Tag Archives: Autistic Self Advocacy Network

Emma Presents At CoNGo With Ari Ne’eman

Posted on April 3, 2014 by | 22 comments

Tuesday night I received a message from Jess of the blog  – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN.  She asked me if I’d be able to step in if she still felt awful Wednesday morning.  I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.

Fade to the following day.

Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans.  So we wait to hear from him and I go about my day, trying as best I can to not think about it.

Three hours before the event I was able to check my email and see that I’d been given the green light.  I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea.  Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?”  An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.

We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn.  After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance.  Emma wrote, “I am aware of many things, and so are you.  Acceptance takes more dedication.”  I paused and then turned to Emma and said, “Do you have anything else you’d like to add?”  I held her stencil board and gave her a pencil.  Emma wrote, saying each letter as it was pointed to, “Yes.  Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”

Applause.

I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded.  And because we thought the whole thing was being recorded we didn’t bother taking any still shots either.  So other than a few photographs of Ari, we got nothing.  (Insert sad emoticon.)

Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t.  And if I’m right then it was worth every second.

PS  Jess, I’m hoping you’re feeling better.

Ari Ne'eman

Ari Ne’eman

 

 

 

22 Comments

Posted in Autism, Autism Acceptance, Autistic Role Models

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Autism Speaks and Signal Boosting

Posted on December 6, 2013 by | 57 comments

Signal boosting.  I love that phrase, it reminds me of a train yard.  That’s the image that comes to mind when I write those two words.  Signal boosting is when someone else shares a link or another’s writing either on a blog or on some other form of social media.  It’s the single most appreciated and important tool, those of us who are not Autistic, can use to help amplify the words of those we support.

The other day I signal boosted a letter to the sponsors of Autism Speaks from ASAN, Autistic Self Advocacy Network, – you can read that letter ‘here‘, which outlines why they are asking sponsors to reconsider lending their support to Autism Speaks.  I thought it was an excellent letter and as such, I decided to post it on my timeline on Facebook, with the heading, “For all who may be confused as to why so many are asking to boycott organizations that sponsor Autism Speaks, this is a wonderful explanation.”  And that’s when the proverbial shit hit the fan.  I’m not going to derail this post by going into the specifics of the comments I then received because I want to use this time to discuss Autism Speaks and why I object to what they are doing.  Again ASAN’s letter is an excellent point by point summation of exactly this, but I will attempt to give my personal views and why I have come to believe as I do.

Many defenders of Autism Speaks point out all the “good” they have done and continue to do.  They highlight insurance reform, their 100 day tool kit, autism awareness, spending millions of dollars on research, etc and yet, even if every single thing people who support Autism Speaks believe they are doing that is positive and helpful to Autistic people were true, (which I, for one, do not believe) it still does not take away from the fact that Autism Speaks does a great deal that hurts Autistic people and my child.  Autism Speaks uses its power and massive reach to shape how the public views autism and autistic people.  Suzanne Wright’s A Call for Action is a good example of this.  She begins with –

“This week is the week America will fully wake up to the autism crisis.

If three million children in America one day went missing – what would we as a country do?”

“Went missing” furthers the misconception that our autistic children were once here, and now are gone.  This idea is not helpful to anyone, least of all the parents who are new to a diagnosis and their young children.  Nothing positive, absolutely nothing positive comes from this kind of language, in fact this is exactly the sort of thinking that had my husband and I pursuing all kinds of “cures” not so long ago.  It was this thinking, that my daughter was buried beneath “autism” and that if I could just find a way to release her from its tortured grip, I would have done the noble thing, the right thing for my daughter.  As painful as it all was, as terrified as we were, she would thank us later… this was my thinking.

And yet, none of this helped me find ways to help her communicate.  Once we found a way to help her write and find her “voice” that was when the real miracles began to happen.  Helping my daughter communicate is what she is thanking us for now, not all those so-called “cures” we traumatized her with.  And please know, I mean that word, “traumatized” literally.  You can read more about some of that trauma ‘here‘, ‘here‘ and ‘here‘.

Suzanne Wright continues with increasingly alarmist, even threatening language.

“And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill?  How long before they break?

