When I got to Washington DC I was not sure what was going to happen. Just a year before my first ADAPT action in May of 2003; I was living in a nursing home in Boulder Colorado. For the seven years before that I was a Medicaid Skilled Nursing Facility bed.
I spoke out and I spoke up in the nursing home, but it was very different than what I was experiencing with ADAPT. I questioned authority in the nursing home, for myself and for others. What I often heard in response was that the decisions they made were the best for patients and for me. They said they cared about me.
I was not content, but after several years I just didn’t know what else there was for me. I got perks because of my dissent; I often got what I wanted because the Nursing Home staff did not want to hear me complain. I look back and see that giving-in and giving me perks sometimes was their way of manipulating me, the nursing home wanted to shut me up.
One of the perks I got was to have a computer. Ultimately, it was the information on the Internet that got me out of the nursing home. I mean, there is no lock on the front door but I didn’t know I could leave. The attitude that all the nursing home staff related to everyone, regardless of age, was that “you can’t live on your own.” After a while, you just accept that as fact. They say they care about you; and you accept that as fact too.
I was not sure what was going to happen when I got to the capitol for my first ADAPT Action. I was nervous. I mostly did not want to screw-up, so I went to bed early that night.
I use a wheelchair. When I went to the first ADAPT big meeting there were literally hundreds of other wheelchair users in the same room and hundreds of other people with a variety of disabilities. I talked and mingled. I met some people, some new to ADAPT, some old-timers. I got fired-up by MiCASSA and ADAPT’s dedication to get the bill passed. I knew from experience that the campaign for MiCASSA was essential.
No one said they cared about me. As a matter of fact, people didn’t seem to care about me. They didn’t ask if I was hot or cold, if I had enough to eat or got enough sleep. ADAPT gave me way too much information, but they didn’t tell me where we were going. They assigned me to one of several color groups, so I got into line and followed the person in front of me. The color leaders reminded me to keep it tight (stay close to the person in front), stay to the right and single file.
You might think that in that mass of people I would feel unimportant and overlooked. On the contrary, finally I was with people that did care about me. They didn’t say it, like the staff at the nursing home, but it was more evident and real than ever. ADAPT cared about what I cared about. The people around me knew what I knew about life in an institution and they were speaking out.
ADAPT was marching to the White House that day to demand “NO MORE STOLEN LIVES.” They were speaking up for over a million Americans in institutions and nursing homes. They were speaking out for people, like they had spoken out for me before I had even heard of ADAPT.
We were demanding “No more Stolen Lives!” I was determined to speak up until all of us have real choices.
A hundred activists got arrested at the White House that day. The next day I broke the law blocking Constitution Avenue for seven hours in front of the Department of Justice. We made a powerful statement demanding that USDOJ respect and enforce our rights.
On Tuesday we made our point to the American Nursing Association, asking them to support MiCASSA. The final day I visited Congress to get support from lawmakers.
I was hooked on ADAPT.