Each January, I begin the year researching what’s happening around the globe in the disability community. I especially want to read the work of other writers with disabilities. Happily, some of those writers are also interested in this column and our region.
Yesterday, I came across “Four Presidential Election Issues Disabled People Should Watch” by Andrew Pulrang, posted on the Center for Disability Rights website.
Andrew describes himself as a freelance writer with lifelong disabilities and 22 years experience as a service provider and an executive in nonprofit disability services and advocacy.
In his article, Pulrang says “First, we need to be able to live independently, in our own places, not in nursing homes or institutions. Passing the Disability Integration Act seems like the most direct way to make independence a real choice for people with significant disabilities in every state. If you need help to get out of bed, bathe, get dressed, go to the toilet, cook a meal, or keep your home clean, you should be able to get that help without having to move into some kind of facility, as if personal care can only happen in a special building. This Senate bill, sponsored by Senator Chuck Schumer and written with the help of the Center for Disability Rights, is a concrete proposal that every candidate for federal office should address. Co-sponsor it, endorse it, ask questions about it, or even oppose it and explain why. The right to live in your own home and make your own life choices is about as fundamental as it gets.”
(You can read the article for the other three points).
I know people in our community where care in an institution is the best fit. For many others, it’s not. The Disability Integration Act would prohibit government entities and insurance providers from denying long range community-based services.
Take for example, my friend and neighbor, Mark; 55, single and diagnosed with late stage pancreatic cancer. Most of his family lived outside of Michigan. As a self-employed painting contractor, he had minimal financial resources. He saw his disability as finite rather than long-term and was willing to go without many government services he thought others needed more.
Mark however, had an extensive network of friends and neighbors who helped him live his last year in his home. People picked-up his medications, cooked with him and delivered food when he couldn’t get out of bed or the bathroom, walked his dog, checked-in with him daily, sent him supportive texts, took him on short trips, paid some of his expenses and when he couldn’t climb stairs, helped him create his world on the main floor of his home. For a short time at the end, he had in-home hospice services.
I miss Mark immensely. Several times a day, I look at his vacant house. His dog lives in another state with his niece. The enormity of living without him is hard to escape.
I know the support we all gave him to remain in his home not only extended his life, but also the quality of his days.
During a particularly rough point, Mark and I texted every few hours. He wrote:
“Unfortunately, there’s no getting out of this one. Super grateful and blessed to have made it this far.”