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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.
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.
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.
It was early enough for Target not to be too busy, I found a good parking spot (well, the handicapped placard does help), and all five of us were in a great mood. We were buying some promised new toys for the yard, charcoal, marshmallows, and a few other necessities for the first really warm weekend, the beginning to April vacation.
My son was walking as we entered the store, but we had brought the stroller, just in case, as I always do now in any place that is big and has fluorescent lighting. He strutted in, looked around, then looked back at me and climbed in the chair. We went on our way.
It really was a good day, with everyone in a fantastic frame of mind. Then, something happened. It was not a mean thing, or even a thoughtlessly cruel thing. It even surprises me that I am still thinking about it. Still…
We were in the outdoor toy section when a man (maybe around my age) and his son (probably around five years old) came down the aisle. I saw the boy look at my eleven-year-old son in the stroller, just about to ask the inevitable question, and his dad took his hand and guided him quickly away from us.
Later, looking for marshmallows, we saw them again. By then, my son was bouncing in the chair, laughing, as he often does when he is either excited or overstimulated (and big box stores nearly always do it). He was all right, though, but I could see the boy’s concern. The boy tugged on his dad’s jacket. His dad kept shooshing him, as he quickly navigated his son and himself out of our path.
I noticed, as we made our way to the cash registers, that the dad was staring back at us from a farther line.
Was it that bad?
Well, I sometimes wonder. It was still a glorious day, the type you know was good when night finally comes, and the kids are whispering in the dark, then are suddenly quiet because they are too tired to stay awake longer; when you, adult, fall into bed at night all sore and smiling and snuggling into a bathrobe, warm and exhausted, too, after the kids have fallen asleep; when the laundry basket is full of clothes that are absolutely, positively, filthy and smoky, and covered in grass stains. We had that kind of a day. We went home from Target, turned the music up, laughed, blew bubbles in the yard and played giant Frisbee games. Actually, it was my older son who was having the tougher day, trying to figure out where he could find enough wheels, wood, and a motor to build a go-kart—and frustrated when I was less than encouraging about that particular plan. It was a fine day, a good day, a typical day for nearly all the families around us. And still, that father’s stare stuck with me.
I wonder, sometimes, does it really seem that bad, this life? When other people see an eleven-year-old boy retreating to a stroller (didn’t know they made them his size?) to make it through a store, but unable to tell anyone about it because he can’t talk… when they see the meltdowns, or actually hear of the difficulties, does it really seem that bad? Do the non-staring people feel that way, too?
Sometimes, it’s been the opposite that has stuck with me: the overly helpful people, the ones who are trying, who still don’t know what to do. But they do try; they don’t run away. There are the complete opposite, the ones who look for that moment for their own advantage—a Kodak moment, a charitable act, a momentary kindness that makes a statement but is not so kind—those who seek the shunned, emphasize the difference in some hope of making themselves seem better. I don’t mean people who really help, who really care—only those who think that they seem like good people if they pretend to. That is perhaps the worst.
I realize the difficulties in knowing how to act around a kid with disabilities, much like moving to a new country. What are the customs? What did they say, and did that gesture mean something? Are these people nice? It’s a learning experience, emotional, not always quite right. It’s not within the comfort zone, and yet, it does not have the same thrills of living life that is conventionally adventurous… at least, at first.
I have told the tales of trying to meet these kids’ needs, of being frustrated through various agencies’ incapacities to do the right things, or to be funded enough to do them. I have told of the heartbreaks when tough decisions have to be made, when things fall apart. But somewhere in there, I hope I have conveyed the many joys. If I have failed to express those enough, maybe I should try harder. I fear I have frightened too many people.
Challenging, yes, it is. But isn’t life that way for us all? Not unhappy, not bad, though! The joy of yesterday—that simple day—warms my heart, thrills me. It is difficult to explain why. When things are so wonderful, do we ever think to wonder why?
We were happy, and I suppose that is why the father’s stare stuck with me. The stare, I believe, was one of confusion, one of fear, one of pity. I have indeed seen the look before, even heard the words that tend to go with it. And yet, I rarely have the right response to it, or even know how to deliver that response if I have it.