“How long before they break?”  Given that several parents have recently attempted and some have succeeded in killing their Autistic children, this language is particularly repugnant.  This is not a call for action, it is a call for fear.  It sets autism up as something to go to war against.  It dismisses the horror of these crimes against their own children as something that is practically inevitable.    It suggests that autism is the reason people would go to such extremes, but nowhere does Autism Speaks suggest it is the public perception, a perception they have had a massive hand in creating, that makes the lives of families and our Autistic children more difficult and yet I can tell you, it  does.  What they are doing, what they are saying is making my daughter’s life harder, not easier.

Those horrible ads (ransom notes) they posted all over New York City in 2007 and then took down because of the public outcry, the videos of parents who speak about their children, while their child is right there, but because their child does not speak it is assumed they cannot understand what others are saying… these are the things people believe, but that I have learned from my non-speaking Autistic friends and my daughter are simply not true.  My daughter understands everything that is said around her and she is not alone.  So many who do not speak have written about this, Ido, Naoki, Amy, Nick, Joey, Barb, Carly, Tito…  too many to ignore or to dismiss as an anomaly.

In one video Autism Speaks produced a few years ago, the mother describes how she thinks about driving off the George Washington Bridge with her Autistic daughter in the back seat, the same daughter who goes over, numerous times, as her mother talks to the camera, to hug her. This video continues to haunt me.  I no longer believe that child did not understand what her mother was saying.  My daughter understood everything we said in front of her, even though at the time she gave no indication she did.  I now know differently.  What must it have been like to be that child, to hear your mother saying to a camera crew that she thinks about killing herself and you and that the only reason she does not is because of her other non autistic child?  What would that be like to be that child?

These ad campaigns, these videos, these words, these “calls” for action DO have a huge impact on what people then think about autism, about Autistic people, about my daughter.   People make assumptions about my daughter’s intellectual capabilities all the time.  If you are curious to read some of what my daughter is writing these days, please click ‘here‘, ‘here‘ and ‘here‘.  None of what she is writing is thanks to anything Autism Speaks has done.  Autism Speaks absolutely impacts my daughter’s life, and they aren’t doing her any favors.  

In the end, it doesn’t matter what good Autism Speaks has accomplished, until they really understand why so many are so angry, as long as they continue to not include Autistic people in any position of power, they will continue to be attacked by the very people they claim to represent.  How long will it take?  What will need to happen before Autism Speaks stops talking and LISTENS to those it keeps insisting it represents.  So many Autistic people are furious. And so am I.  All their power, resources, money could be used to do so much good for Autistic people, they could make such a difference in the lives of so many…

I stand beside my Autistic brothers and sisters and I will signal boost their words at every opportunity I get until they are able to take the microphone away from Autism Speaks and people begin to hear their voices. Their voices are what the public needs to hear, NOT Autism Speaks.

Image of Melanie Yergeau with a sign of a red X over a puzzle piece.  To the left of the image are the words “people not puzzles”

images-1

 

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Posted in Autism, Autism "Awareness", Autism Speaks

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What’s Wrong With Autism Speaks?

Posted on November 13, 2013 by | 133 comments

When my daughter was diagnosed, we heard about Autism Speaks.  Their message supported everything else we were reading and hearing about autism, so I didn’t spend much time thinking about what they were saying or who they were involved with or even what they were doing with all the money they received.  In fact, we gave money to them during those early years.  When friends and family asked who they should donate money to, I encouraged them to give to Autism Speaks.

“Autism Speaks has a long and continued pattern of exclusion of Autistic voices from its work on autism. As an organization without a single Autistic person on its board of directors, Autism Speaks is the last group our nation’s leaders should be entrusting with the creation of a “national plan to address autism”. ~ ASAN (Autistic Self Advocacy Network)

“No reasonable person would dare suggest that an organization comprised entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people.” ~ Lydia Brown,  Autistic Hoya

I didn’t know.

“Only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services.” ~ ASAN, Before you Donate to Autism Speaks..

“Their slogan is “Autism Speaks to Washington.” It is neither “autism” nor Autistics who are doing the speaking, though.” ~ Paula Durbin-Westby

I didn’t know.

