Only Anecdotal

No numbers, just stories

Archive for the ‘community’ Category

Day 7

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Today’s post finds me in my dining room, huddled around a space heater. I am home from work today, finally having fallen sick after my normally toasty warm abode has transformed since last Friday into a veritable icebox of a home.

I do consider myself lucky, however, as we are no longer in the dire straits we were when the heating system was installed in 2009. Like many post-divorce families, we moved from a comfortable upper middle-class existence to a situation that flirted dangerously close to the national poverty levels.

The fact that we had fallen so low, however, made us ironically better off in many ways, due to eligibility for several programs and grants for low-income families. My children were free lunch kids, then reduced-fee lunch kids once I found a job. This lunch assistance, I quickly learned, put us into a category to receive all sorts of perks that were totally out of reach to anyone earning even a barely-livable wage. For example, we avoided the $270-per-child school bus fee once the kids hit sixth grade, and we were offered opportunities to attend summer camps that even at our formerly comfortable, grandparent-subsidized income could have been able to afford.

We were lucky to have these opportunities, but it was also unfair, particularly to families who were just over the income limits. Because the lunch assistance is based on federal poverty levels, it is easy to struggle in Massachusetts at a much higher income than these programs allow. I continue to find it difficult to reconcile that there is such a line where people can qualify for considerable assistance, but they lose nearly everything once they begin to earn enough to sleep at night. Insomnia quickly returns when a family can suddenly lose everything from fuel assistance and fee waivers to housing itself, simply because of a very small increase in income. The jump required to be self-sufficient is such a grand leap that it is no wonder so many people never manage to climb out of hardship.

Not to sugar-coat the application process for financial benefits, it was humiliating. I remember waiting in line for food stamps a few days after my husband moved out of our house. The man assisting me asked if my husband liked to “rough me up.”  As he collected the paperwork to reveal pertinent details of our financial situation, he told me that I should get a nicer haircut and smile more, as if either were quite possible at the time. We received emergency funding that very day, though, so the questionable legality of his comments was hardly something that I wanted to challenge at the time. I immediately went to the grocery store and bought my family food, crying in the checkout line as I realized that my new EBT card was really going to cover our bill. I shook myself off, and sent regular proof of my continued shame, as requested, until I could no longer stand it. It never got easier for me to ask for help, and I never forgot that feeling. Still, to this day, I would be happy to sit in a SNAP benefits line with anyone else facing the same humiliation that should not be.

Over the years following that initial application, however, we received a great deal of help to improve our lives both short- and long-term, and I am grateful. I was also lucky to have grown up in a family with a highly educated, erudite stay-at-home mom and a high-school-educated, blue-collar, union-member dad during a time that this was a near-guarantee of middle class. (More on this in a future post…). I went to college, and went on to earn graduate degrees. I have uncounted advantages that made it much easier for me to network to find help and navigate the rules and paperwork required.

I also learned that many people want to help, and have ideas of how they can do it. I learned, later, as I worked with others seeking various forms of assistance, that help comes mostly not as it is really needed, though, as an official, obvious, mandated policy. Sure, some assistance is mandated, but much of it is also unfunded, or under-funded.  Some assistance has legislated drips of funding that may easily be squeezed dry in the next year’s budget. Eligibility tests may become all the more stringent in the process, leaving many people in difficulty. Often, great ideas are tested in pilot programs that may or may not continue. Same for grant-funded projects. And then, there is charity, less predictable, sometimes hidden, often wonderful.

Now, over ten years past my food stamp days, my children are now (at least officially) adults, and I manage. The heating system was installed in February 2009, a gift, as I understood it, from the then-Town of Framingham, with the agreement that our energy use could be monitored for some sort of study. A company called Climate Energy removed our old furnace, and installed in its place the innovative Freewatt system. The system included a high-efficiency furnace that was connected to a generator. The generator, a Honda motor, then produced electricity, which we sold back to NStar. The credits were applied to our electricity bill, and our energy bills for both gas and electric dropped dramatically for all the years that the system worked. Some winter months, we paid $10 for electricity, and our house stayed toasty warm. It was such a relief!

Climate Energy also received alerts whenever our system was not functioning properly, and within days–or hours, even–a technician appeared at our house to repair equipment. Every year, they called to schedule the yearly maintenance.

In 2014, though, I took off work for the yearly service day, and instead received a visit from a woman offering to buy back the Honda generator. She told me that the system was no longer being offered in the US, but that maintenance would still be provided until the end of the warranty, after which I would have to pay for service, including an oil change. I kept the generator, and planned for service, anticipating the continued reduction in my electric bill.

