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It only occurred to me as I sat to write this what other fifteen-year-old boys are doing on their birthdays.
The cake is no doubt the same, or similar. And the family gatherings, too.
But not the presents. My son received only a small present from me, so hard to find the right thing–or something that seems right in a teenage world. Developmentally, he avoids most things boys his age like… but he is also no child, not anymore.
The other thing different is the utter lack of friends, at least friends his own age. If there were anything I could change in his life, this would be one of the first. It was not always this way. For a long time he went to camp, and we tried harder to create social opportunities. And then, even in the people who were older, the ones who taught him something, or who just had the patience to say hello to him everyday, he loved the interaction. I wonder now when he is alone in his backyard if he is sometimes lonely.
In August, it will have been five years since my son stopped living in my home, the home where his siblings remain.
I think back often to the day I made the decision, a decision that no parent should ever have to make. It came after I gave up a job that I needed, a job I think I would have loved, two weeks in, and already months of trying to be in school, make ends meet, care for everyone else… I think back to the thirty-one people I interviewed for personal care attendants, the ten who took the job, the nine who quit only days into the training process. I think more often of the one who stayed. She was wonderful, but obviously rare. It really does take a village, and the village where we live was a difficult one, with a few ogres, too.
I look at my son now, at age fifteen, and think back to him at age ten. Five years, and he has made very little progress in skills. He has no meaningful mode of communication, save a few signs, his own sense of humor, anger. (This is the other big thing I would change in his life if I could.) He has little stamina for walking, hardly remembers what sidewalks are for. He can only help a little to dress himself, is no longer toilet trained at all. The list goes on, the small steps we used to make toward his independence–not complete, but better.
I know people try, and people burn out, too. The day-to-day is love, that is sure, but it needs so much more, so much.
I miss him, and wish for so much more for him on this birthday.
I wish for a world that believes in his future, for one thing–a world where community-based services are the norm, and not a private expense, or a fight to receive. I wish for a world that wants to hear his opinion, that works hard to find the ways to give him a voice, a way to communicate as completely as he wants to, what he wants to.
I wish for a world that did not stare at him.
I wish for a world that works to remove barriers, a world where he is no more special than any other fifteen-year-old boy.
I was driving home from dropping my older son off at a girl’s house in far-away Salem this Saturday when I turned the radio to This American Life’s rerun episode titled “Unconditional Love.”
The program had played about halfway through, and as I heard those familiar wishes of cures, and the acknowledgment that all too often the promises of recovery feel empty, I recognized it: autism. It touches so many of us, so not surprising to hear This American Life touch on it, too.
As the story went on, though, the sounds, the descriptions, the violence and the frustration all rang through my ears so true that I could no longer drive and found myself on the side of the road in Revere, listening to that so-similar story, staring at Revere Beach on a cool day, thinking that fall is beautiful, and yes, I know exactly what the family interviewed is describing.
I recently found the letter that I sent to my ex-husband on the day I realized I could no longer care for my son in my home. I have wrestled throughout these three years many times with the notion that I was never mother enough to love my child. And then, he visits on a Sunday, and I kiss him goodbye, exhausted from some small effort to bathe him or change him, and I realize that I was doing it full-time for a long time, and that my son needs so much more help than a parent alone can provide.
I look at the other kids, their needs, their significant needs so much of the time… and I realize that I could never do it. I tell myself this, over and over.
And still, though it makes logical sense, it still hits me right in the guts when I forget my mantra.
I heard the story that the family on TAL tells… the son better off in the end, the brother and parents able to survive. I feel it, wish that this part were my story, as well. I wish that I could see the improvement–in quality of life, if nothing else–and feel peace in that, in life as it has gone on without him here.
But it takes a village, as they say, and I am still not certain that my son has that village. In fact, he has no meaningful form of communication now, after years of suggestions and recommendations. And sometimes I wonder–is it best to let him be? Is it really best to provide for his immediate happiness and to ask for no more than that?
