Journeys with Autism

This wonderful guest post is by Charli Devnet, a woman with Asperger’s, who wrote the piece for Autistics Speaking Day. I am honored to repost it here.

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Three weeks ago, I attended a series of lectures in Albany, New York by Dr. Tony Attwood on high-functioning autism and Asperger’s Syndrome. Among the many insights I gained, one observation really struck a chord. Dr. Attwood commented that Aspies are like prey animals. I had been pondering that very issue myself.

Last summer, I was riding Silverado out on the trails when the thought first occurred to me. I adopted Silverado two years ago after my parents died, when the loneliness became unbearable. He is an undocumented immigrant, a former worker on a Mexican cattle ranch. At 14.1 hands, the vet calls him a large pony. Everyone else refers to him as the small grey horse.

Despite the stories you hear, there was no instant bonding between us. I had ridden most of my life, yet I had no idea of the responsibility and the cost involved in actually owning a horse. There are board fees and vet fees and farrier fees and, of course, all that tack that must be purchased. We’ve also had trouble finding a barn where we fit in. In little more than two years, we’ve been at three barns, and now I’m looking for a fourth. There have been many times when I wondered what I was thinking, acquiring a horse. Yet, as time has gone by, we have bonded, and Silverado has taught me many things that are as true of myself as they are of him.

You see, a horse really is a prey animal. He spooks at the least little thing — a thunderstorm, a backfire, an animal as innocuous as a deer. A deer will run across his path, and he’ll spook and, if I were not there to pull on the reins, he would turn and run away.

At first I would reprimand him. “Silly horse, to be frightened by a deer!” Then I began to see things from his point of view. Silverado catastrophizes. “Sure,” he thinks, “it looks like a deer, but what if she’s a mountain lion in disguise, trying to lure me into a false sense of security, and all the while planning to lap on my back and devour me? Better flee now and ask questions later.”

Haven’t I become just the same way? There was a time when I did not act like a prey animal. As a child, I was strong and spunky and high-functioning. I had troubles enough, to be sure: schoolyard bullies who chased me down the street, classmates who mocked and taunted me, teachers who treated me with undue harshness in the belief that so bright a child — so bright a girl — should know better than to misbehave as consistently as I did. But I did not think of myself as a victim. Whatever problems I had, I was tough enough to confront them.

Of course, as a child, I had what experts now refer to as a support system. Although I did not fit in with many of the other kids, I had my circle of playmates and, indeed, a best friend just next door. If my parents were not the best of nurturers, it did not matter. In my hometown, I had a plethora of aunts and uncles and grandparents who took up the slack. Further, like most children in the sixties, I was accorded a measure of freedom that few kids enjoy today. If I left home in the morning and came back for dinner, it was not thought amiss. I spent my free time carousing with my playmates, in the library pursuing my favorite subjects, just exploring on my bike or perusing the latest comic books in the What-Not Shop. (My favorite was Superboy. Like me, he came from the planet Krypton).

The summer I turned thirteen, I lost all that. My parents sold our house and moved to a crumbling estate in the country. Suddenly, I had no one to play with, no one to talk to, and nothing to do. I still had my bike, but there was nowhere to go. From that time on, loneliness began to track me and would never let me out of its icy clutches.

Loneliness made me vulnerable. It disabled me. If I were a male, I would say it emasculated me. It was then that I began to think of myself as a victim and, internalizing that notion, acted as a victim.

How else to explain why, despite several advanced degrees, I have been unemployed much of my adult life, or settled for a series of part-time jobs, for all of which I was overqualified and underpaid? How else to explain a life of unwanted solitude or uneasy celibacy? The only skill a prey animal has to master is how to sniff out danger and run away. Of all the skills I had as a child, the one I honed was that. Other people thought I lacked suitable work or relationships because I was lazy, too picky, or simply did not try hard enough. In reality, it was the highly tuned instinct of a prey animal frightened of living in captivity.

Although I excelled at being a prey animal, I was not a happy one, and I suspect that most Aspies are unhappy in the victim role to which the world has relegated them. True prey animals in the wild have the solace of the herd, and that is the one comfort that autistics most sorely lack. We are usually loners and not always by choice. The true loners of the animal kingdom — the cat, the owl, the wolf — are hunters, not prey. I wonder if that is the reason behind the rapport that most Aspies have with felines. We like cats because they embody qualities we wish we could incorporate into ourselves: that overwhelming self-confidence, that devil-may-care insouciance, the cat’s security in its ability to take care of itself, its wit to design a plan and the patience to pursue it.

