Jenna vs. Raymond Babbit

Every parent worries.  Not every parent worries about how they describe their daughters disorder to people she meets.  This is something I struggle with daily.  My daughter Jenna, who is pretty much my favorite person in the whole wide world, was diagnosed with an Autism Spectrum Disorder when she was almost 2.  The actual diagnosis is a PDD-NOS, Pervasive Developmental Disorder, Not otherwise specified.  Yeah, try saying that ten times fast.  Want another test?  Here is a clinical definition.  http://childstudycenter.yale.edu/autism/information/pddnos.aspx  I barely understand it, let alone know how to explain it.  So I look for examples in media.

Dustin Hoffman deserved the academy award he won for his 1988 role in RainMan.  He played Raymond Babbit, an adult male diagnosed with Autistic Savant Syndrome.  Before my daughter was born this was my only known introduction to someone with ASD.  What is fascinating and sad is that this is still the best, most readily understood example I can give to people of my generation to explain how my daughter interacts with the world.  

 Problem is, Hoffman isn't an Autistic adult.  He is a very talented actor.  His portrayal of self injurious behavior, his portrayal of repetitive flapping and his strict routine of TV shows are not all that make up the life of someone with autism.  There are problems with using him as an example, which are detailed in this blog: http://www.interactingwithautism.com/section/understanding/media/representations/details/38  So I have continued to look around for other people in media to help folks I meet understand my daughter a little more.

So here comes Temple Grandin.  She is an articulate, brilliant and high functioning example of an autistic person.  Lots of people lately have been talking to me about Temple when they meet my daughter.  I think Temple is great in the fact they she really opens peoples eyes to different minds, different ways of thinking.  I think everyone should watch her TED talk as it is very good at describing the High Functioning end of the Autism Spectrum.  I also think everyone who does watch it should watch her mannerisms when she speaks about low functioning autistes.  Also, Temple tends to lend an autistic diagnosis to people like Einstein and Tesla, Jefferson and Sagan.  This in no way helps anyone understand the Autism Disorder.  In my opinion, it simply confuses folks.

So I have continued to look around for more instances of Autism in media and finally have found one. It has what anyone questioning what the disorder is like for Children and families affected by it would need.  Where you might ask? On Netflix of course!  A Mother's Courage: Talking Back to Autism is the name. I recommend it if you are one of those people wondering what Autism is like for those affected by it.  Spoiler alert: if you emote, if you are free with your emotions, be prepared with tissues.  This is a tear-jerker but well worth it for the real life situations it shows.  What I especially like about it is that it focuses on the low functioning and middle of the spectrum instead of the High Functioning end.

My daughter isn't at either end of the spectrum.  She is in the middle, like most children and adults with Autism Spectrum disorder.  She has lots of abilities that are amazing, including an encyclopedic memory for songs and an ability to "script" scenes she has seen only a few times.  She has learned to mimic people in language and action.  She struggles however with over stimulation and her ability to communicate her own thoughts.  Also, she has issues with spacial awareness and runs into inanimate objects from time to time.  What I want to know is what her aspirations are.  When she is upset I want to know why and how I can help.  I think this movie can help and more.  It can help you understand what people affected by autism go thru.

 Jenna and Mom petting sheep.

 Jenna attempting to feed a peacock.

Jenna, as Minnie Mouse, ready for Halloween.

Get it in Writing!

Ever had a Politician come to your door and tell you how their party will make your life perfect if only you vote for them?  If you live in New Brunswick you better get it in writing.  This week the New Brunswick Liberal Government has come under fire about promises made to the Coalition of Seniors' and Nursing Home Residents by our new Premier, Brian Gallant.  One of his Cabinet minsters and Atcon 6'er, Donald Arsenault stood up in front of the media yesterday and with a straight face said, "Show me in the Liberal Platform during last year's election where we broke our promise to seniors."  Jacques Poitras was there and made this report: http://www.cbc.ca/news/senior-care-changes-not-a-broken-promise-liberals-argue-1.3044118

Poitras discusses in this piece that these same Liberals complained about this same practice being used by the then Premier David Alward, who made election promises about an emergency drug plan being ready in a one year time frame.  When he failed to deliver by 2013, the election ready Libs called him out on it and learned a valuable tactic it seems. 

John, you are likely thinking, how is this news?  Politicians lie all the time.  This is a known fact, why are we even discussing it here?  Great point by you, the reader, I must say.  You are 100% correct.  Our leaders seem to constantly be at odds with what they promise to get elected and what they feel they must do to remain in power.  Just means, in my opinion, that big change is needed in the way we elect and re-elect our leaders.  

Lets first discuss who our leading parties have been in this province. Liberals and Conservative parties are the only two who have formed governments.  Yup, that is correct.  We have never been led by anyone who isn't Blue or Red. Here is the full list of results since confederation: http://en.wikipedia.org/wiki/List_of_post-confederation_New_Brunswick_general_elections I would even take it one step farther and say that as much as these two parties "seem" to argue and differ, they are really very similar in their results.  This makes New Brunswick a One Party system, in my opinion.  We are all victims of this long line of incompetence that has used nepotism, cronyism and total and abject misuse of the public trust to put us in a truly dire fiscal situation which I don't think either party can see a way out of.  I have been attempting to struggle thru the Atlantic Institute of  Market Studies report on the debt history of our province.  To me, Section II is the most telling, especially our provincial credit rating.  http://www.aims.ca/site/media/aims/AIMS2014-NB%20Debt%20Study,%20Final%20%28prepared%20for%20publication%29%281%29.pdf 

I am no financial wizard.  Left to my own devices I spend all my money  and then wait for my next paycheck.  Sadly, I am more fiscally responsible than our governments have been for the last...Ever years.  They continue to borrow money they have no way of paying back.  Latest evidence, Liberals 900 million dollar infrastructure plan.  