Autism Speaks has aligned themselves with the Judge Rotenberg Center, (read Autistic Hoya’s:  An Unholy Alliance) a center that uses electric shock as an “aversive”.   The Judge Rotenberg Center continues to accept “students” despite this video footage showing a young man being tortured.

For more about the Judge Rotenberg Center read Autistic Hoya’s post with dozens of links ‘here‘.

Bob and Suzanne Wright, whose grandson is Autistic created Autism Speaks in 2005.  Since then Autism Speaks has become one of the most influential autism organizations in the world.  What Autism Speaks does and says is often the first thing parents and people reading about autism hear.

“If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”  ~ Suzanne Wright’s  A Call to Action

The problem with this kind of rhetoric is that it is not a “call to action” it is a call to terror.   Terror that our children are “missing,” or have been “stolen,” or that if we are not careful any of our children will be “taken away” from us.  It furthers the misconception about autism and likens it to a predator, a kidnapper who will steal our children from our loving arms.

This is not awareness, this is propaganda.

Autism Speaks is responsible for a number of public service announcements which show screaming children and their exhausted parents who talk to the camera about how hard it is to have an autistic child while those same children are present.  I might have been one of those parents not so long ago.  In fact I allowed a camera crew to come to our home several years ago and film us.  The short film showed us sitting on our couch talking about our daughter as she sat beside me, (not realizing my daughter understood everything that I said, this is yet another of my many regrets) intercut with clips, I provided them with, of my daughter in full melt down.  I have since asked that our interview and all clips of my daughter be removed and I am grateful they respected my wishes.   The parents in the Autism Speaks videos are not so fortunate.

So many of us have supported organizations we thought were working toward positive change.  We believed they were helping us, our children and Autistic people.  We thought they had our children’s best interests in mind.  We believed they were doing good, only to find we were wrong.

I didn’t know.  Now I do.

Related Articles by Autistic people speaking out about Autism Speaks:

John Elder Robison – I Resign My Roles at Autism Speaks
Wikipedia – Talk: Autism Speaks/Controversy links
Golden Hearted Rose – So, What’s the Problem with Autism Speaks?
The Caffeinated Autistic – Why I am Against Autism Speaks…
Evil Autie – This is Autism Speaks
One Quarter Mama: Why I don’t like Autism Speaks
Initiative Action

133 Comments

Posted in Autism, human rights, Parenting

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What Is Autism?

Posted on April 24, 2013 by | 35 comments

Google that term and one is faced with a lengthy list of deficits.  The definitions of autism are cloaked in subjective language.  All the words used are in relation to non Autistic neurology: “severe impairment”, “life long developmental disorder”,  “social impairment” and one site went so far as to say, “A mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.”  None of these “definitions” have been helpful to me, personally, nor have I found them to be factually correct.  The most common definitions of autism out there have increased my fear and encouraged me to pursue therapies and treatments that have done far more harm than good.

People often ask, “so what is autism exactly?”  Over the years I’ve had a variety of responses, but like the definitions above, they always seemed inadequate, unhelpful and inaccurate.  So now, when I answer that question all I can come up with is this:  Autism is a type of neurology.   Short and sweet.  No judgment, no comparison, just six words.  It is a neurology.  It’s the best way I know of to describe what is often mired in negativity and judgment.

Comparing Autism to non autistic neurology has gotten me into a great deal of trouble over the years.  I have found it is important that I avoid doing that.  (I’m keeping this personal.  I speak only for myself and do not presume this is how others feel.)  For years I worried about my daughter’s ability to have friends.  If I believe the common definitions of autism, her ability to make friends is “impaired”.  Yet the impairment is less about her desire and attempts to have friends as it is about non Autistic neurology being out of sync with hers.  When Em was in Florida with her friend Henry, they had no problem hanging out together, laughing and enjoying each other’s company.  Just because they typed to each other and didn’t engage in endless verbal conversation, didn’t mean they didn’t have a blast together.

