Archive for the ‘advocacy’ Category
Awakened
It has been less than one month since the inauguration, and the barrage of orders has come from on high at such a pace to shake up the world significantly. In the midst of this onslaught, I hear the criticism of “woke” ideologies.
Growing up, I heard a lot of things that I didn’t like. My dad was a construction foreman, union carpenter, and despite the diversity of workers, ethnic biases and harsh language were rampant on the sites–and many other places. Divisions were visible, and it had only been a few years since schools were divided by race. They still were, if then by economic realities instead of actual laws. As unpopular and impractical as busing was, it did make a difference. Affirmative action made a difference. The ADA made a difference. Biases became more muted, The casual slurs hit harder, because they were less common. This is not to say that biases were erased, not by a long shot, but the voices of people who previously had a small platform became more prominent. I grew up. It was a good thing. For someone like me, who first was fascinated by the diversity of cultures around the world, then facing disability in my family, I felt hopeful, even though the road still had miles of tough climbs ahead. I think that the better term for this road, this process, is not “woke.” It is “awakened.”
Anecdotes
I began this blog several years ago when I was working for the Metrowest Center for Independent Living in the Options Counseling program. It has been nearly fifteen years since that program began as a pilot, and it is still up and running, a regular part of centers for independent living and elder service agencies.
Back when we were getting started, the program was exciting. Originally intended to be the link between people at risk of nursing home placement and the home services they needed to avoid it, Options Counseling was not as easy as it may have been if those home services had been funded, but it gained a ton of hoopla nonetheless. This is the way these things so often work out–much ado and an utter lack of what was intended–but I gained valuable experience in creative problem solving and community outreach to make things work for people as much as possible. I also learned when to tell people the bitter truth.
My next work for the Canadian government was also an exercise in problem solving, with the gratification of having the tools I needed to get the job done, at least most of the time. The burnout and stress I felt in Options Counseling were replaced with a warm sense of accomplishment. There were hiccups and complications, but nearly none were insurmountable. In fact, we managed to meet our clients’ needs relatively quickly, and with a touch of friendliness that warms my soul to this day. Even on the busiest day, I never felt unsafe in that position the way that I have in many other roles. The people who needed our help all had a story, and many days I felt that we were building a case to prove an urgent need combined with an identity that qualified for the ask.. I loved it, really, and I enjoyed the people we met.
Lately I have been working on solving problems, too, but life in the private sector of the disability world is yet another thing. Financial resources are sometimes nearly limitless where I sit right now, and yet, the human element remains. We live now in a time of scarcity of service, on all levels. I say this not from a space of post-COVID pessimism, but from all the stories I hear and the things I see from those people in the thick of things. There just isn’t enough–not enough people willing to do the jobs, not enough jobs, not enough programs, not enough listening. Money helps–a lot–but too often, there is just nothing left to buy.
I have not collected the numbers necessary to run data analysis at scale. Being out in the world talking to people nevertheless leaves an impression. In the years I have collected these anecdotes, I have noticed a few things.
- The US healthcare system offers amazing innovations and opportunities, but is inaccessible to many people from a practical, financial standpoint. This is not new, but it has gotten worse.
- Money does not solve everything. But it helps.
- COVID-19 was a shock to everyone, even the people who expected it. It raised awareness of our lack of preparedness. I feel that relief not to think about our masked days all the time now, but the resentments that came out of the emergency seem stronger than the lessons we learned from it.
- People are living longer with chronic diseases and disabilities, and we are not ready to take care of them. This is no surprise. The fact that the infrastructure bill ended up removing remedies (and actually making it worse for providers) is shameful, to say the least.
- It is tempting in helping professions to make referrals and call it a day. What is available on paper (or on google) is rarely the reality, and unfunded programs and waiting lists frustrate people who need help now. Better to tell people the truth than to send them down a rabbit hole.
I struggle with my anecdotes, and with the value of the stories I collected over the years. We grapple now in our media with non-truths and rewrites, and I fear the confusion and divisiveness. It is hard to listen to all sides, harder now, and yet, we share a common thread as human beings. As a non-fiction writer and reader of tales of all sorts, fact-checking matters, but data sets do not always tell the real story.
