Floating between nations as an Autistic émigré and why failure is no reason to quit

Click here for Audio version, read by author

I spent a day last week in total shutdown, unable to speak or interact with peers, seeking only the deep pressure therapy that my Autistic body needs when it is overcome by emotion.  After 2 years of planning and hard work, I had a dream taken away by the very same circumstances that pushed me to chase my dream in the first place.  I want to live in Toronto, Canada and open a school for special needs kids and their siblings, with a full arts and sports program.  A place where kids growing up like I did who are shoved into indigence simply because the world cannot see their intelligence and skill, are given a fair chance to succeed.

It is possible that what I write here today will make some of you angry.  But this is my story, and I will tell it with the truth I know.  If you wish to open your mind to the experience of living with a disability, stick with me all the way to the end.

A little history

I grew up outside of Atlanta, Georgia.  I was luckier than most to have been born into a stable family, where I was the youngest by 17 years, and parent’s who had experienced parenthood from birth to adulthood before I was even born.  When my mom discovered that the local public schools did not offer Kindergarten, she was able to place me in a Parochial school for 2 years to give me a necessary head start.  She knew I was not like the other kids, but luckily for me my family cherished diversity.

Despite this upbringing, it was the outside world that proved to be trouble.  I struggled to make good marks in school, couldn’t read until I was 9 or tie my shoes until I was 13.  I memorized all the science questions for the game Trivial Pursuit when I was 6, and played every piece of violin music for memory, even the difficult concertos.  Intelligence didn’t seem to be an issue, but performance by standard measures of the time was lacking.  I just couldn’t prove what I could do.

The popular wave of standardized testing was gaining momentum towards the end of my 10th year of school.  Attending college was a main focus, and they felt I just didn’t fit the mold.

Only, I did fit the college mold.  I was wired to succeed in a college setting.  The problem was the public schools were pushing highly unprepared students into something they didn’t see value in. 

I dropped out of school and stumbled into a society I just didn’t feel I belonged in.  Autism had not yet entered my vocabulary as I was not diagnosed until age 26.  With no answers, and no support beyond the pure parental love of my family, l felt abandoned by society, disposed of by the schools, and ignored by the classical music world.

After my diagnosis, I spent the next 12 years healing my wounds, educating myself, and sharing my deepest thoughts to the world I felt didn’t want me around.  You see I just couldn’t let go of this notion that people are much better when they are open, connected, and educated.  If I couldn’t find a place for myself in society, I was going to make one.

Making friends with Canadian’s

It is true there is a fundamental difference between the Canadian view on life and the American one. American society is a sanguinary society, built upon the ideas of revolution and the never ending argument of born free versus earned freedom.  My Canadian friends argue just as much as American’s about how their country should be run, but I’ve yet to meet a Canadian that says they shouldn’t have to help pay for universal healthcare or public education for all.

This difference appealed to me.  After nearly 35 years of trying to cross the ever moving boundary between poverty and independence, the idea of moving to Canada to finally grow was exhilarating.  It was this energy that drove me for the next 2 years.  In fact, in my application for permanent residency (a last step I took first because immigrating is a confusing process for me), I included a letter telling this to Canadian Immigration Officials:

Dear CIO:

Five years ago I met an amazing Canadian family who were living in the United States.  Intrigued by their stories of growing up in Canada, I started to shift my eyes northward.  It wasn’t long before I knew that Canada should be my home.

For the past 22 years I have worked in education striving to help students in need.  I began teaching young by staying after school to tutor classmates who were struggling to keep up with the class.  By the time I was 16, I already had a roster of my own students.  I have rarely worked for anyone else beyond volunteer work.  I have served on numerous boards and continue serving on advisory panels today.  My work centers around teaching music to special needs students, and Autism advocacy.  I majored in Psychology, with a minor in Education, at Agnes Scott College in Decatur, Georgia.  I did complete 65 credit hours before a divorce left me financially unable to continue.  Had the institution I attended offered an Associates, I would have had sufficient hours to obtain one.  To date, I have taught hundreds of children to play violin, viola and cello.

Unstoppable in my pursuit to better education and access to arts for students with disabilities, I have walked my own path.  I continue to work on building my own full time school for students with disabilities and their siblings, allowing for these students to attend University and enter the workforce as entrepreneurs, should they so desire.  Future plans include the manufacturing of instruments in Canada that will benefit families who struggle to pay for instruments and lessons in what I like to call Note4Note.  