If I listened to and believed the definitions of autism, I might think my child couldn’t learn to read or write.  I would be wrong.   Not only has my daughter learned to read and write, she also has learned to type.  Because I no longer believe the common definitions regarding autism I do not limit what she should or shouldn’t do.  I do not limit her future with set ideas about her future capabilities.  I have found it helpful to disregard those organizations and people who insist that Autism is a dreadful “affliction” and compare rates of autism diagnosis with cancer.

So what is a longer definition of autism?

It’s a terrific question.  Finding an answer that is factual as well as helpful to me, has been difficult to find.  However there are a few who have done a terrific job defining autism and in doing so have also helped me, personally.  Autistic Self Advocacy Network (ASAN) defines Autism ‘here‘ and this post by Brenda, over at Mama Be Good, gives a great, comprehensive answer to the question and at the end includes her personal observations of her child and what it’s been like to parent an Autistic child.

So I ask you, how do you answer the question – What is Autism?

Em on her way back to Henry’s house – April 2013

Em pets the kitty

35 Comments

Posted in Autism, Parenting, prejudice

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The Influence of Others

Posted on April 10, 2013 by | 13 comments

On March 1st, 2012 my life changed.  I had no idea it was about to change.  I had no idea a single blog post would impact my life the way it did.  I didn’t know when I clicked on the link a commenter sent me on this blog, taking me to someone else’s blog, that I was in for the ride of a lifetime.

I had no idea.

On March 1st, 2012 I read Julia Bascom‘s post ~ The Obsessive Joy of Autism.  A post she’d written almost a year before, but I was only now reading.  Her post begins with this, “I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.”

I had no idea.

I have read that post half a dozen times since I discovered it.  And then I read her post just preceding entitled Grabbers.  “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”

Read that again – “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”

As a parent I want nothing more than for both my children to find their way toward meaningful lives, lived with purpose.  That they will then also find happiness I thought was a given.  Or so I always believed.  Does that mean they must be like me?  Do I believe that their ability to feel happiness is reduced, lessened, not relevant, inadequate, inferior, if it looks different from my idea of what constitutes meaning and happiness?  Can I let go of my preconceived ideas pertaining to happiness and what that means for anyone but myself?  Do I even know what happiness is for me, let alone another?

I had no idea.

These were the questions that began to gnaw at me as I read Julia’s blog, Just Stimming.  I urge anyone who is not familiar with her blog to read it.  Just Stimming is beautifully written as well as powerful, poignant, evocative and for me anyway, gut wrenching.

Again, from her post Grabbers –  (**Words highlighted in bold are mine, as in Julia’s post those words are italicized.)

“The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet.”

“…protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self.”

I had no idea and now I realize that claim begins to ring false, even to my ears.  How was it possible to not have considered this?  But no.

I had no idea.

“…Until you realize that the way you move is fundamentally wrong…”

The post ends with, “In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine.”

I am about four years old, we are living in the first house I ever lived in.  Our baby sitter, Mrs. Williams stands guard outside the bathroom where I have been told I will stay until I have had a “bowel movement.”  I am sure she will not let me leave, but I cannot go to the bathroom on command.  I feel anxiety course through my body, it is as though my entire being is encased in a net, I can breathe, but I am trapped.  I sit staring straight ahead, wondering how long before she begins to yell at me.  I am terrified of Mrs. Williams.  She smells of antiseptic soap and wears a nurses uniform that crackles when she moves and those awful white shoes you see in hospitals that sound like she’s stepped in chewing gum when she walks.  Her skin is pasty white and hangs from her body as though it were half a size too big.   But mostly it is her eyes, partially hidden by glasses lens that  do not conceal her anger and resentment.  Those eyes hurt to look at because I see so much that isn’t said.

Finally I stand, tip toe to the sink, grab my drinking cup and fill it with toilet water then pour the water back into the toilet and flush.  I place the cup carefully back on the edge of the sink and wait for Mrs. Williams to open the door, allowing me to escape.

“Your body is not your own, but it is mine...”

