When I first joined ADAPT in 1996, I had no idea what the term “attendant care” meant, even though I had received it all my life from my support network. First, when I was growing up, I received this care from my family. Later, I received it from my wonderful husband, David, without knowing that there was a term for what he did. I didn’t know that there were services developed for those people in our community who weren’t graced with the solid support I had from my loved ones. Unfortunately, when I joined ADAPT, I thought I was socially conscious, but actually I had a very narrow worldview and carried some bias against other disabled people. If I had let my ignorance and my fear win, not only would I never become a member of ADAPT, but I probably would never have learned about attendant care. My life would have been drastically different, and much less in my control.
My first ADAPT action was in 1996 in Houston, when I was working at the Memphis Center for Independent Living (CIL). I knew nothing about ADAPT at that time, and when I saw members of Georgia ADAPT connecting to their flight to Houston, my fear and narrow social consciousness took over. I recalled a conversation with my mama, right before I had accepted the job with the Memphis CIL, when I had said that I didn’t want to work with “those” people. Her response to me was, “I raised you better than that. Those are your people.” Unfortunately, that message had not yet stuck.
That night, when I reached Houston, I was crying on the phone to David about how once I got out of there, I was never coming back. During that call, I heard a knock at the door. When I asked who was there, the person on the other side of the door announced himself as Dorian, “my attendant.”
“Yeah,” Dorian replied.
“Okay, what does that mean?” He responded that he was here to help with whatever I needed.
I joked to him, “so, do you have any change for a Coke?”
His response was, “I’m here to help you so that you can go out and get your change.”
That’s when I realized: here was a guy who could’ve been out doing something else in life who was not only here to help me, but was my first exposure to something I knew nothing about but received all my life from my friends and family. This was attendant care. These were gifts given to me by my family my entire life, and by David, unconditionally. While I had been crying that I had turned my back on my own people, they had made sure that I was taken care of with the services that I needed, even though I hadn’t told them that I needed them. By the end of that trip, not only did my attitude change drastically, but I knew that I would die an ADAPT member.
Through the years, I was an active member of ADAPT, a group I instantly grew to love. David and I moved to Colorado to work for the Atlantis Community, the home of ADAPT, and we eventually branched off to do our own work in transitioning people out of nursing homes. And through the years, the gift of attendant care kept on giving. Although David was taking care of me, I wanted to make sure that someday he was taken care of, even though I couldn’t provide the same services to him that he had provided to me. David and I never married so that I could plan to receive these benefits someday, we were careful not to claim taxes, David didn’t make money on my services, and I applied for Medicaid. Sadly, I didn’t know how quickly we would need these services.
In 2015, David became very sick and spent 35 days in the hospital. Upon his release, our options were hospice or receiving attendant services in our home. Although I was going through denial of the situation, David knew what was coming with his health. He didn’t want hospice, with the idea of death constantly looming over. For the final 24 days of his life, David lived comfortably in our beautiful home and we were able to live out our lives together. On the 22nd day, he received Medicaid, which covered the care that allowed him to stay home. He died on March 29th.
David’s attendant was trying to get me to the hospital where he was transported by ambulance when I realized that he passed away. While the attendant was opening the door to get me in the van to transport me from the first hospital we tried to the second, a feeling came over me. I knew David had passed and I peed on myself in the despair of that moment, knowing that the love of my life was gone. The very first need I had when David died was help cleaning up from an attendant.
My life would have been drastically different if I didn’t have access to attendant care. The end of David’s life was enriched by the option to stay in our home instead of hospice, and this decision was enabled by access to attendant care. If I hadn’t applied for Medicaid and wasn’t receiving attendant care, upon David’s illness, I would have had to move into a nursing home or move back to family who would take care of me. With the option of hiring attendants, we had the freedom to choose the paths of our lives, independent of the pressures to move into institutions or live with family to ensure that we received the basic services we needed to live.
It’s important to recognize that attendant care’s existence allows us to live our lives the way we chose, instead of centering our existence around our care needs. Having freedom isn’t a luxury. It’s a guaranteed right. Attendant care allows us to have access to the fundamental freedoms that able-bodied people often take for granted: the ability to live where you want and how you want. In 1996, ADAPT gave me the gift that keeps on giving: the awareness of attendant care and a community that fights for our right to access it. Just like David, I will fight for this right with ADAPT until the day I die.
Free our people!