When I heard that the Republican effort to repeal and replace the Affordable Care Act didn't have enough votes, I thought that maybe my family could stop worrying about health care. The next day, my brother-in-law Bill, who relied completely on government assistance, died at age 75.
Developmentally disabled at birth and unable to work, my brother-in-law relied completely on Social Security, Medicare and California Medicaid for his support services that would be at risk with 35 percent cuts proposed to Medicaid. In addition to his physical disabilities, he faced many challenges from conditions including chronic obstructive pulmonary disease, arthritis, Parkinson's disease and behavioral issues. After 25 years in a state developmental center, during the last 10 years of his life, he benefited from high quality care through a state-supported assisted living service in California that enabled him to receive care in his own apartment. He received assistance with showering and dressing, meal preparation, feeding and transportation; all of this was provided by a small team of people who liked Bill and appreciated his humanity.
Bill loved jokes; he liked to tease and be teased. He had a big heart and cared about his family and care providers. He liked watching old westerns, especially Hop-along Cassidy and the Lone Ranger, or listening to Patsy Cline, Connie Francis and other music that reminded him of his adolescence. He had a penchant for chocolate milkshakes, fruit smoothies and stuffed animals.
One of my fondest memories is when Bill saved up his spending money to buy a small stuffed bunny for our youngest granddaughter, then three years old. He beamed when he gave it to her. She squealed with joy and hugged it close.
Some days Bill spent hours saying, "I'm sorry" over and over again. He may have been remembering mistakes made and things he had done wrong, but mostly I believe he was just apologizing for being different from other people in our family.
He also worried about who would take care of him. My father-in-law died 25 years ago, a few years after I met Bill. At that time, my husband assumed responsibility for Bill's care and took it seriously — he visited him monthly, wrote to him every day they were not together, and coordinated larger family visits that included Bill's nieces, nephew and grandniece.
Yet, Bill worried about who would take care of him if something happened to his older brother. So, when I visited, we assured him that I was the back-up plan. He still worried.
Although the latest attempt to repeal parts of the Affordable Care Act failed, I remain most concerned about the fundamental divisions about what kind of society we want. Please, no more talk about who is deserving of care or how much care they deserve. No more arguing about why people should care about people outside of their immediate family. I want a society where housing, food, clothing and health care are basic rights available to everyone. Not everyone has family around to watch out for them and safeguard their care. I want my tax dollars to provide for the most vulnerable members of society — the young, the old, people with disabilities, people who are sick -- precisely because I think that the best measure of a society is its compassion.
This piece is part of Fighting for Our Lives: The Movement for Medicare for All, a Truthout original series.
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