I never thought that was best, and it is that never-giving-up, perhaps, that might have killed me more than any of the physical demands–or is it? I found myself pondering the miracles we hoped for, the dreams we tried to make true. I remember waiting for the dreamed-of early intervention, and the clock ticking, like a bomb, a door slammed shut. Sometimes I still wonder if that is where it all went wrong.
The radio episode quoted a New York Times article about this very subject. “Let me hear your voice,” the books say, and we patiently sit, drive for hours, give up entire segments of what we used to call life, to try to help our kids find that voice.. My son has said a handful of words in his time, but while he can call out a highly charged and meaningful utterance once in a blue moon, he cannot tell me when his leg hurts, or when he wants to go to bed. It is all show with none of the tell if my son wants something… if he can show me. And other times, he can hit his head against the wall.
So many things remind me of my son and the challenges I faced with him–yes–but more than that, the challenges that I see in his future as he remains unable to do so many things that I once hoped he would be able to do independently. I question myself in these moments, and do not want for anyone to tell me that my decision was right, or good. But it was hard. I think, sometimes, that I must always remain ambiguous about my decision to let go… or I will indeed let go also of being the parent who loves her child.
September 11 will forever be a day that everyone remembers, the words themselves indicative of a time of separation, where everything before seems somehow different from everything after.
I think of this, remember the clear day vividly as I dropped my four-year-old son off with his aides at the preschool down the street–his best year by far in my memory–and took off down the road, turning on the radio, and then hearing it all, first one plane then another, watching on the gas station television as the towers toppled and burned, so faraway and yet so close.
But another memory always comes back to me on this day, and it is not the one of the day itself, but of the same day, one year later.
It was an anniversary that called out for remembrance, and our neighborhood school did not neglect this. They planted a tree. It surely still stands there, though the school itself has run down so much since we left town… So many things have changed there. But surely that tree remains.
It was a maple, I believe, though I do not really know because I was not at that ceremony. No. By that time, the school had requested that I no longer visit, because I made the paraeducator and the special educator nervous. I asked a lot of questions. I was pushy. I was the proverbial pain-in-the-ass parent.
So the tree ceremony happened, and I was not there. I realized this a little sadly as my first-grade son told me about it later that day, but it was a tree. And I remembered from home.
Later–several months later–the school newsletter came in the mail. On the front page was my intellectually disabled son with his aide, her hand wrapped around his as he stood at the edge of a hole, sapling in the middle of that hole. “… throws the first dirt on the September 11 tree” the caption read, and I looked, stunned, at my son, the special education mascot.
Rarely one to restrain myself in those days, I packed the kids in the car and headed to the principal’s office. There was no handicapped parking. I parked in the grass, as was suggested. In the days that followed, the principal, the special educator, the special education director, the superintendent all told me that they thought the picture would surprise me. (Well, they were right there!) They thought that it would make me happy. (A release form for photos would have made me happier!) They thought that it would foster a spirit of inclusion in the school, in the community.
Right. Wrong. I was disgusted.
And it turns out that my disgust disappointed a lot of people who felt that they could not please me. And indeed, I was cynical at that point, but only after watching as educational needs were neglected, after I felt I was fighting with people who did not even understand. It was a cynicism I would have been happy never to know.
I had witnessed the effects of the cute factor before, after all, that love for my diminutive son. He was sweet. He was affectionate. He was handsome. And unlike most kindergartners, he seemed happy to let people coddle him.
He needed help. He could not talk. He sometimes grabbed in frustration, sometimes bit, sometimes hit his head against the wall. But the sort of help he received involved doing things for him. The cruelest thing, to me, was that no one seemed to expect him to do much of anything at all. Even crueler is to watch people as they meet those expectations.
At age thirteen, my son still cannot talk. In fact, he has no meaningful method of communication–a fact that makes me reel, makes me crazy when I stop to think of how we could have let him down, how we could have refused him words for all these years, how so many seem to have just given up.
He cannot tell me, so I am not sure, but I do not know that my teenage son can understand the significance of September 11, and I am fairly certain that he has no recollection of his special day standing with the principal in front of the school.
