Category Archives: disability

How we Communicate – A Podcast

*This was an assignment for English Composition to create a podcast about something you care about.  This is mine after many revisions and incorporating notes from my teacher.  A written transcript of the podcast is below, but if you can, listen first!

 

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Emma – 2016  Photograph by Pete Thompson

This voice?  The one that you’re hearing read these words?  Yeah, that one.  It isn’t my voice.  It’s my mom’s.  You’re probably wondering why a teenage girl would want her mom to read what she’s written.  In my case, it’s because I can’t read what I write out loud.  There’s not a direct line between my brain and my mouth.  It’s more like an elaborate maze.  I can’t speak so people understand what I mean.  If asked a question, my mouth says things that do not answer the question.  My brain doesn’t think in words the way most people’s do.  Names of things and people get handed to me instead of the words that would make sense to the person questioning me.  Sometimes I blurt out whole sentences from another time in my life.  (Emma’s voice) “I bounce a balloon to Emma.  I bounce it back to me.”  They may be images that remind me of the person I’m with or where I am, or words I’ve heard spoken by others, things that get caught in my mind, or unrelated scripts, but that convey the exact emotion I’m feeling.  (Emma’s voice) “No more ice skating.  Ice skating’s gone.”  In any case, what I manage to say usually baffles the people I am speaking to, causing them to misunderstand me.  Not being able to speak what’s in my heart so that others are able to understand can be challenging, but I can type things that I cannot reliably say.  There are computer generated voices that say the letters as I type them and sound like this – (Computerized young girl’s voice) “I am your friendly computerized female voice.  I sound like I’m maybe five years old.”  (Another computerized young girl’s voice) “Or I can sound like this and pretend I’m British.  But yeah, it’s just not me.”  Or I can sound like this.  Okay it’s not my voice, but with some direction, Mom sounds better than a computer.

Imagine for a minute that you can’t talk to people in any way that makes sense to them or you.  Imagine if every time you opened your mouth to speak other words tumbled out.  If you are like me, you might get used to not answering people’s questions or being able to stay on topic.  So what would you do?  How would you interact with people?  Would you ignore their questions?  Pretend you didn’t hear them?  How would you express yourself?  Maybe you would try to connect with scripts you’ve memorized, things you’ve heard other people say in similar situations or maybe you’d find non-word based ways to communicate.  That’s what I do.

(Sound of footsteps, people talking and the subway)

Sound is everywhere.  I don’t have a filtering system marking one particular sound as more important than another.  Can you understand what I’m saying right now?  Mom had to raise the volume of her voice so that you could hear it above all the other noise.  My brain doesn’t do that.  It hears all sounds equally and does not discriminate.  But some people’s voices are not as dramatic to my ear as the honking of a horn.  I love the sound of honking horns.  (Horns honking and traffic noise)  Favoring some sounds dilutes others, but music has the best sounds of all.  (Body Knows Best – Anya Marina)

Music is my first language.  It is a friend who loves me unconditionally.  It’s there when I need it and does not shed a tear if ignored for some time.  Music is a positive force as it stands by my side.  I like hearing the same melodies repeated and did so even when I was very young.  It’s been a comfort to me as long as I can remember.  Music grounds me and plays a huge role in seeking my creativity as it allows me to perform as I choose to.  It’s a way to communicate; it gives me hope, tells me I am not alone and inspires me to create.  Though people respond differently to music, I believe there are always emotions involved. Music has the ability to transform my fearsome thoughts laden with anxiety and stress.  (Music fades out)  It calms me and this has been the case throughout my life.  When singing lyrics I stumble and have trouble articulating the words, (Lose Yourself – Eminem) but I can remember the sounds I hear and recreate them with my voice.  When I sing I am not apart from, but instead am part of.

Music can be both private and public, but it needs to be loud.  (Music gets louder) No one composes music in a whisper.  My body needs to feel the beat so that I can be consumed by it.  (Volume increases steadily and then fades)  When that happens I become part of the music, like another instrument or an extension of it.  I jump and dance and move.  My arms swing or are raised up and my head bops, my whole body keeps time to the beat.  I’m transported to another reality and it is in this alternate reality that I am most happy and comfortable.

At home my need for high volume can cause problems because the members of my family have differing sensory needs that come in direct conflict with mine.  (Heartless – Kanye WestMy older brother has to have music as background, while I perform alongside, so it makes sense for mine to be public and his to be private.

(Emma’s brother)  “Yeah I think it’s totally fair that you’re able to use the living room.  It’s not like you play bad music or anything.  If you played music I didn’t really like, I’ll just shut the door and go in my room and hang out.”

My mom and dad both work at home and need quiet in order to concentrate.  I am told to wear headphones, which encumber my movement and dilute my experience.  My family has worked out a solution that allows me to commandeer the living room in the evening.  For several hours I am blissfully able to indulge my love of loud music and dancing while my brother stays in his room or hangs out with my parents in theirs.

Until about a year ago I didn’t know the joy of creating music.  Until then I was an audience member, but not a participant.  My parents encouraged my love of music and hired teachers to help me expand my interests.  Guitar is beautiful to listen to, but it is difficult for my fingers to recreate the sounds flowing through my mind.  Piano is also hard and requires dedication and lots of practice, but I think it’s a better fit for me.  Singing is easy and my lack of inhibitions, great sense of tone and ability to mimic sounds I hear makes it the best choice of all.   Eliot is my piano teacher and Karen is my singing coach.  Eliot came first.