I sometimes wish for a more forgiving world, for one that didn’t mind difference, for a world where the richness of life accepts the difficult parts, where we can acknowledge that the best things are never simple, and where the fear of facing my family did not prevent people from wanting to get to know any one of us individually.
My family really is like any other. It’s just not so obvious.
A few evenings ago, I heard a story—a funny one, as it was told—about a teenage boy’s mounting anxiety when faced with orders for a bloodletting… er, blood drawing. It could have been my kid.
Anyway, you all know how that routine goes. If you can go directly to the lab, it’s a lucky day! If your doctor is particularly kind and has the nurses in the office do it right then and there, the sun shines a special beam and birds sing. If, however, you have to go to the hospital, be prepared to wait, register, get the little bracelet put on after answering questions that range from your name and insurance company (what they really want to know) to what your preferred religion is. You sign swearing that you understand HIPAA (does anyone understand HIPAA?), and that you’ll pay your bill when all is said and done. They tell you that you are free to go to the lab, usually down several confusingly marked corridors. Then, at the lab, you wait again, probably with a number. If it’s a big hospital on a busy day, you may wait for hours.
Now, try doing that with an anxious kid. No, I don’t mean one who keeps tugging at you saying he’s bored and doesn’t want to be there. I mean one who is in real danger of being admitted because of the stress the whole ordeal is causing. You’ll know by the sweat, then the clammy cold hands and the quick breathing. Add some communication challenges, a little obsession, a little compulsion, and the entire waiting room is apt to have a meltdown right there with you.
So, as I heard the story of one boy’s total and complete breakdown through this ordeal, a thought came to mind. As difficult as the world is to navigate from a wheelchair, most people have some vague notion that places like hospital labs are supposed to be accessible to people who use them. If a lab is up any stairs, there is a ramp, or an elevator. If the rules say that patients have to sit in those chairs with the fold down tables attached so the phlebotomists can find veins more easily, the rules may bend a little so that the patient doesn’t have to move from a wheelchair. Accommodations can be made, and in fact, they have to be made, according to the Americans with Disabilities Act. It’s far from perfect, and it’s true that some people still don’t get it, but most people do at least acknowledge that the world is difficult for anyone who has a physical disability.
So why can’t we accommodate people who experience other sorts of disabilities? Waiting for a potentially painful procedure is traumatic for someone with severe, diagnosed anxiety. Isn’t this an accessibility issue, too?
Walt Disney World, I hear, has a special entrance to rides for kids with special needs, so they don’t have to wait through long lines that would make it impossible for them to be there otherwise. If you have ever waited in a line with a child who has autism, this service makes so much sense. It’s not favoritism anymore than a ramp is. It really is an issue of accessibility, and it really is the law. Amazing that Disney gets it, but a hospital doesn’t.
And besides, when someone is obviously struggling a lot, how much nicer would the world be if we could just bend rules enough—even when it’s not a legal matter—and think beyond our own experiences? How much better off would we all be, if only we could try to be kind just a little more often?
When my son’s probation officer called back, he said that he had also had trouble getting appropriate responses from any of the state agencies that would normally take responsibility for providing some support…
… Oh. I didn’t realize you were reading. I was just talking about my son. Well, you saw what and whom I was talking about. I am a bit embarrassed now that you know about the probation officer, all this mess.
But really, you don’t know. It seems that in years past, my son would have been called a Stubborn Child. Now he is simply a Child In Need of Services, but he still had to go to court for it. The school asked the truant officer for our town to file a CHINS, so we had our day in juvenile court.
Now, to explain a little, “CHINS” really does stand for “Child In Need of Services.” It is a somewhat euphemistic idea created in 1973 when people decided that the “Stubborn Child Law” was not quite appropriate. Indeed. The Stubborn Child Law goes back to olden days, really olden days:
“If a man have a stubborn or rebellious son, of sufficient years and understanding (viz.) sixteen years of age, which will not obey the voice of his Father, or the voice of his Mother, and that when they have chastened him will not harken unto them: then shall his Father and Mother being his natural parents, lay hold on him and bring him to the Magistrates assembled in Court and testify unto them, that their son is stubborn and rebellious and will not obey their voice and chastisement, but lives in sundry notorious crimes, such a son shall be put to death” (Statutes of the Massachusetts Bay Colony, 1646).
