The SCI Awareness Problem
Longstanding societal ignorance about spinal cord injury has led to widely-held attitudes that paralysis results in lower quality of life. Many people still think quadriplegia is equivalent to a death sentence. This attitude has even been used as justification for ending lives, as when Michael Hickson, a 46-year-old quad with a wife and five children, presented with COVID-19 in 2020. A Texas physician refused to treat him, saying Hickson’s quality of life did not warrant saving him — even though he had never seen Hickson as a patient prior to his hospital admittance, had never seen him in his home, had never seen how he interacts with his wife and children and didn’t know him. Hickson died after life-saving treatment was refused.
In 2003, Harriet McBryde Johnson, a disability rights attorney and activist in Charleston, South Carolina, rolled into the public eye to debate Peter Singer, a famous bioethics professor at Princeton University, about quality-of-life issues. Singer, best-known for supporting animal rights, had recently proposed that parents had an ethical right to euthanize their disabled infants, and in some cases, young children. Humans, not animals. He claimed that children born with severe disabilities were doomed to live lives of lower quality. Their very existence increased unhappiness in the world. Killing them would make room for new, healthy, happy lives, increasing the total amount of happiness. Therefore, allowing parents to do this was “ethical.” His views were widely accepted as worthy of debate.
Johnson, a power chair user whose body was contorted by a severe form of muscular dystrophy from birth, was known to be a brilliant thinker and writer. She lived a full, productive life and was influential in her community. In her essay describing the debate, “Unspeakable Conversations,” published in the Feb. 16, 2003 issue of New York Times Magazine, she begins: "He insists he doesn't want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. …” Her essay led to her acclaimed book, Too Late to Die Young, which Kirkus Reviews called “A remarkable portrait of a woman who is proof that the disabled can live lives filled with purpose and pleasure.”
The Solution: Living Our Lives
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What started as an idea has become a national movement. With your support, we can influence policy and inspire lasting change.
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Lack of awareness about significant disabling conditions, including SCI, is all too common. Many of us with SCIs were ignorant about SCI before we had to deal with it personally. Besides the obvious mobility challenges associated with paralysis, we may have to confront psychological and emotional issues that complicate recovery. We have ongoing challenges with medical complications — skin and circulation problems, UTI’s, respiratory issues, neuropathic pain, autonomic dysreflexia. Not only are most people clueless about these conditions, it can be hard to find qualified doctors who know how to treat them.
All this may seem daunting, but as we persist, we educate the public and change attitudes by showing how we adapt and thrive. We are living proof that our quality of life can be as good as any nondisabled person’s. But we must first educate ourselves about how to cope with SCI. Peer groups are indispensable for sharing and learning. In addition to rehabilitation programs, they are our best source of information and support. Once we learn the ropes, we can educate others by example. We can erase ignorance. The more people see us living our lives — working, volunteering, raising families, traveling, being active in recreation, enjoying life, speaking out — the more they will understand how we can live successful, fulfilling, happy lives.
Like everyone, we can’t do it alone. We need the help of family, friends, and supportive communities. We need a fair shot at succeeding. Our fight for equality in public access, transportation, personal mobility, travel, healthcare, and more is ongoing. We are making progress — despite the lack of SCI awareness. When the general public sees how we must continually adapt to cultural barriers in order to live our lives with dignity, their lack of awareness will gradually wither and fade away.
Learn more about advocating for change here.