(Eliot) “Emma has a great ear.  She can learn to sing new melodies really quickly and accurately.  Recently she’s been listening to the car horns outside and sings their exact pitch.  Emma is a fun, expressive and creative singer/performer.  She brings a lot of life, passion and feel to the material.”

Karen came next.

(Karen) “Emma has really great pitch control.  She knows exactly how the melodies go whether she knows the words or not and she makes it a real point to study each specific thing that happens in the song and can honor each thing in the song by movement and she can also emulate the sound really well as far as consonants and vowels.”  

(Gimme Resurrection – Anya MarinaKaren and I have great fun together.  I feel at ease in her presence, which is important when you are learning new things and trying to be creative.

Eliot and Karen have taught me to be patient with myself.  From them I have learned how hard it is to become masterful and yet I’ve decided it’s better to love the process of learning as much as the final product.  Communicating isn’t just talking, it’s developing a connection with another.  Music connects us all.  I wrote these lyrics and composed this melody, so this voice?  Yeah, this one’s mine.

Emma sings Over and Coming
Eliot Krimsky on keyboard

The girl’s going in the bed
the girl is going inside
the girl is going outside.

Who is this girl I see?
Who is that girl I see?
Watch careful-ee-ee-ey
Listen to me-ee-ee

Over and coming and over and coming,
over and coming and over and coming

Go, go, go,
go, go, go,
go, go, go, go

Go, go, go,
go, go, go,
go, go, go, go

Find a way
to seize the day
Dare to be the leading girl!

The girl walks out the door
the girl walks in the door
the girl is a teenager.

I am the girl you see,
I am this girl you see,
Do you believe in me?
Please do believe in me.

I’m ready to fly if you let me,
I’ll go
Turn up the music and
just don’t say no.

Starting and going and starting and going
starting and going and starting and going
Starting and going

Do, do, do, do, do, do….

Internalizing What Others Believe

When I was growing up my sister was the “athletic one” and as a result for a very long time I believed I was not athletic.  It wasn’t until I started dating a man who had almost no athletic abilities at all that I began to suspect this version of myself was false.  It wasn’t that I wasn’t athletic, but more that in comparison to my sister, I wasn’t.  These kinds of internalized beliefs about ourselves begin young.  I have yet to meet anyone who did not take on some belief about themselves that had nothing to do with who they actually are, but instead was what others said or believed about them when they were young.

With autism there is a whole population of children who are growing up with assumptions about their neurology that will be very difficult for them to reject.  When a two-year old is diagnosed and overhears their family, doctors, therapists, and friends speak about them as neurologically inferior it will be difficult for them to not take that on as fact.  If they act out in frustration, because what they know and what they are able to say do not match, their frustration is labeled as “challenging behavior”, they are thought to be manipulative or difficult or misbehaving.  If they are then punished for these behaviors, the actions they take because their bodies do not do what their minds are telling them to do, or because they are bored out of their minds from being asked to do the same thing over and over, as they grow older and continue to have picture books given to them when they are intellectually capable of far more, I imagine it must only make this perceived belief about themselves all the more painful.

Society has adopted the medical model for autism.  It is a neurology seen as deficient when compared to non autistic neurology.  It is pathologized because to not do so would mean insurance companies would refuse to help pay for certain therapies that can be very helpful.  Things like OT and PT, and  in some cases, speech therapy etc would all be deemed unnecessary.  But I have to wonder whether there isn’t a better way.  After all the cost our children and the Autistic population is having to pay is pretty steep.  Their self-esteem is often battered, their internalized view of themselves is negatively affected, ask just about any Autistic adult about their childhood and what they believed about themselves as a direct result of what was said to/about them, even if not in their family of origin, but at school, by other kids, or the doctors they were taken to.

Many talk about how autistic children are trapped and imprisoned by their autism.  A few Autistic people have written about how they lived in their own world until they were given the support to communicate.  Some have even said they felt imprisoned and trapped by their autism.  The image of autism as a prison, is a strong visual image, one that a number of autism organizations have used with great success in drumming up donations and funding.  When I read things like that, written by Autistics, it is painful to read.  Understandable, but painful.  The internalized view of themselves as imprisoned by autism is what others and society has said.  But if autism was better understood, if all children were immediately given the help they need to communicate in ways the non autistic population could understand, much of these views would disappear.  For a long time I bought into these beliefs, too.  But I have come to understand that it is not autism that imprisons my daughter, but society’s beliefs and inability to accommodate her that does.

Em’s new guitar

Guitar copy

“Both Sides of the Table”

I’m reading a really wonderful book right now.  Both Sides of the Table Autoethnographies of Educators Learning and Teaching With [Dis]ability Edited by Phil Smith.  My friend Ib wrote a chapter for this fabulous book.  Her chapter is called, Autistethnography.  In her chapter she writes about the mesmerizing beauty of a dodecahedron and provides the following link – http://beachpackagingdesign.typepad.com/photos/uncategorized/2008/04/30/dodecahedron.jpg .   Ibby writes, “…. if you memorize it well enough to be able to spin it around in your head while changing its colors, enable you to loiter for ages with the greatest of ease, astonishing onlookers with your ability to do what they mistakenly believe is nothing whatsoever.

