As I write these words, snow is falling heavily outside my window. Think winter wonderland — gorgeous in every way possible. Silence reigns. The animals are hunkered down for the time being, and it is very still outside.
But rather than enjoy the beauty of the winter landscape I love so much, I am agitated — highly agitated. A few hours ago, I read an article by Andrea Louise Campbell, a professor of political science at MIT, entitled How Medicaid Forces Families Like Mine to Stay Poor. Two thoughts have dominated my mind:
1. How did we as a society allow the social safety net to be warped into a penurious system that keeps people with a disability on the edge of disaster?
2. Why are disability rights perceived to be an onerous burden that we begrudgingly and with great resistance supposedly meet?
In the article, based on her book Trapped in America’s Safety Net, Campbell details what happened to her sister-in-law after she had a car accident. At the time, her sister-in-law, Marcella Wagner, was seven and a half months pregnant. Remarkably, the baby survived the accident, as did Wagner. However, Wagner experienced a severe spinal cord injury that left her a quadriplegic. Campbell initially thought she would be able to provide her sister-in-law with a lot of help. She was, after all, a professor at MIT and had taught social policy for many years. What she discovered, though, was quite different. She could provide little help.
Adapting to a spinal cord injury (SCI) is not easy. The higher the level of injury, the more complex and expensive life becomes. The difficulty adapting to an SCI extends well beyond the body. Forget the physical adjustment. Forget the stigmatized identity and the diminished social status. Over time, the vast majority of people who have an SCI eventually adapt. Today, however, newly minted cripples enter an even more hostile world than the one I adapted to long ago. Campbell vividly detailed the harsh reality her sister-in-law encountered:
The accident caused more than the physical and emotional devastation that upended Marcella’s career plans. It also brought about an economic tragedy that hurtled her young family into a world of means tested social assistance programs, the safety net of public programs for the poor… The programs Marcella now needs as a quadriplegic have helped her in many ways, but have also thrust her, my brother, and their young son into poverty, with little hope of escape. Until this accident, I did not realize the depth of the trap.
Ah, welcome to the land of disability. Our current means-tested social assistance programs are designed to keep people with a disability impoverished and on the edge of disaster. Immediately following Wagner’s injury, it was clear to Campbell that her sister-in-law’s career plans were in tatters. She, her husband, and infant were going to have to be impoverished to survive. They were told to get rid of everything they owned, spend down, and declare bankruptcy. Campbell wrote:
In order to get poor people’s health insurance, Dave and Marcella must stay poor forever. Marcella qualified for Medi-Cal because she is disabled, but because Medi-Cal is for poor people, Dave and Marcella have to be poor to receive it–they have to meet the program’s income test. Counterintuitively, meeting the income test does not mean having enough income (as in doing well on the test), but rather having low enough income. The income test is actually an income limit.
Again, welcome to the land of disability. The poor are not to be trusted. Those with a disability cannot be trusted. Do not exceed the allotted number of catheters per month. You had damned well better hold onto the receipts and be able to demonstrate you have used up the allotted amount. If you need more, be prepared for a mountain of paperwork and documentation.
The system is punitive in a myriad of ways and, while it helps, it also hurts and grinds people down.
Assets cannot exceed $3,150.
Money cannot be used to pay student loans or household bills.
One cannot save for retirement.
An emergency fund cannot be created in the event someone has a household or personal emergency.
One cannot save for a child’s education.
A family member cannot pay for their niece’s or nephew’s education. That would be considered income.
Any inheritance for their son would go to Medi-Cal.
In short, Campbell’s sister-in-law and brother are barred from doing what most people in America try to do — save for retirement, pay for their child’s education, and earn as much money as possible or desired.
Campbell gets to the bottom line, a twisted bottom line at that:
America’s social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor. They are designed to be less attractive than work. One problem is that they are so miserly as to be impossible to live on. For a disabled person like Marcella, whose expenses will be greater than for an able bodied person, the limits are truly problematic. And because insurance for the poor is the only source of the long term supports and services the disabled need, they get caught up in the anti-poor dragnet as well.
Campbell puts the perfect face on why so many paralyzed people are forced to live in poverty — that is, live in poverty forever. To raise children in poverty. To be unable to have careers. To lack the ability to get a higher education. To travel. The list of impossibilities is heart breaking. Worse is the cost of empowering technology in the form of a wheelchair. Sure, a wheelchair is covered, but not an appropriate wheelchair. A used power wheelchair costs about $25,000. Need a wheelchair cushion to prevent pressure sores? Good luck. For me, I must have a demonstrated medical need. That means being hospitalized with a pressure sore three times in one calendar year. Yes, to have a cushion designed to prevent pressure sores one must develop a pressure sore first and do so three times. Need to renovate your home to be wheelchair accessible? Good luck. Create a fundraiser, because those funds are not going to appear.
Campbell and others come to a basic conclusion: American social policy is rotten to the core. So, on this lovely day, I look out at a thick blanket of snow, and I get it. I really do. Crippled people are unwanted. Corporations consider us a drain on profits. Our elected officials think we are crooks looking for a free ride. The poor and disabled can’t be trusted. Our desire to be connected to the community is cut off; you are supposed go to a nursing home from which you will never emerge. Mass transportation is too expensive. A lift on the bus? Sorry, you are not worth it. Housing that is accessible. Dream on. Campbell did a great job putting a human face on what can happen. It is instructive to “read through the heart breaking stories” and the “many similar horrible situations, including many who thought they had good health insurance until a catastrophic accident or expensive medical condition proved otherwise.”
I wonder though. Are such stories helpful? Some will dismiss them as anecdotal and not an accurate representation of the social safety net. My real fear is such stories will be counter productive. People have always feared disability. The story of Campbell’s sister-in-law only heightens that fear. If people cared — that is, if people wanted to have the elderly, poor, and disabled as vibrant members of society — we would not have accepted a rotten social support system.
Campbell is correct. It is rotten to the core.[Headline image: The graphic consists of a drawing of four people, each holding a corner of a dollar bill representing the social safety net. Each figure is dressed in a button-down jacket and pants. The figure at the lower left is wearing yellow; the figure at the upper left is wearing blue; the figure at the upper right is wearing a peach-colored jacket and red pants; and the figure at the bottom right is wearing green. The figure at the lower left has light skin; the other figures have dark skin. The dollar bill is green. It has a 1 in each corner and an outline of the head and shoulders of George Washington. All of the figures and dollar bill appear against a white background.]
William J. Peace holds a PhD in Anthropology from Columbia University and teaches courses on disability and bioethics at Syracuse University. This piece first appeared on his blog, Bad Cripple, and is reprinted by permission.