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Disabled, Disordered, and Ill

  • Posted on October 7, 2009 at 2:49 AM

The concept of neurodiversity is very complex and it’s something no one has (or, in my opinion, should have) a corner on.  My personal view is that neurodiversity is for everyone.  While some people have a greater need for their neurology to be respected and appreciated – because their basic human rights are taken away when their neurology is not respected – everyone deserves respect and acceptance for their uniqueness.  That’s my long-term goal.

There are more pressing short-term goals.  In this respect, neurodiversity refers to a civil rights movement intended to urge or force society to acknowledge, protect, and respect the human rights of people society considers disabled due to mental disorders or mental illnesses.  Yet, inherent in that description, there are three labels to which I object.

Are neurologically atypical people “disabled?”  The answer is “yes” or “no” depending on how you define the term.  I have children who are recognized by the federal, state, and local governments to be disabled.  This definition means they are not able to function adequately in society without modifications or accommodations and that this state of being is not likely to go away.  This does not mean they are “unable.”  They can function in society and they can function more successfully with modifications and accommodations.  Nor does this mean that they were disabled, which is a key point for me.

The reason I’m not comfortable with the words “disabled” or “disability” is because the shared root of these words is not something I believe to be in evidence.  The root word is “disable.”  A dictionary definition of disable is:

1. to make unable or unfit; weaken or destroy the capability of; cripple; incapacitate: He was disabled by blindness.

2. to make legally incapable; disqualify.

(emphasis added)

With these definitions in mind, the question then becomes:  “If neurologically atypical people are disabled, what disabled them?”  As a society, we use language that assumes that people with neurological differences were at one point able, but something was done to them to make them unable, thus they are disabled.  We assume this.  We seek causes for this.  We do NOT know that something disabled neurologically atypical people, but because they are different we assume something must have made them different and that it is bad for them to be different.

My “them”s and “we”s are kind of screwed up and backwards in that last paragraph.  First, I don’t assume there are “causes.”  People are people, and we are all different from each other.  That some are more different than others doesn’t surprise me, and I’m not really sure I understand why some people think that’s such a big, scary deal.  Second, while I am not autistic and I am (probably) not an aspie, I am also not neurotypical.  I have sensory processing issues that are mostly managed, but are sometimes debilitating.  I have been diagnosed with both depression and with obsessive-compulsive disorder.  In order to make eye-contact, I must consciously force myself to do so – and I still don’t get why eye-contact is important.  I didn’t even know I didn’t make eye-contact until the therapists tried to teach me how to encourage my children to make eye-contact (which, as you might imagine, doesn’t work so well).  If I’m in a room with more than ten people, I need to consciously manage my reactions, because my fight-or-flight response kicks in – I feel threatened, even if there’s no danger.  If you crowd me in with too many people and too little space, then a panic attack is possible; if people are bumping and jostling me, a panic attack is likely.  These are not neurotypical traits.  But does that mean there’s a cause or causes of my atypical traits?  The way I see it, that’s just part of who I am.

My problem with “mental disorders” and “mental illness” stems from the same argument.  First, let’s take a look at the dictionary definition of disorder:

1. lack of order or regular arrangement; confusion: Your room is in utter disorder

2. an irregularity: a disorder in legal proceedings

3. breach of order; disorderly conduct; public disturbance.

4. a disturbance in physical or mental health or functions; malady or dysfunction: a mild stomach disorder.

(emphasis added)

The first, second, and third definitions assume for something to be ordered there is a regular standard to base the order by; therefore “order” is subject to the norm and anything that deviates from the “norm” is disordered.  The most applicable is the fourth definition.  A mental disorder, such as autism supposedly is, is a disturbance in mental health or functions; it’s a malady.  Or, so society assumes.

A dictionary definition of illness is:

1. unhealthy condition; poor health; indisposition; sickness.