Special. It is a word I come to hate.
I wish that people with disabilities could live lives free from pity, but with accommodations that allow as much independence as possible. My son never will be completely independent. But after all, we all depend upon one another in various ways, some days more than others. Interdependence is simply a part of being human, not something to be lamented.
Instead of being the developmentally disabled kid, the special kid, the kid who gets to be the emblem that all is right in the world–my son is… simply… my son.
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.
Can exhaustion be considered a sort of adventure? I doubt it, but it was the overriding feeling yesterday, as I chased a rather large boy through the house. This is the sort of adventure we always called “havoc wreaking” when it was an everyday mode of being. I look back and wonder.. but of course, he was smaller then, and sometimes I had help, the proper set-up, the ever-present vigilance that somehow slips when the necessity of it decreases.
I wonder sometimes how to make sense of it, how to make sense of a teenage boy with no words, no means to express himself other than this behavior.. and the best I can do is to follow him, engage him on some level, and miss him when he is gone. He has been gone from my home for so long now, and as he grows up I see the life unfold–a life so difficult in so many ways to everyone around him, and yet with the gifts he has brought since the day I first cradled him in my arms.
Is it an adventure to think of what might have been? I miss him when I let myself.. miss him and wish he still woke up in my house everyday. I try to reassure myself that it was best, that no one could keep going as things were… But at moments, I feel my heart pulled as I wish it could have been different.
My daughter cried out as her brother pulled her hair hard, harder, to the point that I had to pull the car over and loosen his grip on her. She sobbed the entire way back to his home now, sobbed and said she wished it were different, wished he knew not to hurt her, or steal food, wished that he could talk and “act normal”… We can help him, work with him to curb the behaviors, but ultimately, he simply will not be like everyone else.. nor will any of us be.
Is it an adventure to accept the challenges that life throws our way? to find the humor in a moment of utter despair?
I say yes, and still I say we grow stronger, more compassionate in these moments. My daughter, sobbing, sometimes looks at her brother and laughs at the silly things he does, explains to her classmates why it is cruel to treat anyone differently just because they have a harder time navigating the world, still tells her classmates to stop calling the everyday annoyances “retarded”. And she does not really understand now why these things make her more resilient, kinder, richer. Dark and light.. it is impossible to know true adventure without knowing both.
“I am happy.”
The last time my twelve-year-old son made a sentence was nearly five years ago, on my fortieth birthday. On that day, he said, “Happy Birthday.” It was a happy birthday, of course. What better present? A miracle. A temporary miracle, but not less special. Words uttered so rarely… words, feelings. I witness this, and it makes me shiver, then makes me cry.
I went to work today, still in awe of the moment my son had shared with me, went to see women who are growing old, holding onto their own miracle of life, and knowing it.
“Ah, when you go out to dinner, or have something nice in your life, it means more to you!” one speculated. I never let people so close to me, not at work, but sometimes it is impossible for them not to see. Yes, the sky is bright, the rain is beautiful, the world is warm and wonderful. And my son said he was happy. He said so.
I am happy, too.
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?
Seventh grade French was a good place for the snickers of embarrassment. It was bad enough to be required to speak at all in a class (10% of the grade). In the world of French, words sounded weird, or too much like embarrassing words in English. Imagine being twelve, and being called on to say pu as you learn past participles. Anticipation of the dread word would force hands up early in desperation, just to be called on before pouvoir came up. There were always exceptions, of course, some wise guy who knew that brazenly answering the teacher, intentionally missing the correct way to say u would prompt a fifteen-minute pronunciation exercise. “Étudiants! Say ‘ee.’ Now say ‘oo.’ C’est ça!.” But you had to admit, some of the expressions were downright hilarious, and one of those was what you had to say to the teacher those days when your locker wouldn’t open, and you were still out in the hall when the bell rang: “Je regrette. Je suis en retard.” Back then, that kid in the back of the room would whisper something like, “Oui, tu es un RE-TARD,” and everyone would start laughing. It was funny, right?