Paving roads isn't the answer.  We need a way to generate revenue that we don't have to pay back.  And to that end we need to change the way we elect and allow governments to be re elected. 

I think everything should be on the table.  Maximum terms in office, mandatory voting, dropping the voting age to 16 or even changing the way we actually elect our MLA's.  Yes I am talking about the "dreaded" Proportional representation.  Not saying PropRep doesn't have issues, like you vote for a party and not a candidate, but hell look what we have been working with so far!  As it is we vote for two sides of the same coin.  With PropRep every party in the last New Brunswick election would have won at least one seat. 

As you can see this certainly would have changed things.  Liberals would likely have been held to promises not covered in writing because if they hadn't lived up to them the Green/NDP/PA alliance could have moved to support the PC's who then could form a government. Most importantly almost 52% of the votes cast in our latest election didn't actually elect anyone.  We have a large proportion or residents who are not represented in our Legislative Assembly. 

What we most need in our province is an engaged electorate.  Voter turnout is at an all time low, and I think it has a lot to do with some of the things I have covered over this essay.  We feel under represented.  We feel like our vote doesn't count, and to a certain point we are right.  And that is why we must all come out in the next election and vote and make sure our power is felt by those we choose to lead us.  Don't just vote for Blue or Red because your parents did.  Really engage in what the candidates are saying.  Read the parties platforms, yes even the People's Alliance platform.  It was the one that had the most real concrete numbers in the last election. Speak to the canvassers that come to your door.  If you don't get the answers from them call and speak to the candidate themselves.

Since we still use the old system of the ancient Greeks I will leave you with this quote from one of the most well known of them...

Free speech and Me.

So I have been struggling with myself lately.  I dislike hypocrisy, most especially when I sense it in myself.  I love Evelyn Beatrice Hall's quote, "I may disapprove of what you say but I will defend to the death your right to say it."  Yet there are words, phrases and idioms that when I hear them in public send me into a frothing rage.  Most especially these words center around mental health.  The one most on my radar, sadly the one I hear most often, is "retarded".  I have verbally berated multiple co workers about using this word in my presence or at all.  I have tried to explain to them the meaning of the word and how their improper use of it creates a hateful environment. 

It fails, they still say it.  Sometimes they catch themselves and apologize and I am left wondering if I am even right in the first place for bringing it up.  Is it my place to say something?  Should I just go to a superior and tell them?  Problem is, I have heard managers use the same language and laugh it off when I call them on it. I am certain this will be a problem I will fight all my life, mostly because I have a big mouth.

But now we come to the meat of my thesis. Am I a big fat hypocrite for stomping on these peoples right to say what they want?  Is there a line to draw?  Luckily I am not the only one facing this struggle.  France over the last months has revisited a decades old discussion after the "Charlie Hebdo" attacks and subsequent arrests for "Hate Speech". If you aren't up on things, check out this concise report http://www.npr.org/blogs/parallels/2015/02/10/384959376/the-french-debate-free-speech-versus-hate-speech Here in Canada our Free speech is covered first and foremost in the Charter of rights and freedoms in Section 2 which grants every Canadian: a)Freedom of conscience and religion, b)freedom of thought, belief, expression and opinion(including free press), c)freedom of peaceful assembly and d)freedom of association.  In New Brunswick this is bolstered by Human rights act.(linked here) http://www.gnb.ca/hrc-cdp/08-e.asp  

Of course, our laws are imperfect.  The language of them leaves much of the definition to the reader and the courts have gone both ways on questions about Free speech vs. Hate speech depending on the skills of the lawyers or the distastefulness of the content.  I mean, it is easy to say that someone denying the Holocaust is full of hate but what about someone who is questioning the duality in buses in poor old New Brunswick.  Does the tone of the speech mean anything in this debate?  If someone eloquently speaks about something hateful does it make it less hateful.  

I feel therefore I speak up I guess. "Free speech ends when it impedes others from having a peaceful and harmonious life" is the best definition I have found to encapsulate my thoughts on the subject.   I have become more passionate about the difference between hate and free speech in the last few years.  My daughters disability has heightened my tension when it comes to Ableism.  My hotheadedness when it comes to the issue scares me from time to time.  I fear for the person who first uses the word in the presence of me and my daughter.  My hope is that talking it out here in this forum will help me to better understand my own foibles and fallibility. 

 I am blessed to live in a country that has these rights. I am lucky to have lived on the fringes of this until lately.  It is much easier to look at a thing objectively when it doesn't directly affect you.  I am also lucky enough to have the ability to come home and forget the ignorance that can surround and abuse my senses from time to time.  I can just tune it all out and put on JJ and let all my cares slip away for a while.  Until someone poops or is hungry...