adventure 20

The way I have structured these days is to think a little in the morning about what might make for an adventure later on. Sometimes I have little time for this sort of thinking, so I prod at the idea once in a while during the day… “Are we having fun yet?” And yes, usually somewhere in there I am having fun, but not always the sort that is more than a little amusing to me at the moment. Drinking coffee, unless in Paris or, say, Dakar, is not an adventure. Or maybe it is.

But today, I planned it out. On the way home from delivering my younger son back to his dad, we ended up on the banks of the Charles River near the Publick Theater. Now, I have never actually stopped there–no time, no time. But there is always time. So we stopped. And it was quite nice, wandering there next to the water, talking to the woman who had her cat in a specially designed kitty stroller. Yes, she took her kitty out for a walk! And there was the man taking pictures of his son on the same falling-down willow trees where mine were playing. It was an adventure, and a nice one.

And then, there is my discussion with a friend about my future, what I plan to say tomorrow. But that is tomorrow’s adventure. I can save it.

I repeated my early-morning bike ride. I saw my son with autism–and it was hard. I have cuts all over my arms from the frustrations he faces when he is uncomfortable… and cannot explain why with such limited language. I talked on the phone to a friend who has been a little out of touch, but not forgotten by any means. I talked to my mom… but that is no adventure at all: I talk to her everyday.

In all of this, I find myself changing. So when I received a note from a fellow on a dating site and realized that he was looking for someone who does not seem to be me, I wrote a note to him, answered his niceness.

Then I spilled my guts. I never do this, and even told him that I never do it, and did not particularly feel that it was the best way to start a conversation with someone who might potentially want to ask me on a date. I told him all about my last relationship, the crazy one. And then sort of cringed. Why?

Why indeed? I must say. Why would I ever settle for anything that makes me less than happy? So many things did bring me joy in the relationship–at the very least, the idea of having someone to talk to. An adult. A friend. And more, a friend who liked me so much, who engaged me, who accepted me. This is not something I take lightly. And there are a good number of reasons for that. A few examples…

A few weeks ago, I was invited on a picnic with a new friend who wanted to speak French. I wanted to speak French. I like new friends. So we talked about the picnic, set roughly for a certain day of the week. The day of the week fell on a day when I learned at the last minute–the night before at 8pm–that my older son’s school had decided at the last moment to have a meeting. Given the crisis that caused the meeting to happen, I said yes, yes. Of course I would be there! I canceled the picnic. The new friend told me I was rude, too busy, and made a comment about single moms. Never another word.

Another example: I spoke at a forum on children’s mental health support. It was a big deal, with state bigwigs and reporters. One of the reporters quoted me in the local paper, and before I knew it, my daughter’s best friend was no longer available–ever!–to come over to our house. In fact, she never came over again. A swift comment from the mother about the newspaper, about her beliefs around children with “issues”, explained the rejection.. but it was not less painful.

A friend asked me on Friday about how well I get along with the moms of my younger daughter’s friends. Well enough, it is true. But it is always a little hard. I live on the wrong side of town. I work in social services in a town that is a little tired of being the town known for social services. I am divorced in a town that seems curiously devoid of single moms. And then.. there is the issue about the boys. Yes, the boys. It is hard. The girls’ friends still come over, I still talk to parents, volunteer at the school… and still.. It sometimes seems that the only people who truly understand are those who have lived it.

So I cling to that. I cling to the connections I have made with those who know firsthand what life is like in this zone. I love dearly, and I know that no relationship of any sort will really work unless someone has extraordinary patience and some experience in this sort of thing. Some life experience. I seek a partner who has lived through failures great and small, who is still smiling at the end of the day, who can love me, and be the stand-up guy who does not walk away–run away more likely–who needs that sort of understanding from me.

I get it. There are a lot of things, I realize, that I do not have to live with. But disappointment, failures, obstructions and grief I get. Small miracles I get, too–and joy! Getting up and going anyway, I get that. Wishing, working for better things: I get that, too. Believing in goodness, I understand. Believing in general is something I do not take lightly.. I love.

And I do love.

Fellows on dating sites still write to me. Over years, I have met nice friends there, and I have met loves, so I remain. But I do not want to tell new friends what it is really like. I do not want to say that my son just spray painted the basement wall. I do not want to show them where my other son scratched my arms. I do not want to tell them that my last boyfriend was committed to a psychiatric hospital for a short time. I do not want to tell them that I go to work to meet with people who are living loving lives in the basements of crappy buildings that should be condemned. I do not want to tell them that I see rock bottom on a fairly regularly basis, and that all the passion and patience and understanding that is in me is there because I know the other side.