(emphasis added)

And the dictionary definition of unhealthy is:

1. not in a state of good or normal health; in an unsound, weak, or morbid condition.

2. symptomatic of or resulting from bad health: an unhealthy pallor

3. not conducive to good health; unhealthful: Night air was formerly considered unhealthy

4. morally bad, harmful, or contaminating: unhealthy examples for the young

5. dangerous; risky: Asking questions in this neighborhood can be unhealthy.

(emphasis added)

Again, “good” and “normal” are paired together, implying that the norm is the standard and whatever deviates from that “norm” is illness and bad.

Society assumes that because people with these traits are different that we are disordered or ill, and that being disorder or ill is bad for us (and bad for society), so society is obliged to fix us.  Because that assumption has been made for so long and by so many people, the burden is placed on those of us who struggle to function on society’s own terms to prove that we are not disordered or ill.  But since both “disordered” or “ill” are unfairly based on social norms, we cannot do so.  Yet, both “disorder” and “illness” come with the stigma of being broken and needing fixing that is assumed, but not proven in the first place.

The reason I advocate for neurodiversity is because I do not believe society has the right to label people as disabled, disordered, or ill based on assumptions and subjective criteria.  I find it absurd, offensive, and sickening that they do so and use their doing so as a reason to take human rights from individuals who have done no harm, at least no more harm than “normal” people have done.

Now, admittedly, I am not considered disabled by society’s standards, which I find rather odd.  This is not because I’m normal, but because I’ve learned coping mechanisms that have helped me succeed based on standards society recognizes.  For example, because I can articulate myself well and learn through normal teaching methods, I can demonstrate my intelligence effectively.  Intelligence is valued, and so I’m acceptable.  My sons have not developed coping mechanisms independently, do not articulate themselves as well, and do not learn as well using normal teaching methods, so their intelligence is habitually questioned and they are considered disabled.

This is not the world I want my children to be adults in.  My children, and everyone like them, deserve a better world.  If society wants to feel obligated, then it is my belief that society should feel obligated to provide this better world.

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I’m In Cahoots!

  • Posted on October 5, 2009 at 11:01 PM

My first professionally published essay is now online and available!  Please check out Freedom of Mind, published by Cahoots Magazine of Canada.

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Autism: The Musical

  • Posted on October 3, 2009 at 12:00 PM

I thought “Autism: The Musical” was old news.  At my brother’s request, I borrowed a copy of this movie through Netflix to coincide with my brother’s visit while he was working on a project to design a sensory center (he’s a student of architecture) that would, should it ever be built, meet the diverse sensory needs of children with autism while also removing averse sensory stimuli from the building’s design.  The research he conducted while he was here included long conversations with me, meetings with some of our service providers, and watching this video to get reactions from my mom and me.  Time is only a passing acquaintance of mine that leaves few discernible marks in my memory – meaning I don’t know when this viewing occurred.  However, it was months and months ago.

Autism: The Musical was released in April, 2007, and seemed like “old news” when I watched it.  Now, over two years later, it’s still having a newsworthy impact.

“I cannot make people value my daughter,” one mother said, while speaking of her child during an emotional showing of “Autism: The Musical” on Sunday.

That one quote quickly became a talking centerpiece at the event.

Honestly, I don’t remember the entirety of my reaction to this movie.  I do know there were some parts I considered seriously controversial.  I also know that Autism Speaks posted this description:  “As it follows their journey, the audience not only better understands the nature of what autism is, but celebrates the joyful spirit of each child.”  Not without irony.  I also remember that it provided an excellent platform for my brother to experience the diversity that is autism beyond what my three unique little boys can provide.

What I also know is that Autism: The Musical supports getting involved in Autism Speaks, Cure Autism Now, and the (seemingly out-of-place) Miracle Project.

If it serves as a vehicle for communicating the value of autistic persons, that’s pretty good news.  However, I can’t help but think valuing autistic persons and curing people of autism are conflicting paradigms.

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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.

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