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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.
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.
Yesterday, I found myself hopeful, excited by the symbolic gesture in a new name for the Department of Mental Retardation.
Those hopes were dashed when I saw the final Senate budget this morning. Despite amendments filed to restore cuts to crucial programs, those cuts remain. The budget for human services overall is not only disappointing; it is cruel. Some gains are there for select programs, but it sure hurts to look at the things that affect daily life for so many people, and realize that belts will tighten even more, and some will go without… again. I know that the economic realities are hurting everyone now, but these are programs that were suffering through the best of times. They may well now be on the brink of collapse.
For all of the happy moments we celebrate in symbolic gestures like inclusion classrooms, we continue to underfund programs that help people with disabilities. The ultimate price of this systemic abuse is high, as human beings lose their ability to work and to live somewhat independently. It trickles down levels, making the doling out of portions into a game. And far too often, those who figure out how to play that game and have the time to devote to it beat out the ones who need help the most. More and more families find themselves also unable to work, while the care of a loved one falls on their shoulders. We have let this situation grow increasingly worse for years–at least twenty years now. The crisis in the economy only intensifies the situation, as competition for those dwindling funds grows, too.
Names mean a lot. Gestures mean a lot. Now let’s put our money where our mouth is.
Could this really be the day? Could this be the day that Massachusetts strikes through a department name that shocked me when I moved to this state? The wording in the Senate budget amendment would indicate that it is, and the joint committee that gets the budget next is not likely to change “Department of Developmental Services” back to its present name. It has been years that Massachusetts advocates have been working to change the name, and it seems that this will be the year.
The Department of Mental Retardation.
I thought that sort of name had gone the way of the institutions… Unfortunately, we still have those, too, in Massachusetts.
Mental retardation.
My son has this diagnosis along with autism. Those clinical diagnoses jump around when no one can find a clear explanation for why a person is not like everyone else. “Mental retardation” is a name I have mostly avoided using, largely because of its highly presumptive and predictive quality. “Developmental disability” seems to allow for more latitude, more possibilities. And I really prefer to refer to his abilities, rather than his disabilities, even on the most challenging days.
Beyond my own son, who does qualify for DMR’s minimal services no matter the name of the department, I wonder if a name change might not highlight the growing need for the forgotten developmental disabilities in the Commonwealth. Our own DMR houses the Division of Autism, which should serve all individuals on the autism spectrum, not just those who fit into DMR’s eligibility requirements, which are largely based on IQ, more stringently so for adults. There are a good number of people who have developmental disabilities who do not have IQs under 70. So who serves them? The Department of Mental Health sees “Asperger’s syndrome,” and hands fly up in the air: “That’s not ours! To DMR with you! Away!” Even those with multiple mental health diagnoses get pinned with an autism spectrum disorder, and DMH flies away. But right now, DMR does not provide services to individuals with Asperger’s syndrome, either.
Of course, the issue is really one of funding, and that rant is yet to come. Some who opposed the name change point to that very issue of funding, and the sympathy that the term “mental retardation” inspires. My son has been the special education mascot once or twice in his life, and I found those moments to be ones of circus-like shame. Perhaps the notion of “those poor people” inspires some guilt-ridden legislative line items, but does it inspire understanding and real systems change? Does it give people real lives, or does it perpetuate the fear? Not to say that funding is not important: I imagine that if the well had not run dry, DMH or DMR (DDS?) in this day and age would happily ensure that all people with disabilities get what they so desperately need. They would coordinate services rather than playing ping-pong to maintain a barely manageable caseload. I truly believe that every person who works for these agencies wants nothing more than to be able to provide appropriate services.
But lest I let these dreams of coordinated case management and appropriate services fly away with my point, let me get back to the very basic problem with a name like “Department of Mental Retardation.”
My son, with a diagnosis of “severe mental retardation” should, by definition, not gain cognitive abilities above those of a four year old.
How the hell does anyone know that?
And yet, with that prescription, who will ever help him to realize his potential, and not those of a clinical diagnosis?
Does a name mean anything? Oh yes. Sticks and stones have far less power.
A name means everything. And perhaps, this year in Massachusetts, a name will mean NOT keeping people in their place, but supporting their development. Maybe, just maybe, a name will mean change.