Being born in the United States has put me at a disadvantage in my line of work.  It is no secret that that the typical American struggles with finding value in the arts and special education.  Investors in the US look for companies with high dollar return like technology companies or pharmaceutical companies.  A “cure it with a pill” oriented society means valuable community and cultural services such as mine go underfunded, leaving us to work out of pocket.  It is true I have worked many more hours than I have been paid for.  It is exhausting, but I have continued because of the impact my work has had on students.  However, it also means I do not have the financial resources in the bank that CIS wishes to see.

My work is a valuable community and cultural commodity.  I am successfully teaching students with disabilities to acquire the skill of playing a musical instrument equal to that of their typically developing peers.  I feel this skill will have a positive impact on communities in the greater Toronto area, where I wish to reside.  Currently, there is a demand for my skills that is not met by anyone in Toronto, as you will see in the attached letters from Canadian families.  I have also provided letters from others who have worked with me over the years.

I must admit there is a personal benefit for me in becoming Canadian.  I seek a sense of home.  Though I was born and raised in the United States, I can confidently say I do not think like a typical American.  I always felt that I simply did not belong in a place where people looked for reasons to be at odds rather than form a loving community.  Though these places do exist in the United States, the prevailing mentality of “profit over everything” runs rampant.  In my visits to Canada to be with friends, I am pleasantly overwhelmed by this deep sense of being at home, a feeling I have never had.

In your assessment of my qualifications, I ask that you please take into consideration the uniqueness of my work.  What I do simply cannot be quantified on paper, but is reflected in the supportive voices of those who have benefited from my work.  There is nothing more that I want in this world than to become a Canadian where I can see my passion for teaching spread into the minds and hearts of  Canadian families.  

Thank you for considering my plea.  

By sharing this letter with you, I realize I open myself up for ridicule and judgement.  After all, my family immigrated from Italy in the early 1900’s to pursue a better life in America.  But for me it is not home.

Ever declining societal climate for people with Disabilities

When I was 8 years old, I used to play with the neighbourhood kids at the end of our suburban street.  The road abruptly ended into a long dirt driveway which led to a home in the woods that we were all certain was owned by an evil monster.  The house sat along side a small creek that always ran clear, fresh water to quench the thirst of the deep forest around it.  On the edge of that forest, where we couldn’t see the house, was a large crevice that we called The Cliff (looking back it was probably 7 feet high, but to us it was the grand canyon).  We could ride our bikes, imagine we were super heroes, and without fail, one of us would have to jump or climb The Cliff.

One afternoon while playing with the neighbourhood trouble maker, because outcast kids didn’t mind I was odd, we decided to jump our bikes over The Cliff.  After all, we had BMX bikes so we were unstoppable!  First, the troublemaker made the jump and just barely made it, falling off his bike on the other side.  I was a good foot shorter than he, which I failed to consider when I decided I could make that jump too.  I went way back and got a running start, peddling as hard as I could.  As I approached the edge I pulled my weight up, pulling my handle bars up into the air, and as I got to the other side, my front wheel scraped the edge of the landing and sent me down into the crevice.  I wasn’t hurt too badly, but I was now stuck.

We decided that it was best to send my bike up first and then I could get help climbing up.  We hooked our belts together and used it to hoist up the bike (so maybe it was even shorter than 7 feet).  After the bike was safely lifted, I reached up my hand.  The troublemaker threw down one end of the connected belts so I could climb up while he pulled on the other end.  I was tiny so this was no strain on him.  As I made my third step, and now completely off the ground, he let go of the belt sending me to the ground on my back.

I laid there stunned.  I remember thinking I would never be able to breathe again and just as I thought I was going to die, I rolled over to my side and gasped for air.  The trouble maker got on his bike, holding onto mine beside him, and peddled away.  Now I was in a crevice, without a bike, and all alone.  I started walking along The Cliff to find another way out.  I walked around the path and ended up back at the creek just behind the trouble makers house.  There was my bike, leaning up against his fence with a flat tire.  Defeated, and feeling a bit rejected, I walked my bike home.

I have though of this story often over the past 10 years.  Though this type of interaction is not uncommon among children, and I certainly hold no grudges on that kid, I can’t help but feel that same series of emotions as a person with Autism fighting for a place in society – hope to determination to momentum to failure to stunned to rejected to abandoned. 

As an American female I watch men debate about my body while excluding the female voice. 

As an American with Autism I watch Neurotypical people debate about my autism while excluding the autistic voice.

As an American living under the federal poverty line I watch millionaires debate about my right to live, eat, work, be educated, and receive medical care while assuming the poor are living in poverty on purpose.

