You are currently browsing all posts tagged with 'bigotry'.
Displaying 1 - 5 of 5 entries.

Bringing Neurodiversity into the Classroom

  • Posted on November 17, 2009 at 10:42 PM

A little boy steps off the bus, confused by his unexpected surroundings.  This year—the year he starts kindergarten—the bus stops at the backdoor of a new school, instead of the front entrance of his neighborhood school, after a much longer bus ride.  Maybe he knows he’s being ushered into this new school through the backdoor, maybe he doesn’t.  Maybe he even knows the classroom he enters is segregated from his peers.  We assume he doesn’t know, because he doesn’t talk about it, because he can’t talk about it.  You see, this little boy is my own son, and he is autistic.  We assume he’s unaware that he’s being treated differently (not equally), but we can’t be sure.  Of one thing I am sure:  If he’s not aware of it now, he will be aware of it when he’s older, just like the many autistic adults speaking in favor of neurodiversity.

Unlike past forms of segregation, my son doesn’t spend his entire day in the special education room.  He visits the regular classroom and his peers are told that, even though he doesn’t stay in their room, he is part of their class.  He comes in with an aide who helps him participate.  Then, when it’s all too much, she takes him away.  The school system recognizes his educational needs differ from those of his peers and claims those needs cannot be met in a regular classroom.  I know my son’s needs are not met in a regular classroom, but does that really mean they cannot be?  I grew up learning that “different but equal” is not equal at all.  Sadly, that doesn’t apply to my children or others like them, because our society fails to recognize people with atypical neurological development as equals at all.

Some refer to this forced inequality as disabilism and see it manifested in pervasive ways throughout our society.  Disablism refers to the societal tendency to single out, exclude or mistreat people with impairments, because of those impairments.  Segregated classrooms for the cognitively disabled are only one example of disablism.  Disabilism is institutionalized into the public education system, in part, by the behavior of teachers, service providers, and administrators that Dr. Thomas Armstrong, an educator and author out of California, calls the disability discourse, which he described as “an institutionalized discourse consisting of specific words such as ‘disability’ ‘disorder’ ‘deficit’ and ‘dysfunction’ to describe the lives of these children.”  These societal behaviors shape the environment in which all of our children learn and grow.  Telling children a segregated child is part of their class, while well-intentioned, still fails to integrate that child into their class.

Unfortunately, the regular classroom is not only designed to exclude specific students from the learning environment it fails to include any child in the learning environment.  The public school system is designed to teach standardized curricula.  It is not designed to teach the individual students expected to learn that curricula.  Individual teachers can transform that environment into something special, but this ability is not a requirement for employment and often the resources to do so must be found outside the public school system.  This fundamental flaw is not the fault of individual teachers, principals, or school boards, but is built into the educational system itself.

Our children are unique with individual needs that can only be met when they are treated as people, instead of a homogenized group.  Our children do not come standardized.  Yet, our educational goals and the learning environment we create to meet those goals are standardized.  Our children get pushed through the system regardless of what they learn.  Unless, of course, their needs stand out so much that the system rejects them.  The child who does not and cannot fit the standardized mold is diverted into the special education system.  There, they face the unfortunate reality that they are not deemed equal in our society.  They are different, but not equal; and disabilism and the disability discourse shape their futures.

Neurodiversity is a two-fold concept that can change the public educational system for all children.  Neurodiversity refers to a civil rights movement crafted by autistics that seeks true equality for people with cognitive disorders and mental illnesses—founded on the belief that neurological differences are natural human variations and deserve the rights, accommodations, and acceptance any other human difference deserves.  Neurodiversity also recognizes that neurological development is not standardized.  Everyone develop unique neurological processes that should be recognized, respected, and facilitated.

Everyone is neurologically diverse.  Everyone has unique educational needs our education system fails to meet.  Instead of designing an education system that meets the individual needs of our children, we have designed an education system that meets societal needs for measurements, cost-control, and resource allocation.  Changes to IEP legislation that require recording strengths as well as needs, separating a grade into groups that study different levels of mathematics or reading, using inclusive language, and telling students that those segregated in the special education system are part of their class address surface issues.  But the problem goes much, much deeper.  Our education system is fundamentally flawed.  It does not meet, nor is it designed to meet, the needs of the students we wish to educate.

