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I am amazed still, everyday, at the full and utter abandonment our society encourages for those who find their lives altered in a single moment. Illness strikes, an accident, and life somehow becomes smaller in some ways. Alone, some face a future that treats them differently, as less human, simply because they need help. Indeed, this need is what defines us perhaps most as human.
Surprisingly, cynicism has not yet caught me. I see a rainbow of sorts, black and white and all shades of gray, a light however dim at the end of the tunnel. I remain astounded by hope and adaptation, and by the goodness of those who do care. I remain shocked by impatient staff who snap at people who have done no wrong, as much as I may see the plight of the underpaid worker. I remain shocked at the efforts of the kindest workers, underpaid, undervalued for the work they do in these most human moments.
We may find our humanity in our own moment of crisis, but perhaps a better measure is in our response to the crises of others. Can we forgive helplessness, or does it push us away at its demands for our assistance? Can we simply stop, listen, or are we ever distracted by the noise of a world that ignores all but the strong?
Listen. The voices are quiet sometimes, impatient themselves at other times. They tell stories, grand stories, of times not so distant, of people and faces that look different now, but still are a part of our own conscience, and of ourselves. Help. A small gesture, perhaps. A knock on the door, an errand run. It is the stuff that makes us alive and beyond appearances richer.
People age, more and more. People live through illnesses that would have killed them in the past. In this we may expect eternal youth and wellness, but in this life, extended, we are challenged, redefined. Challenge our humanity; let us meet the challenge. Forget no one, fear not, do not look away. Remember, this is us. It is our humanity, and it is the best thing we have.
I have written ad nauseum about peonies–so much so that I myself am beginning to tire of the subject. Yes, they do remain my favorite flowers, but… so what? You see, I have come to the conclusion in the past year that… well… Oprah was right.
For anyone who has not read every word I ever wrote, I remarked on the eve of 2008 that Oprah had a little blurb in her magazine about taking care of your own needs, buying your own flowers. I mocked this idea, resolving that I would not give up on the idea of someone who would care for me. How wrong I was.
Now, I was never quite so helpless as to think I could not dream my own dreams; I just wanted to be pampered, quite notably, by someone else. There is a poem or quote about the whole notion of growing our own flowers. I cannot quite remember it off the top of my head, and I am too lazy just now to Google. The idea is that we women–I say women, though it really could be any of us out here–tend to wait around for whatever is tossed at us in life, pawing at whatever happiness gets thrown our way, when we really could take a little more responsibility in the outcome: how much much more fulfilling it might all be if we only speak up. Or if we plant our own gardens.
I was late and lazy this fall, so I did not set out peonies in my yard, but there may be hope for the spring. Yes, this is a new year on its way, and I resolve to cease this hoping and hinting for the heartfelt gift of cut flowers that I forever (sniff) wished that some wonderful someone would ever have the heart to give to me. All those wishes have seemed a recipe for disappointment, or worse: martyrdom.
Now, those of you who did read that peony piece for 2007’s December 31 will undoubtedly note that flowers were never really my main concern. Better than I could express, Kathleen Edwards sings, in “Asking For Flowers” the thought that I have considered in past years: “Asking for flowers/is like asking you to be nice.” Thoughtfulness is a gift we cannot ask for. We are never asking for niceness or flowers, not really; we are asking, in fact, for nothing material at all. We are not asking, we are wishing for someone who loves, respects and cherishes us as we all deserve… indeed, it may be worth wishing for.
In the past year, though, I have wondered how far we get in wishing for anything. A wish may plant a goal in our head, but wishes left in dreams accomplish little, I am sure. And goals themselves can even be a bit too specific, striving to have a certain job, or to win the affections of an certain person. I don’t imagine it does any more good in the long run to “wear your hair just for him” than it does to spend time “wishin’ and hopin’ and thinkin’ and prayin’.” Remember Vertigo? A lot of good a hairstyle did that time. But I digress.
In the end, all the trite advice about finding our own happiness seems to make sense to me now, not such a lonely resignation, after all. I wonder at the trials of the last year, what changed that made me reconsider my long-held conviction in refusing to “give up” my wishes for true love. It was not disappointment, quite; more, it has been the realization that finding a life that fits me is no match for making a life for myself.