I do not want to tell them this, and still.. I did. He said he thought I could not be committed to a serious relationship with him. He was certainly right–indeed, I did tell him that I did not want that, anyway. But friendship? Well, no. He did not seem to think I was right for that, either. Certainly right.. but not for the reasons he thought. Healing? I suppose I have healed as much as I ought to. But so much is so unsure so much of the time. And then, there is the other thing. I love, yes I do.

I want this life, this full life, this hazy and unsure life… and really, I already have it.

adventure 2

Hope.

In the middle of the day today, I left my office. It had been too long inside, doing things that distress me. The first was a call to protective services–the place a person calls when a person over the age of sixty is being abused. The second was a conversation with a special education administrator who proposed a plan so ludicrous for a nonverbal student that I promised that I would call her back during those five minutes she has free tomorrow morning at 7:30 a.m. It is beyond the job description, but I did not do it for my job. I did it because I hope.

And that is today’s adventure. I am beyond exhausted, dealing with the trials of children–and they do not seem to be only mine who are experiencing an unusually high anxiety at the moment. My friends’ children–most of my friends!–are at a loss to figure out what has set everyone off. About the only explanation that makes sense to me at this point has to do with either astrology or barometric pressure, and I just hope that it all gets better soon so that we can get some sleep.

But what about the adventure?

Oh, yes. I was supposed to do that, wasn’t I? I was supposed to have an adventure a day to write, and here I am speaking about things that seem perhaps upsetting, but not terribly adventurous.

Nah.. there is some sense of adventure in still loving this life. I hope, hope for better, for more, for more universal love. I hope that the calls I dreaded making actually made some sort of difference, and I hope that we parents and our kids alike all come out of this time a little stronger, a little happier, and with a little more time to play.

But for now, just being glad for the children to care for and the calls to make and the friends who tell me about all this and listen to my rants seems all right.. and like quite enough adventure for this particular day. Adventure now is limited to the ordinary–perhaps the bubbles in the bath, or that one that floats up into the air…

mind over matter

Which would you rather lose: your mind or your legs?

This question is one that I was contemplating recently, as I realized the full extent of competitive spirit that can exist when different disability rights organizations are desperate to see their favorite programs funded. This seems to be a trend as grant money has dwindled, and as the next state fiscal year is dawning. As our governments work on budgets for 2010, we watch as line items are drawn in the sand. Cross one line, and an employment training program is gone. Cross another, and it is children’s mental health services. Programs are restored, others cut, who knows? If there was never enough money before, it has gotten to survivor mode now. And when it comes to the fight over where legislators dole out the bucks, it ain’t pretty.

But let me return to the original question. Which will it be now? Your mind or your body? Which defines you as a person?

The question may pose a philosophical dilemma: we think, therefore we are. Or we realize our existence as something separate from our physical body, perhaps something beyond time and space. A body, perhaps is the marker here in this world, and only defines us as we are on earth. Our mind, our soul, are what truly define us as human beings. Maybe.

If so, what to make of the mind that is different? What to make of mental illness? of developmental disabilities? Do these limit us even more as individuals?

This sort of question is one that makes me cringe–are we not more enlightened now? From all I can tell lately… well, no. Not deep down.

I do believe a hierarchy of disability exists. I believe it is much easier for us “normal people” to share and imagine the experiences with someone whose body is disabled than with someone whose mind is disabled. We fear the person we can least understand, and a nonverbal or psychotic person will throw us for a loop every time.

I would go even farther to say that the retarded and the crazy can throw some physically disabled people for a loop.

Self advocates with enormous determination have paved an accessible path with their frustration in the system and their eternal lobbying for their rights. Barriers exist, emotional as well as physical, when faced with years without access. But if the spirit may remain, be ignited by the anger at the wrongs of the situation… Minds intact, bodies not: what injustices the world holds when what keeps you from getting into it is a matter of ramps and curb cuts… and the attitudes that refuse to admit the significance of architectural barriers.

Within disability-related legislation, the image of the ADA, even now, is a stick figure in a wheelchair. We understand that wheelchair, the grab bars, the accessible seating, maybe even the braille in an elevator. I do think that even those who can barely speak to a person in a wheelchair have a fundamental understanding of access, and an understanding that the physically disabled person has a right to be included and accommodated.

