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Wednesday, December 10, 2014

Social Safety Net and Fear: Be Very Afraid

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 silent outside. 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". Link: 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 by Campbell, based on her book Trapped in America's Safety Net she details what took place 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 is not easy. The higher the level of injury the more complex and expensive life becomes. The difficulty adapting to a 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 a 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 her 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 programs 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 damn 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 pile work and documentation.

The system is punitive in a myriad of ways and while it helps it 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 they have a household or personal emergency.

One cannot save for a child's education.

A family member cannot pay for their niece or nephew 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 everyone else in America tries 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 put 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 it 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 fund raiser 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 as 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--go to the nursing 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 it 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 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--rotten to the core. Leave it to me to spoil a wonderful day.


Stephen said...

I don't know if the following falls under the rubric of irony, but having read (and enjoyed and agreed with) a great many of your blog postings, I can fully understand why newly minted cripples cleave to the medical, not the social model of disability. Why? Because if the prospect of life lived with a severe disability is as bleak as you constantly portray it to be*. Given the choice, life is simply better as an "us" than a "them." And given the choice of adapting to the crums of opportunity meted out to PWDs, it's no wonder that new SCIs want restorative therapies more than anything else, why they recoil seeing themselves as members of a community of the disabled.

*One could lift passages from any number of your blog posts to support your bleak, though not unrealistic outlook. The closing paragraph of this post fits the bill as well.

Julie H. Rose said...

Again, correct on all counts. Sadly.

Your last paragraph gives me pause. The observation that perhaps people do not want the elderly, poor or disabled to be vibrant members of society is generally true. Better to campaign for "death with dignity" and get 'em out of the way fast.

I tried to get into accessible housing. After three rounds of forms, all almost impossible to fill out, I realized that I could not go forward. The last stack of forms asked my husband and I to produce accountant's statements showing in detail what our future self-employed earnings might be for the coming year. First of all, I'm not sure how an accountant might do that, but more importantly, how on earth would two people who live below the poverty level be able to afford an accountant? And of course, in the state of Maine we can't have assets over $2000. Add to that if we DID manage to produce those papers and get into the building(s), if either of us worked over the poverty line, we would be kicked out. So, even though I've not seen the other side of 10K a year for many long years, I refuse to rule out that that could change as a working artist (though it's doubtful). To disclose further, just beside I'm sick of living in secret (based on internalized shame that I have no use for), I filed for bankruptcy, lost two homes, and two businesses. And if I tell anyone I'm on disability ($799/month) they think I'm some kind of criminal slacker. I don't qualify for food stamps because I make "too much." The funny thing is that no one sees me as poor. Nor do I. I live a very rich life with books, music, conversation, art, and music. But, I live in an apartment that is dangerous at the top of a staircase that is frequently a barrier to me leaving the house. Can't get another apartment 'cause of the bankruptcy even though I pay my rent on time every month and never ceased to do so ever. I could go on but enough is enough. I'm not even complaining, just adding my story.

I will add, to back up your fear that no one wants to know or see these realities, that when people in the community become aware of my accessibility issues, I'm suddenly a pariah. I'm liked when I'm perceived as "better." If I'm walking with sticks, people cross the street when the see me. I may even be waving hello with a smile on my face. And of course, there are those that are thoroughly convinced that "you make your own reality." My reality (in my head) is just fine, thank you, but these people with their ignorance and privileged viewpoints (that include a lot of misery for themselves when reality doesn't participate with their fantasies) sure make people with disability's lives worse.

End of rant.

As always, your post is excellent. I agree. Thank you. I oughta start blogging again. I had stopped, 'cause people complained I had gotten "too negative." BS. Stating truth as it is is not negative. It is simply relating reality as it is.

I fear that nothing will change. Corporate greed rules. The average person is deluded.

And so, we can enjoy our lives as best we can.

Hope you don't mind my rant. Cheers to you, Bill

Julie H. Rose said...

And I SERIOUSLY have to take issue with Stephen's statement in which he seems to be blaming you for causing "new minted cripples" to believe living with a disability is "as bleak as you constantly portray it to be."