When I was younger, I alleviated some of my sense of victimization by engaging in some cat-like behavior. I became what other people might call a “stalker.” Now, I never meant to harm anyone; I had no bad intentions. I was excited by the thrill of the chase. Lying in wait or following stealthily empowered me. It provided the temporary illusion that I was the one in control, the decision-maker; in other words, the person I had been before I realized that I was a prey animal. On the contrary, when a man approached me, I reverted to form and ran away. In the end, I turned St. Paul’s admonition on its head. I decided it was better to burn than to marry. At least burning made me feel alive and free.

My mother, who might well have been an Aspie herself, had a similar concept. She rarely ate and, as a consequence, was amazingly slender. I asked her how she kept so thin. She replied that she liked “that hungry feeling.” It took me a long time to understand the theory, but now I do. I guess it made her feel alive in a world of strangers, one aspect of life that she alone could control. Of course, in order to retain “that hungry feeling” and refrain from doing what comes naturally, something must be sacrificed. My mother sacrificed her physical health. She smoked to suppress her appetite. When she developed lung cancer at the age of 74, she had no strength to fight and succumbed very quickly.

As for me, I gave up all that I might have had in life had I not surrendered myself to the flight instinct of a prey, had I had the courage or the pride in myself to stand up to trouble instead of spooking and running away.

This month, I’m honored to publish a guest post from William Peace, a cultural anthropologist and writer interested in disability studies, body art and modification, and the history of anthropology. If you haven’t happened upon his blog, Bad Cripple, I highly recommend it.

Although Bill’s disability is visible and mine is not, his guest post touches on a number of issues with which I deeply identify. I think you will, too.

Identity and Disability
William Peace

I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women’s movement song “I am Woman” by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear–my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, “Wouldn’t you want to be cured?”, or “Wouldn’t your life be easier if you were not paralyzed?” These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environments are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.

I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non-disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.

So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton’s ground-breaking text Claiming Disability, Michael Berube noted:

If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities.” And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy.

Like most people, disabled and non-disabled, I did not always think this way. Disability is after all the only minority group you can join—and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression, when we confront others and assert ourselves, we are classified as bitter. I am routinely told I have a “chip on my shoulder.” When told this, I sarcastically agree—hence I identify myself as a bad cripple—one not afraid to assert my civil rights. If this puts a chip on my shoulder, then I plead guilty. This takes some guts; we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role, our presence is not wanted. The type of disability is not relevant—it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:

People have a great deal of prejudice about autism & other developmental disabilities. I’ve been bullied out of activities and classes because I am autistic; I’ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am—usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks—having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com).

I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter is socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability.

Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.

The August post in our Widening the Disability Perspective series comes from Secret Pepper Person, who blogs about life with her three adopted special-needs kids at The Secret Pepper Society. I’m honored to introduce her as a contributor to the series.

We Are All Unique by Secret Pepper Person

When I was asked to do a guest post on this blog, I began making mental excuses. After all, I consider myself more of a Roseanne Barr than a seasoned author.

My personal blog is not serious stuff. It is the informal journal of the humorous trek through daily life, documenting silly anecdotes regarding my adopted second family of three special needs children: The Boy who has a rare genetic condition called Ostegenesis Imperfecta type 3; The Baby, a three-year-old who was born in a hallway and left for dead, sustaining severe brain damage; and The Teenager, who is tooling along the autism spectrum highway blasting over speed humps and getting waylaid by blinking traffic lights.

I also refer to my grown adult children as The Genius and The Artist in my blog. Their monikers are self-explanatory.

Why the mental excuses regarding being a guest poster, I wondered? After all, I am intelligent enough!

Why, in Catholic school in the 1950’s I was always plunked in the Blessed Virgin classroom, which every one of us knew contained the higher functioning children — even though I was constantly threatened by the nuns with demotion to the average St. Joseph classroom because of my “poor scholastic motivation.” I knew when I obtained the highest scores in the history of the school on the year-end achievement tests that they could no longer justify their threats.

Score one for “poor motivation.”

Besides being “smart enough” to post on a respectable special needs site, I have always had a penchant for the underdog. Surely that should count for something?

Case in point: fourth grade.

In fourth grade, our school groups were no longer clearly delineated by saint’s names, and the individual classrooms now contained a hodgepodge of academic abilities. Our fourth-grade classroom was left unsupervised on a daily basis until the teacher returned from her lunch. The supervision was generally left in the hands of the two highest achievers in the classroom, who promoted crowd control by having students read out loud. (Remember, we’re talking 1950’s here. Can you imagine this arrangement flying now?)