Our children deserve an education system designed to meet their individual learning needs.  Our children deserve a learning environment that teaches children, not curricula.  Our children deserve teachers that are trained and qualified to teach them as individuals, recognizing and meeting their individual education needs.  An Individual Education Plan shouldn’t be a privilege reserved for students with special needs, but should be provided to all students.  Our school systems need holistic change.  We need to re-think how we teach, what we teach, and who we are teaching.  We need to rethink the qualifications our educators need and we need to rethink the needs our schools should be required to meet. 

Change comes slowly and painfully.  Holistic change may be easy to envision, but it is very difficult to achieve.  It won’t happen this year or next year.  But it can happen.  Change requires a lot of work, a lot of planning, and often a new allocation of resources.  An individualized education provided by well-trained, highly-qualified, and fully-resourced staff doesn’t come cheap.  But our children are our future and they are worth the work and they are worth the money.  The real question is:  Will we afford our children the respect and consideration they deserve?

Treading the Muddy Waters: The Divided Communities of Autism

  • Posted on October 1, 2009 at 12:00 PM

Marc Sirkin, chief community officer at Autism Speaks, said:

We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism.

I reluctantly agree, though I think it’s sad.  Once upon a time, it was common belief that people with dark skin are inferior to people with lighter skin.  Even the labels we used reflected these beliefs.  We called one black, the other white; we associated black with night, evil, and filthiness; and we associated white with day, good, and cleanliness.  This belief is no longer considered socially acceptable by the majority of our society.  Yet, some people still cling to this belief to varying degrees.  Despite the lack of social acceptability, some people experience racism as a common, even daily occurrence.

Someday the presumed inferiority of people with neurological differences will no longer be a socially acceptable.  Some day saying society should eradicate neurodiversity from the face of the earth will be widely viewed as a call for genocide.  And yet, when that day comes, some people will cling to this belief that neurological differences are marks of inferiority, that differences should be cleansed from people like so much filth.

It’s human nature to disagree.  It’s human nature to degrade.  It’s human nature to let prejudice, assumptions, and ignorance sway our thoughts and emotions.  It’s human nature to have to fight for the rights and worth of minority groups.  As much as I believe in the potential for individual human beings to be genuinely good, noble people; I do not believe human beings, as a species, will ever get passed these fundamental flaws.

Here and now, the inferiority of people with neurological differences is commonly accepted.  After all, these traits are “disorders,” so they are obviously inferior.  Not everyone feels this way, of course, but most people need to be awakened to the possibility that the obvious is not the truth before they can make a conscious decision about what they believe.  This awakening can and does happen.  I’ve seen it in the eyes of people I’ve talked to who have listened and understood.  There’s a visible transformation that plays out on their faces as they digest this new point of view.  Their faces reflect first confusion, then understanding, and openness to the possibility.  Then, their eyes widen with a moment of inspired surprise.  They see the faulty assumptions with new eyes and slough them off.  It’s a wondrous moment to watch this awakening transpire!

But, I’ve also seen cold, deaden eyes from people who closed their hearts and would not listen.  I’ve seen them turn away in disinterest; I’ve felt them turn on me in an all-out attack; and I’ve watched them smirk in derision.  Whatever their reasons may be, they are not open to the idea that someone with a label like “autism” or “bi-polar disorder” or “ADD” is equal unto themselves.  There’s little we can do for them but keep sharing our message.

To evoke the change that must occur before people with neurological differences are recognized as equals in society we must win the hearts and minds of as many as we can.  We must do so, not through coercion, but through conviction.  For each person whose heart burns with the cause of the neurodiversity movement there will be a different strategy and a different set of tasks.  No way is wrong and I do not presume to dictate anyone else’s approach to sharing this ideal.

My approach is three-fold.  First, I want a better world for my children.  My children are autistic, and if they face as adults the same world they face as children, they will spend their lives marginalized, ostracized, and victimized by the callous society which repeatedly fails to recognize their humanity.  I don’t want that for my children.  I recognize that to truly transform this world one of the things I need to do is converse with those autistic adults who are also trying to change the world.  These are those who can help me understand my children better and can help shape the messages I need to share to improve the world for my children.