As an American single parent I watch the debate of what is best for my children continue without my consent because they believe I failed at a marriage that would have solved all of our problems.  Not once have I ever been thanked for choosing life.

Though some of you may not see it, the abrupt shift in our government to remove Medicaid, gut the ACA, throw schools to private industry, and end federal oversight on the decisions states make about their most vulnerable populations has an immediate impact on my day to day life.  And its not just in what I stand to lose monetarily, but it is also the increasingly more common acquisition of the mindset that some humans are disposable.

It is painful for me to admit that the land of my birth has failed to feel like home to me.  The current American culture and leadership has made it clear to me that I am not wanted here.  Not unless I cure myself of Autism with a marketable pill I invented and become a millionaire who wants to invest in political power.

When Canada said no

Navigating any governmental process is a challenge, but that challenge increases when you have a disability that hinders executive functioning and communication like Autism does.  This is usually where I get the “but you seem so normal” or “but you write so well” comment.  Perhaps I do, but if you make that statement then you don’t really understand what Autism is.  Allow me to help.

Being human is a CMYK process.  CMYK (Cyan, Magenta, Yellow, blacK) is the same process used for printing which allows colours to be combined in almost infinite ways to produce a spectrum of colour.  Some people are complimentary colours, such as green and red, where the two people are opposites but their differences compliment each other’s strengths and support each other’s weaknesses. Some people are similar to each other, like blue and green, overlapping each other in similarities but still having distinct differences from one another.

K, representing the greyscale, deepens our human colours.  The greyscale is our human neurology that can either deepen our human colour, or obscure it.  Disability rides in the greyscale and for many of us with Autism, we feel it deepens our human colours, while also obscuring certain parts of us.  When the greyscale overtakes the colour, the person has succumbed to mental illness beyond his or her own ability to self-help.

To me this scale evolves.  Some of us start more obscured by the greyscale of disability and learn through years of hard work and therapy how to focus on the enhancement it brings to our human colour.  Try not to think too deeply on this analogy.  I am merely trying to illustrate that disability is an element of a human, and not the whole of that human.

Though I have adapted very well through the unwavering support of family and friends, and through my pure tenacity that helped me use neuroplasticity to my advantage, I still live with the struggles of autism.  We often talk of the self-made man when recognizing business achievement and financial prowess, but we seldom use that term self-made to recognize the neurological growth of people like Temple Grandin or Naoki Higashida or Carley Fleshmann.  (And if you don’t know these, people you should look them up.)

Don’t assume I mean I am curing myself of Autism.  I have no need or desire to do so.  I have, though, evolved to live with my neurological roommate, albatross and all. 

When I applied for Permanent Residency for Canada, I did not comprehend the process all too well.  In fact, I still struggle with processes such as taxes, business incorporation documentation, sales copy, insurance paperwork, and any other legal type structures that require a flexibility in my use of the English language.   Perhaps there are other steps I should have taken first, but Permanent Residency was the first application I put in.

I ran fundraisers and saved pennies to pay the $1000 application fee.  I continued to sell, barter, and trade so I could afford the passport, CELPIP test, and doctors visits to update our medical records which I had to pay out of pocket (Georgia opted out of the Medicaid expansion).  I began to network with Canadian music schools, joined the advisory board of Autism Canada, and even traveled to speak at an Autism event in Ontario with the help of Canadian friends and sponsors.

I quickly realized I needed to be closer to Canada so I could continue to build my impact.  I had something to offer that Canadians needed and travelling from Atlanta, GA was not something I could afford without consis fundraising.  In six months, I had grown a larger, more promising network in Canada than I had grown in a lifetime in Georgia.  Even though I had some amazing friends and students in Atlanta, I could reach more students with disabilities by moving my hub of operations to Canada.  The Canadian ethos is one of evolution, not revolution.  A perfect fit for me and my work.

I sold nearly everything I owned, keeping just enough for my two teens and I to live in our 600 sq. ft (56 m2) apartment, packed a moving truck and moved to Buffalo, NY.  Living off of the money from belongings I sold, sales of my self-published book on Amazon, my Atlanta students who continue music lessons with me through a webcam, and the help of family and friends, I have spent the last 9 months working on this dream.  I incorporated as Enlightened Audio, LLC where I do everything – website building, to logo design, teaching, and networking – on my own.  (Did I mention how great my friends and family have been in supporting me?)

