I didn’t see this coming. None of us did. The social isolation that many people with disabilities feel today is increasingly a reality for us all. The challenge in accessing what we need to survive and thrive on a daily basis – transportation, health care, employment, education – felt by many in the disability community, is now a problem for us all.
Life has never been fair. And it is about to become less so.
Those of us living with disabilities know this. We live it every day. The world in which we live and navigate has a bias for ‘normalcy’. Its architecture, systems and policies are built upon assumptions that people can do certain things and perform certain tasks.
Assumptions create inequity. And assumptions regarding people with disabilities are dangerous. Today, given COVID-19, they are life threatening.
I have now lived half my life as a quadriplegic. Paralyzed from the chest down, I rely on others to assist me with the most basic of daily tasks. I have a fulfilling life filled with friends, work, and family. But I have also seen the world from the other side, and seen how it treats people like the ‘me’ I am today. It has been 26 years since I walked out my back door and peddled toward my spinal cord injury in a bicycle accident, but the way many view the disability experience is sadly unchanged.
During a recent hospitalization I encountered many medical specialists, therapists, and other caregivers. They were uniformly shocked to learn I was gainfully employed and married. A few tried to hide their shock. Most didn’t, or couldn’t. Before I had said a word, they had quickly assessed what I could or couldn’t do and attached a value to that. Research has repeatedly shown that medical professionals undervalue the quality of life – and capabilities – of people with disabilities, when compared to the ratings of people with disabilities themselves.
The National Council on Disability has recently completed a series of reports on bioethics and disability. It focuses on the historic and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, which perpetuates unequal access to medical care, including life-saving care.
Given these biases, what will happen to people with disabilities when access to COVID-19 testing, hospital beds, ventilators, and personal protective equipment for health providers is scarce? What is now happening in Italy tells us the future is not good. Their “disaster medicine” guidance makes losers of Italians with disabilities. Here in the United States, we call them “crisis standards of care.” Who will be making these decisions and will there be a disability voice among them?
It is great to have individual champions in our corner. Congressman Chris Smith has written a letter to Secretary of Health and Human Services Alex Azar and the Attorney General William Barr calling attention to the anti-discrimination provisions in existing laws like the Americans with Disabilities Act and Rehabilitation Act. Senator Bob Casey has authored the Coronavirus Relief for Seniors and People with Disabilities Act of 2020.
But let’s be clear: Congress needs to act now to protect and support people with disabilities during this unprecedented and scary time.
Lawmakers are preparing to spend trillions of dollars to prop up our sagging economy, and necessarily so. While much attention has been paid to helping small businesses, the airlines, and the hospitality industry, I’ve seen very little ink spilled addressing the needs of the disabled. And most of it has been written by people with disabilities.
Today, many people with disabilities rely on a complex array of government-funded programs and services to maintain their independence in the community. Will direct service providers who get people like me out of bed every morning have access to personal protective equipment? For their protection and mine?
It appears there will be a huge influx of dollars to expand unemployment insurance. How will this affect the asset limit restrictions that all government programs have? Without these considerations, people with disabilities could lose access to Medicaid (which provides their in-home direct service providers and medications), Social Security payments (vital income supports) and subsidized housing.
Schools have closed in nearly 40 states. How will we ensure the law’s requirement for access to a free and appropriate public education?
Congressional acts of this size are moral documents. They decide what’s worthy of funding. They create winners and losers, making clear statements about what is valued and what is not. Where will our community rank on the list of priorities? We need to ensure that people with disabilities are worthy in the eyes of this Congress.
We have asked you to contact members of Congress before, on important issues that threatened community integration principles, or helped to move us forward. This is different. Disability cannot be an afterthought in this next stimulus package. AUCD has prepared an action alert that I’m asking you to act upon. Congress is getting an earful from the hotel industry, bar owners, and restauranteurs about how they need federal help. They’re not hearing from people with disabilities and the organizations that support them. The time to act is now.
When the rules don’t work for people with disabilities, we change them. We did it in 1973 to pass the Rehabilitation Act. We did in 1975 to ensure access to education. We did in 1990 to pass the Americans with Disabilities Act. We need to do it today. The assumptions need to be changed. People with disabilities are not outliers. We’re everywhere, just socially distant. Just like you.