Oh how I love that and if you’re like me, you will read that sentence many times, considering its implications and its layered meaning.  That sentence, if a sentence could be a dodecahedron, then it certainly is.  I have spent the last five minutes carefully spinning those words around in my head while staring out the window of my studio at the snarled traffic creeping along the 59th Street bridge.  What a wonderful sentence.  What a wonderful way to think about something.  And it is so perfectly Ibby-ish in all it’s spectacular-ness.  My daughter understood this instantly after meeting Ibby for the first time and began to refer to her cheerfully as, “Ibby from Ibbia!”  Do not mistake this as a demonstration of othering; it most certainly is not.  In fact, it is the opposite.  That she understood so instantly and on a whole other level is something I envy.

Both Sides of the Table isn’t an autism only book.  It’s a book about identity, relationships, society, politics, research and self-discovery.  It’s about the stories we create so we might learn about and from one another and how we affect each other through our experiences of the world.  Don’t be put off by the title.  Autoethnography is really another word for memoir, but the best kind of memoir.  Memoir as a tool for investigation and a search for larger meaning.  To me, anyway, those are always the very best memoirs, the ones where we not only identify, but where we learn something about the other person and in so doing, ourselves.

So I’ve been thinking a great deal about stories.  Stories as research, stories of lives that overlap and how we affect one another.  Deodatta Shenai Khatkhate left a great comment on yesterday’s post, he wrote, “There is a thought process that we ought to use our Words with caution, for they become our Actions; then our Actions become our Habits; and our Habits become our Character; and ultimately our Character becomes our Destiny. Thus the creator of one’s Words is always the master of one’s Destiny.”  He attributed this idea to Ghandi and Margaret Thatcher;  I’ve also read something similar from Lao Tse.  In any case, it is wonderful and reminded me of this idea of autoethnography.  The layering of experience, meaning, the overlap and the way we are intertwined with each other’s lives as they unfold, affecting change, shifting research, becoming research, becoming change.

Dodecahedrons

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The Conversation That Isn’t

The biggest problem with the conversation regarding autism and Autistic people is that it is largely had without the inclusion of those who are being discussed.  When Autistic people attempt to join the conversation they are often told – the very fact you can speak removes you from the conversation because you are not representative of those who cannot and those who cannot speak are believed to have little if nothing to say.

When someone who is Autistic and does not speak, types to communicate, they are often discounted as not really being able to type, even when they are able to do so independently.  One of the many google search terms that come up repeatedly, leading people to this blog is “Carly Fleischmann fake.”  I continue to find people’s adamant disbelief, even when shown clear evidence of ability, baffling.    For those who do not know who Carly Fleischmann is, please go to her website and Facebook page.  She is a non speaking Autistic teenager who defies all the stereotypes about what it means to be non speaking and Autistic.  People insist that she is an anomaly, but go to a conference like TASH, Autcom, the ICI Conference or go to the resources page on this blog and read the many blogs and written works by non speaking Autistic people and you will quickly see that not only is Carly not a “fake” or a “hoax”, she is not an anomaly; she is in good company and one of many.

“…. a tendency among professionals to band together when their expertise is challenged and to deny resolutely the existence of evidence which, if admitted, would force a reevaluation of established practice.” ~ Speechless by Rosemary Crossley

Rosemary Crossley on the topic of IQ tests, writes, “Tests of intelligence purport to assess how well you take information in, and what you are able to do with it, on the basis of what comes out.  If nothing quantifiable comes out you are untestable.”  She then goes on to say, “What is surprising is that the results are assumed to reflect what the child and teenager are thinking and what they are able to learn, and are used as a basis of making decisions about their futures.

So we continue to have a conversation about Autistic people, yet when those who can speak do so, they are discounted as not representative of those who cannot, and when those who cannot speak, type, they are doubted, believed to be a hoax or an anomaly and not representative of others who share their inability to speak.

Does anyone else see a problem with all of this?  Anyone?

Me and Em at the ICI Conference in July, 2013

Me & Em

Disability and Society’s Role

I have to preface this post by saying I’m still grappling with all of this.  I recognize that while I can intellectually understand something, it takes me much longer to completely “get it” to the degree that I can own it and incorporate it into my thinking.   Perhaps this is a specific quirk to my neurology…  Here goes – Yesterday afternoon something came up that I didn’t understand.  It was surrounding the words “disability”, “impairment” and the role society plays.  It was stated that autism is a neurological difference that can create certain impairments.  Impairments that can lead to disability when not accommodated.  I didn’t understand the concept at all.  I couldn’t wrap my mind around society’s role in creating disability by not accommodating.  I need to backtrack here for a second. Stay with me…

My father was in a wheelchair the last decade of his life due to a horseback riding accident that occurred when he was 40 years old.  Most of us, who do not require a wheelchair, probably don’t think about what can happen to the human body as a result of not being able to stand and walk around.  There are things that often occur as a direct result of being in a wheelchair for the majority of one’s waking day.  Things like sores, atrophied muscles, metabolism changes due to inactivity, which can lead to constipation, a greater risk for infection, etc.

My father’s accident was my introduction to “disability” as the word my father used to describe himself.  I didn’t spend much time thinking about society’s role beyond the easy to spot prejudices people obviously had upon seeing him, how some people were worse than others, either in the way they spoke to him with barely concealed pity or the way they raised their voice or slowed their speech as though he were intellectually impaired as well.  I was acutely aware of the many places he could not go because they were not accessible to his wheelchair.  And I was aware of the physical pain he was often in. But I didn’t think society played a role in creating his disability, but rather it exacerbated it.

I’m going to interrupt this train of thought for a second while you watch the following short video (1:26) via Ollibean, the terrific site that “unites disability-centric news & editorial led content- connecting families, self-advocates, & professionals through social conversations.”

