As the helicopters and police cheers roads gathered here In Framinghaam, it was thrilling, as it always is, to watch the racers speed past.
This year, of course, is different. It will never be the same. .
A life can be so radically altered in a heartbeat. We all know it, and yet we do not. We do not want to believe that evil is behind it, certainly. And yet, sometimes it is.
I think now about the families, the wounded, those who saw too much, those who lost so much. Strength, and love… We need this, need it so much in this world.
Last week I wrote about “This American Life” and the story about SSDI. My reaction was to applaud the exposure, the understanding of an invisible population of people with disabilities who are unable to work.
Many in the disability world, though, were not so generous in their view of this story. A number of organizations have pointed out the problem of lumping disability benefit programs in with welfare. They point out how incredibly difficult it is in many cases to get the much-needed assistance that SSDI and SSI provides to individuals and families, and that the program did not adequately reflect this. And I noticed that the portrayal of medical insurance did not tell the whole story, either. (It takes two years to receive Medicare for most SSDI recipients; Medicaid coverage is immediate for those approved for SSI.)
The truth? It is incredibly difficult to battle bureaucracy, no matter what the circumstances. It involves entering a world that seems entirely isolated from the official story, and it sure as hell does not come with a guidebook.
It hardly matters when the word “disability” comes into play; as soon as a disability affects any aspect of life, i.e., prompts the need for assistance or accommodation, the disability bureaucracy starts churning. It is impossible to move forward in life without going through it, and sadly, going through it is a brutal, demanding, demeaning exercise in proving to the rest of the world that it matters, that a person matters.
It happens in hospitals and doctor’s offices, in schools, in employment, in housing, in transportation, in everything–where suddenly a person with disabilities suddenly has to ask permission for access to everyday activities. It shocks and terrifies people who have never been through this process–and not without reason. It is not the person, however, who is shocking or terrifying; it is the system itself. No one should have to prove the need for human interaction–the right to be a part of the community–and all the things that may unite us as human beings.
What I found compelling in the NPR story was the recognition of people who are so often left out of the big picture, whether it be economic, or anything else. The story, while incomplete, has started conversations.
I was home sick over the last week, and had a lot of time and fever to lie around pondering philosophical questions…
…like, what is disability?
My mom, whom I am going to keep using as a reference whether I mean to or not, hurt for most of her adult life, and could hardly breathe or walk for the last few years. Yet, she never considered herself to be disabled. I found out how she had to use a towel to turn her key when she started her car, because her hands were so mangled from rheumatoid arthritis. Some call that an accommodation, may even find some better solution. Some don’t bother, and call it getting the job done.
But I thought more of this after kicking back with NPR on the old radio, listening as I like to, to This American Life. And wouldn’t you know it this week.. the program was all about disability.
Instead of listening to me ramble on for too much longer, please go listen. Ira Glass talks with Chana Joffe-Walt of Planet Money, who hopefully will take this stuff to the big time, meaning, beyond the realm of people who already know how discouraging it is to try to live a normal life as a person with a disability. I hope this will bring attention to the impossibility of being a person with less-than-optimum health and less-than-optimum education. Golly, can we do no better than this? I always think…
You see, I hear about places like the poor town portrayed in this episode, and I’ve lived in or near a few of them. People work hard, physically hard, do what they are supposed to do, and eat what they are accustomed to eating. In years past, even in my childhood, there was some wholesome aspect to it all, but as factories closed, as high fructose corn syrup got put into everything, as satellite dishes and video games replaced the outdoor sort of entertainment I remember, hope seems to have evaporated in towns like this. I exaggerate, perhaps. Or not. I stereotype. I apologize. There is always more to the story, and nuances that are missing. But still, it is hard not to look for something, when so many people are in such tough circumstances.
But is this what it means to define oneself as “disabled”? Is this all there is?
Ticket To Work?
Is it impossible in general to escape not only disability, but to escape poverty in general? It takes a really good job–a huge leap in most cases–to be able to survive beyond the world of TANF and SSDI (or SSI).
Work and love.. Freud said that these are the two things we need to be content in life. If we take that ability away, are we truly fulfilling our own Declaration of Independence?