But how do we deal with those other disabilities? Amendments to the ADA that became effective this year widen the spectrum of what is considered a disability. But what if those people do not want help, much less seek it out? Let them live their lives, live where they want, on the streets, in their cars if they have them. What if they still fear the stigma. Let them determine their own way and fight for their rights if they want to. What if they look pretty normal? What the hell more do they need? Don’t they already have access, if only they just used it? Only they could know.

Of course, accessibility is recognized in many places as more than physical access: Disneyworld makes a visit possible for families of children whose disabilities prevent them from being able to wait in line. A movie theater offers a special showing of a hit movie where conventionally disruptive behavior is tolerated. Schools offer appropriate accommodations during exams (well, sometimes it takes a little persuasion). The thing to note, perhaps, is that so many of these accommodations are not so much for adults as they are for children… what accommodations exist in the community as individuals with cognitive and emotional disabilities grow older? Are we getting better at it? Why has self-determination not been more fully realized for all individuals? Or has it?

Some may argue (or grumble) that accommodations go too far already–even the ramps–that the costs are too high. Or that they are ridiculous, coddling, unfair advantages. Or a waste. That is, until someone they love needs help… or they need help themselves.

It baffles me, though, that some people who fight throughout their entire lives for their civil rights could at this point and time resent the efforts of others who fight alongside them, if differently. I recently was shocked by the statements of a disability advocate who claimed–first admitting the delicacy of his statement–that funding to programs for people with developmental disabilities was generous because others–white, middle class, educated others–speak for these people. He suggested that others inspire pity for these people instead of letting them stand up for themselves.

And maybe he is right. Indeed, it is highly likely that a Department of Mental Retardation benefits from the pity of legislators who imagine a certain type of person, harmless, helpless. Why change the name when it works so well for that? By golly, there surely must be pity funding. And yes, the moms are out there, many of them near-career lobbyists themselves, fighting for a cure, and if not that, for education, for agencies, for the best in children’s services. You have seen them there, crowding the capitals, writing books. Who fights for the crabby guy in the wheelchair?

Sometimes–often, I think–the families fighting for their kids think they are fighting right alongside their physically disabled comrades. Families assume that the world of disability that may be relatively new to them is a welcoming one, at least. Families learn of a difference, a diagnosis, deal with the day-to-day, and get stronger. Then, they assume that fighting for services and funding is a mutually understood thing, that once you “get it”, you really get it, and are accepted at least in that world.

It is “Holland,” as any parent of a child with a disability may tell you: Holland is the place that is not Italy. It is not the parenting experience that is expected in the obstetrician’s waiting rooms, and at some point, a parent will be handed this to read.

It paints a pretty picture of this disability world. Just a little slower. Just different.

Well, I am here to tell you, parents: Holland isn’t always such a lovely place, after all.

I am that mom, you see. I am the mom learning the system, working the system, fighting the system. I am the mom calling the legislator, writing letters–Oh hell, I am woefully inconsistent–I do it when I can and am not putting out another fire. I do it when I cannot sleep at night because I am ticked off enough that our lives are sometimes so needlessly hard. I am the mom writing this. I am the mom fighting for my kids–all of them–one with developmental disabilities, one with mental health disabilities, two who simply live in a family with them, and yes, right now, that world is separate from the “normal world”, even when it is good. Yes, I have lost opportunities, jobs, husbands, friends, and to some extent, one of those children. Yes, I have seem a family fall apart under the strain, and come back to something strong again. Yes, we have faced judgment and discrimination. And yes, to some extent, I protect my children. And then, to another extent, I push them harder, I am meaner, I know what they will face in their future, and hope and pray and fight to give them the means and the courage to advocate for themselves.

And yes, I am that idealistic mom inspired by the self-advocates who paved the road for my kids’ rights. I am the quixotic mom who lined up to fight with them toward an even more inclusive world.

I am the mom who was indeed surprised, and disappointed, by the resentment–or even the downright hatred–I have seen at times toward my role in my children’s lives as I fight this fight. The snubs may be expected by the world that has never been faced with disabled: they do not come so much from there. The truly nasty sentiments are voiced within a divided disability world, one that resents me and what I stand for.

Are we stealing from those who need it more? Is that it? Sometimes parents are successful in their quest for funding their children’s programs. Sometimes they are powerful already, have connections, have time, have money. I sometimes speak for my children, and I do my best for those words to be what they want me to say. I am still suspect. I have consulted with medical doctors. I have attempted to find miracle cures. I have accepted my children. I have tried to find a place where we fit in.