Second, I want to help all the traumatized, victimized parents, and their children, who are reinforcing the world as it is.  This goal is much more difficult for me, but it is my conscious choice to pursue it.

Once, a long while back, I came across a story about Alison and Ryan Davies.  Ryan Davies was a little boy with autism, much like my own children.  His mother, however, was nothing like me.  She was traumatized by the experience of raising her autistic son.  She was so traumatized that she did something I found unthinkable.  She took her son to a bridge, held his hand, and jumped, pulling him down to his death.  This was the first story of this nature that I had ever read and it is burned into my memory and my soul.  It’s a constant, aching brand on my psyche.  It was the first story, but it hasn’t been the last.  One thing that makes this story so poignant for me is what came after.  Alison Davies’ sister actually defended the mother’s actions, and described this premeditated murder as “an act of love.”  Even now those words make me sick to my stomach.

The story broke my heart.  More than that, it made me so very angry.  Time and again, I would come across of a parent who took their autistic child’s life and the anger would boil inside me.  I condemned these parents whole-heartedly.  It was so easy to be angry, so easy to condemn them.  I couldn’t understand them and I refused to try.

But the turmoil of these emotions got in the way of raising my own children.  I had to let that anger go.  I still mourn the loss of these precious children, but slowly I have developed a compassion for their parents as well.  Being who I am, it is difficult to imagine someone who just didn’t question the diagnoses and prognoses of the medical professionals.  It is difficult to imagine the loss, the hopelessness, and the pain of these traumatized parents who couldn’t fight the precepts society that doomed their children.  I sought knowledge and I cling to a very peculiar hope because it is an integral part of who I am.  Furthermore, I have loved and married a man who is marginalized by society, who is deemed to be of little worth, simply because he’s not normal.  I’ve seen how the way he is treated has done so much more harm than his neurological differences.  I’ve known people who have been dealt a bad hand – one that, should the precepts of society prevail, would have limited them to menial existences – yet they triumph over extraordinary circumstances.  I know in my heart that my children are precious; and I know in my heart that the child and the autism are forever intertwined, but that the challenges posed by autism will only be a fraction of the challenges they face because of how the autism is perceived.  For so long, I couldn’t tolerate anyone who didn’t have this understanding.  I assumed that they chose to be traumatized, knowing full-well there were viable alternatives.  For some that may be true.  But for many the ideas society accepts are all they’re really aware of, they cannot imagine another way to perceive their child.  Unfortunately, the idea that society accepts is that children with autism are broken and we don’t have any way to fix them.  These parents desperately need another message, another voice.  They need a voice that helps them break through the trauma.  They need a voice that doesn’t victimize them, but empowers them to help their child.  My voice will be part of that larger voices that seeks to open their minds to the possibilities, instead of thrusting them down into the depths of despair.

My third purpose is the belief that the best way to change hearts and minds is to bring this message into the mainstream.  For many of the people I talk with in my community neurodiversity is a concept with which they are completely unfamiliar.  Teachers, therapists, psychologists, and parents find the idea completely foreign, though not always completely unwelcome.  Communicating primarily online creates this illusion that the idea of neurodiversity is wide-spread.  It certainly has an international following.  But that isn’t enough.  As wonderful and the Autism Hub and the many bloggers who write about neurodiversity are, you only find them if you know to look and care enough to make the effort.  And there are those who are getting this message into the mainstream, but it’s still too few and too far between to have the kind of impact we need to enact the kind of change required.

Bev of Asperger Square 8 said:

Unless you are autistic, or your family member is, you probably don’t spend much of your days reading and thinking about what it means. You take the sound bites, read an article or two, watch 60 Minutes or Larry King. Nothing wrong with that, it isn’t your job to figure all this out.

While I certainly understand what she’s saying, I must disagree.  There is something wrong with the majority of people remaining oblivious to all the damage being inflicted on neurologically diverse people by the “squeaky wheel” of those who want to eliminate them.  There is something wrong with a society that will propagate the views of the powerful, while leaving the weaker minority with few means of communicating with the masses.  By allowing it, these everyday people provide their implicit approval.  By remaining ignorant of it, they don’t even know they’re doing so.  It’s not enough for people who have a connection to neurologically diverse people to care about what happens to them.  This issue deserves everyone’s attention, because it affects them whether they know it or not.

