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All last week, I found myself thinking, rethinking which parent the daughter chose at the end of A Separation, as well we were led to do throughout the film. In fact, the entire movie was an experience of trying to remember, exactly, wondering who is right, if anyone ever can be right, and what sort of a world leads people into these situations to begin with.
Beyond the separated couple lie the two people who need them most, a father with Alzheimer’s and a teenage daughter, one clinging to familiarity, one with a leg in the future–a future that the wife sees better somewhere else. And beyond the whole family lie those who struggle to survive as they take enter the family’s lives, in a job that ultimately ruins them.
It is a different world, Iran, and we shake our heads at the frustration of women as they are silenced, as they remain modest, as they ask permission, constantly. We shudder at the thought of a debtor’s prison, now.
And yet, is it really so different? the anguish of having to choose, the desire to shout at a system that has little patience for the real world–for the real people in that world–that exist in spite of its ideals, its rules, its allowances?
Are we so much better? I wonder. The man with Alzheimer’s could have been wandering from any neighbor’s home right now, perhaps with too few options available, affordable, a family trying to hold on. Perhaps that neighbor has a daughter, too, one whose mother watches as her once-guaranteed rights are threatened, yes here, yes now.
Riders who share the road with me down these small downtown streets fall into two categories: those who are riding for recreation, and those who are riding for transportation.
Recreational riders wear helmets. Transportational riders do not–not around here, anyway. Transportational riders also wears jeans, and ride on the sidewalks. If there is no sidewalk, they ride on the walking side of the street. They have crappy bikes, and often look as though they really are not going anywhere in particular. Or maybe they are going places they would rather not go. Once I saw a guy smoking a cigarette while he was riding. These transportational riders are never female. Not around here, at least, not so far as I have seen.
I like having a bicycle for transportation.
When I used to do it often, I wore my bike-functional work clothes, and a helmet. I had waterproof gear, and a lock to guard my precious bicycle. The place I worked had a bike rack. I see this set-up pretty often in places like Boulder and Cambridge.
In the suburbs, though, riding a bike to get around is sadly rare, and questionable when it happens.
I wonder if we feel unsafe devoid of secure enclosures.
I, too, look at people on bicycles around here with suspicion. If they are not outfitted with high-end road bikes and Pearl Izumi, my first thought jumps to suspended license, and all the judgments that spring from that judgment. It is not fair, not unbiased, but possibly true.
I should ride my bike to work now. The should is an entitled opinion, I realize, bicycle riding activist more elite than the elite car driver. Especially when riding not out of necessity, but out of a sense of moral responsibility. Snob. That would be me.
The ride to my work is unattractive, and we do not have a bike rack, and sometimes it seems impractical when I am on the road a lot over long distances. Excuses. But pretty real ones: this town is just not equipped for riding a bicycle regularly–not sure the hospital has a bike rack. Does the mall? Shopper’s World? And gee.. is this the best place we can think to go? Actually, I would not leave my bicycle outside many of the places I go.
It is so strange, the things that seem undesirable in a town like this, if Shopper’s World is desirable. And then, I think about the things we value here in this divided town. I hate the division, and yet, I sometimes understand it. I hate the poverty and the reasons for it, hate that it is so hard to escape it, especially when immersed in it, hate that we scorn those who do not have, those who do not do, and at the same time make it nearly impossible to climb out of the hole once in it… And I hate seeing the bicyclist in jeans who meanders aimlessly, lawlessly upon the town sidewalks.
I wish that he rode with some dignity. I wish he had a helmet.
I wish he had somewhere to go.
Lately I have been wondering. Wondering and digging…
My work makes me question all sorts of things around need, especially the lack of what people need when they have an accident or get sick. It is a context that my life leads me into almost every day, and one question keeps coming up, over and over.
But first, a little background: I work as an “Options Counselor”–those options being any alternatives to ending up long-term in a nursing home or other institution. So, I talk to people, who generally have had some sort of life-changing event, and give them information to help them go home and live their lives. So, I visit them wherever they may be for the moment: in hospitals, short-term rehabilitation units, their homes… anywhere. I see them once or twice, call, make referrals, poke around for resources (which at times feels like pulling rabbits from hats), and hope that I have opened the doors they wanted open, left things clearer, more accessible.. I do a follow-up call after a month, and life goes on, hopefully with what they need.