One stormy day, our teacher asked me to supervise the class, surprising everyone. Especially the two high achievers.

Must have been the barometric pressure.

When I stepped up to the podium, I chose children to read out loud who had never once been chosen. Kids who struggled. Kids who, looking back, were obviously learning disabled or lower functioning — not the superstar kids who read day after tedious day. I remember the joy of helping them pronounce a difficult word, but mostly I remember the joy on their faces for being chosen.

When the teacher returned, I was in deep doo because we were not finished with the reading assignment. Not even close. One of the high achievers nanny nanny boo booed on me for choosing poor readers.
So much for the not-yet-coined “inclusion” theory, as the teacher never asked me to supervise again.

Score one for foreshadowing.

So if I’m smart enough and empathetic enough, why the hesitation? I am a professional, after all, who is actually employed to work with special-needs children and their families! Yes, people. They actually pay me.

I eventually realized that I’m hesitant to post because I’m different, and I know it.

No, I’m not talking about my obvious self-diagnosed ADD or dyslexia. After all, I was in my 30’s when I finally realized it wasn’t the actual word “seldom” in the song, Home on the Range, that was discouraging.

You know what I’m saying here: “Where seldom is heard a discouraging word.”

What I mean is that I see things a little differently because I have a quirky sense of humor. I long to be eloquent, but it exhausts me mentallyto even attempt to be eloquent. I disobey the rules of grammar because I love run on sentences. Call me Faulkner. And I love sentence fragments. Call me Imagistic.

I have a shaky memory like the The Teenager, who recently underwent IQ testing in preparation for her 18th birthday and the emancipation that will never come. When the psychologist asked her who Martin Luther King, Jr. was, she replied, “I don’t know. The Son of God?”

I long to emulate people, like Nicole Nicholson, who pen perfect words, such as those in this small segment regarding autism from a poem entitled, Color (a modest plea):

…And if we are all a spectrum, then I am amethyst.
Royal. Aubergine. Keep listening. There is a little boy in Brooklyn, enchanted by lampposts, who is sable and emerald just like the giant streetlight gods that he admires…

I tried to write poetry once. My haiku was a reflection of my nursing skills and my lack of talent, and was slightly different than the above prose.

Colonoscopy
There will be no snow skiing
Not for you today.

I discovered that I do not have the gift to pen breathtaking words – much like my dyslexic son, my brain-damaged baby, and my politically incorrect teenager. Now that I think about it, I’m in good company.

I follow many blogs of deep thinkers, but mostly look at the pictures because deep thinking makes me befuddled. When you’re ADD and dyslexic, you need
a quiet environment to contemplate deep thoughts. This is not happening in my house.

I used to feel inadequate about these personality quirks and deficits, but somewhere in my early 50’s, I realized that being who I was created to be was the most comfortable fit of all.

In the long journey that we parents of special needs children embark on, we focus so much on our children and their differences that we tend to lose sight of reality. Because, realistically people, if you sat down and thought about it we are all a tad special needs ourselves. And no I’m not being flippant, and I am not a casual observer of the special needs population. I live the life, and I wearily trudge through the life, sometimes amused and sometimes exhausted from participating in the agony of the excruciating fractures. The seizures. The inappropriate public outbursts. The bullies at school. The stares. The 17-year-old in diapers at night. The endless IEPs.

I could run on and on with my beloved sentence fragments, but I’ll spare you the grammatical horrors and leave you with one thought — a thought important to me as the special parent of three special needs children. Well, actually five special needs children when you throw in The Genius and The Artist.

If I could post about one thought, it would be a not so deep, and not so eloquent, but very simple reminder that, while we are embracing our children’s special gifts, we need to embrace ours as well. You aren’t hard on your children. Why be so hard on yourselves?

We are all unique in God’s eyes, and He is absolutely no respecter of persons. He made some folk clear like diamonds, some deep and complicated like Tiger’s Eye, and some sparkly like mica. And then there are those individuals, like me, who need to be polished a little before you can find their unique markings. We all have gifts, and we all have deficits, whether we admit it or not.

And finally, I would also issue a good reminder not to write poetry if you suck at it.

This month’s post in our Widening the Disability Perspective series comes from Flannery, who blogs with honesty and wit about life with her son Connor at Living on the Spectrum: The Connor Chronicles. I’m honored to introduce her as a contributor to the series.

My Son Connor: Living with Severe ADHD

My bloggy friend, Rachel, has been kind enough to ask me to guest post today and write about ADHD. She is so very smart, and a gifted writer, that I fear I won’t do her justice. Please don’t judge her awesome blog by my less than impressive writing. K? K.