A year later, no one called for regular maintenance on the furnace. Climate Energy had warned us when the furnace was installed that the equipment required training and experience to maintain, so I called the company myself to schedule service. I was so spoiled in the past by the company’s proactive management, but I knew it, and never wanted to neglect the maintenance.

Climate Energy was a part of another company called Yankee Scientific, so when the phone rang to their number, I was not surprised. I left a message, then another, then emailed the contacts I had had with the company in the past. I never got a response from anyone, and began the search for another experienced installer. A year later, I had no success, and kept trying, poring over the paperwork I had–I kept everything! I probably should have had someone–anyone–come in to service the furnace, at least. But I didn’t. I was afraid to wreck it, and may have wrecked it anyway in my neglect. Maybe the blower would not have failed with maintenance, but maybe it just wore out.

If you search for Freewatt now, you will find the http://www.freewatt.com website, which directs you to the dreaded site of nothingness. Reviews and videos touting the efficiency of the Freewatt system date back years, and some former installers now seem to offer solar panels instead. I did reach a man who had installed a few systems, but he told me that he had also ripped those same systems out after he received no support from the manufacturer.

A kind man in the now-City of Framingham tried in vain to find records to help us, but the social worker who had originally contacted us had left her position years ago, and her department of social services was apparently eliminated.

Now, despite the current breakdown, I am grateful to have had a great furnace for nine years. We called a large company for repairs, and will restore the furnace, if not the generator, even with a cold wait for the parts. The cost of this repair, however, is not small. I am not sure what might have become of the other households included in the study. I sent out a message to a neighborhood group to find someone with a similar experience, but no one answered. How do low-income households who depend on support manage when assistance so abruptly vanishes? The cost of the repair could easily send a struggling family into a downward spiral financially–clearly not the goal of the original program, but a problem for so many good intentions.

I think now of sustainability and charity, and how intended kindnesses may backfire when the funding runs dry. As we look toward the end of the year, and our wishes to be generous in the spirit of the season, we must also aim for compassion. Receiving generosity does require effort, too, as those in need balance humility and gratitude with self-respect and a desire to give back. We must always consider that when we offer help, or accept it, we develop a relationship. It is a connection that can give hope, but when we do it right, it also allows us all to open our hearts and accept our human condition together. It may be anonymous, and sometimes these are the greatest kindnesses, but only when we accept that the gift never stops with the immediate gesture. As I think back to the ways we struggled in a time of change, I know how easy it is for anyone to end up needing help for any number of reasons. I also know that a lasting difference will consider the future at the outset. A lasting difference will always bring people into the fold with empowerment, choice, growth, and dignity.

 

 

 

Written by Only Anecdotal

8 Dec 2018 at 9:11am

Posted in advocacy, assistance, community

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Twenty

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He was the first of my children to be born in Vermont, about five miles from the Canadian border. Less than a year into a new life in the Northeast Kingdom, we drove the hour in moonlight to a quiet hospital in the middle of the night, and my second boy was born.

I had no idea then how much my perception of the world would change within the next year–hadn’t it already with his brother? Doesn’t it always witha child?–but no. This was a child to make me throw my “What To Expect” books clear into the backyard snow the next winter. That quiet, sweet, beautiful boy did learn to walk, yes, taught by a horse when he was four (true story, yes a miracle). He learned some things, and not some things, and everything more slowly than those books said he was supposed to, more slowly than his brother, and his sisters, and he stayed young–as the developmental experts said. Say. He did not learn to talk, not yet, but still, over the years, he has told me so many things.

He told me of the important qualities to look for in people: love, strength, patience, honesty, connection. Not the loud, not the flash, not the big promise nor the fear. My son told me how to see, how to fight, how to love, how to choose, how to understand the smallest of things, and the quietest, and the most important.

When we think of the abrupt changes that can happen in a few words, a diagnosis, a guess, a realization that, alas, everyone else is growing up all around us, it is easy to think of what we did expect, what was supposed to be, sounds trite to say it, since we all eventually face some version of this, sometime in a life.  He is why I am who I am now, and on days like this, when I think of how far we have come, I have cake and open presents with him, and am glad to see him smile. I imagine life through his experience of it, and I hope/think it is a good life, so many changes, so much so hard to understand. It has been hard. No, I won’t lie about that. We face a future (yes, of course we think of it often)… well, didn’t we always face uncertainty and chaos?  Oh, my boy, I know that the best gift, today after all, is the one you have given to me. You give me hope.  Happy Birthday.