Day 7
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.
An Outing to the Zoo
As I have been watching the families at the border, I have remembered also that I spent several years in St. Louis volunteering at the International Institute. The refugee organization was generous to me, and I gained far more than I gave in assisting people in English classes, and in working with a social program for Amerasian teens from Vietnam. It was the early 90s, and most of the refugees then were from Vietnam, the former Soviet Union, and Ethiopia.
I remember in St. Louis that the area around South Grand was an area where many of the families I met lived. For most of my life, I knew these areas as German (though my own family lived in North St. Louis), but the change was good. My family came under some hardship, but nothing like the trauma that the families I met at the International Institute.
Once, I helped a man to translate course certificates from an IBM course. The certificate was in French, and the man told me that he once spoke French as much as he spoke Vietnamese, but he could not remember now, and hardly remembering the programming had learned in those early days, a different time. But still, a certificate could make a difference for him.
A couple worked with me on conversation. They were former Soviets, and the man–an engineer–drove a taxi and complained, and resented that his wife (a patient woman) was learning English far faster than he was.
I worked with the teen program, but it was hard. The kids did not want to do “refugee things”, and preferred hanging out and enjoying normal American teenage life. I couldn’t blame them. And because all of them were their families’ tickets to refugee status–children of Vietnamese woman and American soldiers–they had even more reason to grasp tightly to their new country.
One day, a very cold day, I went to pick up my teen partner for a trip to the St. Louis Zoo. When I arrived, though, she was gone. Instead, I found her mother and four-year-old half sister bundled to the best of their abilities, and ready to go.
So we went. It was incredibly cold, though, but in the trunk of my car I had two extra pairs of mittens that my mom had knitted for me. We were warm enough now, and crossed past the bears (only a polar bear was out where we could see him). We looked to some of the enclosed exhibits, still, the reptiles. As we wandered, the mother began to see animals she remembered from Vietnam, and she started to talk about her country, and her past.
She told me that she could not remember her daughter’s father’s name. She tried and tried, but so much had happened. She told me of her house in the mountains, and of her other child, the one she begged not to cry, so they would not be found. She told me of the fire they set to her house in the mountains, and running, running with nowhere to go. She told me of the kind Vietnamese man who accepted her–he came to the US with her, and he was the father of the little girl who went to the zoo with us that day.
At the end, I didn’t know what to do. I drove the family home, and they left–wearing my mom’s mittens. I never asked for them back, and I never told my mom, either. But I think that she would have been happy to know that they had them now.
I’m not sure what happened to the family, but the last time I was with them, they were working hard, and had moved to a nicer apartment.
That day changed my life.
I have thought about many of the people I met then, people who had fled horrific hardships to come to our country, to have a better chance. We all must know many of the immigrants who come here with their dreams and their ambitions, who give up everything for the sake of their families. I think of the incredibly educated, sage scholars who worked in ordinary jobs in car plants (like my sister-in-law’s father, an art history professor working for GM).
I think of my own friends, literature students who came because coming to the US was the way to succeed. I think of the richness of our diversity, the music and food and art and texture of cultures, and I admit to falling silent in despair in the face of hatred to all these things that I love. I have not always been proud of the aggressions of the US–hard to argue that many of the refugees I met suffered in their own countries because of us. But in my life, I was often also encouraged as I saw us change, grow, love.
I want to think we can find this in our hearts again. Our biggest danger comes as we harden souls by torturing children, by pushing away those who need our shelter, by giving even more power to greed.
Twenty
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.
Meaning
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.
Thanksgiving
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.
In Defense of Bureaucracy
I have surprised my own self with the title of this little piece.
I hate when rules bog people down, and make it next-to-impossible to get anything done. I hate rules even more when they seem created to keep people out, rather than to devise a logical way to let them in.
I think about that question of entry, access, everyday. As I said in my last article, I may be feeling optimistic by an extraordinary ability in my present job to gain access to needed paperwork, documents–most often a passport. But it is a powerful thing, a passport, granting permission to enter, to cross, to leave.