In a few short moments, the three kids and I will head out to Dairy Queen. It is a treat, to be sure, but symbolically it is an attempt to salvage a little joy from this weekend. I really don’t care about ice cream tonight; I just want to leave the house and have some feeling of being a happy family.
I have come to realize that the same issues that made me give up custody of my son with developmental disabilities in August are the same that may make it impossible for me to take him overnight at all. Those issues all revolve around one thing, and that one thing is perhaps the most damning defining moment for a person with a disability.
That one thing is another person. It is absolutely necessary to have more than one adult to take care of my son at any given time. This does not require a mere warm body. To help, the person needs to be vigilant about safety issues, but also patient enough to withstand a bite, a grab, a few solid hours of changing pants if his tummy is upset, or sitting outside his room on a wild night that he cannot fall asleep. It takes a person who will show up at the times that are likely to be challenging, and show up reliably. It takes a person who doesn’t mind the other kids and the holes in the wall, the clutter everywhere (which would be less of an issue with more help). It takes a strong person, who can help me get him out of harm’s way if he flops on the ground—sometimes inconveniently—and refuses to move, a person who can do this all with a smile, and some degree of understanding. It takes a kind person. It takes a person who will be all those things for the going state rate of $10.84 per hour… well, assuming that my son’s present custodian reapplies him for the MassHealth benefits that pay it.
Last year, when I was the custodial parent and called the shots, I was offered an opportunity to return to school in a prestigious disability program. I would never have attempted a demanding fellowship if I had not been incredibly lucky at first. A full-of-life, smart, loving young woman came from miles away to help me care for my son nearly everyday for several months. For her, as much as she liked us, it was a career move, and a good one at that. Life was good for all of us, and we laughed a lot, had fun. But it was inevitable that she had to move on to greener (and more lucrative) pastures when opportunity called.
Before she left, I started looking, and did not find in the six weeks I knew she was leaving. Within a short time, I was spending most of my time without children advertising the position in every thinkable way, then interviewing candidates. Some interesting people came into our lives for moments: a Harvard pre-med student, a part-time nanny who was working on a master’s in social work, a stately woman whose father had been killed by Idi Amin, and many, many more. Before finding help, I conducted thirty-two interviews, hired ten marvelous candidates (all of whom quit by the first day after coming for orientation), fired two (negligence does not even begin to describe..), and tried to write a grant for a project that would link college students and families of children with special needs. The project seemed doomed from the start in the midst of various regulations and other difficulties, not the least of which was the prospect of defining myself as a non-profit organization. It seemed a bit much. I sat in on organizational meetings around a state law that had been passed to address the problems with this workforce. As my studies progressed, I shaped my work around this issue, one that affects so many people. I was exhausted, and still had no answers, not even from the highest levels of state agencies. At last, months later, we finally found one person, a caring young lady who had known my son for several years. Relief…
After one difficult evening, though, she failed to show up for work the next day. She had hurt her back, she said in a message, and I called to see if she was all right. She never answered her phone, or email, to me again. The fallout was jarring to the kids, and to me. I advertised again, somewhat cynically realizing that the people who enter our home also enter our hearts. I started the quest again, but this time had no luck. Ultimately, I quit a job I had taken at the end of my fellowship, telling my supervisor through tears that I could not financially support my kids and care for them, too. And then, I made an even more difficult decision, the hardest thing… It was perhaps the only choice, but in so many ways it has always felt like the worst choice.
I gave up.
I realize that this statement goes against my happiest thoughts about my family, the ones like those I wrote several weeks ago, finding the joy in an ordinary day. The day I described there was an ordinary day… extraordinary, to be honest.
The truth is that there are moments that are hard, grueling, moments when the facts of toilet training deficiencies and behaviors resulting from nonverbal realities can bring me to my knees, literally.
I posted nothing here last week about Mother’s Day. Recovering from another back injury after a walk with my son, I was not in a joyous mood about the holiday, despite the efforts from all of my kids. They tried, as much as kids can; they really did. It was not my weekend to spend with them, and changing things around for a day never works very well; it is confusing, most of all to a child with autism. I have never had a bad back, but I cannot lift an obstinate 120 pounds, either.