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6 Mar 2017 at 9:32pm

Meaning

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This Saturday, I went to my first translation event in over twenty years. It was the twentieth annual conference of the New England Translators Association (NETA), and I was so happy to be there this year. I learned a lot in one day, finding myself back in a world that has changed so much in so many ways, but in others has stayed much the same.

I say this with some embarassment as I think back to my young self, so filled with ambition that I quit university rather than return after my father’s death to what I saw as less than what I wanted in my life. I told everyone that I wanted to be a translator, and literally knocked on doors all over St. Louis–anywhere with the word “international” in its name–until I got hired somewhere.

I was astoundingly lucky. A woman named Beatriz (Betty) Calvin had a translation company, and talked to me when I walked nervously in the door. I was twenty years old, had never been in another country, and learned my French (which admittedly was not half bad even then) from subtitled movies and pen pals.. and a few great teachers (thank you, Mme Eggers).

A few days after I visited Betty’s company, Calvin International was juggling an enormous job–translations and conferences for a big conference with a big client. They needed help. Could I come in?

I did help out, for several weeks. Within a month, I was hired, full-time. It was my dream, working in an office where I was the foreigner–the only native English-speaker, I managed projects, but also edited translation. I researched, and practiced, practiced, practiced. My French became so much better. Even my Spanish became pretty good (Latin Americans are enormously helpful teachers!). My German improved. I learned how to act around different cultures, became sensitive enough to pay attention to what everyone else was doing and saying, and adept enough to ask questions when I simply did not know.

I eventually decided, with some pushing from a poet who saw some spark in me, to return to university, and study literature. I managed to stay in school for a long time, and thought I would stay forever. I loved it. I never regretted it. I abandoned even that dream when the reality of my children came into play. Disability does not always leave room for the intentions we think we have in this life, but it often helps us become more who we really are. Boundaries. Understanding.

And so it was as I sat in the afternoon session thinking as I listened to Eduardo Berinstein’s discussion on why technology–despite its inevitability–will not supersede the abilities of the human translator.

The talk was titled: “The straw that broke the camel’s back OR The drop of water that overflowed the cup.” The reference was to common expressions… the point at which we cannot take anymore.. expressed so differently in two languages, and yet, conveying the same meaning, at least in the same context.

I suppose we could go back and discover more of the development of these idioms. Why straw and camels? The drop of water seems perhaps more clear to me, but we would never say this in English. Simply “the last straw”–this I often hear, but the camel is always understood. Camels so exotic; phrase origin, in truth I could never really even find a definitive source for this. I can imagine these phrases in works where we would need an enormous adeptness to get the point.. how to convey, for example, some rhyme, or some reference to, say, those camels, in some lyrical turn of words in a literary piece, obvious reference to the phrase, with all the connotations and denotations, and… Well, I get ahead of myself here.

I pondered this, though, on my drive home, and for much of my day afterward, thinking of what pushes us to new places in our lives, what breaks us, what sets us free simultaneously, and what it all means.

I think back to a day when I sat, still frustrated with my lack of progress in my doctoral work, but not caring really so much about it anymore. I was instead looking longingly at a boy who at nine months still was (with his older brother) the focus of my attention. My younger son was not like his older demanding, ever-frustratingly barrier-breaking brother. My younger son did not try to reach for things that he clearly liked. He had not yet succeeded even in rolling over. He cooed and smiled at me, and loved to interact. But clearly, when the pediatrician told me that nothing had changed, when he said that my little boy could still live with me–even though–, I knew on the contrary that absolutely everything had changed.

My younger son lived with me for many years after that, as life became something quite different from what I had imagined, what we had imagined. The words from the doctor that day, I think, were the point that these phrases convey so well: that drop of water that would not fit in the cup we had prepared; the straw that our camel could not sustain.

Life did change dramatically, and as my children grew, I watched and learned. My son, now nineteen, does not speak at all, least in words. He has often made me think so much about the very nature of language and languages in this world. I so often can sit with him, despite his lack of words, and know what he means. His face lights up when he sees me, and there is a sense of wonder that fills me. I am filled at the same time with a strange sense of the irony in having a child who cannot speak in any official language to me or to anyone, despite the fascination I have always had throughout my entire life in the nature of languages.

I have had the luxury of returning to worlds where we bridge the gap of cultures and language. It has been incredibly rewarding to me to return to a place where I can consider the place where I started years ago with that desire to understand, to break down the barriers and boundaries and borders that separate one human being from another at the very source of our being, our meaning. What do we mean? What do we want to say? What do we mean to accomplish in our lives? And then, what stops us? What are the walls, the doors, the stairs we cannot climb?