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness.
And indeed, are we not creating inequality? Are we denying equality?
I see that the future is here already, care integration, or what it may be…
I see that the people I see still need help, more perhaps now than they did in previous years. Perhaps it is the years of trying that have worn people down, or perhaps it is my own wishes.. wishing that we could do this right. It really involves more than a new coordination of healthcare; it is a more holistic thing we need, though.. a recognition of all that life has to do with health, and all that health has to do with life.
Will we succeed in these new ventures? I want to be optimistic about our new care organizations, what they may be, as we head into a new era. I want to think that the medical model that will prevail will expand and reinvent itself.
Wish. Yes, this is the best we can do.
Back last fall, when my mom had experienced another frustrating exchange with her primary care physician, she announced her plan of action.
“He never listens. I am going to bring this up at the next appointment.”
At that appointment, my mom swiftly asked her doctor, “Do you like me?”
I was taken aback by the question, and I believe the doctor was, as well. In talking to someone else about her concerns, my mom had learned of personal tragedies in her doctor’s life. Perhaps that explained his inattention, she thought. Or maybe it was true that he just didn’t like her much.
My mom was a difficult case, in many ways. An order to cut back on salt that she received in the hospital seemed so overdue that we wondered if it really was the first time she had heard it. She had given up smoking, albeit pretty late in the game. Her lifestyle was not an active one, comforted as she was by being home, immersed in a book, or Downton Abbey… damned be exercise. Noncompliant, I am sure.
But aren’t we all? I mean, really. There is such a big relief in getting past that encounter with any authority… you know? those days, or weeks, behaving as we are supposed to… not necessarily to be healthier, or better in some other way, but to avoid the scolding (or worse). And then, we walk out, free at last… this is the problem with the relationship that even entertains the notion of “compliance”.
And as I have said so many times before, compliance may be more a question of feasibility. If an individual cannot afford the prescribed medication, how will he be able to follow the doctor’s orders? If she cannot get to the doctor’s office because a ride never shows up, how can she avoid being a “no-show”? If I do not understand why you want me to change a habit, if the reasons you give me seem so intangible, why would I give up something I love, or start something I dislike? And speaking of this, why should I trust you at all?
I am very sure–have felt it myself at times–that what doctors perceive as noncompliance may indeed be just that: stubborn refusal to follow orders. In my mom’s case, I know that it was hard for her (though she did it anyway) to make the trips to the lab for endless blood tests for a doctor who seemed to dislike her, and who also seemed to have no notion of why these trips into the lab were so taxing on her. It is hard, after a bad–or even traumatically pointless–experience, to return to the doctor who started it, and have faith in the advice (or orders) that this doctor, or any doctor sometimes, hands out.
It is clear in this year that the climate is changing enormously. There is a much more noise now about the need to take the consumer’s point of view seriously. Is it real? Slowly getting to real, yes, I think it is. How can we make healthcare easier? How can we deliver care more conveniently, and effectively, not just for the professionals, but for the people who seek the care? I see people from the home care world now popping up at technology-related events where I never saw them a year ago. Social workers will cover the hospital not just during weekdays, but at night, on weekends, so that people who end up there will always have the opportunity to talk to someone about the realities of life, no matter when they are in the hospital. Can we afford continuity of care? I hope that we see the error of years of neglect, at the real costs of constantly cutting out the human contact in favor of the urgent, impersonal procedures. It is time that we need more–time for listening, and for actual, physical help–and smarter ways to figure out how to create more connections, not fewer.
The man was nearly sixty years old, a generous guy with a productive life. He loved his family, and enjoyed his work at the local supermarket. But there was one thing that brought him to tears the day I met him: the R-word.
I do not need to repeat the word. He told me he was “in the slow classes at school”, and recalled the habit he developed so long ago of hiding in the bushes after he got off his bus. It was only a short walk home from the bus stop, but best, he said, not to have to walk in front of the bullies who taunted him with that word. He had heard it again recently, from someone who had hurt him in other ways. He said that hearing that word again brought back a lifetime of pain, pain that he had escaped largely in the adult world, but not without some journeys into worlds with alcohol and other distractions.