You are stating a reality. I hear you loud and clear; things have gotten worse. I know that 'cause I live it. There's a cycle of striving to live a "normal life" which ends in becoming more ill, over and over again. The system is a vicious cycle. I am fine with myself. I do live in poverty. I happen to also be mostly quite vibrant and happy. Not saying this as "inspiration" (god no) but as a fact.

Stephen said...

Take a breath, Julie. No need to fan flames that don't exist. There's no blaming let alone disagreement going on, merely POVs being shared. My point was that new injuries (and I shared a link with Bill from CareCure from someone who recently became SCI supporting this) are frequently extremely reluctant to embrace an identity of disability, let alone disability pride. Rather, they want science to "eradicate" disability by finding cures.

william Peace said...

Stephen, I am not sure how to react to your comment. The social situation for people with a disability is bleak. Do you think I am wrong? If so, please identify where my analysis is in error. You as well as I know the unemployment rate remains unchanged since the ADA was passed into law 24 years ago (a solid 66 to 70%). Access to mass transportation is highly problematic. Accessible housing often involves a decade long waiting list. I am a realist. This troika kills people. The alternative is to put life on hold waiting for a cure and becoming a professional patient? This is preferable to asserting one's civil rights. I am taken aback newly paralyzed people to use your words "recoil" from me and other people with a disability rights perspective. Where you see bleak I see steel will and the beauty in how people adapt and fight the system every day. I cannot stick my head in the sand and ignore social injustice. If I am too bleak websites and organizations like the Reeve Foundation abound that sell strain sweet visions of the present and future. Perhaps that is more to your taste in terms of social commentary.
Julie. Campbell has taught social policy at MIT and Harvard and has a PhD. If she cannot navigate the health care system we have a major problem. And in fact we do have a major problem. After reading your comment and that your assets in Maine cannot exceed $2,000 I thought what happens when your car breaks down, the water heater blows, you run out of heating oil, etc. A typical problem become a disaster.

william Peace said...

Stephen, I think I get your point better. Of course we are sharing our respective points of view. You are correct some people post SCI have trouble embracing a disability identity. I get this. I think what is at issue is it is easy to embrace a medical model of disability and by extension a desire for a cure. The social model of disability and disability pride are unknown. Rehab as currently practiced I would argue has a vested interest in not exposing people to anything but a medical model. Rehab is profit driven by the cure industry. Given how short rehab is there is almost no chance a nuanced understanding of disability can be learned. This si a huge problem.

Nessie Siler said...


You haven't spoiled my day. On the contrary, the more we see things such as this article and the more we articulate to ourselves and others just Why the social safety net is in tatters the better off we are.

American social policy is basically Elizabethan Poor Law run amok, made even more draconian.
This doesn't make it right, it just means we have a long road to change it.

Unknown said...

Thank you for this! I shared it the Ann Arbor city council because it is so right on.

apulrang said...

I read the article and your comments on it. Obviously, both pinpoint real problems with the way supports for disabled people are designed and carried out. However, I can't quite grasp why all the surprise. Campbell sounds astonished that you have to be poorer to get more aide, not the other way round. Really? Why would someone with more income and savings be therefore entitled to more aid?

It isn't all that strange that programs designed mainly to address low income would have rules to prevent people with more money from receiving them. Unless we go for a universal entitlement (I'm up for that!), there are going to be cutoffs. Short of instituting a straight-up entitlement based solely on disability, the thing do to is get the cutoffs and limitations updated to more accurately reflect current economic realities. That seems like an achievable goal that doesn't require a revolution in thinking.

I guess I agree that "the system" is rotten in its current results, but not necessarily in conception. It's based on certain basic premises I don't really agree with, but that in and of themselves aren't totally irrational or evil. Maybe the real evil is in how these programs have been neglected for so long, without being updated or tweaked based on decades of experience with them.

william Peace said...

Apurlang, Campbell was astonished. She also teaches policy studies at MIT. This saddens me. The level of ignorance associated with disability is a shock. Rampant ignorance is based in part on privilege of money, education, a typical body, easy access to mass transportation, housing etc. The system grounds people down in ways that crush the human spirit and few know or care.