It is moments like this that destroy the mother-child bond. I find myself less of a mother as I admit this, but I can feel it for days after something bad happens. I feel it in my recoiling when my son hugs me, my reluctance to endure another bite tearing me apart as I want to love him freely and without hesitation. Oh, I know he does it not out of cruelty, but out of frustration, in moments that his ears hurt, or that I failed to understand him, or that he just needed to feel that sensation for some reason I can only try to acknowledge.
Agencies across our Commonwealth, across the country, struggle with the lack of funding for people who have no voice, or a quiet one. Families besides mine are being ripped apart by lack of support, despite the best efforts from groups that lobby for the small legislative victories that lead to systems change. Maybe attitudes change along the way, and pave the way toward better times. But when money is tight and economic predictions are dire, altruism often takes the hit first.
There has to be a better way.
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?
Last Thursday, my hair still wet from dodging the heavy snow as I rushed—late—into the courthouse, I was stopped still in a stairwell as my lawyer whispered back to me.
“You agree to it? You can live with that!?” she grabbed my arm. She had worked in this system for so many years, knew the world of developmental disabilities, of mental health, said that she thought I was doing the right thing. I trusted her. She would have said no before I ever got there if she had thought it was a bad idea—she knew me that well. My lawyer is not one to mince words to save my feelings, but after all this time I trusted her. I knew that she had always wanted what was right. More than that, I trusted myself, and I let go.
I was still nodding, barely breathing, then pacing back and forth, looking up at the high ceilings, the light coming in the windows near the top. My lawyer walked away from me, quickly across the hall, saying “Okay.” I had just agreed to give away my rights to make medical and educational decisions for one child, to have them for another. It was going to be okay. The choice that felt like a surrender to me, felt right. It would benefit everyone else. In other words, it was the only choice I could make.
“When I let go of what I am, I become what I might be” (Lao Tzu).
Who am I?
For years, I have been the mom of my son, not of the older one, and not of my daughters, but of my son with developmental disabilities. Oh sure, I am a mom to all four of the kids. I do the typical mom things, read stories, help with homework, shuttle kids around, volunteer at the school when I can. Sometimes more. I try. I have done what I could for all of them, but nothing compared to what I invested of myself in the life and times of my ten year old. For ten years, it is his mom who I have been.
It is a laudable job. Mother of child with special needs. Advocate (not any old parent, but one who stands up for her kid against the System). I found generous people—much more generous than I had known before. I found patience. I found purpose. It is a job I never wanted, though. I was an affable, word worshiping Europhile with grand visions of saving the world in other ways, increasing global understanding through languages and literature. My visions of motherhood involved exposing the kids at a young age to tapenade while on sabbatical in Provence, hiring theater-major babysitters who taught my kids Shakespearean scenes that I would make into productions for the neighborhood.
Well, I do still speak French, and I do still tutor from time to time. My daughters do love to go out on my balcony and yell, “Romeo, Romeo, please take out the trash” (where did they get that???). But my kids’ performances tend more toward High School Musical than Hamlet, and my ten year old? Well, he always loved the “Tomorrow, and tomorrow, and tomorrow…” soliloquy from Macbeth. The popping sounds made him laugh—not really the effect they were supposed to have. But then, my ten year old never learned to talk.
I remember my suspicions when he was tiny. He was a good baby, smiled early, hardly ever cried, and he was beautiful. Not just cute, but angelic. Next to my older son, the one who tried my patience sorely (even as I tried not to laugh), the one who would later be diagnosed with bipolar disorder, he seemed a much-needed gift.
Still, something in his cry, when he did cry, broke my heart a little every time I heard it. I picked him up, feeling that he needed more of me than I had, and I had not even noticed until it was too late that he needed me at all. By the time my little boy actually called for me, it was as if he was not only fed up with waiting, but in pain. Looking back now, I think he was. I think it never occurred to him to do something to get my attention, only to cry in actual, physical pain. In the busy days with a toddler, I sometimes forgot that the baby had not asked to eat for hours. He didn’t reach for things, couldn’t pick up his head. He did not try to push up his head if I put him on his tummy—he just lay there until I saved him. At four months he still did not roll over. He was content to sit in his bouncy seat for hours, cooing at me enthusiastically when I sat beside him, but otherwise apparently happy alone. Everyone told me how lucky I was to have such an easygoing fellow, who could be passed quite easily from woman to woman at any given community function. I agreed, I was lucky, but it just didn’t feel quite right.