My last jobs have not been so easy in this respect. Canadian passports require an extraordinary number of checks, I think–it often seems to surprise people here in the United States, who are not so accustomed to actual reference checks, or very specific photo requirements. A MassHealth application, though, requires a lot of documentation, as does a SNAP application for food stamps. There may well be no reference checks, but the systems in these two institutions are often kept ambiguous by overwhelmed staff who are most likely paid not enough to meet the high standards of customer service that are absolutely obligatory to meet the need well. Are there examinations that TANF employees must pass to have access to a database? I do not think so. Does MassHealth go beyond an initial training period to verify that employees really do understand their responsibilities, as well as their limitations? I am quite sure this is impossible.
And yet, when immersed in the trenches of people in need, we learn a lot. We learn, for example, that recipients of Supplementary Security Income (SSI) through Social Security automatically receive MassHealth Standard. We learn that permanent residents who are entitled to MassHealth nonetheless cannot receive all benefits for five full years–and this can be devastating to individuals with disabilities who are in need of long-term services and supports. We learn that immigrants who do not have green card status may well receive no or very few MassHealth benefits at all… and it is hard not to advise a parent, for example, to apply for permanent residency, for example, for their children who need more than a safety net.
The only problem with this sort of trench-learning is that sometimes we are wrong. Sometimes we have heard enough to make ourselves dangerous, and assume that the understanding we have gained in our own bureaucracy has made us experts in all others. We would do so better to embrace the complexities and build relationships with our expert colleagues in other systems. But this seems a difficult concept to achieve.
Now… I know I seem to be straying from my original defence. Do I like monotonous paperwork, and complicated regulation? Well, no. Hell no. But then, I think about it a bit more… The rules sometimes are complex from the start, due to the legislation that created the program. But really, this is rarely the case. More often, I believe, the system becomes more complicated as we consider the individual within it. We consider just one person who does not fit a certain mold, but still needs something, and we make an exception. Complication #1. Another individual happens into the system, and needs something else. Complication #2. An individual to whom complication #1 applies has other resources that cancel the real need for the program in question: complication #3. And so it goes. A community complains about the high level of X, and we face complication #4, 5, and 6, sometimes all at once. It is easy to create institutions, and we must create them, I believe. But making them fair is even more essential. And this is where the bureaucracy begins. It is a real shame when we do not expect excellence in our public servants’ understanding and administering of this bureaucracy. Perhaps if we had that, these systems would not have such a terrible reputation.
I do believe that most people who work in these systems want to be helpful. In a customer service-oriented environment, “making a difference” is the true motivation for most employees. Hard to say what happens in translation there. A crappy database? Bad management? An utterly impossibly large number of clients to handle with that crappy database? Rules that are created more to micromanage underpaid employees than to give employees tools to help clients? Who knows?
But I think of the last week, for example. A woman who may have been considered quite foreign in appearance arrived at our office requesting assistance with her children’s Canadian passport applications. As I reviewed her documents, I asked her a bit more about her children, and their citizenship, to see if they had other documents for travel. They were Canadians, yes, born there. The parents were not. The parents were, in fact, US citizens who had lived abroad for years. They had adapted the lifestyle and customs of another country, and came back to North America to study, work, research. But both parents were born in the US.
The mother told me that she wanted MassHealth for her children, and was instructed by a MassHealth agent to apply for permanent residency for them. Children of US-born citizens.
The children, in reality, ARE US citizens. They need proof of citizenship, not permanent residency.
The cost of green card applications is enormous. The mother later took my advice to verify her children’s status with an agent at the US Citizenship and Immigration Services office. She learned, first, that her permanent residency application fees would not be refunded. She learned also that she did not have to resubmit paperwork for proof of her children’s US citizenship. Finally, she learned that her children were US citizens–yes! it was true! Upon receipt of their US citizenship certificates, they will be entitled to all privileges as American citizens, and without a five-year wait for full benefits under MassHealth.