I am the mom who is absolutely dismayed as I knock at doors to a disability community that in many cases have been shut to my children (future self-advocates), because they are children, and because our family represents something that does not seem to fit into that same civil rights movement. Maybe my children will never understand the same disability culture, because they have never been forced into an institution, because the medical community is more understanding, because parents are more knowledgeable, because schools are mandated to educate in the least restrictive environment… because the efforts of disability rights advocates have been so successful. Maybe my children cannot understand the fight of those before them, because they are living in that better world.

It is still incredibly difficult for adults with disabilities in the United States. Services of all sorts between the ages of 22 and 60 are pathetically underfunded, and very difficult to get if a person does not remain in poverty and have the right type and degree of disability. I imagine in the lives of my children that my younger son, whose developmental disabilities are significant, will receive some services throughout his life. My other son? Governmental responses to adults with mental illness who do not have a lot of money seem to be more commonly provided by the Department of Corrections than the Department of Mental Health. On the other hand, maybe he will transcend his disability to the point that he is not defined by it. Maybe he will fit in. But not into the disability culture. Is it possible that people with my children’s disabilities are still excluded from the disability world, too?

And if my son with mental health issues fares less well? If my son with developmental disabilities wants more? Will my children, who need me now, have a place to grow up at all? Will they ever be allowed to enter into the fight themselves? Will they be allowed a place as adults alongside adults with physical disabilities whose fight is viewed by the non-disabled rest of the world as a similar fight? Or as they become older, still limited perhaps in their ability to be independent, will we parents be empowered with them, to help them change the world? Are we resented by those who can advocate for themselves when we do stand beside our dependent adult children and help them have a voice, too?

Are people with disabilities invisible? Sure they are, in some worlds. Do they have a voice? Some have their own voice, accessible to all, and thank God for that. Some have words and communication beyond head butting and screaming, and do not need to find another way for their words to be heard. Some have teachers and parents and others who understand that the head butting and screaming are forms of communication, frustration, and their voices get heard, on some level. Some have had the blessings and luck and education to have pictures, or communication boards, and some power that comes with just being able to express a desire in a more conventional way.

And then again, some still need more help. It would be a great injustice to state that even the most cognitively challenged individuals are unable to express wishes for their own lives (as stated here. But understanding these individuals can take time, patience, and love… and an accepting by others of the people whom these individuals love, and the role they play in their lives. It is not a loss of self to receive love and help. It is not merciful, pitiful, or less strong to stand up with another person beside.

But most of all, for all our seemingly protective advocacy, parents want for our children to find peers who care about them, too. We want them to be adults, to have a community–we want communities that are accessible and accepting for everyone. We want what we want for all of our children. We have a dream. And we thought that adults with physical disabilities wanted that dream, too.

In theory, I believe they do.

In practice? How, in the land of the free, in our nation that so highly values individualism, independence, how do we reconcile the needs of our children for support, for a “caretaker”, with this idea of independence? How do the nonverbal communicate? How do the severely mentally ill find their way within the same world?

The independent living movement is a movement that has found its way within a system that it mirrors to some extent. Disability culture values the history of people who have been oppressed because of their disabilities. It values the creativity of its separate world, and values its separate nature. It wants to be a part, but it seems to want also to be apart. Does self-determination include people who are helped by the non-disabled? Does it include their families? Or will the non-disabled always be excluded from the disability table, because they do not share a common history? Do parents of children who accept their children with disabilities present a threat to their children’s independence, or do they present a threat to disability culture?

I do not have an answer to this question. The world is full of families limiting children (or parents, or siblings, or neighbors…) for the sake of safety, or their own guilt and worry. In the world of self-determination, the caregiver is often seen as the problem, is the problem. Sometimes, though, the caregiver is a bridge to worlds of all sorts, providing assistance from which a person may grow. How to know?

And sometimes, the disabled person, too, is his own worst enemy, his own biggest barrier. He may not see that by defining himself solely within his history, he builds higher walls than those he seeks to tear down. Sometimes the expression of his anger (justifiable though it may be) may alienate allies, and drive people away in fear and frustration, not only from the person, but from the movement in which that person defines himself.

To return to my original question, it is not so simple. Many people do not have separate disabilities: they may have physical, emotional and developmental disabilities, or any combination of things that might be part of our human condition. And even if a person does not start with multiple disabilities, years of discrimination and frustration in a physically disabled body can affect a mind, too. Cognitive impairments can affect movement. Treatments can do harm. The list goes on. The world is not so separate, after all, and we are all flawed as human beings.

But still, ask yourself the question. Mind or body? Do we value one more than the other? Do we value some people more than others? Are we relieved when an injury is not to the head? When a child is at least not retarded? When we ourselves at least still have our brain? We are human. We fear. We judge. We compete. We distinguish ourselves, define ourselves, isolate ourselves.