Drastic? I’ll say. The law as it evolved included children younger than sixteen, but to be fair, none of them was put to death. Still a little scary. The CHINS, unlike the Stubborn Child Law, does not apply to children over the age of sixteen, nor does it recommend death, but it is still a court thing. It is sometimes filed by parents in a last-ditch effort to keep an out-of-control kid safe. I always thought of the kids who were staying out all night, bringing home dangerous friends, doing drugs… Truancy fits in there. And the idea, I believe, in changing the Stubborn Child Law was to address the causes of the behavior and get kids help. But when someone has identified that children need services, is the Department of Youth Services—DYS is another name for the juvenile correction…er, kiddy jail… system—really the right place to go to ask for help?
Our little foray into lawlessness began after my son’s hospital stay. In November of last year, just a few days before Thanksgiving, my son told his therapist that he thought life was worthless. So, after nine grueling hours in the middle of a busy emergency room on a Friday night, my son began his two-week stay in the hospital’s locked “child development” area, a.k.a., pediatric psych ward.
I suppose the stay was intended to help him–it should have–but in the end my son came home with new medication that did not end up making anything better, the knowledge that his new psychiatrist never even cared enough to return phone calls while my son was in the hospital (we stopped seeing him soon after), no more support services, and a new-found feeling of failure at real life that seemed to take over. Even as counselors, and school staff, and I expressed dismay at the inattention, appropriate agencies that were geared to give my son that post-hospital help simply pointed fingers at one another, saying it was not their territory. His therapist took another job, and my son was not reassigned to a new clinician throughout the holidays, perhaps the hardest time of year for him. This negligence is not what I understand is supposed to happen, but it did, and the hospital itself did not exactly provide much guidance in the ways of what to do once my son was back at home and in the community.
What the hospital did provide, to the school if not to me, was an indication that my son would probably be tardy fairly often. There were no suggestions for how he should get to school if he missed the bus, or how I should work on those days, or how I should even manage to maintain our lives, but the hospital did tell the school that it would remain difficult for him to get up in the mornings. They did not say my son should not go to school, but after a while that is what started to happen, especially when he was faced with the notion of his classmates noticing him walking into school late.
No positive reinforcement seemed stronger than the pull to stay in bed. The oft recommended “get out of bed NOW, or else…” strategy was a total flop, resulting only in my own exhaustion and a lot of angry exchanges. The most draconian consequences I could conjure up would not push my son out of bed on those days, and on top of it, those consequences seemed uselessly cruel. After one call from the truant officer, who asked to talk to my son and then told him to get to school, or he’d take him to court, I drove the car stoically to the school, let my son out at the door, and promptly broke down in tears. My son was not budging from his bed after twelve or more hours of sleep. He was cranky when he was awake, and for all intents and purposes, no one who could really offer the level of support he needed really seemed to give a damn.
The school was just being a school, and actually, a very nice one. At a meeting, they shocked me by recommending an out-of-district placement—something that rarely happens in the land of special education without a fight. I was not sure–did we need to go to this step? The school also informed me that they would be filing the CHINS. Sure enough, the following Monday, an appointment notice arrived in the mail from the juvenile court. A friend offered her research results: I could lose my parental rights! (Amazing what you can find on the internet.) I went without sleep that week, even as I tried to stay calm. The Friday court date arrived.
The juvenile court is not far from my house—I must have driven past it hundreds of times. The complex it is in houses another agency that no one ever wants to need: the Department of Transitional Assistance (welfare). Nestled in around a pond, the property used to be dotted with Victorian cottages for vacationers, a boat dock nearby. These days, there is a dump across the street. The building itself is nondescript: a strip mall of human tragedy.
Fortunately, my son’s probation officer was pleasant–the school had called ahead to tell him that my son was a “good kid”. He kept the whole affair informal. I did not lose my parental rights; on the contrary, he asked me what I wanted for my son. He also had the words that have motivated my son to go to school on the worst of days: “Go to school. It’s the law. If you break that law, you have to go before the judge, and you don’t want that. You don’t want to go before the judge: he doesn’t have a heart.” Extreme words, perhaps exaggerated, too–surely some judges have hearts–but I think the probation officer wanted to help my son. It’s nice to know sometimes that somebody cares.
