hope

In my moment of need, I found help. I am so thankful for that, for friends, for love.

But in the midst of it, I became distraught, scattered, hopeless. And my son knew it. He knew as he looked at me that I had lost hope, and I do believe it terrified him.

It terrified me. I was imagining a future that began with arrest, not finishing school, drinking, drugs, homelessness, disease, disability.

Stop.

A wise friend came to me and said: paint a different picture, one of focus and drive, of anger diverted into usefulness, of aggression channeled into energy.

Not such bad thoughts. Not bad to think that out of rage, goodness could surface. But then again, why not?

Thank you, friend, for reminding me. Thank you for giving me hope.

need

I find it much easier to run to help a friend than it is to ask for help.

It is to admit weakness, I think, vulnerability, need. And in my mind, it is so hard to need. Being strong feels like such an admirable quality, one that draws others near in joy, in times we want to cherish. Being vulnerable requires us to trust. And what may be more difficult, it requires us to hope.

There is a solitary quality to difficult times. Sometimes, others face their own fears when they encounter a friend who is no longer as they remember him.. Would I change so much? He suffers. My friend suffers, and it hurts me to see him suffer. And then, attending to someone else’s needs can seem like another burden. We fear being that burden ourselves. We fear wanting too much. Worse, we fear needing too much.

We fear being perceived as alone, weak, tired. I do. I want so much to call on those I love, and yet I fear that they will perceive me as a person changed. And in so many ways, these tests do change us. We struggle; we suffer. And in the end perhaps we end up stronger. Asking for help in these times can seem to be admitting defeat. But in fact, we may well be admitting our own strength.

I need. I ask for help now.

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?

unthinkable

The crazy thing about mental illness is that it is so often coupled with absolute and incredible genius.

Phil Spector was found guilty of second-degree murder this week. It was a horrible crime, though not inconceivable to some that Spector could have pulled the trigger that killed Lana Clarkson six years ago. It seems that there was not a lack of evidence that Spector was one troubled individual.

RJ Eskow writes about the verdict in the Huffington Post as the death of “madness chic”. It seems that the man whose first hit came from an engraving on his father’s grave had many demons. Family history, perhaps: Spector’s father got things off to a start by committing suicide. The stories pouring out during the trials and before were often–as Eskow notes–the stuff that celebrity insanity is made of.

But still, I doubt that “madness chic” will ever end. When I heard Spector’s name in the news again, the first thing I did was to dig up a Ronettes album. Guilty or not, Spector produced a sound that at its best is simply sublime. After all, I want a “Marshmallow World” when winter comes around. I want to believe in a wall of sound that is as great in the real world as the space it creates in my imagination.

Mental illness besides, it is hard to reconcile these things, the beauty and the terror. I do not know how we make sense of a world that seems damned to have both, and often so intricately entwined. Abusive relationships thrive on this sort of cognitive dissonance. So do all sorts of scams. We so sincerely want to believe that we live in the best of all possible worlds. We want there to be a rhyme and reason for all the bad things that happen to people. Somehow, there are no victims, only people who deserve it–if not in this life, then as punishment from a past life. How in our world could a nice guy hurt his wife unless she provoked him? How could a person who produces an eternal piece of splendor also destroy another person without justification? It simply doesn’t make sense, and we will defend the appearance beyond the facts for as long as we possibly can.

Come to find out, there is a term for this. “Magical thinking” (see Psychology Today‘s article by Matthew Hutson on this in the Mar/Apr 2008 issue) may well be our only hope. It turns out that at least to some extent, we need to believe in our good world simply to survive in it. But what then do we make of the incongruities when they slap us in the face?

We are shocked. We do not want to believe. We pray the facts are not true. And then, we grieve.

We seek resolution. In the end, life is nothing if not a paradox. In the world of creativity, then, believing in a sort of “madness chic” can make the bad-behind-the-scenes stuff all okay. Rather than pushing the starving artist and the eccentric musician to the madhouse, they go to detox, and reserve their place in our society. It lets us have our beautiful-beyond-belief, never-ending cake, and the devastation of watching as the artist eats at it himself, and with very bad manners.

