Injustice

Where is the outrage over social injustices committed against people with disabilities? Anytime anything happens to a person of color or another marginalized group society cries out. But every day someone with a disability fights, even begs, for the ability to live just as independently as those without disabilities. We fight and beg for someone to make it so we can get out of bed, to go to bed, to take a shower, to go to the bathroom, and to eat and drink. Some even to breathe. Those who are lucky even get to leave their home and some get to work; but maybe not if you suddenly lose staff. When the fighting and begging doesn’t work anymore, or you are too exhausted to keep it up, you lose your life. The life you have worked hard to have. The life you deserve. The life you have a right to. Under Olmsted, you legally have a right to. Let me say that again. THE LEGAL RIGHT TO. But when this happens, there’s no protests, no property destruction, no looting. Note: I am not condoning that behavior, just making a point. Why?

Why don’t our lives matter? Why are we not worth getting arrested for? Why are our lives not worth a living wage to enable us to live, and again, live the life we have a legal right to? What dollar-per-hour figure would you put on your life-sustaining necessity to get out of bed, to go to bed, to take a shower, to go to the bathroom, to eat and drink and to even breathe? What dollar-per-hour figure would you put on your independence, dignity and quality of life? What dollar-per-hour figure would you put on your life that you have a legal right to? I’m guessing it’s priceless to you. Unfortunately, a dollar-per-hour figure is put on the lives of people with disabilities; one that is not nearly enough and the government doesn’t give a damn. Society doesn’t give a damn.

As of 6:30 p.m. Sunday I will have just one Personal Care Attendant (PCA) to cover the 24-hour care that my doctor and a State nurse have determined that I need to live in my own home. To live the life I have a legal right to. Even if she was not a student and had absolutely no life outside of her job with me, it would be impossible to do it all. She certainly could not get paid for all of that time as the limit is 62 hours a week (but most agencies only allow 40-48). I have offered to spend my own hard-earned paychecks to supplement wages so one would earn $17.50 per hour to get others to give me even just a little more time and ability to live and (try) to find additional PCAs, but it is not enough. Note: the newly-negotiated union contract establishes a minimum wage of $15.20 per hour in July 2022, which is what my PCAs currently get paid (without me supplementing). Think about that. We can’t wait that long for change, and for one that is not going to save the lives that Minnesotans with disabilities have a legal right to.

Wages are certainly an issue. Being trusted with someone’s life is also contributing factor. It is a huge responsibility. It also requires dedication, commitment, compassion and work ethic. Society is (severely) lacking this in recent years. It has become too easy to get a job with far less responsibility and one that can stay open if you call-in, quit or don’t show up. It has become too easy to receive unemployment (and to maintain it simply by not even following the instructions for applying for a job). Parents will fund your lifestyle through college. Colleges tell their students that they cannot go to school and work. Even some health degree program instructors tell their students not to work as a PCA. It has become too easy for the abled to just live, while it has become too much of a burden for the disabled to just survive.

Wouldn’t you be outraged if you could not do anything without physical assistance from another person and you were (suddenly and oftentimes) without it? Wouldn’t you feel trapped if you could not get out of bed? Wouldn’t you feel starved from compassion if you could not get food? Wouldn’t you feel thirsty for humanity if you could not get a drink? Wouldn’t you feel degraded if you couldn’t get to the bathroom? Wouldn’t you feel disgusting if you could not get clean? Disgusting. It is disgusting that society is not outraged by the degrading lack of humanity and compassion that people are trapped in a life without.

One week from today I turn 40. A milestone that I was never supposed to come close to living. I have defied the odds my entire life. I have worked hard to go to school, play sports, earn two college degrees, be gainfully employed, to have my own home and to have meaningful relationships. To have independence, dignity and at least some quality of life. To live the life I have a legal right to. But I don’t know where I will be or what kind of life I will have as I reach this milestone. I have continued to breathe on my own when I was told I could not. But I cannot live on my own. How ironic.