Only Anecdotal

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Behind the Scenes

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This is not the post I had intended to write today.

I did not imagine when I was thinking through my article on the drive to work this morning that I would leave work to learn that Trump had reversed his policy of jailing immigrant children. But he did. And thank goodness for that.

Goodness. It is a word that I think a lot about. I think about it lately in the face of pure evil.

Evil. Sadly enough, it is a word that I have thought about far too often in the last two years. Thinking back, I felt a very real optimism in the 2016 election about two years ago. It unraveled all too quickly, though, and even in the face of that optimism, I saw the increasing fervor in the voices of hatred.

In the last weeks I have watched, in horror, as multitudes of asylum-seeking families were torn apart at the southern borders, I have also watched the defenders of this practice. As wrenching as the scenes of crying children have been to me, I am chilled to the core by the lack of compassion in so many who defended the family separation practice.

Bible-quoting Jeff Sessions of course wants the wall as much as his boss, and claims that they don’t want to separate families. But they have to, of course, to keep us safe. And the kids are all right. DHS’s head, Kirstjen Nielsen claims that only Congress can change things, and the kids are all right. Sarah Huckabee Sanders explained everything and explained nothing, as she always does. Fearless Leader himself blamed the Democrats. And Fox News was a great vehicle for spreading the gospel of hate, as they always do. Stephen Miller, a haunting soulless image who was unknown to me until recently, was apparently the mastermind behind this whole policy. I imagine there are masterminds out there who are finally coming into their prime, finding a place to voice their nationalistic sentiments and enact their horrifying dreams of supremacy.

A long time ago, I took my baby son to his pediatrician to find out why he was not doing all the things he was supposed to be doing–according to “What to Expect ….”

The doctor told me that he was “delayed.” But I was not to worry, because my son could still live with me.

I had never considered that my son would ever be taken from me, but the notion stuck with me when a developmental pediatrician came to our home and suggested that I apply for the Medicaid Katie Beckett waiver for my son.

Now, the Katie Beckett waiver is an amazing thing: it was a waiver designed to help families of children with disabilities to keep their kids at home. But I didn’t quite understand the world of waivers back then, and was convinced that by applying for Medicaid, I would also be putting my son’s name on a list of disabled kids.

The doctor reassured me that no harm could come of applying for assistance. Those days of lists and persecution were in the past, he said, those days when people were labeled “different” and sent away, or worse. We all do remember history to know that these times did exist, of course. I’m not sure that a return to those times was quite my fear, but I did apply for Medicaid for my son, and he quickly was approved for the waiver. And it helped him.

But it is a strange thing. My son is no longer a child, but he is on a list, probably a lot of lists. I do think about it sometimes, though he does not appear in immediate danger.

I am not sure what makes my severely disabled son less likely a target for caging than a migrant child, except that he is white. But as we watch the rights of immigrants erode, we must also notice the stories of benefits dwindling for people in need of all sorts. We exclude, and we punish the weak in our great nation.

Watch the defenders of evil. I try to understand the people who were fed up with hearing unheard and unhelped, and as they explain themselves, I think it is easier to look for blame in a face that looks different than to blame ourselves for the mess we have created in a rich country that cannot manage to feed and house everyone. I hear that hatred, but while I think that it is terrible, I don’t think that this fear is evil. Promoting the fear is what is evil. Trump may well have ended the tears of children, at least for now, but keep watching what happens behind the scenes while our leader makes noise and throws twitter tantrums. Oh, to be sure, there will be images of some joyful reunited families–the midterm elections are upon us, after all. And there will be plenty of families who face a tough battle to be reunited (one father has killed himself after being separated from his child, so no resolution there). There will be family camps, then, right along with proclamations of wanting the best for our citizens, and keeping the borders safe. But I won’t be fooled. The masterminds are hard at work while we watch the circus, and they are not working for love.

Written by Only Anecdotal

20 Jun 2018 at 6:27pm

Posted in advocacy, disability

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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.

Written by Only Anecdotal

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.

 

 

Written by Only Anecdotal

15 May 2016 at 9:03pm

Back Off

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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.

Written by Only Anecdotal

3 Feb 2014 at 7:32pm

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.

Written by Only Anecdotal

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.

Written by Only Anecdotal

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…

Written by Only Anecdotal

25 Mar 2013 at 10:00pm