The image of puzzle pieces – scattered and awry – is associated with autism.  I’ve never understood that.  For me, the image I associate with autism, or at least my place in association with autism, is that of a bridge.  This is not a bridge to be jumped off of, but a bridge between perceptions.  I am the bridge between my family and society.  I also want to be one of the bridges between society and neurodiversity.  The change must happen.  The societies in which neurodiversity is strongest are societies based on freedom.  If the majority of the people in these societies truly knew, truly understood what is going on under their noses and being done in their names, they would not tolerate it.  I want to be one of the bridges from the understanding they have and to an understanding of the truth behind the sound bites in order to effect the change that we all need so desperately.

Bev and Bruce Say It Well

  • Posted on September 30, 2009 at 1:16 AM

Asperger Square 8 has a new post definitely worth reading.  Beautifully written and deeply meaningful, Bev addresses the news that Bruce Springsteen will be performing a benefit concert for Autism Speaks.  While her entire post is worthy of a good read and a good cry, I want to respond to these words:

Those who defend Autism Speaks will tell you that people with “real autism” can not speak for themselves. Some will go so far as to say that these “real” autistics cannot communicate at all.

My son, Alex, is one of these “real” autistics.  He does not speak, at least not in the sense that his vocalizations consistently and effectively communicate.  However, that does not mean he does not communicate, though it does mean he can be difficult to understand.

Yesterday, I was speaking with Ben’s therapists who were playing with Ben in his room.  We had plumbers over doing smelly things in order to bring our upstairs bathroom back to life – without the constant sluicing of our kitchen cupboards.  So, to release the smelliness we had the windows propped open.  One of the things I used to prop open a window was a box (100+) of crayons that were upstairs as part of Ben’s therapy supplies.  Alex saw the box of crayons and wanted them.  Alex loves to color and he goes through crayons rather quickly and removes the paper and breaks them into smaller pieces for his own, unknown reasons.  So, Ben has his own crayons that haven’t been Alex-ified.  And now Alex wanted them.  After all, he hadn’t had new crayons in two whole weeks.

I told Alex I had other crayons for him and these were Ben’s.  Alex accepted that answer and we both went downstairs, and I went all the way to the basement to get a little work done.

A few minutes later, Mark came down with our merry little catch phrase: “Just in case you didn’t know, our kids are weird.”  This is not said to be derogatory.  It’s just one of the things we say to capture the chaos that is our lives.  It could just as easily be me saying, “Just in case you didn’t know, my brain is weird,” with me then launching into one of the strange places my thought patterns had taken me this time.  So, Mark came down to describe an oddity to me.

This time it involved Alex, who regularly leads people to things he wants in order to communicate.  Alex took Mark by the hand and led him to the living room (which happens to be by the stairs that lead up to Ben’s room).  Then, Alex pulled Mark across to the other side of the house to get a piece of paper off the pile in the den.  Then, he pulled Mark back to the living room.  Knowing nothing of the exchange Alex and I shared moments ago, Mark was understandably baffled.

I knew exactly what Alex meant, however, so I handed Mark the box of new crayons I had tucked away for Alex.  Then, Alex contentedly peeled, broke, and colored away for most of the evening.

It certainly would have been easier if Alex could have said, “Dad, Mom said I could have new crayons and I would like them now, please.”  But Alex cannot say that.  That does not, however, mean he cannot communicate it.  The key to communication is not what you say, it’s what the person you’re trying to communicate with hears or observes.  Because Alex communicates in a way that is difficult for others to “hear,” we often need interpreters to understand him.  In this case I was the interpreter, but other times I’m the one who needs the interpreter.  Someday, when he’s ready, Alex will try to communicate with a bigger audience.  Hopefully there will be people willing to “listen” no matter how he is tries to communicate.

Implications of Therapy

  • Posted on September 20, 2009 at 12:00 PM

Bev, of Asperger Square 8, has taken on an excellent project that has opened my mind to many new thoughts.  It’s called: A Checklist of Neurotypical Privilege.  While the entire document is worth reading (I highly recommend it) one piece stuck out and pricked me – mind, body and soul.