It is certainly taking a village to keep the ground from crumbling beneath me.  It is a fragile balance that is easily levelled by any disruption.  The destruction of the ADA, medicaid, and disability supports by the American federal government have placed even more burden on those who try to help me.  When that letter from the Canadian government came telling me I would be denied permanent residency because of my financial status and lack of university education, I was heartbroken.  Here I was, standing on the boundary of two nations, and neither could I call home.

Maybe that sounds a bit overdramatic to some, but you must remember I wagered all that I have and all that I could borrow on this dream.  You see for me failure is not an option because I live in a nation where I have only two lives I can fall too once my friends and family are no longer able to help – one of poverty or one of wealth.  The bridge to get there has been destroyed by fear derived from a series of nonexistent threats that somehow equals the American loss on 9/11.

Why I am allowed to dream, and why I still love all humans

I recently watched a fantastic video in which several of the world’s top science minds came together at Arizona State University to discuss the current state of science in our society.  Each one stood up and gave a short speech and then they answered questions written on cards by the audience members.  In that presentation Lawrence Krauss (with further support from Neil DeGrasse Tyson) talked about sharing the molecules from the breath of Richard Feynman and how that inspired him as a scientist.  He was talking about the idea most beautifully explained in The Seven Mysteries of Life by Guy Murchie:

Did you know that the average breath you breathe contains about 10 sextillion atoms…This means of course that each time you inhale, you are drawing into yourself an average of about one atom from each of the breaths contained in the whole sky. Also every time you exhale you are sending back the same average of an atom to each of these breaths, as is every other living person, and this exchange, repeated twenty thousand times a day by some four billion people, has the surprising consequence that each breath you breathe must contain a quadrillion atoms breathed by the rest of mankind within the past few weeks and more than a million atoms breathed personally sometime by each and any person on Earth.”

This idea that we all share the same breathe, and the breaths of all who came before us is facinating.  The people working at Disney today are breathing in that which Disney breathed out.  What a profound idea that humans today are breathing in the exhales of Ghandi, or Einstien or Dr. King, long after they have ceased walking on the earth. 

Dr. Tyson continues to explain:

“…this is true because for every breath you take you inhale more molecules of air than there are breaths of air in the entire earth’s atmosphere.  And it is because of this fact that anytime someone has exhaled in the past, there are enough molecules to spread into everyone’s breath.”

This is deeply meaningful to me because it is the scientific equivalency of empathy.  We share space, even when separated by culture, geography, politics, and even time.  Floating in the air is argon, the third most abundant gas in the earth’s atmosphere, which never forms compounds with anything at room temperature because it is inert.  And because of argon being inert, it is breathed in and out by all things that live and have ever lived on the planet.  And what happens when we place argon in a tube and send an electric discharge through it?  We get a purple coloured light.

Let’s engage in a thought experiment for just one moment:

Look around you right now and imagine purple particles floating through the air like jellyfish in the sea.  Upon the backs of each of those purple light particles is the essence of other humans living throughout time, and as you breathe it in, you can feel their presence reach into to you and shake hands with your individual experience as a human.  Who is the first person that comes to your mind when you imagine breathing in the breath of another?  What emotions, if any, did it awaken?

This idea, this level of empathy that we are breathing in, this is how Autistic people experience the world everyday.  We love so deeply that even when you are not immediately near us, we can still feel you in every breath we take.

I didn’t choose Autism, and I have no idea why I am Autistic.  Through science and medicine we have labeled my human experience as Autism, and continue to develop ways to help people like me live free.  But it really is much more than the basics of life – food, clothing, shelter – that we should be allowed to ask for.  People with disabilities should be allowed to dream.  We should not be put down or discouraged for wanting to go to college, travel, have fun, or even journey to a new nation to grow.

Even as my path is laden with obstacles that others throw down in their careless wake, I can’t help but breath in.  There is something astounding about the human race and by some genetic lottery we do not fully understand, I am wired to feel it every moment of my existence through the simple act of breathing.  I am not sure if there is a word in English that can fully describe this depth of love I feel for others, so for now I will just call it love.  I do love you, even when you pull the belt away and leave me to find my way home.  And because of this, I must back away from touch, and place myself through deep compression, and fold inward when I am overwhelmed, so that I can protect myself from those who think their breath is purely their own.

So I dream.  In my fight for true independence I hope to breath out courage, empathy, determination, and pure will power that someday another Autistic person fighting will breath in and feel me hug them from the inside out, even if I never live to see my own dreams come true.  And until I no longer breathe, I refuse to give up.  I refuse to stop dreaming.  I will find home.

 

 

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