Sunday, September 14, 2014

Fall is the season for Fairs

One of the things I love about fall is the fairs and carnivals.  The biggest of them all – where I live at least – is the Big E in West Springfield, Massachusetts.  It’s two weeks and three weekends of action, and I take thousands of photos there every year.

One of my favorite places is the circus tent, where I see things like this:

Professional cat catchers stand ready to rescue a leaping feline

Playing with fire under the circus tent

Motorcycles and acrobatics, fifty feet off the floor. With no safety net.

They've always got a full house, so get there early

You will never guess what came out of that little box

I love the brilliant colors, the lights, and the patterns.  And I admire the skill of the performers.

My next favorite place is the concert stage.  I've only been to two shows so far this year, but both were great.  Does anyone know who these performers are?

And we can't forget the horses and all the other animals  . . .

What are you favorite images of the fair?

The photos above were shot with Nikon Df and D3s cameras, and 28-70 and 70-200 2.8 lenses.  An SB910 flash was used for some shots.  ISO ranges from 400 to 3200.  All images (c) 2014 John Elder Robison

Friday, August 29, 2014

A Briefcase Full of Dreams

Where were you in ’78? I was 21 years old, trying to make a place for myself in a world of adults.  My clients were musicians, but the people who paid me were businessmen, and I had to make a good impression.

That meant button up shirts, a nice pen in my pocket, and the ultimate professional accessory . . .  a real leather briefcase.  Fifty dollars was a lot of money for me then, but I must have chosen well ‘cause it’s still in good shape today . . .

Outside – quiet and conservative.

Inside – rock and roll passes and sound engineer business cards told the rest of the story.  No corporate drone here! 
  • A card from M Kluczynski, president of Britro, Pink Floyd’s sound company;
  • Backstage passes from Phoebe Snow, Duke Ellington, Talking Heads, The New Riders of the Purple Sage, Roxy Music;
  • A faded pass for the James Montgomery Band says Manager;
  • A pass for the Return of KISS at Madison Square Garden says Crew;
  • Stickers for Sola power supplies and MXR special effects.

Underneath, I had a receipt book so I could get money, diagrams of amplifiers I might have to fix, schematics for things I'd just thought up, and bills I struggled to pay.  It was a hand to mouth living in those days, but it was a fun time, too.  It was a time of sadness, excitement, discovery, and adventure.  I probably should have died a dozen times over, but I'm still here.  There aren't any pictures from those days because there wasn't any time for photos. I had to work! And work I did.   

Those shows were the stuff of dreams for a sixteen year old failure and a high school dropout.  Yet they all came true, five short years later. But like all dreams, they changed and evolved.  

Ten years later, I’d left music behind and I was an electronics executive

Ten years later, I’d left electronics behind and I was restoring and fixing cars

Ten years later I was photographing performers and thinking about writing a book

I could never have predicted any of that, when I bought that briefcase.  I remembered it all when my mother and my wife Maripat found it stored away, and brought it back to life for my birthday.  It just goes to show . . . . you really never know . . .

Tuesday, August 12, 2014

Robin Williams, and thoughts on suicide

Midnight, in the graveyard at Bruton Parish Church in Virginia

This morning I awoke to the news that comedian Robin Williams had killed himself, at 63.  He’s the latest of a long line of creative people to take his own life.   Every time a performer or artist kills himself I ask if this is an unavoidable hazard of the arts, or if something might be done about it.

News sources say Williams was “wrestling with depression” when he did himself in.  I myself have wrestled with depression, as have many people around me.  The question of why some of us choose suicide, successfully and without warning, is one that has yet to be answered.

Most of the people who commit suicide don’t announce their intentions.  Some research suggests they may not even have such intentions until the fateful moment.  I don’t have any wisdom to offer in that regard; it’s perhaps one of those things where the only ones who know the answers are dead.