Searching for happiness is a strange pursuit. Instead, I make this resolution for the year: I will slow down this year, and just stop sometimes. I will find whatever bliss comes along the way, collect it and care for it. I will live on, despite the sorrows that wash up, let them wash back out.. even as tears transform the appearance of what I thought I knew so well. I will write the words, the gifts, and create beyond my present dreams. And maybe, just maybe, this creation will prove itself to be the deepest sort of love I could honor.
P.S. In this last note for the year, I send my best wishes and farewells to friends who have moved on in their lives. To everyone, I wish you peace in 2009.
It was supposed to be a lovely night. The weather cooperated, the trees, the soft breeze in the late afternoon. We were headed down to Providence for Waterfire, a lovely, sensual spectacle of aromatic wood crackling fire amidst the dark river water, the city, the night.
Last year, I saw it for the first time with friends, with laughter, joy. Romance would have been nice for the next time. Barring that this year, though, the kids had to see this–and wanted to–and we planned our outing. On the first attempt, it rained. Hard. Water. No fire. The next time, yesterday, only my older son was with me for the weekend, and I planned accordingly.
The trip would include a stop at a record store not too far from Providence, the kind of place that makes me swoon a bit. I spent a good deal of my teens and twenties in record stores, after all, and the faint musty scent of cardboard covering vinyl always sends me to a world that I loved so much, seek still despite the antiseptic jewel cases and online experiences that define music more appropriately today. This particular place grabs the scents of a thousand worlds, middle eastern, dust, heaven. We would do that. Then, we would have dinner downtown–my son’s choice–and walk down to the river. It was a perfect day.
For me.
You see, I had merely informed my son of the outing, not invited him. Because he no longer goes away with his sisters every other weekend, my entire life has been altered. I have not pursued my own life, so that I could attend to his. Not a small boy, but not a man, and with his challenges as I have duly noted in these pages, my son needed me, and I was there, by golly.
If you shudder as you think of what was happening here, you are not the only one. Somehow, images of me, old, living with an adult son who shuttles me around did enter into my mind. Yes, my son has bipolar disorder. Yes, he has challenges. Yes, he deserves his own life. And for that matter, I deserve mine. No, this protective stance, now, this brand of mothering/smothering is just not right.
It is fragile, I see, this line between caring and protecting. At twelve, my son was at his most vulnerable, his most depressed, his most lost. Shades drawn, he lay in bed for days, said he saw no point to life, and tried to hide from it. Wake up! Get well! Just act normal! And for all that, he could not, and I do not know why.
A lot of blame goes around when someone suffers from a mental illness. It seems so intentional, so controllable, that it just must be someone’s fault. For years we have tried to change environments, change food, change ourselves, change the rules. For years, we have struggled and disagreed and suffered and screamed and pointed fingers, and for years we prayed for help. In the end, the only thing we could do is simply to stop, breathe, and let it–this mental illness–be real. So, my son slept for nearly a year, prodded along, examined, and ultimately loved and cared for and eased back into life by people who understand him.
So, last night as I left the record store, drove past the exit for downtown Providence, north, toward home, I was mad. I was sad, self-pitying, and most of all, I was afraid. Things have been so much better, even with struggles. My son wants to be out more, to look nice, to do things. Life is not perfect, but my son wants more of it. This is so much more than he could do a year ago. So, here we were, lovely evening, about to enjoy life, damn it!
“Mom, no one goes out with their mom on a Saturday night!” Hmm… sounds strangely… normal. “Mom, I didn’t want to hurt your feelings, but I hate old records. I want my own friends.” Yes, it sounds like a teenager. “You can leave me at home. I’m not a baby.” Maybe he is right.
No, my oldest child is not a baby. He is bigger than I am now, and shows me computer games that he creates somehow, magically. I have no clue about gaming, 3D or otherwise, but he does, and I have to admit, I have come to love Mario. He tells me he wants to do this for a living, and sits with books of code, then comes to show me how he makes a car turn more sharply when its speed increases. Clever, and certainly not coming from me.