This article (by  Lisa Egan) is a great one, sent to me by the wonderful, incredibly, kind and extremely thoughtful, Nick Walker, who is interviewed ‘here‘ on Shrink Rap Radio.  After I watched the video and read all the links, I felt I was beginning to understand.

My father’s accident left him physically impaired, but with the necessary accommodations in place he could still get around and do many of the things he enjoyed.  His quality of life was greatly reduced because many of the things he once enjoyed, playing tennis, skiing, were no longer possible, but he could do other things, swimming, gardening, spending time outside.  (Still, I feel confusion and can tell, I’m not quite there yet.  I think I have an understanding, without completely understanding, if that makes any sense.  And I’m also getting hung up on semantics.  But I have to keep going with this.)  I understand my father was impaired, but was he disabled?  Obviously he was to the degree that society didn’t do a great job accommodating him, but what about his weakened body and the pain he was in that kept him from pursuing things he enjoyed and would have done had he not been in such physical pain, such as travel?

*Those of you who understand all of this, please feel free to jump in and correct me.  As I said, I am processing!

Autism.  When my daughter was diagnosed I didn’t think of her as disabled, in fact I remember resenting the notion that anyone might think of her as such.   I understood she was different, and, sadly, I also bought into the “disease” thinking, which I’ve written about on this blog.  As my thinking evolved I thought of her as neurologically different from the majority of people and as such would face more challenges in the world, than if she were not Autistic.  Still later, and more recently I thought that because she cannot reliably use either speech or independent typing to communicate yet, she had a disability, but that her disability had little to do with society and was very much a result of the many issues she faced, physically, emotionally and neurologically.

The idea that society could and should do more to accommodate her and those like her is something I have witnessed first hand and am fighting for.  Yet, this idea that society created her disability, either some or all of it, is a new concept.  So last night I spent many hours reading.  This post from Savannah on her blog, Cracked Mirror in Shalott is terrific with great links to four other bloggers whose work I have tremendous respect for:  That Crazy Crippled Chick – A Musing on the Word Disabled, Radical Neurodivergence Speaking – In this place, in this activity, I am not disabled, Yes, That Too – Ablism is to Blame and  Autistic Hoya – Constructing Disability.   And finally this piece from Sparrow Jones, Voices of Experience on her blog Unstrange Minds where she writes, “In contrast to impairment, Reindal writes about disability as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.”

And this is why all of this matters so much.  Because we as a society are adding to impairment.  My child is Autistic.  There are things that are much harder for her to do than the majority of the population.  Her hardship is exponentially increased by society’s lack of accommodations for her and those like her.  This post about my experience at the AutCom Conference last fall is an example of simple accommodations  easily put into place.  My daughter’s life will be infinitely easier if people were better informed about autism and what that means.

Society plays a role in all aspects of her life, from the education system and how we perceive inclusion, to air travel, where she could be allowed to sit by the window to accommodate her need to look out the window to better manage her stress, just as someone in a wheelchair is given an aisle seat and not expected to sit just anywhere.  I could go on and on, but I’m interested to hear from all of you and hear your thoughts on all of this.

Emma and Henry type to each other with Pascal and Harvey’s assistance

H &E type

Try to Imagine

Imagine… Imagine that from the moment you were born every aspect of your being was evaluated and studied with a critical eye.  Imagine that who you were, the way you spoke, moved and behaved was seen as deficient.  Imagine that from an early age you were talked about as though you didn’t understand and even if you did not fully understand everything said, you understood the emotions behind the words, the disappointment, the fear, the anger, but you had no idea why you had caused such a response.  Imagine how that would make you feel.  Now imagine how you would feel if you understood every single word uttered, but you could not speak or make it known to others that you understood.  Imagine how you’d feel if you grew up believing your very existence caused others discomfort, pain and suffering.

Imagine that as a small child you were assaulted by light, sound, touch, odors, taste, things that did not cause others pain, but that made your life almost unbearable.   Imagine that you also felt people’s energy intensely but were often confused and overwhelmed by these feelings.  Imagine that when you cried in distress you were greeted with anger, confusion or were told nothing was wrong and to stop behaving this way.  Imagine how you would feel when you finally located the correct words and spoke them, people misunderstood you, became angry with you or you were told the tone you used was “wrong”, inappropriate or the volume with which you spoke was too loud or too soft.  Imagine trying as hard as you could to speak as you’d been instructed, but no matter how much you tried, you never seemed able to get it “right”.  Imagine what that would be like.

Try to imagine how you’d feel if you mustered up the courage to connect with another human being only to be shunned, teased or rejected and told to go away.  Imagine what it would be like to want to have friends and play dates and sleepovers but you had none.  What if you tried to make friends, but when you tried to connect you weren’t able to and didn’t know why.  What if your attempts to be friendly were seen as acts of hostility.  What if you punched someone on the shoulder because you’d seen friends do that to each other, but when you did it you were taken to the principal’s office, reprimanded and threatened with expulsion.  How would that make you feel?

Try to imagine what it would be like if the few things that brought you joy were stopped or taken away from you.  Imagine if you loved nothing more than to jump up and down, that this motion made you happy and calm, but when you did this you were punished.   Just imagine what it would be like if the things you found fascinating were ridiculed and joked about.  Now imagine that you are unable to make words form in your mouth so that you could say anything to explain or protest.  Or imagine what it would be like if you were able to speak and when you did, you were told your words were unacceptable.  You were threatened with punishment and institutionalization.  Take a moment to really imagine how that would feel.  Imagine what it is like to need help, to have to rely on people and to have those people hurt you, betray you, get angry with you over and over again.