In the meanwhile, I encouraged her to contact MassHealth once more. Unfortunately, in so many bureaucracies, the individual in need does not have access to an individual within the system. So, reaching anything more than a badge number or the next available staff is nearly impossible. I suggested that she could try going to a community health center, where an employee could access MassHealth as a professional, and perhaps find something more through that gateway… Another layer here to that system–that virtual gateway accesible to whom?? To hospitals.. to community health centers… to some provider agencies, advocacy agencies. It is a difficult system, fluid, and not smooth to sail. I hope her children can get what they need quickly here. They are entitled to it.
I defend bureaucracy, though I understand why we hate it. We hate it, because it is so hard to navigate through institutions that veer from their frameworks to try to be fair to all. We hate it, quite rightly, because it sometimes IS ridiculous, and more focused on preventing fraud than on the original mission. But try we must, and understand we must.
For, our understanding, in reality, is understanding the very complexity of our humanity, and the responsibilities of our government to provide fair treatment to the human beings who depend on it.
And do not be fooled by notions of self-sufficiency: we ALL depend on our government to do things for us. And we all are only human.
What We Really Need
The last week was a sea of phone calls, visits, and trying to stay organized and focused. I was also trying to finish long-overdue reports. It is an arduous process, namely because the data we collect does not match up with the data that is requested for one particular program’s report. Therefore, instead of hitting a few buttons and spitting out data, I need to go back and do it by reading notes and making tally marks–remembering in the process the details of daily life of every person I saw during the quarter. Sometimes it kind of gets to me.
It is the nature of the job that everyone I see in my work is in some sort of crisis situation. From the hospital (where I often meet people for the first time), they may often go to short-term rehabilitation hospitals (or to nursing homes that fill that function), and then home by the end of my time with them. The best-case scenario, I have to admit, is when a person never wants to talk to me again.
It happens fairly often. An individual is in the midst of catastrophe at one moment, but it is over after a time. Life goes on, and rarely does anyone want to remember any details from the lowest point of a tough spell. When someone says, “No, we are all set,” I am happy about it.
But this is not always the case. Many people simply die. Or sometimes I am unable to reach people for months, but they turn up years later, with more problems, greater financial burdens, and perhaps loss of hope. Other times, they hang on, calling often for some sort of help, hoping that among my “options” is one that will actually remove the barriers that keep them so far from being the people they are, or were. Sometimes there is something that does help. Sometimes I see people I met previously, sitting in a restaurant, laughing with friends–when months earlier they were, say, in a nursing home. This is a good day. Most of the time, the best I can do is listen, and not lie when I say that itwilltaketime or youdonotqualifyforthat or youaredoingallyoucan. My role is limited–I cannot be a companion, or even a friend–as so often becomes quite obvious.
I have been thinking of this quite a lot lately, that going into people’s homes, entering into moments of great change with them… it is so difficult to remain neutral and unattached, but it is all in the name of survival with so many people to see. It is also what we are trained to do, in the name of professionalism. I don’t mean that we are expected not to care. We are just expected to remain objective and fair. It is a tough balance to do that, and then also to remain healthy ourselves.
I have been on the other end of all this support, especially when my boys had in-home services. At times, my family life revolved around whichever therapist was due to show up that day, sometimes (when we were lucky) joining another support person who came everyday. From the receiving end of these sorts of in-home supports, I have signed agreements of understanding that the relationship is limited, and not permanent. People who came to help my kid could not accept an invitation to bring their own families over for a friendly dinner with us later on, no matter how close we felt to them, no matter how well they fit into the fold of our family. It is dramatically difficult to be in this situation, to need someone hands-on for such enormous quantities of time (time that then cannot go toward reaching out to make a new friend, who can actually be a real friend–and isn’t it ironic that everyone keeps telling you to do this!), and then to say goodbye.
It is difficult, as a professional, to sense the intense isolation, the inadequacy of things like transportation, to see the gaps in much-needed assistance, the fear in people’s faces as you close the door behind at the end of the day–and then to walk away, to have to refuse to give that ride, to stop off and run that errand, to spend a little extra time when others–many others!–are waiting for not-en0ugh-help. It is sometimes a guilty feeling, too, to be relieved to get away from the people who try our patience and drain us… They are nearly always lonely, too. The health risks of loneliness have been documented (http://www.ncbi.nlm.nih.gov/pubmed/20652462), but we have yet to figure out a solution to the isolation, other than institutional care. There must be a better way to preserve individual choice, and yet at least support the means for people to sustain friendships and not just caretaking relationships.