I have moved into new worlds in the last few years, where I still see the bureaucratic efforts and frustrations, the wish to build (companies, worlds, dreams), and the efforts simply to maintain equilibrium in it all. Only Anecdotal, the stories that here started as discussions of systems of care and the people they affected, is evolving. The stories continue, perhaps with difference foci, but in essence, they remain stories about meaning: how we express who we are, and what we want.

I think of this as I think about Saturday, the relevance of translation and interpreting in our current world, so many languages at our fingertips in seconds, so many desires to have immediate access to worlds we used to wait years to see. We may wish for that immediate fix, the instant translate available so easily, and we may get the jist from this, but do we find the deeper sense of who we are as human beings? Can we read between lines, or do we end so often with word-to-word efforts, in utter jibberish that makes us throw up our hands in complete misunderstanding?

I realize that the old battles remain, as they did back years ago at Calvin International Communications, that words on a page are not so easily transposed into other languages, other cultures, other minds. But I do think that as we have become used to the smallness of the world now, we do desire–and will desire more and more–the quality of our experience much more than the quick fix of the general idea. Translation, interpreting, understanding take time, and expertise, and patience. It will be the desire in our experience that separates art from mere utility, and that brings us to embrace that art, and our own humanity.

 

 

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15 May 2016 at 9:03pm

Thanksgiving

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I was recently reminded of a quote attributed to C.S. Lewis: “Isn’t it funny how day by day nothing changes but, when we look back everything is different?”

This quote has reminded me, in very real and tangible ways, of my own gratitude, the thanks that I owe to so many people and circumstances in my life. My children, my friends, my community.

In the last two weeks, we have indeed seen enormous changes, too, perhaps the culmination of so many small steps. Not all do I face with gratitude. I still cannot fathom the tragedy in Paris. Not yet. Not sure I ever want to.

But other changes in life I have considered, and am right now as I contemplate the last year and a half from a slightly more philosophical viewpoint, thinking over the perspective I gained moving from one world to another.

When I began working at the Consulate, the manager who hired me had described the role as “social services for Canadians in the US”. This was largely true, and as I saw it then, largely what I had been doing in the field–more like the trenches–for several years prior. I had worked around illness then, and disability, and dire situations that were often chronic; though, when I saw them, the need was indeed critical. I held a hand, shared a pot of tea, sat and listened, all the while wishing for a figurative hose to put out fires that had often smouldered for years before erupting in flame. But too often, my only defence for my clients was a squirt gun, at best, and always, always,  I wished for a magic wand.

I discovered quickly that a few things were quite different in the consular world. First of all, I cannot speak for the whole of the Canadian government, but from the start (my interview featured a test, by golly), it was clear to me that excellence was an expectation. That is it. You prove yourself, then keep working at that standard. I hit a huge learning curve of regulations and details, and I simply had to know them. I never even questioned that, and I enjoyed the challenge.

This had always been true, but now, rather than simply holding this knowledge as advantageous in my work, I felt the weight of responsibility much more. Was it the security clearance? Was it the various exams, and permissions, and processes? Was it the diplomatic cachet? Bilingualism? I am not sure, except that the culture supported high quality work. It made me  happy, too, to feel I was rewarded in perhaps subtle ways, and most of all from our clients, for giving it my all.

The above C.S. Lewis quote came from my manager, who spoke at a lovely party held on my last day at the Consulate. My term has ended there, and staff who had been on leave have all made their ways back into the work I had the great opportunity to live in depth. I will miss everyone. There were some very long snowy days riding the commuter rail, days when I was first learning all the various details of creating a document that for my entire life has been my symbol of freedom and adventure… and became as I saw it also a very real ticket to access, connection, and security. Winter. The very real lack of control we have over so many aspects of life on earth, and the many, many ways we learn to maneuver and thrive and love in spite of it, sometimes because of it. It was about the same everyday, in most ways. A few surprises, but the same walk to the station, people I met along the way, same roads, same tracks, the same gorgeous view of the South End, and the same kind faces who greeted me and shared the space everyday. It became natural after a while, as it does, and fun, and amazingly satisfying when there was a problem, a puzzle to work out, and we could do something truly meaningful, even small.

But now, looking back at where this all started, I see that Lewis was right. Everything truly is different.

And it continues, and onward to the next adventures, projects, my great desire to connect, to hear more stories and meet more people, to create something beautiful, useful, better in this imperfect, fabulous world. It is a wonderful life. Happy Thanksgiving.

 

 

Written by Only Anecdotal

24 Nov 2015 at 2:57pm

Imagine

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In the time since I last wrote here, the world has changed.