I see a lot in these visits, and there is a pattern I figured out fairly quickly as I went from place to place. So, a person is in the hospital. If not ready to go home, that person usually goes to short-term rehab, stays for four to six weeks, and goes home with visiting nurses and some in-home therapeutic work, home health aides, for maybe six weeks.
Well, that is what I used to anticipate. Last fall I started noticing that many people thought they had been admitted to the hospital, when in fact they were there under “observation.” I never knew there was a difference–I can tell you that if I were lying in a hospital bed, and a nurse came to tell me I was there under observation, it would never cross my mind that I had not actually been admitted to the hospital. But beyond whatever billing goes on for the stay, there is a difference that many people discover as they are being discharged: observation does not allow for a person to go to short-term rehab, or to go home with nurses.
It seemed easy to think that it was the hospital making these decisions as a cost-saving measure, or perhaps to avoid fines for frequent readmissions. But when I asked a few hospital staff about it, they claimed that they have protocols around who gets admitted and who stays under observation. And they do not determine these standards themselves. No. They told me that Interqual makes them do it.
Interqual, it turns out, is software. From what I read, it is software that has incorporated evidence-based practices into the decision-making process around admittance. It takes into account vital statistics, symptoms, and chronic conditions. But what of the human element? I wonder about that, have read a few articles that explain it a bit more, but with no background in this decision-making process beyond a doctor making a judgment call, I am still trying to figure it out. And why did it seem to change last fall?
But in the meanwhile, things have gotten even worse. Now, people seem to be leaving the short-term rehabs much more quickly. My evidence is all anecdotal, but I find it hard to pick up the phone and hear the same story from another person, time and time again. Again, it seems that there are very strict guidelines around actually rehabilitating people in rehabs. So, if from week to week, you are not showing measurable improvements, you cannot stay: the “rehabilitation” phase is over. Or so it seems.
This is where I am digging now. If anyone has any ideas, send them along. In the end, I wonder how these changes will help, when on my end what I am seeing are panicked families and unprepared consumers returning home without supports in place. Not all the time, but enough of it…
More on this to come.
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.
Is it possible I reached #30? It is, because I started a few days in advance–a warm-up to adventure I remember now, back in April. So much seems so long ago now.
Today I looked back at the early entries. In reading, it seems I am still the same–a dreamer at heart with a real life to manage. But strangely, the real life is quite different now.
Among my contemplations: I have tried in the past to be the PTO mom, volunteered in my kids’ schools. I have gone to meetings in town, tried to participate in the process to some extent. When I go to the concerts on our town common, I see many people I know. And still, after all this time, I find myself somehow on the periphery of anything I could call community. I have wondered why, and then was struck by a few things, things I never thought applied directly to me.
One is the fear that seems pervasive in the town where I live. My house is on the south side. My kids’ school is on the north side. But whether north or south, there is a great divide that seems to affect everything, including the areas of town where people from one section feel comfortable visiting–or even driving through. The divide may start with a few resentments directed toward the communities of immigrants that sprout here, often developing deep, deep roots, with or without the desired documentation. But a few vocal resentments against one group may also give validation to all sorts of more silent fear–of anyone who is different, whatever different may mean.
So, as I have tried over the past several years to live to my beliefs, I find myself turning into some sort of liberal social-worky type advocate who does things like remark to the principal that the reason that the kids’ parents do not show up at a meeting at 6pm include such ideas as 1) they are still working, 2) they never understood the letter home for various reasons, including perhaps the fact that they do not speak English, 3) they do not have transportation to get to the meeting, 4) they are afraid of feeling rejected and judged. Again.
Now, I believed all these things for a long time, but as I have lived the life, living in an interesting non-suburban in the suburbs type neighborhood, single welfare mom (yes, the most humbling and necessary action I once had to take–so perhaps I am lucky), fighting for the various educations and services that kids with disabilities need– and then realizing that adults fight even harder…
I do not like to feel that my kids miss out because they are made outsiders in all ways–not fitting in with kids who really are in our economic bracket, but then not fitting in with the kids whose parents might have more similar backgrounds to those of my ex-husband and me. The operative prefix there is “ex”. Used to be. Used to be married. Used to live on the “nice” street. Used to not know about “special needs”. Well, that was then. This is now. So much is not so different, but just more apparent. That is a start.
In the end, the biggest problem in my own life is not the community, or anything else. The biggest problem is me.