Initially, I was going to politely decline Rachel’s request. Certainly, it wasn’t because I would deny contributing to the awareness she spreads, but because I can barely stand to think, speak, or write about ADHD. On my blog, I harness the power of humor and swearing to cope, survive, communicate, and escape from the reality of this disorder.

This thing, this ADHD, it runs our lives. It dictates everything about our lives, our schedules, our communication, our social life… It is the monster that cannot ever consume enough to be satiated.

My son’s ADHD was diagnosed three months before he turned four and was classified as severe. There was no surprise in this, as we had diagnosed him by age two, when he had stopped napping for good.

It’s not easy to convey the full impact of ADHD to people who haven’t experienced it in their family. The best way I can describe it is to say that my toddler could not physically stop himself from moving. He could not control his body or his mind, and at times it seemed like he was coming out of his skin. It was often painful to watch, painful to see my child miss out on the experience of real play because he could not stop spinning or running long enough to sit and engage with others his age.

With this in mind, and after careful consideration, we began medication. It helped tremendously in the beginning, before we discovered that his metabolism is unusually fast, and the positive results wear off in 2-3 hours. Since then, we’ve been on a roller coaster of trying different medications to help him, and we are still in the midst of that.

They say that ADHD never travels alone, which is an attempt at conveying to parents that there are usually other underlying disorders that accompany the diagnosis. Until we started medication, the ADHD was like a big, heavy blanket with tiny holes. It obscured the mild Asperger’s Syndrome that my son was diagnosed with a few months later, that had only shown itself as small quirks underneath the ADHD.

What is interesting and, perhaps, maddening about ADHD is that so many characteristics mirror those of autism. For example:

ADHD involves hyperactivity, which can also be a trait of Asperger’s.

ADHD involves an inability to focus for sustained periods of time, which can also be an Asperger’s trait.

Children with ADHD typically lag behind their peers in social and cognitive development by 30%, as do children on the spectrum.

Children with ADHD often lack impulse control, as do some on the spectrum.

If my son carried only an ADHD diagnosis, he would not receive an annual IEP and would not receive many of the special education supports that he does now. One could argue that because of the biology of ADHD, that it surely lies somewhere on the “spectrum” of disorders, perhaps at the mild end. But it is not classified as such, and so those children that do not have a secondary diagnosis struggle through school. In that regard, the secondary diagnosis has been instrumental in getting him support.

In my son’s case, it has been crucial to try to control some of the ADHD symptoms in order to address the deficits of Asperger’s. He is overwhelmed by stimuli, noise, movement, activity. He does not always understand facial expressions or nuances of speech, and will sometimes ask what something means, and sometimes not. Calling something by a different name, such as referring to a motorcycle as a “chopper,” is upsetting and confusing for him. Sometimes, a simple change, like taking a different street home, will cause him to become extremely agitated.

For a long time, we found ourselves studying a particular behavior and questioning whether it was “an ADHD thing or an Asperger’s thing.” We’ve come to realize that the two are intertwined, and the importance isn’t in the origin of the behavior, but in our response to it.

Of all the challenges we’ve come across, the single most challenging and heartbreaking one is the aggression. When frustrated or angry, my son will often hit or bite because he is not able to control his impulses. This has resulted in many dismissals from child-care facilities, and there is even one nationwide disability services agency that refuses to serve him because of the aggressive tendencies. So far, not one doctor or therapist can tell me if or when he might grow out of this. It his biggest challenge, and we worry that we will still be dealing with aggression when he is 12 or 14.

This may seem like a bleak picture. However, there has also been tremendous progress and growth in many ways. There have been great strides in introducing new foods to his limited menu, huge increases in vocabulary, and a growing awareness of how his actions affect others. In short, despite the continuing challenges, there is forward momentum.

As our son ages, we can only hope that his hyperactivity lessens and his focus increases. With his amazing sense of humor, zest for life, and boundless energy, he is surely destined for great things once he learns self-control.

In the meantime, we work diligently with his psychiatrist for medication monitoring, and with his behaviorist who teaches him social skills. The road is long and winding, but the view along the way isn’t always dark. It’s also full of surprises and laughter.

This month’s contribution to our Widening the Disability Perspective series come from Melanie, who blogs about dreams, family life, and ice skating at I Will Skate. I’m so glad that she has decided to share her story with us.

Changing Perspectives by Melanie

Thank you, Rachel, for the honour of guest posting on your blog. I am originally from England; I thought I’d clarify that to explain my quirky spellings and phrases!