Just imagine how it would feel if experts talked about your neurology as a deficit.  Imagine how it would feel to be told over and over that you were neurologically incapable of understanding what another person feels, and that you couldn’t truly understanding your fellow human beings.  When you suggested you felt a great deal, when you talked about how painful it was to look directly into people’s eyes because it was like seeing into their souls, or when people went to hug you it made your skin crawl or the odor emanating from the other person was too overwhelming, imagine what it would feel like to have people suggest you should just try harder or that you should do it anyway.  Imagine just for a moment how you’d feel if those same people then accused you of being difficult and told you it was impossible to have a “rational” conversation with you or you were told you were rude when you confronted them with their insensitivity.  Imagine what it would be like to be dismissed and silenced over and over again.  Just try to imagine what that must be like.

Try.

Try to imagine what it might be like to be Autistic.

Musings on Fear, Dehumanization and Other Light Topics Worthy of A Friday Morning…

I have always had an irrational fear of institutionalization.  Irrational because I have no “diagnosis” or valid reason that would make such a fear reality unless you count being high-strung, emotional and I’ve been told over the years, “too sensitive” but I don’t think people are ever actually institutionalized for that… or are they?

Maybe it was the stories I was told as a child about a couple of my relatives, now dead, who were institutionalized against their will by family members intent on getting them out of the way, or perhaps it was from all those months my father spent in the hospital clawing his way back to the living after a horse back riding accident that left him disabled for the remainder of his life, or maybe it was the books I read and was drawn to as a teenager.  Books detailing (supposedly) real lives lived such as Dibs in Search of Self, Sybil, The Three Faces Of Eve and Go Ask Alice.

Whatever the reason, I had and have a terror of being “put away”, locked up somewhere.  This fear includes hospitals, group homes, prison, any place that removes my ability to walk away when I choose, and places my care in the hands of others.  As a quick example of how much this fear permeates my life, I gave birth to both my children naturally and in birthing centers, not because I have an aversion to drugs, (I had a lively and deep attraction to drugs of all kinds during my teens and early twenties – I do NOT recommend this) or because I’m a granola-eating, Birkenstocks wearing vegan. (I’m not.  Not that there’s anything wrong with anyone who might fit that description.)   No, I gave birth naturally and in birthing centers because my fear of hospitals aka institutions is so great I begin to feel real panic even writing about it.

When I had to have a partial hysterectomy last winter I informed my surgeon I wished to be the first one in and assured him I would be going home that evening.  When he suggested I might want to stay overnight at the hospital, that even in the best of circumstances I would probably NOT be released to go home, I became so agitated and visibly upset he relented and said he would do all he could to get me home that night.  And sure enough, despite being so out of it I could barely put two words together, let alone a whole cohesive sentence and had a head the size of a watermelon from having been hung upside down for more than five hours, I managed to get myself upright.  My husband, using all his strength half carried, half dragged my useless, morphine infused body out of the hospital and into the relative safety of a taxi driven by a kind, middle eastern gentleman whose upper head was encased in white cloth aka a turban, that reminded me of medical bandages.  In my drugged state I kept imagining I saw blood pooling on the white cloth and had to open a window so as not to hyperventilate and throw up.  As the taxi careened along the streets of Manhattan, I allowed my body to slump against my poor, patient husband who was busy distracting himself with the latest New York Times Crossword puzzle.  Even so, all of this was well worth the effort as I made it home and into our bed by 10:00PM that night.  Panic attack thereby averted. *Whew*

When my daughter was diagnosed with autism, my fear of  institutions was the one fear, outstripped by any other, that brought me to my knees.  For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died.  It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments.  For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal.  It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world.  Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.

Judy Endow is a writer, a consultant, a mom, who conducts workshops on Autism related issues.  Judy is Autistic and spent several years in an institution as a teenager.  In her terrific book, Paper Words she discusses how she perceives the world by the movement and sounds of colors and writes,  “… please entertain the notion that a person who has an internally wired neurology to enable this, though a bit different from most, may not be any less intelligent, or indeed any less of a human being, than the typically wired folks, who are clearly in “The Majority” in the world-people world that we all inhabit.

As I read Judy’s powerful book I reflected on the nature of institutions, disability, aging and difference and how we humans tend to dehumanize those we believe to be weaker than ourselves, whether physically or mentally or both.   Until we can begin to embrace that which we do not understand or have experienced we cannot really know the harm we do, intentionally or not to those who must rely on others for understanding, accommodation and help.  Most of us, at some point in our life, will be dependent on another human being to have, at least some of, our needs met.  Let’s all hope we are fortunate enough to have someone who understands theirs is not a position of power, but a gift each of us can give to another, until it is our turn to receive it.

Em’s Self-Portrait – January, 2013

Self-Portrait

Where Fear Leads Us…

I used to work at an ad agency.  One of the first things I learned was that there is one emotion that motivates people more reliably than any other.  Fear.  Fear compels people to do a great many things they might not otherwise do.

Once we’ve become convinced that something is worth fearing it is extremely difficult to reverse.  When we speak of Autism using words and phrases that cause us to fear Autistic people, we are doing tremendous harm in the short and long-term to that population, harm that will be very difficult to reverse.   Convincing people to feel fearful about something or someone is one of the easiest things to do.  Convincing them, once they are convinced, that it was all a “false alarm” is extremely hard.  So when those first news reports came out linking Aspergers with the shooting at Sandy Hook Elementary School, it only took an unethical few to do tremendous damage to an entire population of people.  Despite the fact that if you google “Aspergers and violence” the first dozen pages that come up are articles stating that there is absolutely NO connection between Aspergers and violence.  And yet, my Autistic friends and I are terrified.