Somewhere north of Attleboro, I have calmed enough to listen to my son, and he tells me he wants to have a life, an apartment, a job when he grows up, but he worries that he will not be able. Secluded now, he fears the outside world will send him back to the depths he knew a year ago, and that the judgments will be as harsh as ones he has already known. At the same time, though, he is asking me to trust him.
Near Medway, I feel the night air as the sky turns to a purple glory, and my frustration returns. A beautiful night, gone, wasted. So many nights, so many fears, tears, worries, and here I am, here all alone with nothing of my own to show for it. Sniff sniff. I am crying, and my son points out the moon. “Mom, you’re like that sky now, dark and sad, but we kids are like the moon that loves you. Look how beautiful the sky is.”
And with that, I see not a small child who needs me, but a young man who has a lot to give the world.
Seventh grade French was a good place for the snickers of embarrassment. It was bad enough to be required to speak at all in a class (10% of the grade). In the world of French, words sounded weird, or too much like embarrassing words in English. Imagine being twelve, and being called on to say pu as you learn past participles. Anticipation of the dread word would force hands up early in desperation, just to be called on before pouvoir came up. There were always exceptions, of course, some wise guy who knew that brazenly answering the teacher, intentionally missing the correct way to say u would prompt a fifteen-minute pronunciation exercise. “Étudiants! Say ‘ee.’ Now say ‘oo.’ C’est ça!.” But you had to admit, some of the expressions were downright hilarious, and one of those was what you had to say to the teacher those days when your locker wouldn’t open, and you were still out in the hall when the bell rang: “Je regrette. Je suis en retard.” Back then, that kid in the back of the room would whisper something like, “Oui, tu es un RE-TARD,” and everyone would start laughing. It was funny, right?
I had hoped we had all outgrown these things, and that our world had left that RETARD word and all its nasty connotations behind. It is fine in French, when it is pronounced differently, means something different, and you are truly late, not developmentally DELAYED. Just late. It is not a word I was ever allowed to use in English, even back when I was growing up. I just didn’t say it. I thought it was gone. It was a word I had never heard from my own kids… my daughter asked me last year what it meant. I was happy that day, glad she had not been subjected to the taunting disgrace of comparing a friend’s missteps and mess-ups with a person who has a developmental disability. Here in Massachusetts, the Department of Mental Retardation changed its name, admittedly late in the scheme of things. I remember moving to this state, looking for services for my son, shocked that a progressive state called its department that, and at last, it does not. My own kids were completely aware of the real difficulties their brother had in learning things, his inability to speak, his retardation. But the word itself shocked.
My oldest boy hit middle school, where to my dismay I learned that the word had not been shelved. Oh, no. RETARD is the term for the kids in the support class. Not only that, it is also the general insult from one kid to another, or the complaint about an assignment, or anything a kids does not like (“This is RETARDed!”). It is even a term of understated endearment, as kids call one another RETARD, shooting baskets and missing, acting goofy, but still liking one another all the same.
I banned the word, reminding my older son of his younger brother, and how the word hurts him. So instead, when my older son became clinically depressed and felt friendless, he began to use it on himself.
The word started popping up everywhere–or maybe I just then noticed it–in shopping malls, in school halls, and yes, in movie theaters. Had we regressed this much? I wondered. Have years of special education mandates and inclusion gotten us anywhere? It seemed even worse than when I was growing up!
And later, as my older son learned that his middle school felt they could no longer help him, and he was transferred to a private school that could more appropriately address his mental health issues, he told me that he went to RETARD school, and that was what all the kids who went there called it. My younger son, the one who truly does have an official diagnosis on paper of “severe mental retardation” has never called himself a RETARD. He cannot. No, and it would seem that it is not even an accurate use of the word now. The word seems reserved for kids who are not retarded by diagnosis, but disabled nonetheless by their own self-image. How sad that these kids–my kid!–hate themselves, and how sad that RETARD is the best word that they can find to demonstrate exactly how much.