I have come to hate the “What to Expect…” books. They make it sound as though everything is always going to be all right, and line up lists of normal milestones that end up feeling like points of comparison, or competition. I guess there has to be some way to assuage your everyday parental anxiety, but I came to see these books as cruel reminders, flip descriptions of what everyone else’s child was doing. I came to resent my own baby books. Growing up, I had always loved to look back at what I did at certain ages, filled out meticulously by my mom. I filled out pages for my first baby, for a while, until the measures for him just didn’t seem right. I completely stopped putting the milestones next to the pictures of duckies when my second son never even met the milestones, months after they were promised to happen. Late bloomer. No, no. No! I was sure it was just a fluke. My own mom had the proof that I was toilet trained by age two. I don’t even remember when my kids were out of diapers. Well, my ten year old still is not. I know, I should know these details. I did keep track of so many things, know some key facts about my children’s development.
Here are a few.
For my older son: Put keys in car ignition properly – age 18 months (after retrieving my missing keys—from his toy tractor)… I would never believe it if I hadn’t been there.
For my younger son: Walked – age 4½ years (after first time riding a horse)
For my older daughter: Crossed the street by herself – age 3 (to visit the dairy cows and pick blackberries)… chased, by me
For my younger daughter: Said first sentence, “I’m the baby.” – age 18 months (and got passed around to every kindergarten mother because she was so cute).
I can also tell you the dates of a few key events for my ten year old. The first EEG, EKG, EMG, the first CAT scan, MRI. Expensive equipment. Mostly nice doctors. But first came the crushing blow. It was on my mom’s birthday. I got home late in the Vermont snow, a lump still in my throat. My son was ten months old, and I had asked the question at six months (“No, he’s healthy—just a late bloomer”), then at nine months (“Maybe you should come back in a month.”). It was a month later. My son had still never rolled over on his own.
“Nothing has changed. He’ll still be able to live at home,” the pediatrician told me before he walked out of the room.
It was only years later that I realized that these were hardly sensitive words. I wanted to know the future, and it was not in the “what to expect” category. He said that nothing had changed. Everything had changed. He said my son could still live at home. I was nowhere near the point of thinking that any of my children would live away from me before they grew up, and this doctor had the nerve to put that thought in my head. How could he give me news like that to share with my mom on her birthday? Saying it to her only made it seem real, and I didn’t even know what he meant by “delayed.” Wasn’t that the same thing he said before? Late bloomer? The next day, I hit the toy stores in search of developmental toys, mirrors. I made the appointments, neurologist, geneticist, had the blood drawn. I discovered the internet. I changed.
It was another year and a half before someone said the word “autism.” I’m still not sure how it fits, but it certainly got everyone’s attention better than “developmental delay.” I signed up for a year of classes–the University of Vermont’s Rural Autism Project probably saved my life. I drove to Montpelier every Wednesday night through every sort of weather, winding through the dark roads late at night, looking for answers, finding myself in the process. I was his mom. I dragged the kids–first just the boys, then another girl, then another–to Burlington every Friday for several years to see the “right” occupational therapist before I found a great one near us. I made friends, connections, went to conferences, read, looked for the cure. “Let Me Hear Your Voice” convinced me that the behavioral program the doctor had recommended in the beginning was the only thing that would save him. With it, he would talk. I wrote letters to important people. I complained. And a year later, when we still did not have those behavioral services, I called a more important meeting, wrote to more important people. My son got his program, and he even said a few words, for a while. Everyone knew my son. He was my cause.
Things continued like this for years, so many things, so many efforts, and still they do. But one day, near the end of a year in a fellowship program that was nearly all inspired by this one child, I realized that I could no longer lift him. I found this out because I could not walk after I tried to do it too many times. Apparently, a lot of other people realized that they could not lift him, either, because it was getting harder and harder to find people to help me. The ones who thought they could were getting hurt, pulled muscles, bite marks, scratches, enough. I missed the people who helped me, helped us. If I think of the amazing people I met, and the experiences I never would have had, I realize how lucky I was… also how selfish. I found my voice in giving it to a boy who does not have one, and now I find myself wondering what to say.
