Tag Archives: UN

The YouTube Video of Ari Ne’eman and Emma Zurcher-Long

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).   

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on.  At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic.  As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By  the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?”  (I know, talk about asking the obvious…)

I am painfully aware that  by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media.  If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change.  So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made.  And what about those who do speak, are their feelings not important?  These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear.  Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.”  I suggested.  Once outside I asked Emma if she wanted to discuss the video Ari was referring to.  Emma wrote, “The video has a mom who is lost and cannot rationalize hope.”  Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.”  Read that again –

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced.  Watch Emma writing her final sentence regarding autism and acceptance, which says it all…

Emma Presents At CoNGo With Ari Ne’eman

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.”


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




Emma Discusses – Awareness

“Awareness is deciding something is worth your time and attention.  It is not necessarily good.  Real awareness needs to be balanced.” ~ Emma Zurcher-Long

I asked Emma whether she wanted to write something about autism awareness since April 2nd is World Autism Awareness Day, designated by the UN in 1989.  Emma wrote,

“Autism awareness really does me very little.  It is not honoring or making my life easier.  So many believe I am unintelligent even though I write well.  Until they see me writing, it is not what they assume.  What good is awareness if it doesn’t tell people the truth?”

Ariane:  “What is the truth?”

“The truth is, so much of what we perceive compared to another, isn’t known.  People see me, but don’t understand what they are seeing.  I want people to know what it is like to have smart thoughts, but not be able to prove it.

“No one wants to be treated with impatience.  I am happy when people are aware of how bright I am.  Maybe they have a special light bulb for that.  Shine some awareness on those of us who can’t talk the way we think.”

Texas ~ September, 2013

Texas ~ September, 2013

Autism Acceptance

Paula Durbin-Westby is an adult autist, an advocate, a writer, blogger, and mother. She writes extensively about autism on her blog – Autism Acceptance Day.  I had planned to do a series throughout the month of April of Autistic writers discussing autism, “awareness” and acceptance, which I planned to submit to the Huffington Post.  However, HuffPo does not take “guest bloggers” and as I hadn’t gotten permission beforehand, this piece from Paula was never printed.   I am printing it here, instead:

This article introduces a new celebration for the month of April: Autism Acceptance Day.  First, the background.  Autism Awareness month has been around for quite awhile.  Unfortunately, much of the deluge of “awareness” has been demeaning and even discriminatory.  Many Autistics have written pieces on the theme “April is the cruelest month.”  Parents talk about wanting to turn off the TV during April so their Autistic children will not have to see the alarmist statistics and “medical mystery” reporting.  Autistic friends, weaving their way through a barrage of autism “warning” signs placed prominently on campus, talk about how they can’t wait for April to be over.

In 2008, the UN declared April 2 World Autism Awareness Day.  A year later, in September 2009, during an autism conference the UN showed a video called “I Am Autism,” which portrays autism as a demonic persona that threatens harm to parents and families. In one section, voices chime “We are the United Nations,” showing people from many nations who will stand up to “autism.”  It was outrageous.  The United Nations, by showing this film, violated its own principles in the UN Convention on the Rights of Persons with Disabilities.   The UN wrote in Article 8, and I quote, “As a change of perceptions is essential to improve the situation of persons with disabilities, ratifying countries are to combat stereotypes and prejudices and promote awareness of the capabilities of persons with disabilities.

Against this backdrop, I organized the first Autism Acceptance Day in 2011.  Autism Acceptance Day was to be everything that Autism Awareness Month was not. Rather than “awareness” that insults and even damages the life chances of Autistic people, I promoted complete acceptance, not just mere tolerance. As Autistic activist Nick Walker puts it, “If it doesn’t involve acceptance of autism, and acceptance of autistic people as autistic people, you don’t get to call it “autism acceptance.” I was tired of my friends being hurt, and dismayed at the media and parent- and researcher-led autism organizations portraying autism and Autistic people in what my nine-year old calls a “despicatizing” light.

Autism acceptance means an active acceptance of neurodiversity. Neurodiversity sometimes gets a bad rap, but it’s really fairly simple: neurodiversity encompasses all neurologies, from “typical” people to those who have a variety of neurologically-based differences and disabilities. We support all people with disabilities, even though our emphasis is on neurology. We assert the worth and dignity of every person, no matter what their disability or level of disability, including people with significant disabilities. Our aim is not to gloss over the very real difficulties that people with neurologically-based disabilities face. Our focus is on access to services, supports, education and employment opportunities. We support the development of communication systems, a high priority for Autistics, some of whom do not speak, and many of whom do not have reliable access to language-based communication at times.

The first year, Autism Acceptance Day was primarily an online, Facebook event. I started a blog so that people who were not on Facebook could read about Autism Acceptance Day and participate. Over 1000 people signed up for the Facebook event. This year, as more people made plans and expanded on the idea, I wrote – “It’s time to take back April!” ASAN did a series on its blog and there were other events and activities.

Like any other community, the Autistic community and our supporters have developed expressions of community involvement.  Some events are celebratory; some are not.  On March 30, people attended candlelight vigils to mourn and remember people with disabilities who have been murdered by family members or caregivers. The vigil effort was organized by Zoe Gross. An online vigil was implemented as well.  As with other minority communities, a sense of identity, pride, and accomplishment, as well as a time to pause and reflect, is a way to build upon our strengths, learn to work together to promote our own interests and concerns, and ultimately to foster a greater societal acceptance of people with disabilities including autism.  Sadly, the day after the vigil, Daniel Corby, age 4, was murdered.  We still have much to do toward acceptance of Autistic people.