I know I’m a part of two communities at risk.  The suicide rate among people with autism is shockingly high – near 2%

Some researchers speculate that autism isolates us, and isolation is painful.  Autistic people are often subject to bullying, marginalization, and other painful things.  I can understand how some of us are overwhelmed by that mix.

It's easy to start feeling we have nothing to look forward too except more psychic pain, and if we feel that way suicide may seem like a good choice.  I do not feel that way right now, but I have been there before, and I can't think of anything that magically "snapped me out of it.  From my experience, I can see how this state of mind would become unsustainable after a certain period of time.  Yet it's a quiet despair, and I don't think most people noticed when I was feeling that way.

That's the danger of those kind of feelings - no one knows. We don't show much outward sign, and if we don't get better on our own . . .

When I was alone as a young adult I used to feel terrible pain and despair, almost every night.  I'm all too aware that those feelings can return any time, should something bad enough happen.  We're a vulnerable population in that respect.  Some people say sadness strengthens and shapes us; others say it kills us.  I guess it's situational.

Another study – this one dating from 1999 – found a similarly high rate among writers, sculptors, actors and other artists:

Are artists susceptible because we are sensitive to perceived criticism?  Are artists isolated by difference?  I don’t know.  I know many writers who are absolutely devastated by attacks on their work.  I’ve felt that myself, with some of the one-star reviews on Amazon.  Does that lead to suicide?  I don’t think anyone knows.

I know many writers and artists who seem to experience greater highs and lows than the average person.  Maybe the highs bring us our gifts, but the lows can take us out.  That's another unanswered question.

As a person who is often out there before the public, I know well the pressure to put on a happy face even when I'm crying inside.  That puts a tremendous strain on the psyche, and it sometimes hammers you hard when you're alone after the show.  When people look to you with certain expectations - whether you're a comedian like Robin, or a singer, or a speaker on disability - you are always feeling you must live up to an imaginary standard and it can be very hard.  At the same time, you offer your inner thoughts - even if couched as comedy - and it stings when they're rejected.  Is too much of that the straw that breaks the camel's back?  Those of us who are living may never learn that particular answer.

I don't feel sad today - I am not writing from a place of despair - but I am well familiar with how that feels.  It's heartbreaking to read stories like this one, and realize it could be any of us, tomorrow, with a few little disasters to put us over the edge.

The suicide rate for people with severe psychiatric disorders – mania, psychosis, schizophrenia, major depression – is even higher – near 10%.  The 1999 study draws that comparison.   I think of my parents, locked in the wards of the Northampton State Hospital 40 years ago. I remember seeing them among the other inmates and I understand.  They were a desert of lost people.

Is there anything we might do to reduce rates of suicide in these groups?  I wasn't personally acquainted with Robin Williams, but the news of his death reminds me how sad it is that we can be so silently alone and in pain - even when we are loved by millions as he was.  And our sadness can be such a crushing burden that we take our own lives rather than carry on, even as observers of our lives imagine things to be so good.  And it can happy to any of us - rich or poor, famous or unknown.

I’d be interested in your thoughts.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On.  He's co-founder of the TCS Auto Program high school in Springfield, MA and Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, VA.

Tuesday, July 8, 2014

#Autism - whose table is it? Who gets a seat?

When the autism awareness movement began, it was led by parents advocating for their children.  Parents founded most of the original advocacy organizations, and parents fought for services.  Many times they worked tirelessly on behalf of children  who were ill equipped to speak for themselves. 

Many things have changed in the past decade.  We now recognize a much broader spectrum.  Many of the kids who were the original focus of parental advocacy are now autistic adults.  Technology and emergent therapies are helping them and others at all points on the spectrum communicate effectively and broadly. 

Between growing up, being recognized in adulthood, and developing more ability to communicate effectively, members of our autism community have become far more able to speak for ourselves.  Given that reality, I believe it’s time for a shift of balance in some of the organizations and groups involved with autism.

Autistic advocates are already shifting the discussion from awareness to acceptance and support, but more is needed.  