My post is a meditation on the theme of widening the disability perspective.

What is perspective? It’s something that we use every single day. Anyone who can reason uses perspective, and the fascinating thing about it, to me, is that everyone’s perspective is unique, even that of identical twins. What makes it even more intriguing is that most humans are stubborn about change, but anyone’s perspective can change just like that. I know that mine did.

This post is about my youngest child, my son, who will be four years old in July. His pregnancy name was Oat, so on my blog, he is referred to as Oatie. Oatie has di-plegic cerebral palsy, which is CP mainly in his legs.

Oatie and I often feel like we’re “frauds” in the world of disability. Why? Can he walk the same distance unaided as another non-CP child of his age? No. Could he walk last year? No. So, why?

Well, if someone were to look at Oatie, no one would think, at first glance, that he’s disabled. I describe CP as akin to a condition resulting from a stroke, but in the womb or shortly after birth. Most of the time CP “happens” while in the womb.

You see, the funny thing was that I naively thought that, because I would have children while I was young, I would have less chance of having a child with a “birth defect.” I was super healthy and fit. I was triathlete fit, but not extreme. I ate what I liked, had never been on a diet, had never smoked, and only drank in moderation at special occasions.

After an uneventful fourth pregnancy, I had Oatie. He came out suddenly at 37 weeks and, aside from his placenta being diseased, he looked “normal” and was my best feeder. There seemed no cause for concern at all. My eldest, who had been born eight weeks premature, walked independently just one year after his due date. My daughter, with whom I’d had a textbook normal pregnancy, didn’t walk until she was almost two and is now the youngest junior figure skater our club has ever had. So when Oatie was cruising furniture at two but not letting go, I was concerned, but two doctors said that I was worrying about nothing. My husband and I decided that as soon as it got near to Oatie being two and a half, we weren’t taking no for an answer. We were getting a referral. The pediatrician we ultimately saw diagnosed Oatie with CP on a foot reflex test when he was two and a half.

Wham! That was when my perspective changed. I suddenly went from a relatively carefree mum of three, to a mum of a child whose path wouldn’t follow the “norm.” One minute, my main concern was what to cook for dinner, and the next minute, I was wondering whether Oatie ever had a chance of leading an independent life.

You might be throwing things at your screen, right now. OMG! How could she be so ignorant of the possibilities? But it’s not until you’ve experienced things in life that you move into that inner circle.

I wasn’t ignorant or narrow minded. In England, I had been an ethnic minority. I was a Girl Guide, and I’m still involved in the Scouting movement today. I had raised money for all sorts of charities and traveled around many parts of the world. I believe that, in our junior school class, we had a child with CP, but being as accepting as we were, we never asked him what was “wrong” with him. He was a kid, we were kids, and no one cared if he dragged one of his legs. He was just part of the class like the rest of us.

But my perspective then was so different from what it is now. I didn’t realise then that people with CP or any other types of disability could be highly intelligent. I thought that a lot of “birth defects” were from poor diet and substance abuse. I thought only of the extreme cases of CP. Before I had kids, I thought that if I found out during a routine pregnancy scan that my child were disabled, I would have an abortion.

Well, after knowing Oatie, I SO wouldn’t.

I’m not saying that raising a child who is mentally super bright but has difficulties verbally and physically expressing himself isn’t hard or heart-breaking at times. It is. But Oatie has the purest soul and is the most determined person I’ve met in a long while. He is someone who will fall down and not even wonder, “Should I carry on?” Giving up is not an option and, in the blink of an eye, he’s trying all over again. He is so loving, so intelligent, and so funny. I feel privileged that I get to witness his journey in life.

Why am I telling you all this? Well, I’m an opened-minded type of person, really, and I know that if you’re reading this, you’re probably open-minded, too. But be honest with yourself. What was your perspective before you experienced your own disability, or before you became a caregiver, a parent, a sibling, or a friend of someone in the world of disability? How has your perspective changed?

My perspective is so different now.

Oatie is three years old, and he has already been subjected to some horrible social encounters. We’ve encountered the disdain of people frowning on me parking in the disabled bay, even with a blue badge. Some days, Oatie just wants to walk, and his therapy doesn’t recommend an actual walker, so he has my hands to hold as his walker. What’s wrong with that? Why do people think you have to be old to be disabled?

