Autism Speaks Silenced on Twitter – 10 years in the making

When Autism Speaks reached out through their various social networks with their shiny new tag #AutismSpeaks10 they, like others who think they are unreachable somehow didn’t foresee what was to come.

(Edited to add: They changed tags it seems, so please now see < #AutismChampions >

I guess if they had any Autistic people working for them they would have had a better idea how things might go. We have wonderful big picture thinking 🙂

We can use that big picture thinking and see throughout history what happens when people are continuously silenced and oppressed. We can see what happens when they don’t even feel part of the human race, but know they are and want to be.

We rise up.

So Autism Speaks is celebrating their 10th year on Wednesday February 25th and they asked for anyone who’d like to share how Autism Speaks has helped them to use the hashtag #AutismSpeaks10.

In that hashtag a spark was waiting to grow like a wildfire.

We’re rising up.

So not only have we been sharing, but we’ve been taking the whole damn tag over and we added some tags of our own, you know, to fine point the issue 🙂

> #ActuallyAutistic (opens live stream on twitter in new page)
> #IAmTheEndUser (opens live stream on twitter in new page)

So in I went:

I was polite and thanked them next:

Things went along okay but then I wasn’t careful enough with my repeating of words. It’s important to stay open to learning and be open to correction. Gentle correction is great, if it can happen that way. It mostly doesn’t, I’m guessing.

Since I was live and active on this I was right there when Steve Silberman tweeted this and then retweeted my response.

Lifted up from the various exchanges I was feeling really victorious.

But what goes up must come down and there was some bullying. With the amount of noise I was making it was in the back of my mind as something that could happen, Even still, I did struggle for a while. But not that long, I’ve got such great support online now and this gem from a friend.

And back on track I went, first with some love…

then back to making hard points, which a lot agreed with:

and also decided to make a phone call, up the signal:

After the call I saw a tweet that reminded me of one of the many reasons Autistic persons and our families/friends/supports are so upset with Autism Speaks. They have a horrible history of dehumanising and exploiting us in their documentaries. The ableist language and the fear mongering is too much sometimes. I found a way to work with that:

Almost immediately ideas for a graphic started to come to mind.

Pesky creative Autism 😉

I’m really grateful for this amazing and yes pesky Autistic brain though. Would not trade it for another, would not want it cured or changed it any way.

Feel free to use and share this graphic. Would love a link back, or a comment letting me know where it may travel, but if not the link is on it so that’s good too.

What a wonderfully empowering experience this has been. Can’t wait to see where all the hard work takes us!! Well done everyone!

Great write-up on BuzzFeed:
[ Autistic People Spark Twitter Fight Against Autism Speaks ]

Sounding the alarm on #AutismSpeaks10

Autism, Vaccines and Opening Closed Minds, Including my Own

I was 18 in 1988 when I got my first and last flu vaccination.

But it was way back in 1938 when Jonas Salk and Thomas Francis developed the first vaccine against flu viruses. It was used to protect the U.S. military forces against the flu during World War II. Dr. Salk later used his experience with influenza vaccine to develop an effective polio vaccine in 1952. Extraordinary and life changing for so many people.

Emergency polio ward at Haynes Memorial Hospital in Boston, Ma. Aug. 16, 1955

Emergency polio ward at Haynes Memorial Hospital in Boston, Ma. Aug. 16, 1955

The sickness that hit me just days after the shot was unlike any I had ever experienced. When my fever wouldn’t break after 3 days and hit 104ºC my Grandparents called the Family Doctor and he came to the house to see me. There was talk that I may have had a convulsion (seizure) as a result but no one was totally sure. Incoherent, eyes rolling around in my head, weak, he decided that after trying a few more things I would be hospitalized if the fever didn’t break.

But it broke and so did a piece of me for a long time.

I became far more afraid of what might have been in that needle than I was of the serious flu that I had just experienced. Fear had taken a hold and once fear gets a hold of you it is nearly impossible to shake.

I get it – I really, really do. I get it more than most.  I’ve been vocally anti-vaccination in the past. As you read on you’ll see why. But you’ll also see that life has handed me some contrasting and difficult experiences to force me to look deeper into all of this.

In the early 1990‘s there was a mass education and vaccination program for Hepatitis here in Nova Scotia. I went back and forth about it in my head and heart for a long time but in the end I decided to do it. No bad results and my trust had buoyed back up from being so low about my experiences and misunderstandings about the flu shot.