So we leave our home visits, and we see the pain in the lack of connections for so many of the individuals we see. Sometimes we feel it ourselves, in our own desire for meaning, but ultimately in our utter inability to supply the one thing that people need the most–which is one another.
Back Off
The referrals continue to pour in from One Care for assessments around long-term support services.
This week I want to focus on the very nature of our “long-term support service” world, and what happens on the ground when it becomes real to the acute medical model. For the last year (and then some) that I have been contemplating this groundbreaking notion of healthcare with the dually-eligible Medicare/Medicaid population, the policy side of the model has carved some notion of what this all means.
The reality is that the One Care program is growing very quickly, and plans are hiring all sorts of people who have not been privy to all the advocacy that preceded implementation. So, once more we are experiencing the pain–and possibility–of merging two very different service worlds (acute care meets the day-to-day grind)
This is hard, but it is excellent. Now we have the exciting opportunity to show, rather than just tell, how health and healthcare itself affects the lives of a real people.
In my second assessment, this is exactly the situation that presented itself, as I met with an individual who had previously received some assistance from my agency. She now has returned to us through a referral for a long-term services and support assessment–the next step as this individual seeks the expanded services, and lack of co-pays, that One Care can provide to her.
Now, this consumer has managed quite well on her own throughout her life, but she does have a noticeable disability. I am around it all the time–used to it in my own family, my friends, my work, my world in general. It is strange to me in other parts of my life to step outside of it all and remember that many people really do not spend a lot of time around people in wheelchairs, or who have amputations, who use assistive technology to communicate, who have anxieties, or whose movements or behaviors are somehow… different. I worked for a long time in translation, and found a similar phenomenon when other people remarked on accents. These are cultural differences, more than anything else. But our acceptance of these cultural differences–or even our expectation of them–can vary widely depending on our experiences.
As I have lived in a world of disability for a long time, I have also seen that there is often a sort of entrepreneurial (a.k.a. do-it-yourself) approach to life that comes from a life of living in a world that does not always meet the exact need. If we think about it, we all do all sorts of strange things to make our way in the world–it’s just that the adaptations of people who look, act and move differently are bound to be different, too. And when I say, “different,” I mean, it may look risky, unsafe, and generally inadvisable. Just like half the things I do at home.
Without going into undue detail about my most recent assessment, I want to note that my biggest recommendation to the caring and well-intentioned medical team is this: Back off! I know this sounds incredibly harsh, but sometimes people’s lives are working much better than we think they are from our objective perch. Sometimes a person does not want 24/7 care–and in fact, that round-the-clock home invasion may actually wind up being draining and intrusive, and detrimental to the person receiving it. Maybe bad things can happen. Maybe they can happen, anyway. Maybe the fact that we can put a service in place does not always mean that we should.
And we especially should not, when a person tells us not to.
Now, this gets us back to the crux of all independent living philosophy, which emphasizes consumer control. But this is it, in the home, on the ground, running. Or rolling, anyway.
And I cannot get far in this conversation without acknowledging the very large elephant that sits in every meeting room whenever we in our disability world meet with the Medical Model. That elephant is that the disability world does not trust the medical world. I suspect that the feeling is mutual.
This said, we want to trust, though. Don’t we? Isn’t this why we are here, at this historic point now? I see so many efforts from the medical world to create medical homes, and to reach out to people who have always been seen through a lens of “complex medical needs”–to see why health does not improve, or what is working well. From the viewpoint of a person with a disability, medical care is necessary, if only to prove a need for accessibility. But it is more. We have a real opportunity now to reinvent what healthcare means, not just to people with disabilities, but to all of us. Living life is the real issue, and facilitating our capacity to have a high quality to that life… We do not need intrusion, but listening, and understanding.
It takes time, and change is hard. It is a relief that everyone wants to try.
Only Anecdotal 