So, my children, who liked Ben Stiller in “Night at the Museum,” are not going to see his new movie. Nope. I imagine that “Tropic Thunder” really could be just as hilarious as it is hyped up to be, but I also fear that the satire involved–the fun poked at the portrayal of the mentally disabled and African Americans (and even Tom Cruise in a fat suit)–would simply go way above my kids’ head. I will not let my kids laugh at someone imitating the stereotypes that hurt so many people, that perpetuate the habit of calling someone a RETARD.
Of course, I wonder if the satire intended is not going way above a lot of heads. I wonder if the laughs really are at the expense of the intellectually impaired, and not at the finer idea of how horrible it is to use the stereotypes for personal benefit.
The outrage is there for this movie, I know, with statements made by Tim Shriver of the Special Olympics, and boycotts planned along with demonstrations by ARC chapters across the country. I am angry about the pervasive acceptance of discrimination to people with intellectual disabilities. I am angry that the word RETARD is tossed out cavalierly. But I am not surprised that this movie was made. I am not surprised that some people undoubtedly think that watching Ben Stiller act like a RETARD is going to get lots of laughs, and lots of money. I am not the least bit surprised that this pillaging of the self-worth of people with intellectual disabilities would be acceptable, if the slur is even noticed at all. Why would we not accept this, if people with disabilities do not already face discrimination everyday of their lives already?
Reviews of the movie and comments made in reaction to these protests do not encourage me. It seems that there are two sides to this issue that prevail. Either it is completely unacceptable to use the words and stereotypes for any reason, or it is fair game to be mean because political correctness is “so 90s”. Neither, I think, is right.
Indeed, I do wonder, as the protests continue, if this is what Ben Stiller had intended. Reading the reviews, I see that the movie makes fun of the ridiculous measures that actors will go to for that extra edge, that Hollywood will go to for another hit. It seems that there are stereotypes abound in the movie, from the subject matter (Vietnam, complete with apocalyptic helicopter shots and soundtrack) to all the characters. An actor in black face in this day is ridiculous, and yet here we find Robert Downey, Jr. surgically changing his skin color to play an African American. One scene in the trailer finds Downey humming the theme to “The Jeffersons” as an African-American actor questions Downey about his stereotyping of his background and culture. We assume in this scene some understanding that we have learned from “Silver Streak,” where Richard Pryor challenges assumptions himself as he teaches a black-faced Gene Wilder how to act the part. But the RETARD act is still out there, ambiguous. I imagine that no intellectually disabled person offers similar feedback to Stiller, but in so many cases, that person could not.
Some of us become voices for our mentally disabled family members, assuming that we ourselves know best for them. Sometimes we do; we know how to hear unspoken words, and read picture boards or hugs. We want to protect, and we want the people we love to have good lives. We fight for the education, for the medical treatment, for the jobs and the housing, and in the end, we fight just for the right of our family members to be considered as equal human beings. The word RETARD persists, and its associations reach farther.
I wonder, sometimes, in our fight, if we do not do more damage. Our children may be fully included in a classroom, but out of some sense of privacy, or dignity, or legal ramifications, we fail to tell the other children how our children are different, why they behave the way they do, why they talk funny. And they do. We insist on these rights, and yet push for more assistance. And yes, we do have rights, and we do need more help. But we sometimes fail to step back and understand those who have not fought our fight with us. We assume everyone will understand and accept, just because our children are present alongside others, but we speak so much a language of vague acceptance that we sometimes forget to address the specific.
My daughter, exposed as she always has been to disabilities of many sorts, came home in tears one day after a boy cut off a piece of her hair. This came after repeated efforts by adults to address the boys’ impulsivity and distracting behaviors. My daughter was tolerant, and liked this boy, did not think of him as different… and yet, that incident scared her, as it would have with any child. My daughter thought then that he was just mean and unpredictable. The adults in charge apologized–they were wonderful–but I knew the situation all too well. The mother was always trying, balanced between being involved and being overbearing, obvious in her efforts to help her son. The boy himself was full of life, full of questions, quick and bright. Kids may care, if they know, but they may be annoyed if they do not. They probably did not understand how hard it was just for him to sit still with so much else going on. So often we do not understand enough to know how to be a friend, and if the boy continues to annoy his peers, and we continue to avoid the discussion, he will at some point be called a RETARD, too.
