I am sitting at my computer tapping Morse code, working on my 14th manuscript. I pause to look out of my fourth floor apartment window at my neighborhood with its Craftsman houses and giant oak and maple trees.
I’m living the dream. I have a literary agent, a publisher, an apartment, and maybe someday a girlfriend. Robert D. Reed Publishers has agreed to publish my seventh book, about a dad’s severe depression and a younger brother who helps to care for his older brother with cerebral palsy. It is based on my adolescence. The book will be released in early 2025.
I listen to the nightly news. It scares the hell out of me that some politicians are running on platforms promising to eliminate Social Security and the Affordable Care Act. I wonder if I will have to live in a group home again. For eight years I lived in a resident house with two roommates and 24-hour care staff after my mother died. She took care of me for 47 years.
I never was happy living at the group home even though I had two rooms. The first year I wrote in the living room at night when it was quiet, trying to sleep during the day. The house was noisy in the daytime with a roommate playing Donkey Kong on his computer and care attendants yakking on their cell phones. I couldn’t think.
Sometimes I went to the Memorial Union to sleep on the Terrace. I slept anywhere downtown, including bars. I kept moving forward with my career.
My care agency saw how passionate I was about writing. After publishing two books in a year, the agency gave me a spare room for an office to write. It was unheard of for a client to have two rooms for themselves.
Unlike my roommates, who were not allowed outside without supervision, I could come and go as I liked. I went to bars, stores, and social events to make friends. I lived in two different worlds. It was hard to accept at times.
I’m my own guardian, meaning I make all of my decisions, from what groceries to buy to how I manage my money and care needs. I wanted my own place for years, but I was told by a social worker my care plan budget was not enough to cover in-home care. I felt trapped. My frustration grew. I acted out at the group home. I saw a new apartment building going up and applied. My social worker did a budget amendment to increase my funding for me to live independently. After several months, it was approved by the state. I hired a new care agency.
I have been in my own home for a year. I feel guilty living independently. My former care agency closed the group home after I left. One roommate, who is autistic, went to live with his father. I don’t know what happened to the other one, who suffers from dementia; I suspect he was put in a nursing home. My decision changed their lives, but I had to go.
I plan on living for the next 20 years or more. I know some people would not approve of the $236,000 yearly price tag to pay for my care workers and my monthly bus tickets, but caregivers deserve a good wage in order to make a living. People can make more money working at a fast food restaurant than caring for a disabled person. Who wants to wipe butts or clean up puke? Not many people want to do it.
People like me, on disability, are in a bind. I want to earn a living, but I’m not allowed to make more than $900 a year to remain eligible to receive services. If I make over $900 a year or my checking account exceeds $1,250 in a month my services will end. Finding a writing job for $900 a year is impossible.
Will my funding go away? No Social Security means no food. As it is now, I receive just $640 a month for food. I have cut back on what I eat. Sometimes I’m still hungry. I have started to go to food pantries to get by.
No Medicare and Medicaid means no funding for home care or an electric wheelchair. My question to certain politicians is, “What are you going to do with people with disabilities?”
We have money to go to war, help rebuild countries, and for pet projects. America also has a duty to protect and care for people with disabilities.
My parents fought for me to be independent. This was their dream for me. I remember my father telling me I would have a computer and a home of my own. I laughed, not believing him.
I often wonder what my parents would say if they could see me now. I’m a published author living in a skyscraper two miles away from the Wisconsin Capitol. I’m living the American dream.
All I want is to be able to write in my apartment with enough money to live in relative comfort. I don’t want much. My apartment, good food to eat, and some spending money to do what I choose. I deserve it.
Steven Salmon is an author with severe cerebral palsy living independently in Madison, Wisconsin. His seventh book, Why Did This Happen, comes out in 2025.