The word was more than a word, of course: it was a way of limiting him to a certain place in this world. The fights he is fighting right now are all around that. He wanted to make decisions about where he lives, whether he walks or goes by bus somewhere, who his friends are. And everyone “worries.” A diagnosis of mental retardation implies a certain need for safeguarding. And this man did not want to be “kept safe”. He wanted to go on living the life he had lived before.
Words can hurt, just as badly as sticks and stones. Worse.
But it is not only the obvious slurs, the outmoded names that differentiate people who have faced discrimination. Any diagnosis can limit, in its narrow description that reduces the person to the medical condition. We seek some way to order the chaos that being human presents to us, and in some ways it is helpful, helps us chart a way through unclear paths.
But a diagnosis is only as good as a vague road map; it does not show us who a person is, or how the medical conditions may affect the life.. or what the life is really like at all. Without consideration of the whole person, that clear path on paper may turn out to be much bumpier and less predictable than we want it to be. It may also exclude joy, and hope.
I hope that as we shift focus from a system of medical management to an actual health system, we fight the urge to categorize people as we categorize disease. I hope that we can remember the power of words, and the danger of reductionism, the pain and indignity of dehumanization.
As I was driving to a meeting last week for the Dual-Eligible Demonstration Project, a man stood out near the stoplight. He was holding a sign, “I do not drink. I had a stroke and am homeless.” I nearly picked him up and took him to the meeting.
His story–the story reported on his sign–is far from unusual in my world. But it is unusual enough that the experts who treat strokes as an acute medical event still fail to understand the repercussions of health conditions on everything else in life–and likewise fail to understand the effects of everything else in life upon health conditions.
I am not talking about behaviors that are within an individual’s control; I am referring more to the chronic situations that come about first because of that acute medical event, and the difficulty not so much with the illness or accident itself as with the struggles in day-to-day life afterward.
The vision of projects that attempt to coordinate care for dual-eligible Medicare and Medicaid recipients makes a lot of sense, and could allow for the flexibility that can make an enormous in the quality of life of those individuals, and hence, in health outcomes.
But flexibility comes only when there is an understanding of the full picture of a person within the context of life, rather than within the context of a healthcare setting. This is where expertise of assessment comes into play, and where I fear that we are in real danger of getting tripped up by that very definition of expertise.
What is an expert? I see the established healthcare’s system respect for degrees and licenses, and see a structure that is resistant to accepting the expertise of the individual receiving treatment–except, sometimes, within the context of that treatment and the immediate needs around it.
It is not enough to share decision making, or to create a participatory system. More than that, the entire system needs to be flipped where the expertise of lived experience is valued as much as the expertise in the medical field. That clinical expertise is essential, of course. But it does not outweigh the practical aspects of life and the necessity of understanding how life changes all around when an individual’s health changes–and what can be done in all respects to improve the situation. We joke about a school of hard knocks, but the degrees we receive from life are just as valuable as those that we receive from studies within a well-established hierarchical system.
Part of the difficulty comes, too, from the harm that has come from years of medical arrogance. There have always been caring, wonderful medical professionals, and there always will be. In spite of any individuals, though, the power dynamic has allowed an enormous abuse, particular of people with disabilities, whose medical status amounts on a systemic basis to a problem either to cure or to ignore. The harm of this attitude is that mistrust of that system leads to mistrust of individuals–particularly in times of change where the powerful name the game–and where that power base remains so heavily weighted within the existing paradigm. More mistrust leads to defensive tactics, and to cynicism instead of listening, understanding, and working together.
Can the paradigm really shift in favor of the consumer in this new age of healthcare? I don’t know. I see vastly different attitudes about health and medicine in general in many other countries, where a broader range of health seems to be covered. But culturally those attitudes are so enormously different from the way we approach life here in the United States.. and we may not want to pay the taxes necessary to support such systems, even if we could accept that level of overt governmental control over our healthcare. But more flexibility? is it possible? Can we shift our system of medical care to one of health care, of care for people, that works, that truly supports the value of life, as is lived, itself? Time will tell.