My own younger son, nonverbal and fully included in his kindergarten class years ago, pulled hair and grabbed food from other children’s snacks. Yes, his classmates understood something, but he was never truly included, alone in a crowd. Either he was avoided (and this happened more as the year progressed), or he was someone’s “best friend,” not unlike a class pet. In the worst incident, I was shocked to learn–by seeing it in the school newsletter–that my son had thrown the first handful of dirt on the 9/11 tree. What a picture of compassion, my retarded son, sending the school’s tribute to people who lost lives and family, to our inclusive nation. He became the special education mascot, for a school that was not coming anywhere close to meeting his needs. The mental retardation discussion, of course, was off limits for his classmates. And now when he is out, squealing in stores, grabbing, laughing inappropriately, someone may wonder what is wrong with him, but I have never heard anyone call him a RETARD. Maybe people do call him that, but not to our faces. Names can hurt, but they lose their bullying power when the person at whom they are aimed cannot respond. No, the word is rarely used that way now: but we evoke the image of my son and so many others each time we use it to mean “stupid.” After all, what else could be a worse insult?
Most people are not completely insensitive to the humanity of people with intellectual disabilities, but they may not know much about them. They may have a vague sense of the nonverbal outbursts, or the flapping, or the diminutive status assigned to so many, and they have indeed generalized their experience to a Hollywood moment, a Rainman perhaps. Who is to blame people who simply do not know which particular stereotypes are part of the diagnosis, and which are individual traits? The world of disability, of developmental disability in particular, is a world that remains separate, if more common. Self advocates with milder retardation may do well to stand up and tell about their struggles, and demand equal treatment, but the more impaired cannot. Some families are just plain exhausted to do it anymore. And sometimes we thrive on these stereotypes. The rhetoric of retardation is exploited with the best of intentions at times, in advertisements intended to demonstrate compassion, in fundraising efforts, in political runs. A good person includes these people, we say, and we accept the differences. This is the world as it should be… and yet, it is not the world now. Stiller’s performance and use of the word RETARD is sad, perhaps, but not sad because he performed it–indeed, there may well be a greater message here. It is sad because the perceptions and expectations he depicts are true.
If Stiller’s movie is indeed a poke at those who exploit the vulnerabilities and differences of others for personal gain, then maybe Stiller has advanced a conversation about prejudice to a community whose time for human rights has come. If so, rather than condemning the film, we should be engaging in the dialogue it opens, and challenging in our own lives the assumptions we make about people. If so, we should question the use of the word, used not so often directly to the group of people it originally described, as much as to condemn more generally. Why this word? What is the underlying message every time we use it?
We hate the word, but we fear the concept. Even within disability communities, it is not uncommon to defend the intelligence that others just do not see. A person may have autism, but some justification of worth comes from showing some qualities that prove high intelligence. A person with cerebral palsy may have difficulties moving or speaking, but it is all right, if the glimmers of a brilliant mind are only difficult to understand… No, these people are not RETARDs. But strip away all that underlying brainpower. Assume the worst. My child really is retarded. And still I love him, with his huge heart and ready hugs and perseverance when learning is such a struggle. I cannot pretend that beneath his nonverbal exterior he is doing calculus in his sleep. But he is still a person, and unique in the gifts he brings to this earth. He is retarded, but he does not deserve to be reduced to the notion of an unwanted RETARD… and that notion just needs to disappear. Calling someone a RETARD seems easier than admitting, “I cannot understand you.” Calling something RETARDed seems less dangerous than saying, “This makes me mad.” If challenging the stereotypes and our use of them is indeed his intention, Stiller has achieved the Horatian goal to please and to instruct. If, on the other hand, Stiller allows himself simply to be lauded for pretending to be a RETARD in the most crass way possible, and if the best that comes of this movie is for groups of high school boys to imitate Stiller’s performance and feel entitled to abuse people with developmental disabilities because of the example, then not only has Stiller failed in his comedy: we have failed as human beings.