13. For a child of my neurotype, everyday teaching of the skills they will need to live in this society is called education or parenting—not therapy, treatment, or intervention.

The implication here is that for neurotypical children education is called education, but because neurodiverse students sometimes require different lessons, different teaching styles, and different techniques, their education is called therapy.

I consciously try to foster my children’s sense of worth and power.  I try to build them up so that they and others can better recognize their potential.  I do not, in any way, consider my children “less” because they are not neurotypical.  And yet, I never consciously thought about the implications of the use of “therapy” to describe our efforts to meet their educational needs.  The specialists who assist us in designing strategies and “interventions” to help my children learn are called therapists and they perform services that are funded as therapy.  I never once questioned these labels.  Now, after reading this document, thinking about it, and letting the issues it brings up fully penetrate my mind and my heart, I’m amazed and chagrined that it never occurred to me.  I’d long lost my comfort with the use of “intervention strategies,” which is a common phrase that’s applied to services intended to assist individuals with special needs.  But therapy always seemed completely innocuous.

When I think about the purposes of therapy, however, the point becomes clear.  The reason my children require therapy is because they do not learn all the things they need to know in a neurotypical manner.  Therefore, to teach them the things they need to know, we need to use different strategies, techniques, and behaviors to help induce learning.  Learning is still the goal.  So, whatever the means, teaching and educating are still the verbs.

Comparatively, consider the teaching strategies sometimes used with at-risk youth.  There are many, from charter schools to special programs, but they’re not called therapy.  These are children who often have neurotypical development, but face challenges not experienced by mainstream society.  To educate them as we should, we need to find ways to compensate for those challenges and this requires changes in teaching techniques.  In our language, we recognize that these differences and unfortunately we sometimes use language that denigrates the worth of the children, but we don’t call it “therapy.”  That’s reserved for students with disabilities.

Just as kids who perform below average or have problems due to their experiences, children who perform above average get specialized educational programs as well.  When I was a student, I attended classes that were labeled “differentiated.”  More was expected from me and my fellow classmates than our regular peers.  Specialized lessons were prepared for us and techniques were used to prevent the typical boredom children with above-average intelligence often experience in school.  It was differentiated, but still education – not therapy.

So, why do we use therapy to describe techniques used to teach students with special needs?  One obvious answer is that it hasn’t occurred to well-meaning people that the word might be offensive or inappropriate.  This is not a reason to continue using it, but it does explain part of the problem.  Like myself, there are others who have never considered the word might be controversial.  If this were the only barrier, change would be relatively easy.  Not genuinely easy, but more easy than it would otherwise be.  Unfortunately, this isn’t the only reason.  There is one good reason I can think not to change the use of the word.  Now, I caution you, it’s not a very good reason, in that it’s ethical or right.  It’s a good reason in that it benefits those the educational services are intended to benefit.

Simply put, the reason to keep the “therapy” label is funding.  Specialized educational services are expensive.  Funds are not readily available for these services.  In many American schools, the only reason these services get the funding the need is because it is federal law that they be available.  In many American schools, parents have to fight to get school officials to recognize that the services provided must be dictated by the needs of the child, not be the availability of resources.  This is a legal right won in the courts.  And it’s still an issue.  By changing the wording from “therapy” to “specialized educational services” one risks losing some of the oomph that “therapy” has.  Whether it’s accurate or not, whether it’s ethical or not, whether it’s true or not, “therapy” has a more respectable reputation with hints of medical necessity that “specialized educational services” lacks.  It’s all about shades of meaning here.  The research behind therapy and that supports its use is better funded and better supported than the research behind specialized educational services.  Programs for at-risk youth and for children with above average intellects are cut before students with disabilities, because the programs for students with disabilities have been propped up by law through the research that supports the benefits of therapy.  By changing the wording, you change the meaning in the minds of some of those you communicate with (which, admittedly is part of the point) in such a way that it’s detrimental to the programs being funded.

Now, again, I’m not saying that it’s a good thing that other programs are so easily cut from school budgets.  I don’t believe that.  I believe that all children, regardless of what their needs are, should get the educational services that fill those needs.  Society’s sense of the value of unique individuals has not progressed to that point yet.  By pushing for the human rights implications of education over therapy, I perceive a risk in damaging the fundability of those education services.  Ideally, the human rights implications would take priority.  They should.  But, the reality is that these services are often necessary.  I’m reluctant to advocate anything that would endanger their availability.