Stroller skating — what Oatie refers to as “buggy skating” – means sitting in his pushchair while one of us pushes him around on the ice. When Oatie was only two, he was shouted at by two rink employees and asked to leave the ice. Yes, I stood our ground and showed them the rules, but they apologised only after I phoned the duty manager. Oatie, who was not able to construct full sentences at that stage, understood their meaning fully, burst into tears, and said “Oatie no skate.” And even though we said that they were wrong and that he could, he pointed at the men and said “No! No!”

He has been bullied at preschool. He’s in a French preschool that serves a minority community in Alberta and, what got me was — a minority, picking on another minority! Oatie was deemed dangerous to others because, after 15 minutes of repeated bullying and derogatory behavior, he reacted. He had kids saying, “Hello? Are you in there?” He had kids snatching and throwing the toys he was playing with. He had kids saying he was a baby because he couldn’t walk. And before you say that they’re just kids, please know that the parents weren’t much better.

Well, only after many hours of argument and discussion did the other parents back down in a public display of shame. Oatie had five families who took a stand with him, and stood shoulder to shoulder with us and defended him. We managed to resolve all of it, and he’s now thriving at preschool. He is as fluent in French as he is in English, though he finds French easier to pronounce!

Even air travel has been a struggle. Oatie’s therapy is ABR (Advanced Bio-mechanical Rehabilitation), and the headquarters is in Montreal. Last March, before we started ABR, Oatie couldn’t walk or stand in open space. He could hardly stand even holding my hands, and he didn’t hold on, so imagine holding a floppy sack of sand, and not being able to put it down, while you need to get your wallet out, put your coat on, and open a stroller. I worked for a major worldwide airline, so air travel is like hopping on a bus to me, but even then, oh my, what a “physically impaired” person experiences traveling is something that an able-bodied person just doesn’t understand. Next time you go on a plane, have a look at the toilet, and think “If I were disabled…?” Exactly!

I took Oatie, by myself, to Montreal. I worked at check-in ground staff, so the whole airport scene was “my thing,” but going through security with a child who couldn’t walk was needlessly difficult. They removed his shoes — which, to Oatie, means that you have given up on him walking, so you’ve taken his shoes away. Once I managed to get him on the plane, I saw the seat and thought, “Is that comfy for someone with CP? No, it isn’t.” I had to wedge my coat behind him so he didn’t scream in pain.

And what about when they don’t bring your stroller or wheels to the aircraft side? I requested a wheelchair when we landed, and nope. There was no one to greet us. People look to see what’s “wrong” with Oatie, treat him like you could “catch” something, and WALK ON! There was one person on the whole aircraft who helped me. He was an off-duty soldier. This guy on leave to visit his mum was the only person who helped me out of over 100 people. He was so nice that he helped us off the plane. As soon as he saw that Oatie’s wheels weren’t there, he helped me right from the aircraft side, pulling our bags off the belt and taking us to the taxi rank. He even gave me his local barracks number to say that if we were stuck, in trouble, or needed anything, he’d send a tank over, as he knew that Oatie loved cars!

I think the biggest thing I have done, apart from Oatie’s ABR therapy, is not to pity him. Would you want pity? I challenge him, as I know that’s what he wants. Like his coat, he couldn’t take it off. It was almost unrealistic for him to take it off. He cried for a few minutes, saying, “You do it,” but then, he had a go and almost got it off. Now, he can take it off in a minute and is so proud of himself. Time for the next challenge, please.

Oatie can now walk 20 feet unaided, even carrying an object or a lunch bag. He can stand in open space, turn in open space, and sit on an airline seat without support. He can climb in and out of his car seat, take off his shoes and coat, feed himself, and mix a scratch cake. And he has started to read.

I see so many other mums who all look over at Oatie, and it’s written all over their faces: They’re SO glad it’s not them. I’ve heard people say, “How on earth can you DO IT?” and “Could you imagine having a disabled child? It would be awful.” I’ve even had people say to me, “They would be better dead.”

Yes, my perspective has changed. Meeting and knowing Oatie has changed me. In my mind, he isn’t disabled. It’s his dream to ice skate — and he will, whether it will be from the comfort of his stroller, or standing on the ice, who knows? But if anyone has the determination to do it, it will be him for sure. Just because he’s physically restricted, he’s not the disabled one. His mind is open, and pure, and wanting to engage life to its fullest. He’s not thinking typically three-year-old stuff about painting a cat. He wants to take on the world. He’s determined to walk independently. And, in all the months of bullying, not once did he NOT want to go to school. He knew that if he wanted to go to school, he’d have to endure the bullying until we managed to stop it.