We have embarked on so many new adventures in the agency where I work, in the state, in the country… It is all a bit baffling to see the ideas so long expressed coming to fruition now. I find myself once in awhile holding onto my cynicism like an ugly old jacket that served its purpose well enough to protect me back in the day, even if it never quite fit. Same with our healthcare. Hard to believe we might be able to order something tailor-made, but right now I am in the ordering business!

Last week I went out to do my first long-term services and supports (LTSS) assessment for the One Care program–Massachusetts’ demonstration healthcare program for people ages 21 to 64 who are dually eligible for Medicare and MassHealth (Massachusetts’ Medicaid program). Since people in this age group only receive Medicare after they have been on SSDI (Social Security Disability Insurance) for two years*, we know that their disabilities are significant and long-term. MassHealth is triggered also by low income and/or disability. Some may buy into the MassHealth system, but most would only do so to maintain some sort of long-term benefit, such as personal care attendants. Either way, we know that dual-eligible individuals often struggle with day-to-day life. While it may be an illness or disability that has made daily activities difficult, it is also true that for many people, this lack of support in the day-to-day needs becomes a downward spiral into isolation and worse health.

The unmet need for long-term services is hellishly familiar to those of us who have worked or lived with disability for any length of time. I personally have clamored for years about what a great world it would be if we could embrace care coordination, medical home, consumer control, participatory healthcare, collaborative decision-making… I have had my mantras, my rants, my moments of frustration.

And now.. I have had the experience of sitting in a consumer’s living room, asking the individual what he needed in his daily life. He told me, told me what he does, what is hard, and I came up with a few creative suggestions for things that may make these things possible.. or easier. I have absolutely no idea whether a healthcare plan is going to recognize the tremendous benefit of, say, a gym membership and transportation to get there. Or support for companion pets. Or even homecare–not so easy to get that sort of help before a certain age. But I am writing it down, recommending it strongly, and ready to explain why.

This first assessment was difficult for me, mainly because I am so much in the habit of thinking two steps ahead, to what is available instead of to what is really needed. I find myself frustrated at my own realization of how much I had adapted to this system of thinking–a system that I have complained about for so long. I have spent so many years hitting my head on the wall trying everything I can possibly think of to get someone desperately needed help (and much of this help being for my own children) that I find it incredibly hard to believe that there is a program where I can write down, “Julie X. needs Y, because it will help her health in ABC way…”, and Y will be granted (I believe the preferred term is authorized). I have joked for a long time that my requisition for a magic wand is on hold, but by golly, I am beginning to wonder if that purchase order did not just go through.

So, when I send in my most recent assessment, with a few very reasonable recommendations that may be completely life-altering for that individual, I am going to hold my breath, cross my fingers, and try very hard to believe that this is really true.

I once saw a woman who was facing enormous challenges in getting any sort of support approved. It was very difficult for her, she said, not to compare notes with her friend from home. Her friend had been misdiagnosed with cancer, she told me, and the healthcare system of her native country had sent her friend for a week to a spa for emotional recovery. When her friend arrived on the train, an attendant was waiting to help with her wheelchair and luggage, and a ride to the spa.

The woman I was visiting looked around her now-cluttered dining room at her own unassembled monitors, and her calendar, and her list of appointments and medications she could barely remember, much less afford.

“This is barbaric,” she told me. It was hard to argue with her. She was sick, and tired, and had trusted enough to go through with preventive surgery that made her feel much worse than she had felt before–and this was months after she was told she should have recovered. She was at a loss to figure out how she could care for herself and her home now. Before her surgery, she had still been mowing her own lawn.

Imagine that this were different. Imagine that she had understood the affect that the surgery might have had on her life afterward. Imagine that she had still had the surgery, and that her doctors had planned for the hands-on support at home that she really needed to make a good recovery. Imagine that our biggest challenge in meeting need were simply a matter of figuring out how to schedule it all appropriately, and not whether it is even possible.

Imagine this demonstration works, and spreads to all of us in our new healthcare system.

I am ready to start imagining. Are you?

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28 Jan 2014 at 1:39pm

Marathon

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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.

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15 Apr 2013 at 11:47pm

And the Backlash…

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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.

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1 Apr 2013 at 9:59pm

Define “Disability”

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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?

Just asking…

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25 Mar 2013 at 10:00pm

Why Am I Waiting Here?

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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.

Written by Only Anecdotal

11 Mar 2013 at 10:21pm

Sticks and Stones

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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.

Written by Only Anecdotal

4 Mar 2013 at 8:11pm