We can respect. We can care. We can live together. We can be a community.

Can’t we?

ch-ch-changes

It was supposed to be a lovely night. The weather cooperated, the trees, the soft breeze in the late afternoon. We were headed down to Providence for Waterfire, a lovely, sensual spectacle of aromatic wood crackling fire amidst the dark river water, the city, the night.

Last year, I saw it for the first time with friends, with laughter, joy. Romance would have been nice for the next time. Barring that this year, though, the kids had to see this–and wanted to–and we planned our outing. On the first attempt, it rained. Hard. Water. No fire. The next time, yesterday, only my older son was with me for the weekend, and I planned accordingly.

The trip would include a stop at a record store not too far from Providence, the kind of place that makes me swoon a bit. I spent a good deal of my teens and twenties in record stores, after all, and the faint musty scent of cardboard covering vinyl always sends me to a world that I loved so much, seek still despite the antiseptic jewel cases and online experiences that define music more appropriately today. This particular place grabs the scents of a thousand worlds, middle eastern, dust, heaven. We would do that. Then, we would have dinner downtown–my son’s choice–and walk down to the river. It was a perfect day.

For me.

You see, I had merely informed my son of the outing, not invited him. Because he no longer goes away with his sisters every other weekend, my entire life has been altered. I have not pursued my own life, so that I could attend to his. Not a small boy, but not a man, and with his challenges as I have duly noted in these pages, my son needed me, and I was there, by golly.

If you shudder as you think of what was happening here, you are not the only one. Somehow, images of me, old, living with an adult son who shuttles me around did enter into my mind. Yes, my son has bipolar disorder. Yes, he has challenges. Yes, he deserves his own life. And for that matter, I deserve mine. No, this protective stance, now, this brand of mothering/smothering is just not right.

It is fragile, I see, this line between caring and protecting. At twelve, my son was at his most vulnerable, his most depressed, his most lost. Shades drawn, he lay in bed for days, said he saw no point to life, and tried to hide from it. Wake up! Get well! Just act normal! And for all that, he could not, and I do not know why.

A lot of blame goes around when someone suffers from a mental illness. It seems so intentional, so controllable, that it just must be someone’s fault. For years we have tried to change environments, change food, change ourselves, change the rules. For years, we have struggled and disagreed and suffered and screamed and pointed fingers, and for years we prayed for help. In the end, the only thing we could do is simply to stop, breathe, and let it–this mental illness–be real. So, my son slept for nearly a year, prodded along, examined, and ultimately loved and cared for and eased back into life by people who understand him.

So, last night as I left the record store, drove past the exit for downtown Providence, north, toward home, I was mad. I was sad, self-pitying, and most of all, I was afraid. Things have been so much better, even with struggles. My son wants to be out more, to look nice, to do things. Life is not perfect, but my son wants more of it. This is so much more than he could do a year ago. So, here we were, lovely evening, about to enjoy life, damn it!

“Mom, no one goes out with their mom on a Saturday night!” Hmm… sounds strangely… normal. “Mom, I didn’t want to hurt your feelings, but I hate old records. I want my own friends.” Yes, it sounds like a teenager. “You can leave me at home. I’m not a baby.” Maybe he is right.

No, my oldest child is not a baby. He is bigger than I am now, and shows me computer games that he creates somehow, magically. I have no clue about gaming, 3D or otherwise, but he does, and I have to admit, I have come to love Mario. He tells me he wants to do this for a living, and sits with books of code, then comes to show me how he makes a car turn more sharply when its speed increases. Clever, and certainly not coming from me.

Somewhere north of Attleboro, I have calmed enough to listen to my son, and he tells me he wants to have a life, an apartment, a job when he grows up, but he worries that he will not be able. Secluded now, he fears the outside world will send him back to the depths he knew a year ago, and that the judgments will be as harsh as ones he has already known. At the same time, though, he is asking me to trust him.

Near Medway, I feel the night air as the sky turns to a purple glory, and my frustration returns. A beautiful night, gone, wasted. So many nights, so many fears, tears, worries, and here I am, here all alone with nothing of my own to show for it. Sniff sniff. I am crying, and my son points out the moon. “Mom, you’re like that sky now, dark and sad, but we kids are like the moon that loves you. Look how beautiful the sky is.”

And with that, I see not a small child who needs me, but a young man who has a lot to give the world.

en retard

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.

rally round

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.

just another ordinary day

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.

accessibility?

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?

chins up

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.

to market, to market

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.