It’s us, the so-called able-bodied –– we’re the disabled ones for not seeing clearly. We’re the ones whose perspective on physically or mentally “impaired” people needs to change. We have blinkers on, and it’s time that, one by one, we take the blinkers off and review our perspectives.

I am guest posting today at the illustrious Jillsmo’s illustrious blog Yeah. Good Times. My piece is called We Are Not The Enemy.

Jilllsmo welcomes all comers, and I’d love it if you’d drop by and comment!

This month’s post in our series comes from bbsmum, an insightful writer who blogs with honesty and great good humor at Mum Accepting Autism. Her son BB is a young man with autism and severe learning disabilities.

Why Inclusion Isn’t Always the Best Choice

My son BB is 18 years old. I have read that he has had second-class opportunities. That he is unlikely to reach his potential. That he was betrayed by a decision I took when he was 4.

Who made this judgement? Some bigot? No, this attitude comes from some parents and some advocates within the disability community. What was the decision that they think blighted his life? It was a decision I have no regrets about whatsoever — the choice to send him to a special school.

A provocative statement? Maybe. But everywhere I look, parents and advocates are clamouring for inclusive education and denigrating the value of specialist provision, or at best grudgingly accepting it as a stepping-stone into integrated lessons. When Ari Ne’eman (http://www.wrongplanet.net/article367.html) describes special education as “segregated” (now that’s provocative language), the prejudice about special schools makes me question why the idea of mainstream education is held up so unquestioningly as the ideal to aspire to.

Firstly, a confession: I didn’t exactly choose a special school. We were never offered mainstream education for BB and rightly so. There is no aide, no accommodation, no help, no lesson differentiation that would have made the mainstream curriculum understandable to BB, and the gap between his understanding and that of his peers would have grown wider with time.

Instead, he went to a local school for children with severe, complex, or profound cognitive disabilities. It’s perfect. The staffing ratio is 1:2. The staff are there because they have chosen to work with our children. The curriculum isn’t adapted for him; it’s designed for him. He has been given a range of experiences both in school and on community outings that rival anything a mainstream school could offer. For fourteen years, in two schools (we moved house, so BB had to change schools), he has been surrounded by care and expertise.

Sounds good, right? So why are parents and disability activists alike so convinced that special schools are second best? I fully understand that for many disabled people, the memory of a time when they were deemed incapable of benefiting from mainstream education is still fresh, and the wounds are still raw. I’m truly sorry about that. But to push the pendulum the other way and demand that all children with disabilities should be educated in mainstream settings denies the obvious truth that in education one size does not fit all.

I used to work in a preschool for children with special needs. The Educational Psychologist would come in and say things like “X will cope in mainstream, Y will cope in mainstream with a 1:1,” and so on, and I used to think “Cope? Is that what you want for a child’s education? To cope?” I wanted so much more for BB. I wanted him to thrive, to feel safe, to grow in confidence — not to get by just ‘coping’.

Here’s a thought: If you’re a parent trying to get your child educated in mainstream, or a disability advocate saying that mainstream education is preferable to special schools, just stop for a moment and ask yourself why. Is it because the child will emerge with more qualifications? This would seem a reasonable basis for argument, but most pro-mainstream folk are actually a little unsure of the statistics, because that doesn’t seem to be the point. For them, the crux of the matter is a philosophical one. Disabled children should be with non-disabled children.

A-ha! Now we’ve got to it. Why? Why is sitting in a classroom full of typical kids preferable to sitting in a classroom full of autistic kids?

Don’t look at me. I don’t know.

All I know is how it feels. (Please note, I am not describing anyone’s intentions or beliefs, merely how this makes me feel). It feels like people are saying “Inclusive education is best. What a shame your child can only cope with second best.” It feels like people aren’t interested in the achievements BB made because of the supportive environment of a special school. It feels like people regret the need for special schools to exist, which means they are regretting the existence of those who need them.

Where does this leave the ones who can’t take part? Who will never keep up?

It feels like people are saying that it’s better to be a different sort of disabled child.

Here’s another thought for those of you who champion inclusive education. Stand with those of us who need something a bit different, and campaign for educational choice instead. Mainstream for those who want it. Good quality special schools for those who want it. Individual needs first, ideology second. No privileging one type of education over another.

If it’s right for the child, special school is a different choice, not an inferior one.

Hi all,

I’m guest posting today over at Phil Dzialo’s wonderful blog. My post When Preserving Life is Considered a Nuisance: What’s Wrong with This Picture? discusses the recent protest by a group of Florida parents against the accommodations provided to a first-grader with a severe allergy. Please come over and add your voices to the conversation!