Julia’s blog was the beginning.  It showed me a different path and urged me to follow it.  I did.  Along the way I have found countless other blogs and have even been fortunate enough to meet many of the authors of those blogs.  Because of Julia’s blog I met my mentor and friend Ibby.  Because of Julia’s blog I read E.’s blog The Third Glance, which I intend to write about in the near future.  Because of Julia I have become a  (I hope) better parent.  Because of Julia I see the world differently.  Julia’s writing opened my eyes.  I wonder if any of us can ever really know how deeply our words can impact another.  I don’t know that anything I write here can convey what this woman has done for me or how enormously she has influenced me and because of her influence the difference she has made to my thinking and life and by extension, my daughter’s life.

Julia lit the way.

Julia created The Loud Hands Project.

Julia, with ASAN (Autistic Self Advocacy Network) put together the must read anthology, Loud Hands:  Autistic People Speaking.  

Julia is also the editor of the just released And Straight on Till Morning Essays on Autism Acceptance.  I just downloaded this book from Amazon for $2.99 and encourage everyone to do the same!

Julia’s writing gave me insight.  She confronted me with her truth.  She makes me think and rethink what I believe, what I think I know and she has made me question everything.  This post doesn’t do her justice.  How could it?

To Julia ~ Thank you  ❤

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Posted in Autism, Autistic Role Models, Blogs By Autistics

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The Audio Book is Finished!

Posted on March 29, 2013 by | 7 comments

Barb’s audio book is finished!  Ol’ Barb had me quoting Shakespeare, Stephen Hawking, Ralph Waldo Emerson and many others, as well as her own words…  It was an incredible process, with me wearing headphones, seated in front of a microphone in the sound room (or as I called it – the cave), while Barb and Lois (with Chad, the wonderfully upbeat and accommodating sound/tech guy sat in an adjoining room with a huge picture window so we could see each other) gave me direction, sometimes with hand signals, but more often with Barb typing her instructions, which Lois then read.  Chad alerted me to any technical issues that arose such as when a word sounded scratchy or slightly garbled or if I forgot a word or said a word incorrectly.  All in all it took more than 20 hours, probably more than 30 all told to record.

I am told the audio version of I might be you will be available for purchase and your listening pleasure by next week, but I will leave a link here when I have one.

In other news… I am doing a webinar on Parenting Toward Acceptance, Monday April 1st at 4:00 PM  for DIR Floortime, ICDL with Brenda Rothman, Mother and Blogger – Mama Be Good and Melody Latimer, Mother, Blogger – AS Parenting, Autistic Self-Advocate and Director of Community Engagement, Autistic Self Advocacy Network, ASAN.  I will leave a link Monday morning when I have one.  Until then have a lovely weekend everyone!

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Posted in Autism, Barb Rentenbach, i might be you

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Two Autistics Spoke. How Many Listened?

Posted on November 30, 2012 by | 68 comments

Yesterday C-Span covered “Lawmakers Look into Federal Response to Rising Rates of Autism.” For those of you interested in seeing all 3 hours and 48 minutes of it click ‘here‘. You can also read all eight transcripts of testimony by clicking on each link ‘here‘.

There were two Autistic people of the eight who spoke.  This, in and of itself was significant.  The last two speakers were Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network.

Michael, at one point said, “…research is geared towards the future, and not where the greatest need lies, which is in the present. Today, the amount of services we collectively provide is like one page out of War and Peace when compared with what’s needed.”

He went on to talk about language, “Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat” …”

“Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.”

Ari Ne’eman spoke last.  His was a riveting and powerful speech in which he spoke to the “epidemic” of Autism, “If we want to put the idea of an “epidemic” to the test, one of the most compelling lines of research we could pursue is an epidemiological study of the rate of autism among the adult population. A recent study of this nature conducted by the United Kingdom’s National Health Service found a comparable rate of autism in adults as in children in England.” 

Ari spoke of those who are non-speaking Autistics,  “If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.” 

He went on to point out, “Autism Speaks and the Simons Foundation – devote even less to these areas, with Autism Speaks investing approximately 1% of its research budget to studies on the quality of services to Autistic people (and less than one quarter of a percent to Autistic adults) and the Simons Foundation making no investments in either area. It cannot be doubted that when it comes to the needs of Autistic people today both the public and private research agendas are quite simply not responsive to the priorities of the Autistic community, itself. ”

And he talked about the importance of Medicaid, the importance of providing assistance to those just entering the work force and those who would like to, but do not have the supports in place to do so.