I had hoped we had all outgrown these things, and that our world had left that RETARD word and all its nasty connotations behind. It is fine in French, when it is pronounced differently, means something different, and you are truly late, not developmentally DELAYED. Just late. It is not a word I was ever allowed to use in English, even back when I was growing up. I just didn’t say it. I thought it was gone. It was a word I had never heard from my own kids… my daughter asked me last year what it meant. I was happy that day, glad she had not been subjected to the taunting disgrace of comparing a friend’s missteps and mess-ups with a person who has a developmental disability. Here in Massachusetts, the Department of Mental Retardation changed its name, admittedly late in the scheme of things. I remember moving to this state, looking for services for my son, shocked that a progressive state called its department that, and at last, it does not. My own kids were completely aware of the real difficulties their brother had in learning things, his inability to speak, his retardation. But the word itself shocked.
My oldest boy hit middle school, where to my dismay I learned that the word had not been shelved. Oh, no. RETARD is the term for the kids in the support class. Not only that, it is also the general insult from one kid to another, or the complaint about an assignment, or anything a kids does not like (“This is RETARDed!”). It is even a term of understated endearment, as kids call one another RETARD, shooting baskets and missing, acting goofy, but still liking one another all the same.
I banned the word, reminding my older son of his younger brother, and how the word hurts him. So instead, when my older son became clinically depressed and felt friendless, he began to use it on himself.
The word started popping up everywhere–or maybe I just then noticed it–in shopping malls, in school halls, and yes, in movie theaters. Had we regressed this much? I wondered. Have years of special education mandates and inclusion gotten us anywhere? It seemed even worse than when I was growing up!
And later, as my older son learned that his middle school felt they could no longer help him, and he was transferred to a private school that could more appropriately address his mental health issues, he told me that he went to RETARD school, and that was what all the kids who went there called it. My younger son, the one who truly does have an official diagnosis on paper of “severe mental retardation” has never called himself a RETARD. He cannot. No, and it would seem that it is not even an accurate use of the word now. The word seems reserved for kids who are not retarded by diagnosis, but disabled nonetheless by their own self-image. How sad that these kids–my kid!–hate themselves, and how sad that RETARD is the best word that they can find to demonstrate exactly how much.
So, my children, who liked Ben Stiller in “Night at the Museum,” are not going to see his new movie. Nope. I imagine that “Tropic Thunder” really could be just as hilarious as it is hyped up to be, but I also fear that the satire involved–the fun poked at the portrayal of the mentally disabled and African Americans (and even Tom Cruise in a fat suit)–would simply go way above my kids’ head. I will not let my kids laugh at someone imitating the stereotypes that hurt so many people, that perpetuate the habit of calling someone a RETARD.
Of course, I wonder if the satire intended is not going way above a lot of heads. I wonder if the laughs really are at the expense of the intellectually impaired, and not at the finer idea of how horrible it is to use the stereotypes for personal benefit.
The outrage is there for this movie, I know, with statements made by Tim Shriver of the Special Olympics, and boycotts planned along with demonstrations by ARC chapters across the country. I am angry about the pervasive acceptance of discrimination to people with intellectual disabilities. I am angry that the word RETARD is tossed out cavalierly. But I am not surprised that this movie was made. I am not surprised that some people undoubtedly think that watching Ben Stiller act like a RETARD is going to get lots of laughs, and lots of money. I am not the least bit surprised that this pillaging of the self-worth of people with intellectual disabilities would be acceptable, if the slur is even noticed at all. Why would we not accept this, if people with disabilities do not already face discrimination everyday of their lives already?
Reviews of the movie and comments made in reaction to these protests do not encourage me. It seems that there are two sides to this issue that prevail. Either it is completely unacceptable to use the words and stereotypes for any reason, or it is fair game to be mean because political correctness is “so 90s”. Neither, I think, is right.