© 2011 by Rachel Cohen-Rottenberg

I’m honored to have the opportunity to post a beautiful piece by Phil Dzialo, author of the blog Healing, Empowering, and Thriving. Phil is the father of Adam Dzialo, a young man who was severely brain injured at the age of 12 in a near-drowning accident. Phil’s wife, Sharon Dzialo, has written a book called Ceramic To Clay about her family’s journey of spiritual and physical healing.

Being There by Phil Dzialo

Astrologically, Chiron is my destiny, and I accept it. It’s a predominant, although erratic, comet in my natal chart and is symbolized by the “wounded healer.” It represents our greatest wound and our deepest efforts to heal that wound.

Chiron was a centaur in Greek mythology who was a healer and a teacher but could not heal himself. He points to our deepest wounds and our efforts to rise above them. Because the wounds are deep, and our efforts to overcome them require hard and equally deep work, healing powers are potent. Chiron’s nobility is reflected in the story of his death: he sacrificed his life so that mankind could have fire.

We all are Chiron: the disabled, the caregiver, and mankind. I use the word disabled unconventionally because I believe that we are all disabled; only the manifestation differs. It’s only a matter of other people’s perceptions. Our deepest wound is the profound need for relationship, as evidenced by caring and being cared for. The wound outwardly is manifest in many ways: some cannot walk, or grasp, or speak; some cannot process the world of inputs or outputs; some have bodies and minds that are simply not functioning as they could; some are driven by uncontrolled desire; others, by a lack of resource.

We are all wounded and there is no normal. To allow normal into our vocabulary is to admit and to sanctify the worlds of have and have not. While all are wounded, some are more visibly so than others. The rejection or denial of these wounds subjugates us to a “life not worthy of life.” It is that indifference of which Elie Weisel spoke, a relegation of people to the hell of “no difference.”

The wound, of course, is a lack of acceptance of our profound interconnectedness. We the people of challenge, we the people who care profoundly for those with challenges, all long for that which evades us: a constancy of interconnectedness with life. The wound fails to heal when others too often look the other way, and are intentionally or unintentionally indifferent.

My son is non-verbal and non-ambulatory as the result of a near-drowning 12 years ago. He was under water for 25 minutes. He is wounded deeply; his eyes and smile are his instruments of healing. He has a presence through his aura that is evident to those who have “eyes to see and ears to hear,” and an open heart. His ability to heal is a function of his purity. His work is to show others that survival and happiness are possible without the accoutrements of things and places. His clearest communication is “Love is being here when you don’t have to.”

We do not ordinarily actively reject the challenged; we too often fail to understand their humanity and their journey. Their outward manifestation of the wound too deeply reflects our greatest fear of facing our wounds. How many of Adam’s friends have remained a presence in his life? None. How many of Adam’s relatives have reached out, provided help, regularly visited him, and acknowledged events in his life of healing? None. How many of our friends who promised to be there for “however long it takes” are around? None. (Well, actually less than a handful.) One person once said to us, “I can’t visit any longer because it’s like Adam can see into my soul.” Of course, it’s not only Adam; it’s the elderly, the widowed, the infirm, the dying who expose our wound.

The challenged are easy to dismiss and avoid: they can’t talk, they look funny (distorted bodies are hard to look at), they can’t speak well, they can’t party, they can’t go to the movies and dinner in the way that “normal” people do. They can relate, but it takes an open heart and a recognition that their need for interconnectedness is as strong as everyone’s. We who have less of a burden have an obligation to help others heal their wound and in turn heal ours. That can only occur if we are there for them with constancy, regularity, and passion in the way that they need us.

I can heal my wound by touching, by talking, by looking in the eye, by being present to those whose wound is visibly deeper than mine. This is my healing. There can be nothing about the other that makes me fear; there can be no other priority that draws me away from this interconnectedness. My life must provide that fire, as we are all one in the energetic, electric universe. Separation from others’ needs is the sure way to never heal our wounds.

My resolution for my life is simple: to be there for others in the way that they need me, not in the way I would perceive, which limits my ability to give. To rise above is to create a new world in the evolution of our consciousness. This will insure that the fire rages.

I’m guest posting today over at Claire’s blog, Life With a Severely Disabled Child. My post, Privileging the Visual, discusses the ways in which our culture’s emphasis on the visual presents difficulties for disabled people, whether our disabilities are visible or invisible.

Claire moderates all comments on her blog, and she keeps the discussion safe and civil. We’d both love it if you’d come over and join the conversation!

© 2011 by Rachel Cohen-Rottenberg