Specifically, it’s time to recognize the primacy of autistic people in the formulation of policy relating to research, education, treatment, and services for our community and our people.   We are able to express our own wishes and opinions, and we are doing so more firmly every day.  We no longer need parents or professional to speak on our behalf as a community.  Some individuals will still want such assistance and that's fine for those individuals but – just as in other communities of adults – the majority of us can and should communicate for ourselves.

Speaking for ourselves is an essential step to independent adulthood.  It's not a dismissal of parents; it's the same thing every child does as part of growing up.  Some autistics do this at the "typical" time; others are a few years later.  Some don't become independent speakers until well into adulthood and a few never speak for themselves.

Wherever a particular person falls on the independent speaking spectrum, the previous paragraph does not imply parents and professionals don’t have valuable input to offer – they do.  Rather, it’s a recognition that a happy and free adult people must determine their own destinies whenever possible. with advice - not oversight - from others.

Parents, family members, guardians, and professionals have a place at the table, but let’s recognize that it’s the autistic people’s table, and parents, friends and helpers are the guests, counselors, and advisors, not the leaders.

Anyone who reads the news knows how the recognized prevalence of autism has risen steadily this past decade.  At this point, our numbers make us a significant subgroup of the population.  In America – for example - we outnumber both Jewish and Native Americans by a substantial amount.  It’s reasonable for us to expect the same recognition, rights, and acceptance as other population groups.

It’s also time to recognize that we are also more than a group of “people with a disease.”  The evidence shows we have always been here, and we always will.  That does not discount the idea that some autism stems from environmental toxins or other preventable causes.  Rather, it reflects the emergent realization that there are multiple autism(s) and one form seems to be a stable part of humanity; unrelated to disease or injury.  As much as we may seek to prevent neurological injuries and correct those that occur, we must also respect those of us who are simply “born different.”  And of course there is the issue of perspective – to me, it may be you that’s different!  We may each see that in each other and we both deserve respect and acceptance.

That means facing the fact we have our challenges, but we have our gifts too. The balance varies from person to person, and for each of us, it may change over our lifespan. Like any community all our facets should be recognized and respected.  We say autism is a way of being . . . who should young autistic people learn this from if not autistic adults?  That’s why it’s so important for us to build community and dialogue.

Most of us are aware of the breadth of our community with respect to how autism affects us, and what mix we may have of gift and disability traits.  There are differences in our expectations too, with some of us wanting to be left alone, some wanting acceptance, some wanting assistance and some calling for a cure.

The opposite ends of that spectrum are to some extent mutually exclusive on a population level but we can hopefully accept that range of difference individually.  It all comes down to this:  Whatever we believe, it’s our community, not our parents or our teachers or anyone else’s.  It’s up to the autistic adults to take charge and shape our destiny going forward.

I believe it’s our right, responsibility and indeed obligation to speak up for ourselves.  If we believe our community contains members who cannot speak for themselves we have a duty to do our best to speak fairly for them too. 

We have a broad range of wants and needs.  Who better to articulate those needs than those of us who are affected?  We express outrage when outsiders broadly characterize autistic people as “suffering from autism,” but the fact is, every human suffers from something sometime.  When we suffer, we should speak up.  But we should also speak up for our joys, our hopes, and our dreams, because speaking up is the first step in making those things real, just as it’s a first step in making suffering go away.

By saying this I am not presuming to speak for any specific individual, nor am I suggesting autistic adults should bull their way in to try and speak for individuals who are unable to speak for themselves.  Any community will contain members whose guardians speak on their behalf, but they are in the minority.  In the autism community, that shift will represent a reversal.

Autism – by definition - presents us with communication challenges but most of us can and do communicate by the time we reach adulthood.  It’s time for us to use that great human gift, for all our sakes.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s Neurodiversity Scholar in Residence at the College of William & Mary.  The opinions expressed here are his own.