I am frightened for my Autistic daughter and for those I love and care about who are Autistic.  I am frightened by what people will assume and how they will then treat those they assume are Autistic.  I am frightened for my friends who are Autistic, will they be safe?  Will a non autistic person hurt them, say cruel things to them, treat them differently because they fear “autism” and therefore “Autistics”?  I am frightened even though the truth is neurotypical people are far more likely to commit acts of violence than Autistics.  Watch these videos on Youtube ‘here‘ and ‘here‘.  Videos showing Autistic and disabled people being tortured by others.  Read these reports ‘here’, ‘here‘, ‘here‘ and ‘here‘ about the systematic abuse of Autistic people, abuse that continues unabated all the time.

It is WRONG to condemn a group of people, people who have suffered at the hands of those who now accuse them, a people who have been marginalized, some of whom cannot defend themselves because they do not speak and have not been given the means to communicate effectively through any other means.  It is important that you know.  It is important that you understand the ramifications of connecting autism with murder.   I want you, no, I need you to understand why the words we use, the constant stream of negativity in relation to autism is causing untold damage to my daughter, to your daughter, your son, your Autistic child, to their futures, to the people I love, to my friends, to all who are Autistic and have had to deal with exactly this kind of prejudice their entire lives.  It has to stop.  It has to stop.

Children were killed, murdered.  The horror is unbearable.  But to add to an already heinous act by targeting a group of people and making it about them instead of what has happened, is adding more pain and agony to more children’s and people’s lives.  Innocent people.  Innocent children.  Don’t we see that?  Can’t people see we’re making it worse?   We aren’t ensuring our children will be safe with these beliefs.  We aren’t making the world a better place with more prejudice, bigotry, false assumptions, and our fear.  Our fear is what drives us to conclude that we are fighting a false enemy.  Our fear is what compels us to hurt, lock up, institutionalize, condemn and torture.  Our fear is what causes us to commit acts of violence against those we’ve deemed violent.  Our fear…

1Freedom Tower

“Nearly Every Moment…”

My friend Paula Moerland allowed me to post this.

Nearly every moment of my existence
Has been filled with the necessity of caring for this body
This emotional body, so distraught
This mental body, so busy
This physical body, so out of balance
Always

I am not selfish

I am exhausted

When I first read this I had to close my eyes and sit very still.  And as I sat, I remembered something my father said to me so many years ago when he was in a wheel chair. He told me constant pain was exhausting.  I was surprised by this.  I had never before considered what it must be like to be in constant pain.

None of us are getting out of here alive and while we live our lives there’s going to be pain, but some people have to endure terrible suffering.  Too awful for most of us to fully understand or even know.  All of us know someone who has dealt with inordinate pain and yet somehow managed to find a way to transcend it, or used it to create something magnificent.  Those people are guides.  I hear their stories and am in awe of their ability to cope with physical and mental abuse often at the hands of those they should have been able to trust, the very people who should have been there to comfort them, to care for them , but instead turned on them.  Yet despite those wounds they are trying to transcend it, they have the desire to rise above it, not give into it.  There is tremendous power in that.  We humans have an astonishing ability to not only endure, but create astonishing beauty.

Thank you Paula for sending me your beautiful words.

New York City in October

The UN and Henry’s Struggle To Be Heard

Another short post today as I have a meeting in another two hours.

As I wrote yesterday I went to a meeting at the UN – The Fifth Conference of State Parties to the Convention on the Rights of People With Disabilities moderated by Juan Carlos Brandt, Chief, Advocacy and Special Events, Department of Public Information, United Nations.  The specific event I was invited to attend entitled:  “Urgency and Hope, Report from Global Leaders in Autism Research, Education, Treatment and Policy” Joshua Weinstein, CEO and Founder of the organization, icare4autism, presented with Stephen Shore, Beth Diviney and Eric Hollander presenting as well.  ICare4Autism is the organization that invited me to attend their conference in Jerusalem this past August, which I wrote about.

Juan Carlos Brandt and Joshua Weinstein 

I asked an Autism group I’m a part of whether anyone had messages for me to take to the event and a number of people wrote things such as A. who asked that I say something about “using a functioning level (usually an assumed one) to silence someone is never ok” and S. who wrote “Disability Rights are Human rights.  More specifically Autistic Rights are Human Rights.  We deserve to be treated as equals.”  Several asked that I stress the need for all to presume competence and P. asked that I be sure to say, “don’t assume I have nothing to say, just because I do not speak.”  But the first person who reached out to me was Henry who sent me this:

He wrote:  “Could you please tell them I would like to be included and learn with friends my age and where I live? I wrote this.”I am a self advocate. I want the same rights as everyone. 

Today I read about Martin Luther King.
The worksheet said because of Dr King’s work, the Civil Rights Act of 1964 gave equal rights to all people.
I am a person.
I want these rights.

I want to go to school in my neighborhood.

Why can’t I?

Joshua Weinstein and Juan Carlos agreed to allow me to show Henry’s video, but when they tried to run it, they weren’t able to as evidently the internet was down in the entire building.  (It’s the UN!  And we think we have technical problems!!)  So as they were trying to get the video up and running I read some of the quotes from others.    I’m sorry Henry! But I’m going to keep trying.  I know many others are too.  To everyone reading this, please watch Henry’s video and “like”, comment and share.  This is one person’s struggle, but it represents the struggle of so many.