When M. failed to answer the door, her daughter did not find anything strange. It was often that the old woman was napping, or upstairs and not quick to descend. A key turned the door, and all in the house was quiet. Did M. have an appointment she forgot to mention? Had a neighbor called? The youngest daughter opened the garage door to see if the car was still there. It was. And behind it, she found the carefully laid out cot, the empty bottle of sleeping pills. The keys were still in the ignition, but the gas had probably long run out.
The death was a tragedy, we all knew. M. was not so old, after all, in splendid health, we thought. It took a long time for anyone beyond the one daughter and her husband to realize that it was a suicide, and as it was, few people were ever supposed to know. The death by one’s own hands seemed too messy, too questionable, too unsuitable for a reputable family. And yet, the daughter who found her mother cold and inexplicably dead that morning said that she would have done the same thing.
Up to the time I knew of the suicide, M. seemed an amazingly resilient woman. Letters and other documents found after M.’s death hinted at a less than auspicious diagnosis, perhaps from a cardiologist. One thing was certain, though: M. had said many times that she never wanted to be a burden to her children or anyone else. She had enjoyed a high level of independence her whole life. What did life mean to her if she needed assistance?
A suicide must always leave questions unanswered, but the questions it poses reach far beyond the life that is taken. I was surprised to learn that the daughter so fully supported her mother’s actions. Her own pronouncement of similar suicidal intentions if faced with similar potential dependency cited anthropological examples of the practice of “going off to die.”
I was judgmental of the dead woman, hurt. How could someone I loved and admired not let the people who loved her actually care for her when she needed them? What makes life worthwhile? Can we even answer those questions ourselves?
Life can be intolerably painful in so many ways. I cannot imagine what for certain caused M. to end her life, or what I would do in her place. After the suicide, though, the context of the family began to make more sense, and I was out of context. Never being a burden seemed more a selfish thing, never allowing another person to extend a kindness, to serve a meal, to make a bed: not good enough, perhaps? Not thoughtful, but selfish. Always giving, but never receiving: yes! there is a selfishness in that. The familial stoicism was overbearing; pain, heartbreak and illness were impossible to discuss aloud, but were whispered in tributes to the character of those who hid their weaknesses. Bad things simply did not exist in that make-believe world.
Oh, demons exist everywhere, but they become dangerous when they are hiding. Everyone knows about the bear hunt:
“We can’t go over it. We can’t go under it. Oh no! We have to go through it!”*
Go through! Go through! Go through this life. Why hide? I want to love, and I want to rejoice in the real connections we have, the efforts we make, the love we give to one another… and the love we courageously take.
*From Michael Rosen and Helen Oxenbury, We’re Going On a Bear Hunt, 1989.
Last night, walking at night in flip flops, I realized that the breeze felt … not harsh. Delicious. Summer really is here.
I love summer, but for the shuffle. It would be a wonderful season, were it not for the stress of what to do with children who are no longer occupied throughout the school day. With even the once-affordable YMCA camp topping $400 for two weeks of 9-3 fun for just one child, the options for sending the kids off somewhere for the day dwindle quickly.
So, when a meeting at work Friday required my presence, and I found myself stuck without a babysitter, I told the girls to get dressed, made a couple of phone calls, and headed toward my place of employment.
We dragged in a gigantic box full of art supplies, friendship bracelets in the works, a few snacks. The only thing lacking, as far as I knew, was space. Fortunately, a person in the organization that cohabits our building was out for the day, and the girls quickly set up shop in her office.
My boss walked in to see the kids, and was surprisingly ecstatic. His mantra since I started has been, “We are a human service organization,” and true to form, he set them up on his computer while we had our staff meeting. “You think this bothers me?” he asked, as he went on to tell me about his past experiences with children in the workplace.
The girls were real troupers throughout the morning, stayed relatively quiet as they romped around next door to the executive director of the neighboring organization. But around noon, all art projects were officially boring. Next time we’ll bring more to do, maybe find them work to do as they have for me in the past, assembling packets and mailings.
Maybe this all really will work out. I am looking for babysitters, but in the meanwhile, the best I can do is to work partly from home and fit the kids into my whole life—not just the non-professional parts. Who knows? They may even learn something.