So, we remain, still in limbo, still waiting for the next step, the next school, the right place. We have no answers, and even a probation officer cannot get state agencies to respond. But then, why should they respond to our family when our hardships are not so visibly clear? In the headlines just yesterday, a state agency ignores the obvious: a seven-year-old boy tells a caseworker that his mother’s boyfriend has burned him, and the caseworker ignores it…
Or perhaps the caseworker did not ignore the red flag. Perhaps she (it nearly always seems to be a she) went home every night wondering why she makes the suggestions that go ignored higher up. Perhaps she wonders why she bothers going into work everyday when budgets do not allow the things that would really help, much less prevention, when caseloads are overwhelming, when the next one always looks worse. Perhaps she burned out months ago, and is holding on to her own sanity for dear life.
Why does a family with a bipolar kid on the edge deserve any better treatment?
There are many reasons why we all deserve better treatment.
For one, pointing to a problem and then walking away is tantamount to saying that the problem is not that important—or worse, that it is not a problem. Victims become at greater risk with the attention; walking away is setting them up for blame… and more abuse, or worse. Families trying to help children with mental illnesses already suffer from systemic abuse, calls for help unanswered, blame transferred to parents. Children with behavioral challenges, quiet or disorderly, go without services, ignored, made outsiders—outlaws—as they become indoctrinated into a system that hardens them and makes them expect less from life, less from us, and less from themselves.
Do we mean to push people out, by deeming them dangerous? I was astounded in the court building at the number of posted reminders of the ADA, the Americans with Disabilities Act. Yes, we were to remember that we deserve access, equal access, to the court, regardless of our disabilities. But one question came up continually.
“the continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous, and costs the United States billions of dollars in unnecessary expenses resulting from dependency and nonproductivity” (Americans With Disabilities Act, 1990, Title 42, Ch. 26, Sec 12101(a)).
We may be guaranteed access, but what if we do not belong in court to begin with? What if the crimes we are charged with are not crimes? What if crime itself is determined within a system of bias?
It is estimated that sixteen percent of the nation’s inmates have an identified mental illness. There are certainly people among those sixteen percent who are undeniably dangerous, but I wonder if prison prepares them for any future, acknowledges their illness, or if it just keeps them out of our view, still dangerous–dangerous mostly to themselves. That day, sitting in court with a kid—a smart, sensitive kid—whose depression shut him in, literally attached him to his bed, I could not help wondering how many others started their careers in the criminal justice system just like this.
We all deserve better.
The last straw is when we run out of milk. No cereal. No healthy teeth and bones. No decaf lattes from that beautiful Expobar sitting in my kitchen.
So, having managed to get my son on the school bus for the fifth time since his hospital stay, I celebrated by heading to the grocery store.
Now, before I continue on down to the corner market, a bit of an aside. I hesitate, although only slightly, in revealing this much here, of all places. I mean, I have to wonder if there is a feeling of shock and dismay—or worse, pity—at the idea that I cannot get my older son to go to school many days because of his mental health issues. He is smart (which is how he still managed to get on the honor roll), funny, and not noticeably impaired when things are in the right balance… Still, I have found it much more difficult to bring myself to talk about him than it is about his brother, whose disability is developmental, intellectual, obvious—and not stigmatized in nearly the same way. Ah, but in not talking about the bipolar stuff, I stigmatize, too.
Stigma is a term that fits well when you consider the Latin/Greek origin: “tattoo indicating slave or criminal status”. I wish I could say that things have changed much in our world today. On the contrary, I find that when my son with developmental disabilities missed nearly thirty days of school a few years ago, it was at the insistence of the school staff that he stay home because they could not do anything with him. For my son with mental health issues, though, numerous absences (despite the school’s patience and help) may quickly become a legal matter, a crime… like so many other things. A psychiatric admission to the hospital is nearly impossible without entrance through the emergency room, and for so many, a call to 911 following an act of violence, self-injury, vandalism. A crime… but in these cases, a desperate plea for help, an acute illness demonstrated in frightening ways. What more can we do?