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It Begins With My Father

Emma – This morning

 

Yesterday’s post inspired more thought.  I have often asked myself why?

Why did I believe all those specialists, doctors and “Autism experts,” particularly as I have always been so wary of authority figures?  Why didn’t I question the specialists, why did I engage in a war for so long?  Why wasn’t I one of the parents who saw through the autism = tragedy model?  I have always been somewhat of a rebel, what happened to that rebellious streak?

The answer begins with my father.

My father had a horse back riding accident when I was nine years old.  He was just shy of his 50th birthday.   It was a Wednesday.  I was home sick with the flu.  For years afterward I blamed myself for his accident.  If I had put up a bigger fuss, maybe he wouldn’t have left.  If only I’d been sicker he would have stayed home with me.  If only I had begged him to read another chapter from the incomprehensible book he’d been reading to me, if only, if only…  But that wasn’t what happened.  He left.  He did not come back as promised.

The next few weeks are a blur of images and sensations.  Sounds of my mother crying behind her bedroom door.   My grandmother arriving in a dramatic swirl of lavender and rose perfume and silk, her hair perfectly brushed, the grey curls delicately framing her beautiful features, her gnarled, arthritic, fingers turning the pages to one of my school books as she helped me with my homework.  The afternoon I yelled, “I hate you” to my mother who dropped the rolls of toilet paper she was carrying to the floor.  Her receding figure disappearing behind the door to her bedroom, their bedroom, now half empty.  The rolls of toilet paper, partially unfurled, lay in disarray at my feet.  My fury, shame, and horror, tangled and confused, waiting for an acknowledgment I was incapable of giving, instead I stormed into my bedroom and kicked the drawers of my bureau, leaving the mess on the floor in the hallway for someone else to pick up.  My feelings, I learned much later, were not as easily left behind.

Visits to the hospital.  Doctors in white coats, clipboards, a red light next to my father’s bed, the beeping emanating from a monitor overhead, his life reduced to one thin jagged line on a screen.  The needles inserted into his veins, pumping clear liquid contained in bags held by poles and hooks into his damaged, broken body.   The nurse who crackled as she moved, her shoes squeaked as she approached.  The smell.  That horrible, unmistakable, antiseptic smell that burned my nostrils and pulled at my stomach, making me worry I might vomit.  The emotionless, grave, tones used by the doctors, carefully offering opinions as though they were a given, as though fact.  The statements, each a warning, a flag being hoisted up the mast of hopelessness –  “He may not make it.”  “He may be paralyzed for the rest of his life.”  “He will never walk again.”  Each pronouncement proven wrong.  Each learned statement shown up for what it really was, nothing more than a thought.

My father confounded them all.  He, alone, it seemed to me at the time, had risen up from the dead, shown them their stupidity.  He was underestimated time and time again.  For decades, through sheer force of will, determination and hard work, he showed the medical profession, and me, what was possible.   And yet, even my father eventually succumbed to a wheelchair the final decade of his life.  I saw first hand the prejudices, the attitudes of people who came into contact with him. And while his was also a disability, it was of a very different kind from autism.  He and by extension, I, never “accepted” it.  His neurology was unaffected as his legs gave out.  He needed support, yet proudly refused help.  When he died, “his” doctor refused to come to the house, saying my father was no longer under his care because he hadn’t been to see him in so many years.  We were forced to call 911.  My father had no respect for the medical profession.  He had proven them wrong.  His life was a testament to that.  He believed in self reliance.  He believed in himself.

When we were given Emma’s diagnosis, without thinking, I knew what I had to do.  I, too, would confound all the naysayers, those who said, nothing could be done.  Those who grimly wrote evaluations, itemizing my daughters deficits with matter of fact, clinical words.  Her vibrant personality reduced to a critique, her intelligence, not applicable, not even a number as she was deemed impossible to test.  I would show them, just as my father had.  It was the beginning.  I didn’t know it at the time.  I didn’t realize I had chosen the wrong road to go down.  I didn’t see that my initial, knee jerk reaction to her diagnosis was correct after all.  The word “autism” wasn’t what was wrong.  It was the information and interpretation of what that word meant that was wrong.   If you’d told me this at the time, I would have responded in rage.  I would have told you, you were wrong.  I would have told you I could save her from the diagnosis, when what I needed to do was save her from the misperceptions surrounding the diagnosis.

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Autism, Assumptions and Perpetuating Misperceptions

I was going to write something about the Aurora shootings, but I think it’s better if I give some links to things others have written.

This link is from Lydia Brown on her blog Autistic Hoya – All I Want to do is Weep.  She wrote it last Friday, July 20th before Joe Scarborough, whose son is Autistic, weighed in with his damaging, destructive words, needlessly adding fuel to the flames of ignorance and misperceptions that roar whenever the word autism is spoken.

Then, just as Lydia and others within the Autism community predicted, Joe Scarborough said,  “As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again..”  He added, “Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not.”

His words, so predictable, so incredibly stupid it would have been comical had it not been so very harmful to so many.  When I read his comments I thought, people will read Lydia’s piece and assume she’s psychic, because that would be the only explanation for her ability to predict such a thing.  Right?

Kassiane Sibly wrote on her blog Radical Neurodivergence Speaking – Open Letter to the Media in the Wake of the Aurora Shootings

Paula Durbin-Westby wrote: Autism, Aurora Shooter, and Actual Crime Statistics

Rachel Cohen-Rottenberg wrote: Despicable: Joe Scarborogh’s  Words on Autims and Mass Murder

And finally here is the petition Rachel started, demanding Joe Scarborogh retract his statement.  Please sign.  This is too important.