Last year, in the throes of childcare inadequacies, a long commute, and impossible transportation costs, I figured out that I was spending more than I was making. I quit. Driving home from the big city in tears at my frustration over the whole situation, I wondered—as I wonder now—why do we do this? Why can we as a nation not figure out a way for families to be a part of our lives instead of a major inconvenience to the work week? Why can schools not be more understanding and accommodating to the needs of parents who have bills to pay, just as teachers do (but on an entirely different schedule)? Why do we have to spend so much money for otherwise unneeded things, just to keep the businesses running? The entire system just seems doomed from the start.
I have agonized over the coming of summer for weeks now. I do not want to lose my job. Summer is here, and I realized last night that I am glad it is warm, glad my kids are home, glad for the beach, and glad for my job, too. And about that… after all that worried me about my impromptu “take the kids to work day”…
After all my fretting, the thing that surprised me the most was that no one really seemed to mind. I worked, accomplished things. I calmed down, at least a little. When I really believe that for once I will not be admonished for having children but not the money to get rid of them, I will calm down a lot.
I am glad the kids can see the work I do, and even more, I am glad that they can see that they are not excluded from it.
I would be the first to admit that the chaos of my life sometimes requires an intervention. I can see where this chaos does not always fit the workday. It upsets those who have chosen to avoid such disruptions in their life, and some might argue that attending to children’s needs is not appropriate while trying to do another job. Sometimes I argue this point quite emphatically to my own children, particularly when I am on the telephone, and it is important, or enjoyable, and I want for them to get their own snack. Sometimes I feel my children are inappropriate, too. Still, tomorrow is Monday, and now, at 1:15 pm on Sunday, I still have not found a babysitter. So, working from home, maybe going in for a half hour to pick up papers and check in while kids wait, I can manage just that right now. And despite the interruptions, I have always managed to do a lot.
Some are restricted simply by the capacity to get to an office, to stay for eight hours away from home. Some have so much to offer to the world, if not for being locked away because they do not fit into the rules of the workplace. Some of us in this situation can do a lot, contribute a lot. Our lives are chaotic; the world is chaotic, and an efficient life simply cannot ignore this fact forever. Instead, imagine that we embrace that chaos, let it in. Maybe it is not as unworkable as we think.
Now is the time for all good men (and women) to come to the aid of …. one another.
I can type pretty fast, but I never really stopped back in high school typing class to think of what some words really mean, much though they may have been tapped into my brain. Back in those days, civics lessons were an enormous bore. History was only abstract dates and places, even with animated discussions from fine teachers.
The problem, I think, was the abstraction from the causes we were discussing, and also the idea that engaging my government could be bad manners. If I were to learn it all again, though, I would hope it could be more real… I would want to meet the actual people who challenge their government to try to make things better in the world and let them tell me why they do it.
I watched a lot of people doing just that yesterday, at a Statehouse rally for a little piece of legislation that could make a big difference for people who make a difference every day.
Senate Bill 65 is a bill that would change the way that agencies that provide human services can get paid.
For an outsider to this whole complicated world of human services, this whole issue seems so abstract. It seems so easy to imagine mismanaged agencies, high-paid executives bleeding their workers, or irresponsibility of the state government that made the contracts. Taxes are high enough. Social service costs are out of control. Government is out of control.
Well, some of that is undoubtedly true. Like many of the people who have responded with letters and comments to other articles on the issue, I am none too happy about paying for the Big Dig, either. I wonder about the efficiency of government. I am exasperated by the services offered that often do not match the needs of my own kids when it comes to human services. And yet, in this imperfect system, I still see a dream. I still see what our government should do for us, particularly for those of us who need help the most.
Now, if you are one of the employees earning around $10 an hour to provide direct care to a person who needs the help, the abstraction around the issue completely disappears, as you struggle to make it while doing one of the toughest jobs you could ever love. If you are trying to manage one of the human service agencies, budget reviews must bring you to tears. How do you do it? And how does it hurt to cut first the desired things, then the needed things, then still not know how to juggle it all, trying to figure out how to pay for rising fuel costs, rising health insurance costs, the costs of absolutely everything. Most of us have gotten a raise since 1987.