For years I have passed for “nice” just about everywhere I go. It is easy for me to do this, because I like people. I really do, and I walk into so many different situations–have always done this–that I feel comfortable almost everywhere. It is the best thing about a life of drastically changing circumstances and living in all sorts of different places: never fearing “the other side”…
But at the same time, I suffer for this to some extent: I have interests that do not fit into neat categories, abhor certain things that moms are supposed to do, lament things that women are not able to say, or do, or be–at least not without harsh judgment. In all of this, I feel so strongly about wanting to see beyond boundaries that I seem never truly to belong to one group… People laugh and share experiences from the past, and I listen, but I cannot feel it–never went through so many of those rites of passage that seem to bind people together. It seems my life has been a series of interesting events… It has been a life of adventure from the start, a life of searching for truth.
Is it a necessity to fit neatly in? Perhaps. It has made me wonder, though.
I am not the only person who cannot be neatly categorized–really, can any of us? And for all the wonderful diversity I encounter on a simple bike ride, I wish so often for more pleasant co-existence. Can it happen here? I am not so sure. And this leads to other thoughts, including the idea of leaving.
But honestly. Have I done my part? I know that my niceness may grant me access at times, but far too often, I also do not state my mind because I fear rocking the boat that is already tossing on turbulent waters… And why? What is it that I fear by speaking out?
Is this still an adventure? You’d better believe it. Is it a matter of living here and living better, fighting for that? Or is it better to look outward, find better examples, better places to fit in? In the end, I am sure it is some of both. I love my job for the opportunities I have to meet people from so many backgrounds, to talk to them and hear their stories. There is something in that, some voices waiting to be heard. So many common threads.
I consider these things, and then think of what now, what more.
The answer lies in the stories… My story, yes. But the stories that weave together into a greater whole. My future is in those stories, and the stories of telling.
Does the process of examining a life, looking for adventure, end up inviting change? I wonder about this right now, as I watch my entire world turn upside down as people move in and out of it–mostly out, at least for the moment.
No one is truly moving out of my world, though; a friend has accepted a job in another state, and my two coworkers will be moving to new jobs that are not so far from where we are right now. School will end soon for my kids, and the daily routine will indeed change over the next two months. It will change dramatically on the surface, though the friends will not disappear.
I think of the many things that are brewing in my mind as I ponder the future and where I want to be. It involves changes far greater in my own life, and as I think of them, I realize that they have already happened. It perhaps is a matter of letting the colors flow in. If that sounds a little too esoteric–well, no: fuzzy–it is, though not in my own mind. So never mind about that.. it will become more apparent as time passes. The adventures of today are very clear, a matter really of letting myself be guided by joy.
The week has been difficult, watching not only as others move–though it is good that they move toward greater happiness–but still watching others struggle through situations that are unjust and cruel. And still, the hands reach out, asking for help, and asking for it from me. I feel frustrated at times, but incredibly lucky in that trust–the telling moment where I might be the difference.
Mostly, I have no idea what to do to be that difference. So I listen, I watch, I cry. And I tell their story. I feel burned out from it so much of the time, as though I have nothing left after walking away from situations in which I feel there is so much needed and so little I can give, or think of to offer. I feel burned out by the mere invisibility.. not so much of the poverty and the terrible conditions in which people live as the invisibility of the rich side of these lives. In every home I visit, I see the family photos, the tea brewing, the spices and the signs of life, the smiles and the hugs–YES, the hugs. It is a luxury that we share so rarely in our professional world, and it is so often that human contact that we need so much more. It is that human moment that we touch one another that the dripping faucets and the stained carpets and the dirt and the noise all disappear because we come together as people. It is the invisibility of those moments that I abhor.. and in this adventure of life, I wish for more of that. More of that coming together in the worst of situations. For that I always feel lucky as I move through the day, on the worst of days. And this, indeed, is an adventure.
Today took me back to work on a Monday, an event that affects most of us with the same sort of yearning-for-more-sleep-and-less-work reaction. But today I was plenty awake in the morning, and I wanted to leave the weekend behind. I was not in a particularly good mood, for reasons that I do not know quite how to define… a sort of malaise coming over me as I drifted off, wishing for things like perfect children who never fight, or lovers who massage my feet until I fall asleep after my bubble bath, or just a good conversation at the end of the day.
As it happened, I still slept well, and woke up refreshed and eager to do things like work out. So I did. And still.. I looked toward the paperwork…
Instead, there was a phone call. A woman had been discharged from a hospital. Could we help?
And in the semi-emergency mode we often assume, I called the woman and found that YES! she needs more help. Could I come soon? I went this morning.