There is attention to this problem, but also resistance. Many posts ago, I mentioned a neighborhood’s resistance to a group home for adults with a Prader-Willi syndrome, more in the realm of developmental disability. What I learned later is that the owner of the house is a group that also provides homes and services to adults with other disabilities, including mental health issues. If some neighbors were only wary about any sort of developmental group home inhabiting the nearby real estate, they were positively aghast at the thought of recovering substance abusers or mentally ill individuals living next door. Again, the stigma, and in a world where in normal houses live the teenager who parties incessantly, the aunt who has lavish parties for weeks then retreats for even longer, the many among us who hide our afflictions, for fear of being different, of being noticed, of being shunned… And is it any wonder, when we ourselves fear those who are considered different?
If we do leave the denial, if we have to, finding help is not easy. I know this well, after repeated calls to try to restore services lost in a struggle—services not so easy to get in the first place. Calls to overburdened state agencies go unanswered, even as the calls turn to letters and move up the chain of command. It takes calling a representative and a commissioner, and then, for what? Psychiatrists who prescribe and then never return phone calls for day after day; others who are afraid to take on patients who present too great a risk—a liability; others who do not even take insurance. And then again, a few gems among them. But while we are on waiting lists to see the gems, in my frustration, I wonder again if omega 3s and martial arts and better feng shui could really be a cure-all instead of all this nonsense.
I go through this all in my head, and then turn to the things in my car, the less cold breeze in the parking lot that takes me back to summer breezes I remember so fondly. My car has made its way to the Market Basket, and life is good.
I really do enjoy my trips to the Market Basket. For one thing, it is far cheaper than the supermarket that is closest to my home. For another, I enjoy seeing so many different people. On most trips, I hear little English, but today’s trip was noticeably populated by older couples, most of whom did speak English, and most of whom were quite friendly, although I did notice a few strange looks when I turned around the coffee aisle just unable not to sing along with Andy Gibb.
You know, I still cannot get the song out of my head, and also cannot help thinking of another way to do it. I pondered that this evening, too, again imagining something on the back of a piano, but alas, a torch singer I still am not. “I Just Want To Be Your Everything” is a great song for shopping, though, and it really hit me as I found myself wanting to chant “Come On Eileen, too-loo rye-aye,” that supermarket music has certainly changed since I used to drag along with my mom through Vince’s IGA in Yorkshire Plaza, right on the corner of Laclede Station and Watson Road (which is really Route 66).
Grocery-store music then was characterized by rearranged Beatles melodies, even though most of the ones chosen barely needed it (“Yesterday,” “The Long and Winding Road”), and other pop songs that were rendered nearly unrecognizable by the arrangements… until in a sickening moment in the dairy section you finally understood that it really was a string version of “Havin’ My Baby.” Trips to the store are different now, and maybe a bit more disturbing.
Still, I am fascinated by the selection of tropical produce: chayote, malanga, batata. I like paying $.99/pound for apples instead of $1.49. I love being there with all the boxes moving around the aisles, and the woman in the electric cart asking me if I could reach and grab a can of Folgers off the top shelf, and the man who is telling the butcher not to hand him that hamburg because he’s on a fixed income and that he just doesn’t know about Hillary, and the woman telling her daughter, “Mira, ven aqui,” as the little girl sheepishly puts a box of vanilla wafers back on the shelf.
These grocery adventures are pleasant in themselves, but the soundtrack is part of the experience. Still, although I enjoy the tunes, I’m not really supposed to acknowledge that I actually noticed them. The music has a more insidious purpose that is really unmentionable. I realize this is a fact. The whole brainwashing thing, innocuous enough, it would seem, because it is everywhere. In the midst of it, though, I realized that I was barely noticing at all how happy I was that my kid actually left the house without a fight, and gave me a hug before heading down the street to his school bus stop, on time, and that the day was warm, and the other fifty thousand things that were going on right in front of me in that store because it had a soundtrack that kept me in a certain frame of mind, somewhere in the late 1970s to mid ‘80s, and made me not notice so much else. Well, Muzak’s philosophy is for me to ponder later, or to leave perhaps to the New Yorker, where it has been pondered already (by David Owen, “The Soundtrack to your Life,” 4/10/06).