Which is not to suggest Bev’s document does any such thing.  I believe the purpose of the document was to open our minds.  If that’s true, then it certainly worked for me.

Back to School Ruminations

  • Posted on September 3, 2009 at 8:00 AM

Comparing and contrasting Willy’s educational experience with that of his brothers always makes me a little sad.  Willy is fortunate in that he’s found a way to take the world as it is and interacts on a level that most people understand.  He’s very much autistic and still faces many challenges in how he interacts and what he’s considered able to do and what he is able to do (which are not always the same).  But, he has a strong support system at Roosevelt and is able to compensate for most of his differences to succeed in a socially recognizable way.  Alex and Ben are on a different track.  They do not demonstrate a sufficient amount of self-control, communication, or interaction to participate (as per the Janesville school system) in an integrated environment.  Their educational needs are met in a segregated classroom called the CD room – for cognitively disabled.  The fact that they are not, in fact, cognitively disabled plays little significance in this designation, because they are not able to communicate their intelligence in an academically recognized fashion.  Roosevelt is not equipped to meet their needs, so they are sent to attend school together at Kennedy.

I don’t mean to slam Roosevelt or Kennedy.  The decision here is made at a level neither school can change.  Both are goods schools with good people and both try to service their students as they are able.  But I cannot help but remember my own time in school.

In one of several grade schools I attended there was a student with Down ’s syndrome.  I only saw her on the playground and many of the students made fun of her.  She first came to my notice when I saw another child push her for no apparent reason other than her poor balance meant she’d fall with only a little push.  I didn’t usually see things like that, because a friend and I would go off as far in the field as we could to play our own games of make-believe.  This girl would always come out a few minutes later than us, so we’d already be gone.  After seeing our classmate push her down, we went to her an invited her to come play with us.  She couldn’t quite follow our game, but enjoyed our company. 

In junior high, I was somewhat segregated.  They called the classes I took “gifted and talented” or “differentiated.”  They were the opposite of CD classes, designed for students who excelled instead of those who struggled.  I enjoyed these classes, because I was challenged academically for the first time in a long while.  Yet, integrating with non-differentiated students in the regular classes was difficult.  I was set apart, and they knew it.  Most of my fellow differentiated students had the social skills to compensate, but I didn’t.  I was an outsider.  Not like any of them and being segregated for most of my classes seemed to make that worse.

In all my time going to school and in all the different schools I attended, I was only aware of the one girl with cognitive disabilities.  The rest were kept out of sight, but I know now there had to have been more.  Kennedy doesn’t try to keep Alex and Ben out of sight.  Each child is assigned to an age-appropriate classroom with their typically developing peers.  Each will visit this classroom as their schedules allow.  And, at my recommendation, last year on Fridays one of Alex’s peers would come to the CD classroom to visit him.  This became a special treat that his peers looked forward to and enjoyed.

So, progress is being made.  Yet, I know fully integrated schools exist and that they can work for the benefit of all the students.  I know that children with special needs should not be kept out of sight for the comfort of the bigots.  I remember sitting in school, surrounded by my predominantly white peers, and learning about the history of segregated schools.  I remember when I first learned what happened in Little Rock.  I remember raising my hand and asking, quite honestly, “But why would they be angry that the kids wanted to go to the good school?”  I didn’t understand.  In a way, I still don’t.  I can wrap my head around racism and bigotry.  I see it as wholly illogical, but I understand that it is driven by emotion not intellect.  I cannot wrap my heart around it.  I cannot understand those emotions that drive racism and bigotry, however well I can label them:  hatred, fear, disgust.  I understand that people crave a sense of commonality and that those outside that commonality face prejudice.  That it is so, and understanding that it is so, doesn’t help me to understand why.

I’m thankful for the progress that has been made and look ahead sadly to how much more must be done.  But, my boys are lucky.  They have a chance.  So many have their chances stolen from them by prejudice and hatred.  I cannot help but think my failure to understand leaves me powerless to affect needed changes.  But I will try.  Everyone deserves the chance to live, to be educated, to grow, to develop – without artificial roadblocks keeping them from their own potential.