Indeed, I do wonder, as the protests continue, if this is what Ben Stiller had intended. Reading the reviews, I see that the movie makes fun of the ridiculous measures that actors will go to for that extra edge, that Hollywood will go to for another hit. It seems that there are stereotypes abound in the movie, from the subject matter (Vietnam, complete with apocalyptic helicopter shots and soundtrack) to all the characters. An actor in black face in this day is ridiculous, and yet here we find Robert Downey, Jr. surgically changing his skin color to play an African American. One scene in the trailer finds Downey humming the theme to “The Jeffersons” as an African-American actor questions Downey about his stereotyping of his background and culture. We assume in this scene some understanding that we have learned from “Silver Streak,” where Richard Pryor challenges assumptions himself as he teaches a black-faced Gene Wilder how to act the part. But the RETARD act is still out there, ambiguous. I imagine that no intellectually disabled person offers similar feedback to Stiller, but in so many cases, that person could not.
Some of us become voices for our mentally disabled family members, assuming that we ourselves know best for them. Sometimes we do; we know how to hear unspoken words, and read picture boards or hugs. We want to protect, and we want the people we love to have good lives. We fight for the education, for the medical treatment, for the jobs and the housing, and in the end, we fight just for the right of our family members to be considered as equal human beings. The word RETARD persists, and its associations reach farther.
I wonder, sometimes, in our fight, if we do not do more damage. Our children may be fully included in a classroom, but out of some sense of privacy, or dignity, or legal ramifications, we fail to tell the other children how our children are different, why they behave the way they do, why they talk funny. And they do. We insist on these rights, and yet push for more assistance. And yes, we do have rights, and we do need more help. But we sometimes fail to step back and understand those who have not fought our fight with us. We assume everyone will understand and accept, just because our children are present alongside others, but we speak so much a language of vague acceptance that we sometimes forget to address the specific.
My daughter, exposed as she always has been to disabilities of many sorts, came home in tears one day after a boy cut off a piece of her hair. This came after repeated efforts by adults to address the boys’ impulsivity and distracting behaviors. My daughter was tolerant, and liked this boy, did not think of him as different… and yet, that incident scared her, as it would have with any child. My daughter thought then that he was just mean and unpredictable. The adults in charge apologized–they were wonderful–but I knew the situation all too well. The mother was always trying, balanced between being involved and being overbearing, obvious in her efforts to help her son. The boy himself was full of life, full of questions, quick and bright. Kids may care, if they know, but they may be annoyed if they do not. They probably did not understand how hard it was just for him to sit still with so much else going on. So often we do not understand enough to know how to be a friend, and if the boy continues to annoy his peers, and we continue to avoid the discussion, he will at some point be called a RETARD, too.
My own younger son, nonverbal and fully included in his kindergarten class years ago, pulled hair and grabbed food from other children’s snacks. Yes, his classmates understood something, but he was never truly included, alone in a crowd. Either he was avoided (and this happened more as the year progressed), or he was someone’s “best friend,” not unlike a class pet. In the worst incident, I was shocked to learn–by seeing it in the school newsletter–that my son had thrown the first handful of dirt on the 9/11 tree. What a picture of compassion, my retarded son, sending the school’s tribute to people who lost lives and family, to our inclusive nation. He became the special education mascot, for a school that was not coming anywhere close to meeting his needs. The mental retardation discussion, of course, was off limits for his classmates. And now when he is out, squealing in stores, grabbing, laughing inappropriately, someone may wonder what is wrong with him, but I have never heard anyone call him a RETARD. Maybe people do call him that, but not to our faces. Names can hurt, but they lose their bullying power when the person at whom they are aimed cannot respond. No, the word is rarely used that way now: but we evoke the image of my son and so many others each time we use it to mean “stupid.” After all, what else could be a worse insult?