It does make me think about comfort level, though. How does it feel to go into somewhere with so many people, all ages, nationalities, abilities, all collected there to hunt down the foods that celebrate our differences.. and yet to hear a soundtrack of my young adult life in the Midwest? I wonder.. what if they added a few different songs, something different, from another country, something I have never heard, just thrown in? something else… or perhaps, just no music. Just real people and real food, together. What a concept.
I used to leave my house in northern Vermont with some combination of trepidation (would my family survive without me?) and anticipation (hot damn! I’m headed to the big city!) as I headed out across the countryside toward Montreal. The first time I went, I took a bus, enjoying the tales and tribulations of the rave organizer who sat next to me. I decided the next year that it was much more satisfying to have the option to stop along the way, and pile the car full of treasures that at the time were usually no problem to drag across the border duty free. I managed to fill my farmhouse with mod furnishings from Caban, electronic music, exotic vegetables and enough elaborate pastries to extend the stay at least a few extra days in feeling, if not in fact.
It was a getaway for me, to be sure, and I craved the city with the passion of Lisa on Green Acres (sans Hungarian accent), like a smoker trying to quit. “Bloom where you’re planted,” my neighbor from the dairy farm across the street told me. Oh, I tried. I tried. And I did sometimes, managed a few nice flowers from time to time. I looked across the street at the Holsteins and her business sign, “The Beauty Hut,” and the grey hills and the sky, and I tried.
And then, an hour into the trip, I could feel my heart race—literally race—as I drove through the fields and saw the skyscrapers in the distance. I loved the way that the city just sprang up like that, somehow adding to the excitement of it all, like Oz. The traffic picked up there, adding car after car, a few crotch rockets zooming their riders off to an inevitable early grave. And I would finally reach it, le Pont Champlain, there at last, over, then off the bridge, driving fast. Yee haw! (or something a bit more sophisticated than that).
I loved racing down the hill on University, downtown, to Rene-Levesque, the thrill of being back where it was busy. It’s hard to imagine the contrast from where I lived, where the first traffic light was ten miles away.
For all the luxury of time, bookstores, hair coloring (it was red then), and room service, the trips also gave me perspective. Vermont was beautiful, glorious. I was involved in the community, advocated for my kids constantly, knew everyone. I loved that, but I also always knew that at heart, I was a flatlander. Not my fault, really—I just didn’t grow up there. And I had this kid who needed so much. Once, in a grocery store, a man saw me pushing him and his sister through the store, and thought to share his thoughts with me.
“I hope you don’t plan to have more of them,” he said. I was taken aback. The man didn’t even know that my older boy was in school then. For all the time that I had faced the realities of my son’s disabilities, I had honestly never heard anyone actually voice such an opinion to me directly.
“These kids cost everyone else a lot of money,” he informed me. I found myself dumbstruck, then hostile, thinking of the man’s own cost to society. He was older, certainly had health concerns that were undoubtedly some cost to Medicare. But in spite of that, the man did deserve those benefits. I could not think of a thing to say, so I just told him that I loved all my kids, and walked on.
I checked out, pushed my groceries out to the car, helped my little girl and my three-year-old son out of the carriage. My daughter tried to climb out herself, but my son did not. He did not try to walk. In fact, at that point, he was unable to do that, but was getting closer to that developmental milestone with the help of over two years of physical and occupational therapy. My boy smiled, and let me load him into his car seat, placid, trusting. The man from the store was standing behind me, and I stiffened.
“I’m sorry,” he said. “I don’t know why I said that. It’s really none of my business.” And he walked away.
I am sure that he felt better for apologizing to me, but I felt numb for a while, then mad at myself for not having the appropriate, politically active, stereotype-shattering response. Then, I just felt sad. I always assumed that everyone just absorbed the love that my little boy exhibited with his belly laugh and hugs. It never occurred to me that he was viewed as “too expensive.” I felt sorry for the man, probably counting every penny, and thinking about Town Meeting and property taxes. After all, he was right. My son’s education, which was still nowhere near appropriate, did carry a hefty price tag that was all too evident in the school budget.