Sign this Petition

These “theories” and it seems they are always “theories” which appear to be code for “opinion” are doing damage to people who are living their lives in a society that not only does not understand, seems unwilling to understand and even actively refuses to understand despite all the people who are trying to help them understand.

Autistics are saying – LISTEN TO US!   And we look around and say, huh, I don’t hear anything.

Autistics are saying – STOP SAYING THINGS ABOUT US WITHOUT INCLUDING US IN THE CONVERSATION!  And we look around and say to one another, Huh.  Did you hear something?  Nah.  Carry on.

Autistics are saying – NOTHING ABOUT US WITHOUT US and we say, I don’t understand.  Why are they so angry?

Autistics are saying – YOUR MISPERCEPTIONS ABOUT US ARE HURTING US and we say, oh those autistics are not like my child, that’s not what my child would say.  My child is nonverbal.  My child can’t type.  My child doesn’t have a blog.  My child can’t say the things those Autistics can say and do.  My child is different.

How do you know? 

How do you know?

Joe.  You made a mistake.  Retract.  Apologize.  Make amends.  Have an Autistic on your show.  Listen to them.  Listen to your son.  Do the right thing, educate yourself.  You have a massive following.  You could make an incredible difference to so many lives including your son’s and your own.

I will end with this thought. I choose to presume competence, not just in Emma, but in myself and in my fellow human beings.  We ARE capable of listening to one another.  We ARE capable of shifting the perceptions of autism and Autistics, one person at a time.  I believe that, because to do otherwise is to live in a world I cannot and do not want to be a part of.

Be Honest And Why That Often Hurts

Every morning I sit down to write a post for Emma’s Hope Book on this computer in my studio and look at the traffic speeding to and from Manhattan on the 59th Street bridge.  Sometimes I already know what I want to write about.  Often  I thought of something the night before, or if Emma did something I feel compelled to write about, I do.  But there are other mornings when I have a number of things I want to write about, but none seem ready to be put on the page.

Be honest.  I repeat to myself each morning before I begin.  But there are some mornings I don’t want to be honest, because honesty can be painful.  Some mornings I just want to write some other version of my life, a fantasy that doesn’t require me to dig down into the darkness.

Cover of "Boy Alone: A Brother's Memoir"

Cover of Boy Alone: A Brother’s Memoir

I read a memoir a few years ago, by Karl Greenfeld called A Boy Alone.  Karl’s father, Josh Greenfeld wrote a memoir about his son, Karl’s brother, A Child Called Noah  several decades earlier.  I didn’t love Josh’s memoir, but I was enthralled with Karl’s as he writes beautifully.

(Spoiler alert – do not read the next 2 paragraphs if you have any intention of reading A Boy Alone as I am going to give away the entire ending.)

Toward the end of the book, Karl writes about moving away from home and how over time, as he struggled with addiction and other challenges, his autistic brother seemed to find himself and eventually could not only live independently, but seemed to have a maturity and wisdom Karl was still struggling to obtain.  As I read these pages I began to read more quickly, trying to figure out how this could have happened, what therapy helped Noah, what exactly was it that propelled him forward, allowing him to become verbal and freeing him from a  life of institutionalization?  But Karl was not forthcoming with this information.

Karl ends the book with doctor’s reports from the various institutions Noah was placed in. The reports are horrifying, the drugs, the restraints, the “therapies,” sadly commonplace in such places are all documented in the dry, hollow tone of doctors and caregivers who have completely separated themselves from the human beings they are administering to.  As I read, I began to reluctantly realize that these reports were the truth, not the previous pages of Noah’s miraculous progress from institution to independence and I wept.  I hated the book.  I felt betrayed.  I felt manipulated.  That book, A Boy Alone has haunted me ever since.  Even now years later I cry when I think of it.

I’m nine-years old home sick with the flu.  My father comes in to read me a story before he goes out horseback riding.  He says to me before he leaves, “I’ll finish the story when I come home.”

“When will that be?” I ask him, turning away from the bright sunlight pouring in through my bedroom window.  

“Soon,” he promises.

Only he never came back to finish that story.  That afternoon he went over a jump with his horse where there was a low hanging tree branch from a massive oak.  His horse cleared the jump, but in doing so my father was crushed by that branch.  He fell to the ground, his back broken.  Paramedics were called and sped him off to the hospital where it was determined he might not live.  Later we were informed he would likely be paralyzed for the rest of his life.  He spent many months in the hospital.  Every few weeks the doctors would gravely give us their opinions.  They were almost always wrong.  Eventually he came home, over the years of physical therapy, exercises, sheer force of will and determination, my father was able to walk and even got back on a horse.   But the nerve damage to his legs was extensive and as he aged he lost more and more of his strength.  The last decade of his life was spent in a wheelchair. 

I write this because, though I didn’t know it at the time, his accident changed everything and has informed my life today in ways I could not have imagined.  I saw how people treated him.  I saw how a wheelchair had the power to change the conversation.  Often it was a subtle change, but there was no mistaking the looks of pity, the attempts to disguise their discomfort, the undisguised irritation strangers would display if his wheelchair caused them to slow down, move out of the way or forced them to accommodate him.  My father was a proud man, athletic, capable and prided himself in never depending on anyone for anything.  And yet, in the end he had to and he hated it.

Be honest.

I am.