Most people are not completely insensitive to the humanity of people with intellectual disabilities, but they may not know much about them. They may have a vague sense of the nonverbal outbursts, or the flapping, or the diminutive status assigned to so many, and they have indeed generalized their experience to a Hollywood moment, a Rainman perhaps. Who is to blame people who simply do not know which particular stereotypes are part of the diagnosis, and which are individual traits? The world of disability, of developmental disability in particular, is a world that remains separate, if more common. Self advocates with milder retardation may do well to stand up and tell about their struggles, and demand equal treatment, but the more impaired cannot. Some families are just plain exhausted to do it anymore. And sometimes we thrive on these stereotypes. The rhetoric of retardation is exploited with the best of intentions at times, in advertisements intended to demonstrate compassion, in fundraising efforts, in political runs. A good person includes these people, we say, and we accept the differences. This is the world as it should be… and yet, it is not the world now. Stiller’s performance and use of the word RETARD is sad, perhaps, but not sad because he performed it–indeed, there may well be a greater message here. It is sad because the perceptions and expectations he depicts are true.
If Stiller’s movie is indeed a poke at those who exploit the vulnerabilities and differences of others for personal gain, then maybe Stiller has advanced a conversation about prejudice to a community whose time for human rights has come. If so, rather than condemning the film, we should be engaging in the dialogue it opens, and challenging in our own lives the assumptions we make about people. If so, we should question the use of the word, used not so often directly to the group of people it originally described, as much as to condemn more generally. Why this word? What is the underlying message every time we use it?
We hate the word, but we fear the concept. Even within disability communities, it is not uncommon to defend the intelligence that others just do not see. A person may have autism, but some justification of worth comes from showing some qualities that prove high intelligence. A person with cerebral palsy may have difficulties moving or speaking, but it is all right, if the glimmers of a brilliant mind are only difficult to understand… No, these people are not RETARDs. But strip away all that underlying brainpower. Assume the worst. My child really is retarded. And still I love him, with his huge heart and ready hugs and perseverance when learning is such a struggle. I cannot pretend that beneath his nonverbal exterior he is doing calculus in his sleep. But he is still a person, and unique in the gifts he brings to this earth. He is retarded, but he does not deserve to be reduced to the notion of an unwanted RETARD… and that notion just needs to disappear. Calling someone a RETARD seems easier than admitting, “I cannot understand you.” Calling something RETARDed seems less dangerous than saying, “This makes me mad.” If challenging the stereotypes and our use of them is indeed his intention, Stiller has achieved the Horatian goal to please and to instruct. If, on the other hand, Stiller allows himself simply to be lauded for pretending to be a RETARD in the most crass way possible, and if the best that comes of this movie is for groups of high school boys to imitate Stiller’s performance and feel entitled to abuse people with developmental disabilities because of the example, then not only has Stiller failed in his comedy: we have failed as human beings.
Now is the time for all good men (and women) to come to the aid of …. one another.
I can type pretty fast, but I never really stopped back in high school typing class to think of what some words really mean, much though they may have been tapped into my brain. Back in those days, civics lessons were an enormous bore. History was only abstract dates and places, even with animated discussions from fine teachers.
The problem, I think, was the abstraction from the causes we were discussing, and also the idea that engaging my government could be bad manners. If I were to learn it all again, though, I would hope it could be more real… I would want to meet the actual people who challenge their government to try to make things better in the world and let them tell me why they do it.
I watched a lot of people doing just that yesterday, at a Statehouse rally for a little piece of legislation that could make a big difference for people who make a difference every day.
Senate Bill 65 is a bill that would change the way that agencies that provide human services can get paid.
For an outsider to this whole complicated world of human services, this whole issue seems so abstract. It seems so easy to imagine mismanaged agencies, high-paid executives bleeding their workers, or irresponsibility of the state government that made the contracts. Taxes are high enough. Social service costs are out of control. Government is out of control.
Well, some of that is undoubtedly true. Like many of the people who have responded with letters and comments to other articles on the issue, I am none too happy about paying for the Big Dig, either. I wonder about the efficiency of government. I am exasperated by the services offered that often do not match the needs of my own kids when it comes to human services. And yet, in this imperfect system, I still see a dream. I still see what our government should do for us, particularly for those of us who need help the most.