The concept itself of “genius” was not celebrated before the age of Romanticism. In the Romantic view of genius, inspiration is not for everyone. Certain people have a gift above and beyond the previous conception of talent acquired through diligent practice. Gifted programs in schools now thrive on this notion of thinking “outside the box,” honoring the spirit of schoolchildren who do not sit quietly and learn, but who are bored and doodling strange pictures and tapping the other students because the classroom is insufficient for their advanced minds.

Pushing the boundaries is good, necessary, and hardly new: our world would have long ago become stagnant without it. In the realm of artistic expression, we cherish this creation of something new from nothing. It is the essence of magic, and it feeds our souls. Pushed to an extreme, in a sort of iconic worship of the creator, we may encourage narcissism. We may sometimes leave room for self-justification of criminality in some people–for some very real people, whose impulses good and bad remain all too human. Ah! but are these creators not greater than ourselves to some extent? Are they not immortal, if by the eternal existence of their creations? We do believe in these gods, if in human form. Perhaps genius trumps mental illness, de-stigmatizes it, at least on some level. At least, until something terrible happens.

In the real world, mental illness truly can be a sort of hell. As much as those who do not live with it on a daily basis may accept the illness of a creative genius, we who love a person with mental illness often grasp onto the rose that grows so improbably from the ashes in this hell. The beauty is sometimes the one thing that reminds us of our love. But it is never the whole story.

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.

dependent

When M. failed to answer the door, her daughter did not find anything strange. It was often that the old woman was napping, or upstairs and not quick to descend. A key turned the door, and all in the house was quiet. Did M. have an appointment she forgot to mention? Had a neighbor called? The youngest daughter opened the garage door to see if the car was still there. It was. And behind it, she found the carefully laid out cot, the empty bottle of sleeping pills. The keys were still in the ignition, but the gas had probably long run out.

The death was a tragedy, we all knew. M. was not so old, after all, in splendid health, we thought. It took a long time for anyone beyond the one daughter and her husband to realize that it was a suicide, and as it was, few people were ever supposed to know. The death by one’s own hands seemed too messy, too questionable, too unsuitable for a reputable family. And yet, the daughter who found her mother cold and inexplicably dead that morning said that she would have done the same thing.

Up to the time I knew of the suicide, M. seemed an amazingly resilient woman. Letters and other documents found after M.’s death hinted at a less than auspicious diagnosis, perhaps from a cardiologist. One thing was certain, though: M. had said many times that she never wanted to be a burden to her children or anyone else. She had enjoyed a high level of independence her whole life. What did life mean to her if she needed assistance?

A suicide must always leave questions unanswered, but the questions it poses reach far beyond the life that is taken. I was surprised to learn that the daughter so fully supported her mother’s actions. Her own pronouncement of similar suicidal intentions if faced with similar potential dependency cited anthropological examples of the practice of “going off to die.”

I was judgmental of the dead woman, hurt. How could someone I loved and admired not let the people who loved her actually care for her when she needed them? What makes life worthwhile? Can we even answer those questions ourselves?

Life can be intolerably painful in so many ways. I cannot imagine what for certain caused M. to end her life, or what I would do in her place. After the suicide, though, the context of the family began to make more sense, and I was out of context. Never being a burden seemed more a selfish thing, never allowing another person to extend a kindness, to serve a meal, to make a bed: not good enough, perhaps? Not thoughtful, but selfish. Always giving, but never receiving: yes! there is a selfishness in that. The familial stoicism was overbearing; pain, heartbreak and illness were impossible to discuss aloud, but were whispered in tributes to the character of those who hid their weaknesses. Bad things simply did not exist in that make-believe world.

Oh, demons exist everywhere, but they become dangerous when they are hiding. Everyone knows about the bear hunt:

“We can’t go over it. We can’t go under it. Oh no! We have to go through it!”*

Go through! Go through! Go through this life. Why hide? I want to love, and I want to rejoice in the real connections we have, the efforts we make, the love we give to one another… and the love we courageously take.

*From Michael Rosen and Helen Oxenbury, We’re Going On a Bear Hunt, 1989.

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.

change comes slowly

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.

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.