Days after the man shared his thoughts about my right to have more children, I found out I was pregnant with my fourth child. And yes, I continued to take my disabled son out in public with the others, and let the glarers glare. Sometimes, someone smiled.
So, that brings me back to the perspective I gained from Montreal. What was I searching for? What could this Oz grant me? There, I was not the mom with a cause, except as I wished to be. I escaped, spoke French, saw plays, and thought about the life I had been called upon to lead. Sometimes it struck me, after days of seeing not one person like my son, that life felt superficial. Then, I’d come upon the man who sat, speechless, with a cup on Ste. Catherine Street, just a man and his dog. I knew he probably had autism, probably some other mental health issues, but enough skills to sit out there all day and collect his money. What more might he have been doing? Was this the life he chose, or was it all that was left for him to do?
I went because I loved the luxury, the freedom of letting go of a reality chained to limits imposed by disability. I could let go, once in a while. But why chains? why such limits? If I left feeling exhausted and questioning about why this life had been handed to me, Montreal did take me home. I returned to have it in all its fullness, with new energy and hope, a new fire blazing to make a difference.
So, now, fully recharged from the laziness of summer, I return.
My friend’s neighborhood is about to be invaded by adults with Prader-Willi Syndrome.
This, apparently, is a problem.
The issue came to light recently, when the other house on the market—oh, my friend is trying to sell her house right now—sold, to an organization that places people with various disabilities in group homes. And get this: the group homes are in ordinary communities, right next to everyone else. In this case, it is one of the finest neighborhoods in town.
Some may call this inclusion.
My friend’s “neighborhood organization,” created solely around this issue, by the way, calls it a threat.
My friend, who also has a few kids with special needs, is incensed by her neighborhood’s reaction. Knowing my views on the subject, she called me. My advice? Go door to door and ask all the families who have kids receiving special education services to put up signs that say “THIS IS A GROUP HOME.” After all, what is the difference?
The agency that owns the home intends to go door-to-door to talk to neighbors in the community. The neighborhood association sent out emails suggesting that residents should not invite the agency representatives in. Instead, neighbors should wait for the public forum, with attorneys present.
And for what? To keep everyone who is “different” away from this elite group? Perhaps they see the group’s individual approach as a “divide and conquer” approach. But what if the neighborhood organization has simply made statements that only appear to reflect the opinions of all its members? What if the emails that the group sends out ask not for input from the community, but only determine the action that should be taken? What if someone disagrees?
I called a friend who deals with this issue, and others like it, often enough. The suggestion: nada. The group has mobilized, and a relevant state agency, Commissioner included, has already been notified of the neighborhood’s intentions to fight this home tooth and nail. Do they have a case? Well, sure. It’s a case, as long someone makes it one.
So, after a few days of incited work to educate the community, I am calmed by my friend in-the-know. “They’ve made up their minds. They don’t want to hear your side,” he says. He has seen a lot of this before, so I believe him. But I do not want to. These neighbors just don’t want to hear the worth of people with developmental disabilities! My friend tells me this. And this guy is one of the most unflappable people I have ever known.
I do not deal with this realization so well on my own. After all, Prader-Willi… well, kids with Prader-Willi are not so different from my own kid. In fact, he has been tested for it, because he’s a food-loving kid with low muscle tone, cognitive impairment, a sweet temperament, and according to this group, no value! When he grows up, will no neighborhood want him either?
Here is a description of a few Prader-Willi symptoms, in far more detail than anyone wants to read:
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Neonatal and infantile central hypotonia, improving with age
Feeding problems and poor weight gain in infancy
Excessive or rapid weight gain between 1 and 6 years of age; central obesity in the absence of intervention
Distinctive facial features—dolichocephaly in infants, narrow face/bifrontal diameter, almond-shaped eyes, small-appearing mouth with thin upper lip and down-turned corners of mouth
Hypogonadism—genital hypoplasia, including undescended testes
and small penis in males; delayed or incomplete gonadal maturation
and delayed pubertal signs after age 16, including scant or no
menses in women
Global developmental delay before age 6; mild to moderate mental
retardation or learning problems in older children
Hypothalamic dysfunction is thought to be the cause of the disordered appetite/satiety function characteristic of PWS. Compulsive eating and obsession with food usually begin before age 6. The urge to eat is physiological and overwhelming; it is difficult to control and requires constant vigilance.