Two years ago, we saw similar alarm from direct-care workers with the Personal Care Attendant Workforce bill. This legislation was different: aimed at a state program where people with disabilities directly hire the people who work with them—at a rate determined by MassHealth (Medicaid). Personal care attendants struggle still with the $10.84 rate that has never changed as long as my son was in the program. The bill did pass. Our legislature (if not our last governor) did recognize that people who care for people need to earn a decent wage, have benefits, such as health insurance. They recognized that the people who hire personal care attendants need to have a better way to find them, and to train them. These facts were recognized, but the Personal Care Workforce Act remains an unfunded mandate. (That is next week’s rally.) A labor union is still pushing, and workers elected to join that union. A workforce committee meets on a regular basis, though I no longer go to their meetings. But damn it, it is still hard to find personal care attendants! I know. I have tried.
Senate Bill 65 should pass, too. It is only fair for agencies to be allowed to negotiate fair contracts based on cost of living, and not a pre-set rate from the days when we were humming along to “Walk Like an Egyptian.” The Simpsons was not even a regular series back then! The Berlin Wall was still standing, and gas was under a buck a gallon… but I digress. We need support from legislators, and recognition of the dire straits that the human service industry is in.
Still, saying that agencies need more funding to survive is so obvious, but somehow, finding that money is not obvious at all.
I have lived it firsthand, experienced the effects of shortages in services available to people with disabilities. My own family has been waitlisted, had services removed, watched as no services were available, let alone appropriate services. I have lost a child in the process, as I gave up custody in the wake of insufficient services in my home—a loving home that worked all right when we had the help we needed.
I look at the future for my kids, and for others around me. I look at people who are getting older, at families devastated by trauma of various sorts, at nonverbal adults, at teens with mental health issues who are bounced around various systems without the help they really need. How much does all that end up costing society?
What kind of people are we just to turn away from these issues? So many people do want to help and do care. So few people can do it for very long. So many agencies drop services, or are forced to draw the line with the numbers of people who can receive services.
Senate Bill 65 can keep agencies from collapsing. We absolutely have to keep the human service industry from falling.
But then what? It is up to us all to fight, to pay more, to have bad manners perhaps, to demand better services, services for more people. We have a moral responsibility to value the more vulnerable among us… to help them be strong, to help our society to be stronger, if only with a little help.
My dad always knew right where the heating pad was. It was gloriously soft, like felt, as I remember from the odd time that I had to use it when I was younger.
My dad used to complain about his back, which in my non-empathetic youth, I was convinced was overplayed a tad bit, along with all discussions of various ailments around the kitchen table when members of his family visited.
Where did he hurt his back first? In the Army? working as a carpenter? somewhere… Now I have the unfortunate understanding of just how painful these sorts of things can be. My first injury a few years ago involved a two-door rental car, a move scheduled less than a month away, and a large, special needs child with a skin rash. I could barely walk after I overdid whatever I did, and was convinced that I was dying. I must have inherited that knack for dramatically painful medical conditions… or at least describing them in those terms.
Or maybe it was just bad luck. Every once in a while, the back flares up again, and luck had it that this happened yesterday, on a lovely day that I had planned to walk, to absorb the city and the excitement. Instead, I woke up after not enough sleep, took Advil and went back to bed.
The Advil helped a little. A few hours later, I awoke and looked around the quiet house, amazed to be only sore, and not in immediate pain. I flipped on an R&B radio show that always makes me happy, and drank some tea on my porch. It is not what I had planned for the day, but maybe it is what I needed.
Today I woke up, a little sad to feel left behind and forgotten, but with a new frame of mind. A friend came over to help me repair a broken window, and I was in heaven. Now I know how to do it myself! A feat accomplished with joy, conversation, a nice dinner, and time with a good friend… a fine day indeed.
Sometimes life throws us disappointments, upsets plans, but perhaps for reasons we understand only later. Maybe these are our clearest moments: quiet times pared down to the most simple things, a laugh, a kind word, and a thoughtful gesture. And we realize that these are the things that matter the most.
