Staying Home

Some people talk about how much they love the night life or going out and about exploring their world.  I have friends who wait for weeks in eager anticipation for the latest movie premiere or to try a new restaurant while they “hang with their peeps.”  I hugely admire people who can be social with strangers or who often go to new places for the sake of the experience.

I like staying home.

I love all those social things as much as anybody else and I am not talking about always staying home with a good book instead of being among people.  What I mean is that I like staying home as an alternative to living in a nursing home.

As an adult with a significant disability who is dependent on both Medicare and Medicaid, I could easily qualify to live out the remainder of my days in a nursing home.  If it is anything like my being in the hospital when I am ill, when I am there I would be dependent on someone else to determine when I could get in and out of bed, when I could eat and when I could take a shower.  Because I am someone who doesn’t have a whole lot of power in my life to begin with, at my age, that scenario sounds as miserable as Narnia before Aslan showed up.

I am fortunate that Kansas has several programs that allow people with disabilities to live in the community with the support of caregivers instead of having to live in nursing homes.  My caregivers do everything from providing transportation to helping me put on my socks and shoes to stretching me out when spasms take over my body and make me as stiff as dried out silly putty.  They make sure my laundry is done to my specifications and my bed is made just the way that I like.  They care for my service dog (including giving her lots of belly rubs and snuggles) and they clean up the dog poop in the backyard with a great attitude.  My caregivers also make sure I enjoy a good quality of life.  They take me to church every Sunday and watch movies with me when we have the time.  The good ones are encouraging and always want me to know what they can do to make me more comfortable.   Because I am keenly aware of how much the issue means to me, I will always be an advocate for community-based programs for people with disabilities.  In the past I have given testimony to state senators and representatives describing what my life looks like and how it would be drastically different if there was not funding available to allow me to live the way that I do.

ADAPT is a national organization based in Austin Texas.  The ADAPT Community “is the largest national grassroots activist disability rights organization in the country. Through their work, thousands of people with disabilities and older Americans have gotten out or remained out of nursing homes and other institutions.” In some cases, people in ADAPT are so passionate about this issue that they have gotten arrested for the radical ways they have chosen to take a stand. I applaud them all their effort. “Free Our People” is their powerful mantra.

One of the things that I love about advocacy is that many times it enables me to be a voice for some people who cannot otherwise speak for themselves.  I have often said that if my circumstances allow me to do my part to enhance the lives of others who have disabling conditions, then I think it is okay that I cannot drive or play hopscotch.  That trade-off is a fair one in my estimation.  And I will use my skills and my voice to assist others that way for as long as I possibly can.

I haven’t been to an ADAPT rally in a while, but if I ever get the opportunity I would love to travel to Washington DC and participate in one on a national level.  I hear they can get pretty intense and I happen to think it would be really fun.  I understand the process of being involved would mean my getting on a plane, finding transportation and a hotel, and making sure I had a reliable caregiver who could handle caring for both me and my service dog in an environment that is unfamiliar.  But I would be happy to put forth whatever effort I needed to.

Because I really like staying home!