Ari ended with – “I want to thank the Committee members for allowing my community – the Autistic community – the opportunity to have a voice in these discussions. The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us. With your help, we can make that a reality.”

His final words were, “I look forward to hearing your questions.”

I was eager to hear the questions that would undoubtedly be asked of both him and Michael after such terrific speeches, particularly as they are both Autistic, the very people this entire hearing were meant to care about and want to help.   So I waited.  And then I waited some more.

Finally there were a few, but the majority of people who spoke continued to repeat those words that Ari and Michael had cited, as though they’d never been said.  It seems we care about Autism and our Autistic children specifically, but when it comes to “Autistic people” in general, we don’t care so much.

And so I’d like to know, Why is that?

How is it that we can say we “care” about Autism and those who are Autistic yet not fund programs that will make their lives better?  How is it we can use words usually reserved for war and ignore that these words make those who are on the spectrum feel badly about their very existence?  Is this how we want our children to feel?  Do we really want our own children to feel their existence is called into question?  Let’s just say, for the sake of argument, that our Autistic children, whether they speak or not, whether they are in a special education classroom or are mainstreamed, let’s just say, ALL of them can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate how that feels.   Can we at least imagine what that would be like if this were done to us?  Can we try, just for a moment to have the “empathy” needed to imagine?   Are we compassionate enough to pause, even if for a moment and consider the implications of what we are saying and doing?  Even if we cannot or do not want to think about all the Autistic adults whom we do not know, can we just think about our own child?  Our children will be adults one day, do we really want them to feel as so many Autistic adults do?  Our children have feelings.

Ari is Autistic.

Michael is Autistic.

Both spoke.

How many listened?

My Autistic daughter, Emma – 2002

Emma - 2002

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Posted in Autism, neurodiversity, Parenting

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GO VOTE!

Posted on November 6, 2012 by | 9 comments

*A version of the following was sent to me a few weeks ago.  This is about women fighting for the right to vote, but it could be the battle engaged by any group in the minority, including those who are Autistic fighting for the right to have a say in the policies that ultimately harm or help them.  It is the same story, told over and over again.  This post was inspired by Lydia Brown’s recent post, Protesting Autism Speaks on her blog Autistic Hoya where she recounts the response she received as she and others offered ASAN (Autistic Self Advocacy Network) flyers to Autism Speaks supporters and asked, “Would you like to hear from Autistic people?” only to be told “No” over and over again.

Less than 100 years ago women did not have the right to vote.

The 19th Amendment, ratified August 18, 1920, granted women the right to vote. Prior to that women marched and picketed as a way to bring attention to their cause.  These tactics succeeded in raising awareness, but were often met with massive resistance and brutality.

On November 15, 1917, known as the “Night of Terror” when the prison warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they picketed the White House for the right to vote.


By the end of the night, many were barely alive. Forty prison guards wielding clubs and with their warden’s blessing went on a rampage against the 33 women convicted of “obstructing sidewalk traffic”.
One of those women was Lucy Burns. They beat her, chained her hands to the cell bars above her head and left her hanging all night.
Dora Lewis

They threw Dora Lewis into a dark cell, smashed her head against an iron bed, knocking her out. Her cellmate, Alice Cosu, thinking Lewis dead, suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking and kicking the women.

Alice Paul

Alice Paul began a hunger strike so they tied her to a chair, forced a tube down her throat and poured liquid into her until she threw up. She was tortured for weeks until word was smuggled out to the press.

Edith Ainge

Voting is our right. It isn’t always convenient, we have to take off early from work, find childcare to watch our kids, stand in long lines, but it is our right. A right our grandmothers and great grandmothers did not have.  It’s easy to take for granted that which we have grown up believing is a given.  But it wasn’t always our right, and while it is doubtful it could ever be taken away, there are many in this world who still do not have that right even today.

Helena Hill Weed – Serving a 3-day sentence for carrying a banner saying, “Governments derive their just powers from the consent of the governed.”

Lest we forget, rights we think are a given, can be taken away.

Go out and vote!

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