And this is the adventure. My job involves calling, then usually going to see people who are in some sort of crisis. It is usually a matter of determining what it is going to take to help them stay at home, and not end up in some despicable facility somewhere. This is not always an easy task, though; lately it feels like a great deal of exercise in creativity.
But sometimes it is so obvious, so blatant that I am sure that something will work. Today was one of those days.
Unfortunately, the reason that I am sure in these cases that something has to work is that the situation has become so incredibly bad that I am enraged first that no one has noticed the dire need before me. The second level is when I realize that in fact, many people have seen the need, and addressed it, and then run into the same walls I find. Holes in services, or the wrong insurance… systemic failures, really. And then there is that whole other realm that so badly upsets me: the situation where the system is abusing a family simply because it can. And by “system” here, I mean some individual who becomes the Snidely Whiplash of MassHealth or a school district or some other such entity, but who ultimately is but a face of a problem… usually. Actually, there are a few real life Snidely Whiplashes out here, and as far as I can tell, most of them collect rent.
Some people are easy to abuse. They are weak, sick, do not understand English–or perhaps more importantly, cultural subtleties. They are trusting, then afraid, then confused, then in trouble. And this all seems to happen rather quickly, and rather stubbornly. And then, before you know it, someone is living in squalor not of their own making–the result of three inches of water standing in a basement apartment for two days straight. But more importantly, it is the result of someone more powerful choosing to turn a back… Someone is sick, dying perhaps, and in that moment, yes, it is easy for a landlord to say that he is not going to do anything–except perhaps raise the rent. It is easy for an insurance company to deny coverage for medical equipment. It is easy for nearly all of us not to see.
So, today was my day to see this… again. And still, I saw the smiles, smelled the rice and beans and garlic, and took the beverage that was offered to me. I watched as I saw the struggle, saw the damage, saw the kindness within–and the utter unkindness without. I listened, made a few suggestions, thought of an obvious one, and walked out after the greetings and exchanges. I walked out, walked to my car, drove away, and back to the office. I started angrily typing my progress notes, and as soon as I hit the list of illnesses, the housing situation, I thought of the smiles I had seen and started crying. I made my referral–this family should get some help–but will it be enough? I kept crying, thinking that human beings should be treated like human beings, always.
My work so often is an adventure, and I love this, but I so often wish that I saw happier days. But I do hear stories, wonderful stories. I am so lucky to hear them, and I cherish these moments that I get to hear people remember–yes–but more importantly, I get to hear them dream.
My daughter told me the news yesterday: no more band for elementary students. Her fifth-grade concert in June will be the last one.
A thousand similar entries to this are no doubt popping up across the country on mommy blogs everywhere… parents outraged by the lack of funding in schools to fund things like music, art, field trips, playgrounds. It happens all the time when budgets are short. Sure, it ticks me off, too. My older son enjoyed playing drums when he enjoyed little else. My older daughter thrived in the camaraderie of playing clarinet with her friends, even took extra lessons with the band teacher during the summer. In fact, as No Child Left Behind testing takes over the heart and soul of the place, the instrumental music program has remained one of the best things about the school… one of the best things my younger daughter will never know.
So, I react with sadness. I like the band director, a man who managed to move mountains to herd sometimes-unruly grade schoolers into a common energy, a musical moment–all with kindness, inspiration and patience. He worked magic. And it is this that I lament: loss of magic–or rather, the loss of respecting the magic of creation. In the times in life that we have needed help, music has always been here for us. And it will never disappear from our family’s life, nor will art, nor will the many things that have given me strength, strength in beauty. We encourage this love of art, though. What of those families who do not? or cannot? Again, we meet the discussion of elitism, of the inequity that remains despite NCLB, simply because some families are more able to support their children and their schools in creative ways…
But is this really a question about funding? It is pretty easy to justify the destruction of beauty by saying that we cannot afford it. But really! The problem is more deep-rooted than that, and I am not saying anything new. Our priorities are skewed, and they have been for years.
What I truly lament is that creation is dismissed in favor of the rote, of the machine-like. Rather than molding the energy of young people, school stamps it out. A while back, I had an opportunity to chat with one of my friend’s students at Harvard, a guy named Cevin Solling. Cevin made a documentary called The War On Kids, in which he examines the emphasis in high schools on fear and security–the loss, in other words, of learning. The film’s message is depressing, at best, a grueling comparison in the end of schools with prisons, which left me at the end pondering that perhaps prison is a less restrictive option.