I let my son go physically several months ago–he now lives with his dad–a tough choice in itself (as I wrote here)–though I know his dad loves him. I didn’t want to separate the kids, but what more could I do? It should lead to a better life for him, a better life for his brother, who also needs me to fight for him, a better life for his sisters, who just need me period. A better life for me.
…I think. But what is that life now? I wonder, as I realized the day after that court date, at my son’s annual school review, that I would not be the one signing the individual educational plan. Oh, yes, what I gained in the exchange is precious, necessary perhaps. It lessens the struggle. There really was no choice. But giving up on one son to save another? Oh, yes. My older son needs this now. My older son has bipolar disorder, and walks a perilous labyrinth filled with the dead ends of denial and the land mines of stigma. He can learn to walk that path safely, though–with some help. But now I know I cannot walk it for him. His sisters need me. I need me. But this all sounds so righteous. Really, the best I can hope is that it is right. I make choices for some, for many things, but I have no control over how things turn out. I never did. And really, what did I have then? What do I have now?
“When I let go of what I have, I receive what I need” (Lao Tzu).
I looked at the date today and realized that I have hardly written in the past ten days. It made me wonder. I thought I’d be full of thoughts at this time. True enough, but words just did not come out of them. Sometimes, though, it is hard to put words to things that have not yet started to make sense. My little boy left just a week ago today. All right, he is not little: he is ten years old. He is heavy. He actually is pretty big. And strong. I wrote about him before, anticipating the day. The day came, and I thought I would leave it there, move on. But it has taken a little longer.
I saw my son off last Friday evening, a strange day, but all right. I went briefly to a cookout for his camp. Friends met me later, other moms who have kids like mine, single moms. We said we should have told the waiter that we were exotic dancers on our night off. We did yoga—it’s close, right? I went home, kept busy all weekend, a bit dazed, then came home Sunday. The other kids showed up without their brother.
The quiet in the house at first was a relief. It can be all-consuming to care full-time for someone whose needs are enormous. I had taken it for granted for so long, it was a relief not to have to remember so many details, at least the first night. The next day seemed even quieter, even with the other kids. And the next two, nearly empty. I made enchiladas, one of his favorite meals, and my youngest girl just started crying. This, from the one I had deemed least likely to be upset by the change. Maybe the others were not quite ready to cry yet. Maybe I wasn’t quite ready, either.
Tonight, it feels right. He is here now, visiting for the weekend, thrilled to have risotto (of course I planned the menus thinking of him), and to take a bath. He is making the noise that fills the house, the same noise that in all truth annoyed the hell out of me sometimes, but a true indicator of his presence, sweeter now that I haven’t tried to sleep through it in a few days. Now, on some weekends, he will still come home, and his sounds will fill the house again.
I was not expecting to be hit so hard by his absence. I knew that one day, the needs would be great enough that I could not handle him on a daily basis. Already, it had become nearly impossible to find personal care attendants who were able to do the job. I attributed it at first to a general shortage of workers. There was even legislation passed to help the situation: it must be a big problem. I found thirty-two people to interview, nonetheless, and hired ten. Of those, eight quit before the first day, and I had to fire the other two. Wow. Harder than I thought. I had a great idea during last year’s program in disability policy, finding help for families who need an extra hand to keep the people we love at home. It is a problem, an enormous one, one I felt we could make better. One day, I was speaking with a man who had been involved in the independent living movement for years. Yes, people should be able to live in their community, and should have the supports they need to do so. But sometimes, he said, to my surprise, it is nearly impossible for the community to support everyone. In our case, after the last person left one day, feeling guilty enough that she never came back to say goodbye, I knew that we had reached the end of the line.
Behavioral challenges, safety concerns, limits to mobility, few self-help skills: these were the things I tried to help my son overcome. So many people tried. I miss those people. I miss the smiling young faces who came to teach, to play, to help. I miss the therapists and teachers. I counted once how many people had come into our home to work with my son. At age ten, the number reaches near 100. It may seem hard to believe, but the turnover is enormous for so many reasons. It is a job with a “Puff, the Magic Dragon” quality to it at times. Other times, budgets get cut. Sometimes, people just burn out, and sometimes it is far from pretty. Many times we had three and four people coming to the house on a daily basis. I loved so many people who came into our lives because of my son. He brought people whose capacity for love and patience was greater than I sometimes experienced. It was a thoughtful world, despite the constant fight for the help kids need. I remember each and every one of the people who visited our life—wish I had a picture of all of them. These people became so much a part of the scenery, a difficult relationship to negotiate at times. Professional helpers could not be family, were different from friends. They leave when services end, and yet, they are so much a part of our family, if an indefinable one.