Now, if you are one of the employees earning around $10 an hour to provide direct care to a person who needs the help, the abstraction around the issue completely disappears, as you struggle to make it while doing one of the toughest jobs you could ever love. If you are trying to manage one of the human service agencies, budget reviews must bring you to tears. How do you do it? And how does it hurt to cut first the desired things, then the needed things, then still not know how to juggle it all, trying to figure out how to pay for rising fuel costs, rising health insurance costs, the costs of absolutely everything. Most of us have gotten a raise since 1987.
Two years ago, we saw similar alarm from direct-care workers with the Personal Care Attendant Workforce bill. This legislation was different: aimed at a state program where people with disabilities directly hire the people who work with them—at a rate determined by MassHealth (Medicaid). Personal care attendants struggle still with the $10.84 rate that has never changed as long as my son was in the program. The bill did pass. Our legislature (if not our last governor) did recognize that people who care for people need to earn a decent wage, have benefits, such as health insurance. They recognized that the people who hire personal care attendants need to have a better way to find them, and to train them. These facts were recognized, but the Personal Care Workforce Act remains an unfunded mandate. (That is next week’s rally.) A labor union is still pushing, and workers elected to join that union. A workforce committee meets on a regular basis, though I no longer go to their meetings. But damn it, it is still hard to find personal care attendants! I know. I have tried.
Senate Bill 65 should pass, too. It is only fair for agencies to be allowed to negotiate fair contracts based on cost of living, and not a pre-set rate from the days when we were humming along to “Walk Like an Egyptian.” The Simpsons was not even a regular series back then! The Berlin Wall was still standing, and gas was under a buck a gallon… but I digress. We need support from legislators, and recognition of the dire straits that the human service industry is in.
Still, saying that agencies need more funding to survive is so obvious, but somehow, finding that money is not obvious at all.
I have lived it firsthand, experienced the effects of shortages in services available to people with disabilities. My own family has been waitlisted, had services removed, watched as no services were available, let alone appropriate services. I have lost a child in the process, as I gave up custody in the wake of insufficient services in my home—a loving home that worked all right when we had the help we needed.
I look at the future for my kids, and for others around me. I look at people who are getting older, at families devastated by trauma of various sorts, at nonverbal adults, at teens with mental health issues who are bounced around various systems without the help they really need. How much does all that end up costing society?
What kind of people are we just to turn away from these issues? So many people do want to help and do care. So few people can do it for very long. So many agencies drop services, or are forced to draw the line with the numbers of people who can receive services.
Senate Bill 65 can keep agencies from collapsing. We absolutely have to keep the human service industry from falling.
But then what? It is up to us all to fight, to pay more, to have bad manners perhaps, to demand better services, services for more people. We have a moral responsibility to value the more vulnerable among us… to help them be strong, to help our society to be stronger, if only with a little help.
Yesterday, I found myself hopeful, excited by the symbolic gesture in a new name for the Department of Mental Retardation.
Those hopes were dashed when I saw the final Senate budget this morning. Despite amendments filed to restore cuts to crucial programs, those cuts remain. The budget for human services overall is not only disappointing; it is cruel. Some gains are there for select programs, but it sure hurts to look at the things that affect daily life for so many people, and realize that belts will tighten even more, and some will go without… again. I know that the economic realities are hurting everyone now, but these are programs that were suffering through the best of times. They may well now be on the brink of collapse.
For all of the happy moments we celebrate in symbolic gestures like inclusion classrooms, we continue to underfund programs that help people with disabilities. The ultimate price of this systemic abuse is high, as human beings lose their ability to work and to live somewhat independently. It trickles down levels, making the doling out of portions into a game. And far too often, those who figure out how to play that game and have the time to devote to it beat out the ones who need help the most. More and more families find themselves also unable to work, while the care of a loved one falls on their shoulders. We have let this situation grow increasingly worse for years–at least twenty years now. The crisis in the economy only intensifies the situation, as competition for those dwindling funds grows, too.
Names mean a lot. Gestures mean a lot. Now let’s put our money where our mouth is.