It all made me start thinking, thinking about my own kids’ descriptions of the “community meetings” in the elementary school. They march in and sit quietly until the principal comes in: “Good morning, Mrs. …” Despite the friendly and hopeful messages, the meetings have a chilling Chairman Mao quality to them that sometimes causes me to have momentary mental flashes of small children in uniform bowing to a picture of Sarah Palin. The “Come Together” song may sound welcoming enough, but I can do little but cringe as I see the conformity in it all. Now, I think that all of this really is done with the best of intentions.. and yet, why do I continue to feel chilled by it?
My daughter, who is naturally shy and well-behaved in public, is rewarded for “being quiet.” It troubles me to see her so pleased–if temporarily so–in that comfort zone where she is so tempted to continue to say nothing about what she really needs, where she backs away from controversy, where she watches as another child who is much more overt in protesting his boredom gets into trouble repeatedly. In a sense, neither child is wrong; my daughter gets away with a great deal by flying under the radar, and this could happen no matter the circumstances. But what is the lesson here? Speak up, and you will be punished? I see the understanding on her teacher’s face when I go to a conference and beg him not to reward her for not being assertive… but I wonder at the same time if my request to encourage her assertiveness is edging toward child abuse within a system that so fears non-conformity.
I believe that individuals within this system–the teachers, the administrator, the school boards–come to their work with a certain level of idealism, a certain belief that their work will make the world better. They try. They succeed in many ways. I imagine that most people have an idea of how they would do things differently if it were not for …
Well, if it were not for what?
As a working, single mother, I feel so dependent on schools to care for my children that I scarcely have time to question them, much less start any grass-roots organization around change*… Are the kids doing all right? Do they seem healthy? reasonably happy? Or if not, is it a phase? Will the child “grow out of it”? It makes me wonder. It makes me wonder what would happen if we focused on learning, and not on running the school… Teachers, too, would be able to do the jobs they so want to do, to inspire, rather than being restricted to a regimen that may well suck the life from them, as well.
So, when I see the cutbacks in the schools–schools that by my standards have managed more and more to inhibit my kids’ creativity and sense of wonder with their rules and restrictions and schedules–I tend to see the drop-in-the-bucket cost savings as mere excuses for establishing a firmer grip, a more complete totalitarianism. Eliminate creativity. Eliminate recess. Eliminate the child. Eliminate, at last, the thinking adult.
———-
*And as I write, I must say that I actually have fought the schools, organized, demanded change and become political. And any parent who has ever faced the special education system knows exactly what I mean. As more and more children need Individual Education Plans, and districts become more and more desperate to figure out what to do about that, I wonder if this is not so much a problem about children’s declining health as it is a problem about the growing inadequacies in the “regular” education system itself. I would bet cash that the entire elementary instrumental music program for five schools costs less than my one child’s very necessary out-of-district placement. Would it be a necessary placement if schools were different? In many cases, yes. In some cases, certainly.. maybe not. This is a topic for another day.
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?
I am amazed still, everyday, at the full and utter abandonment our society encourages for those who find their lives altered in a single moment. Illness strikes, an accident, and life somehow becomes smaller in some ways. Alone, some face a future that treats them differently, as less human, simply because they need help. Indeed, this need is what defines us perhaps most as human.
Surprisingly, cynicism has not yet caught me. I see a rainbow of sorts, black and white and all shades of gray, a light however dim at the end of the tunnel. I remain astounded by hope and adaptation, and by the goodness of those who do care. I remain shocked by impatient staff who snap at people who have done no wrong, as much as I may see the plight of the underpaid worker. I remain shocked at the efforts of the kindest workers, underpaid, undervalued for the work they do in these most human moments.
We may find our humanity in our own moment of crisis, but perhaps a better measure is in our response to the crises of others. Can we forgive helplessness, or does it push us away at its demands for our assistance? Can we simply stop, listen, or are we ever distracted by the noise of a world that ignores all but the strong?
Listen. The voices are quiet sometimes, impatient themselves at other times. They tell stories, grand stories, of times not so distant, of people and faces that look different now, but still are a part of our own conscience, and of ourselves. Help. A small gesture, perhaps. A knock on the door, an errand run. It is the stuff that makes us alive and beyond appearances richer.
People age, more and more. People live through illnesses that would have killed them in the past. In this we may expect eternal youth and wellness, but in this life, extended, we are challenged, redefined. Challenge our humanity; let us meet the challenge. Forget no one, fear not, do not look away. Remember, this is us. It is our humanity, and it is the best thing we have.