Infants and young children with PWS are typically happy and loving, and exhibit few behavior problems. Most older children and adults with PWS, however, do have difficulties with behavior regulation, manifested as difficulties with transitions and unanticipated changes. Onset of behavioral symptoms usually coincides with onset of hyperphagia (although not all problem behaviors are food-related), and difficulties peak in adolescence or early adulthood. Daily routines and structure, firm rules and limits, “time out,” and positive rewards work best for behavior management. Psychotropic medications—particularly serotonin reuptake inhibitors, such as fluoxetine and sertroline—are beneficial in treating obsessive-compulsive (OCD) symptoms, perseveration, and mood swings. Depression in adults is not uncommon. Psychotic episodes occur rarely.
Motor milestones are typically delayed one to two years; although hypotonia improves, deficits in strength, coordination, balance, and motor planning may continue. Physical and occupational therapies help promote skill development and proper function. Foot orthoses may be needed. Growth hormone treatment, by increasing muscle mass, may improve motor skills. Exercise and sports activities should be encouraged and adaptations made, as needed. Proficiency with jigsaw puzzles is frequently reported, reflecting strong visual-perceptual skills.
Hypotonia may create feeding problems, poor oral-motor skills, and delayed speech. The need for speech therapy should be assessed in infancy. Sign language and picture communication boards can be used to reduce frustration and aid communication. Products to increase saliva may help articulation problems. Social skills training can improve pragmatic language use. Even with delays, verbal ability often becomes an area of strength for children with PWS. In rare cases, speech is severely affected.
IQs range from 40 to 105, with an average of 70. Those with normal IQs typically have learning disabilities. Problem areas may include attention, short-term auditory memory, and abstract thinking. Common strengths include long-term memory, reading ability, and receptive language. Early infant stimulation should be encouraged and the need for special education services and supports assessed in preschool and beyond.
General health is usually good in individuals with PWS. If weight is controlled, life expectancy may be normal, and the individual’s health and functioning can be maximized.
The constant need for food restriction and behavior management may be stressful for family members. PWSA (USA) can provide information and support. Family counseling may also be needed.
Adolescents and adults with PWS can function well in group and supported living programs, if the necessary diet control and structured environment are provided. Employment in sheltered workshops and other highly structured and supervised settings is successful for many. Residential and vocational providers must be fully informed regarding management of PWS (http://www.pwsausa.org/syndrome/basicfac.htm).
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And really, what would be so bad about anyone with any disability living here? What if the group included those with mental illness? What if they were supported, trying to live a life within a community? Do they not have the right to do that?
All right, readers, this is just not right. Last year I had the rare opportunity to be a fellow in a LEND program. LEND stands for Leadership Education in Neurodevelopmental Disabilities, and I entered the program with no more credentials than the ones you get from being a parent, and perhaps a determined parent. There we fellows spent our Thursdays and Fridays on the grounds of the Fernald Developmental Center, an institution, a constant reminder perhaps of what we did not want for the future. It was one of the most challenging years of my life, and I can only hope that the late-night hours spent struggling to finish papers on disability policy issues were not for naught. The effort should be more, part of a bigger picture. I wanted the training so I could help change the world. And if it takes the rest of my life, I will fight in whatever way I can for the rights of “those people” to live as people not in places like Fernald, not away from “us”, but with “us”, in “our” communities.
You never know when “one of them” is really “one of us.”
Well, yes. Actually, you do. After all, we are all only temporarily abled, and maybe not always at optimum ability level, even at that. It is all a part of the human condition that we seem to fear so much.
This, from the Developmental Disabilities Act of 2000, sums it up well enough for now:
“..disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society… ” [underline mine]
And now the real challenge, when preaching a cause seems so easy… I will try.. be it so hard, to understand and hear the fears of the people who want to keep these “different” people–all “different” people–out. I will try to understand. We are not all so different, and we all have our fears, our prejudices.
Perhaps we are also all a bit different, but we can still love our neighbors.
