Help me avoid this nursing home fate!
The year is 2023. We’ve invented time travel and I’m writing this letter to you in the past from a nursing home in hopes that you can spread my message and something can be done to avoid this.
I’m 59 years old, still in the prime of my life. My mind is sharp. But I’m fading fast. I’m losing my passion for life because I have no freedom. Someone else decides when I get up, when I take a shower, what I eat. I have good friends all over the country, but nobody visits and few people call. I don’t blame them. Who would want to be around this atmosphere? I used to fly all over the world talking about the things I did with my freedom. And now, I’m basically locked up. How did I get here?
It’s a long story, but I was born with muscular dystrophy. My condition has weakened all my life. In 1983, I could dress myself, shower myself and do everything without assistance. By 1993, I was married and my wife helped me do that stuff until our divorce. In 2003, I had to hire an assistant to come over for an hour every morning to help me shower and dress. But I could still use the bathroom independently. In 2013, my condition had evolved to the point where I needed more help than I could afford to pay. I would take risks, going hours home alone, despite the knowledge that I could easily get myself into a position or situation in which I needed help and I would be stuck. One time, I was reaching for something and I slipped and fell over in my chair. I didn’t have the strength to sit upright so I had to spend the night slumped over in my chair. Those kind of things happened more and more, to the point where the only way I could get the hours and hours of “care” I needed paid for was to be institutionalized.
Yes, I have Medicaid. They pay for that kind of thing. But unfortunately, the only way they will pay for extended “care” is if the person in a nursing home! It doesn’t make sense! The government could save a lot of money by allowing me to hire my own people and manage my own care. I need about 5 hours a day at $10 an hour. But because of the nursing home industry and their strong lobbying efforts, our government… the one that stands for liberty and justice for all… supports the nursing home industry above the freedom of the people who elected them to office.
But there is still time for you to help me avoid this fate. The 1990 Americans with Disabilities Act requires that people receive services in the most integrated setting and the US Supreme Court’s 1999 Olmstead decision reinforced the idea that unnecessary institutionalization is discrimination against people with disabilities. However there is a bias toward institutionalizing people that is prevalent in America and it is harmful and even deadly to people with disabilities. People come here to die.
I’m writing this letter to you to wake you up to what is going on right now in Washington DC. ADAPT is having their annual “action.” They are a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. They are in Washington right now, fighting for my future freedom, and the freedom of millions of people who want to remain free. And that includes you. Please visit the ADAPT web site and look for ways you can support the effort.
A very wise old man once told me “Get involved as if your life depended on it. Because it does.” His name was Justin Dart, one of the greatest leaders in the history of the disability rights movement. Now more than ever, I realize exactly what he meant. Free yourself. Free me! Free our people! Let the money follow the person!
I have to go. They’re telling me it is time to go to bed. Please share this article now with your friends! Do it now before they discover it and delete it and take my computer away!