So, some things change. There will still be people who help my son in his school. We will still know them. I do this with the hope that he can have the life he wants, surrounded by people who care about him. It’s nothing more or less than what any parent wants for a child.
I miss him. He is upstairs now, already in bed. It feels right with him here, even for a few days. It is a guilty relief, to know someone else has to do it every day. It will take a little while before it feels right for him to leave, too. It will take some time for this to make sense, but already, knowing that he can come home, already I know that in many ways, he never really will leave.
Life goes on.
The words on the page of the letter made the decision tangible. Yesterday, they were just words I uttered through tears over the phone. Little details, clothes packed away, toys in boxes, and memories playing over and over though my head, made the decision more real. I walked up the stairs to the attic. The boxes, ten years worth of letters and records from doctors and schools and therapists, made the decision more understandable, in my mind if not my heart. In exactly two weeks, our lives will be different. My boy is leaving.
Oh, of course we’ll see him again often enough. He’ll come home some weekends, and I’ll visit him at school. But, he will no longer live with us here in our house in Framingham.
It would not help to defend myself as a mother at this point. Either you understand the wrenching choice, or you don’t. It is not a decision I made easily, or quickly. Indeed, the proposal had been made three years ago, by a behavioral specialist who worked in our home. It has taken a few injuries for me to consider it. Strangers bitten, therapists leaving the job after hurting their backs… The days I spent unable to walk after trying to lift him were over a year ago, yet I look for some sort of way to explain how hard it has been. Sleepless nights? The scratches on my arm? His room is a wreck, drywall falling where he has banged his head, windows broken, contents of drawers and closets scattered in nighttime frolics. His frolics, not mine or anyone else’s. And the price paid by his brother and sisters? Sure, they love him, but they have given so much, learned so much so early. How about my ten-year-old son? It is for him that I know I have to do this. I can damn the world we live in, but at least for now, it feels like the only chance he has to move forward and really learn the daily living skills that will make his life better as an adult. His life could be better. That, at least, gives me some consolation.
But then there are the joys I will miss. My boy laughs from deep in his belly. When he is truly happy and seems to know I understood him, he beams, and holds me tight for a hug that feels like forever. Amidst social service budget cuts and reason for pessimism, this kid inspires generosity, patience, and tolerance. They have been lessons for all of us. The world slows down, and the essential things become clearer, the judgments less harsh, the pleasures more sublime.
I was inspired in my own work and life by my son and the people who have helped him, and by the people who have helped me. It is a world that was so foreign to me when I was younger. I was afraid of it. In working on policy around disability, I see the range of people who are perceived as limited by what their bodies let them have. And yet, what remains is the spirit. It sometimes astounds me. It all seems normal to me now, more normal, in fact, than the perfect health we hope to attain or maintain. Is this not the human condition? I think of accessibility, acceptance, and love, and I leave you tonight with this:
The Poems of Our Climate
by Wallace Stevens
I
Clear water in a brilliant bowl,
Pink and white carnations. The light
In the room more like a snowy air,
Reflecting snow. A newly-fallen snow
At the end of winter when afternoons return.
Pink and white carnations–one desires
So much more than that. The day itself
Is simplified: a bowl of white,
Cold, a cold porcelain, low and round,
With nothing more than the carnations there.
II
Say even that this complete simplicity
Stripped one of all one’s torments, concealed
The evilly compounded, vital I
And made it fresh in a world of white,
A world of clear water, brilliant-edged,
Still one would want more, one would need more,
More than a world of white and snowy scents.
III
There would still remain the never-resting mind,
So that one would want to escape, come back
To what had been so long composed.
The imperfect is our paradise.
Note that, in this bitterness, delight,
Since the imperfect is so hot in us,
Lies in flawed words and stubborn sounds.
