Chris that he still owes me a salary for that time. He claims I was “interning”. I still don’t know what I was interning for. Chris is still a dear friend and we still visit one another. He changed my life. I had a girlfriend at the time that was willing to take a leap of faith and off we flew to the greater unknown parts of Western Mass.
Don’t get me wrong it wasn’t an easy decision and I find times even 40+ years regretting some of the effects. Leaving family and friends was difficult and dropping out of Boston University was probably the dumbest thing I’ve done up to that point, except for the fact I broke my neck resulting in quadriplegia.
During Chris’s time in California he had been exposed to the idea people with disabilities had the right to make their own decisions. And up to that point (I was only 16) I was used to being told what to do by family, nurses, teachers, and the occasional policeman. I never liked being told what to do.
At the time I was living at home and at the Boston Center for Independent Living (the second oldest Independent Living Center in the country. Stavros was the third) it didn’t mean much to me and I still scratch my head realizing being the third independent living center wasn’t the important thing. As a Peer Advocate Counselor, I was able to visit others (mostly quadriplegics) living in the area exchanging stories and advice. The PCA program was still in its embryonic stage and sometimes I wouldn’t get paid for PCAs for months at a time. I survived through the kindness of my girlfriend. At times the Stavros group would have to drive to Boston to demand our PCA checks.
It was a different world. I think Stavros started with a $6000 grant from the Massachusetts Rehabilitation Commission to launch this new idea of people with disabilities taking control of their own lives. Chris was the Executive Director; Bill was a Director of Services; Noreen, Chris’s girlfriend was his assistant and most importantly Ted Martineau was our moral compass. He was also a quadriplegic who had been injured at a young age. Stavros also had a CFO, Pat, who was the brains of the outfit. Since we were the only independent living center outside of Boston covering rural areas, we also needed transportation to provide services to other people with disabilities who were stuck in their homes. Stavros hired a dropout English teacher from an expensive New York prep school. Fortunately he owned a Volkswagen station wagon and he would physically lift me into the front seat and put my main wheelchair in the trunk as we traveled all around Western Mass visiting people. Our staff may have been less than you can count on your hands. It was quite a crew. Today Stavros has 150 employees!
At the time I was the only Peer Advocate Counselor but as an advocate the disabled advocates didn’t have many federal or state laws to use as leverage to convince private vendors or local governments to make their programs and facilities accessible to people with disabilities. We had to depend on the “kindness of strangers” and their willingness of the store owners and local legislators to do favors until section 504 of the 1973 Rehabilitation Act was passed. After many demonstrations, sit-ins, and media coverage the feds finally passed the Section 504 of the Rehab Act which mandated any entity receiving federal money had to make their facilities accessible and provide accommodations for employees. This law drew from the 1964 Civil Rights Act Law which stated it was unlawful to discriminate against people regardless of race, religion, color, or national origin.
The Rehab Act opened the door for the Americans with Disabilities Act (ADA) that was passed July 26, 1990 by that time I had become well-versed with that particular law. That was the jumping off point for advocates to finally have legal standing and leverage to advocate with the private and public sector.
By that time Stavros had staff members driving down for the signing of the first major civil rights law protecting people with disabilities (the ADA). Did I go? No. I do want to go to DC in July (too hot for me and I don’t like crowds). That was a mere 31 years ago. Today we have a generation of people with disabilities who call themselves “The ADA Generation”.
That’s my story and I’m sticking to it. And I want my “intern money” ☺
Editor and Informational Advocate
Stavros Center for Independent Living