That trust took me and my first puppy to the vet to get all of her shots a few years later. Up until she was 6 years old I did as I was instructed by my Vet. Then she got very sick. She developed vaccinosis from her distemper vaccine. She spent the 2nd half of her life with a lot of issues.

And just like that, I was done. The trust regained from the Hepatitis vaccine gone, and it was replaced with deep anger and fear. I don’t have children but I had handed my heart over to my dog in a way that I hadn’t with any other human and I was angry.

So a toxic stew of anger and fear set me on a journey to validate my anger and fear.

I came online and found others who felt like I did. Others who felt betrayed somehow by science, even though we haven’t been at all. Others who questioned the ingredients, the frequency, the science of it like we had all gotten microbiology degrees to give us the guts to do that! We had, we shouted! We spent countless hours reading, talking to others. We read everything we could find.

Except we didn’t, did we?

We succumbed to many fears. One huge, not seeming-to-go-away-yet fear was grown in our hearts by a woman who can’t decide if her son is even Autistic or not. She was given a platform by a woman who should have known better. Neither will get a link here, nor their names mentioned.

Let’s come forward to today for a moment – A radio interview I listened to that years ago would have made me angry and I would have shut it off highlights this lie that we surrounded ourselves in. The one that lets enough science in to shut down the science of another. The one that dismisses scientific fact over anecdotal evidence. You know why? Because it’s head versus heart. Logic versus emotion.

The link to the interview which really is a must listen to, will be at the end of the entry.

Armed with so many emotional facts I started to feel confident in my arguments. They started to sound real to me. The “buts” and “what ifs” which are good tools for critical thinking, had somehow suspended my ability to do so!

Fear.

I rejected allopathic (conventional western) medicine for a decade after that. I had no family physician. Anything that a MD wanted people to take was suspicious to me.

Any time I waded into good science based websites the confusing terminology made me frustrated and I’d leave before being properly educated. Or what I was reading was challenging my stubborn, fear based beliefs and I’d close the page and find comfort in something that supported them. Once emotion becomes part of the equation for our health, we start feeling like Doctors are cold and don’t really care. Science won’t hold your hand but people need and want that sometimes.

Science needs to step its game up that way if we are going to fix this rift. It has to allow for the feelings and the gut instincts of those it serves.

In late 2011/ early 2012 these worlds all collided for me and have led me to here. I had a seizure in 2011 but my deep mistrust coupled with severely needed mental health care kept me from getting help and those in my life didn’t get it for me either. So I had another in 2012 and back into the world of Western medicine I went with a bang. Many fears had to be faced then.

What resulted was being diagnosed with Epilepsy and having an incorrect diagnoses of Manic Depression (Bipolar) in the 1980‘s corrected to Autism.

I was thrust into a world I was not prepared enough for but one that was and is schooling me. Don’t be afraid to be schooled, please. Especially when it involves the health of those you love, and the greater population too. We can’t afford to micro focus these issues. Our actions do effect those around us and that fans out in ways we can’t control.

The greater population. Humanity. We are more than what is in front of us. The internet gives us an idea of that but most still have only the small view of their immediate world. Many parts of this planet still live in abject poverty, with diseases that we have no clue about. Billions of us live in parts of this world that are underdeveloped according to the standards we know here in Canada. A friend talked to me about how women will carry their children hundreds of miles in conditions we can’t fathom, all for the chance to get a vaccine that we have rejected to the point of it becoming a problem that was once under control. They face being attacked by both animals and men alike. They do it for a chance to give their children a life that we have, well had – it’s eroding.

A vaccine like MMR (Measles Mumps Rubella) that people with actual working brains in their heads are so afraid of their children turning into someone like me, an Autistic person, that they would rather them face the 2 in a 1000 odds of dying from measles (link)

Some facts from above link:

As many as one out of every 20 children with measles gets pneumonia, the most common cause of death from measles in young children.

  • About one child out of every 1,000 who get measles will develop encephalitis (swelling of the brain) that can lead to convulsions and can leave the child deaf or mentally retarded.

  • For every 1,000 children who get measles, one or two will die from it.

    Then there’s this:

    Subacute sclerosing panencephalitis (SSPE) is a very rare, but fatal disease of the central nervous system that results from a measles virus infection acquired earlier in life. SSPE generally develops 7 to 10 years after a person has measles, even though the person seems to have fully recovered from the illness.”

If you are going to turn anecdotal evidence into fact, then you also have to take the facts into consideration. Healthy people making illogical choices for themselves and their children affects the most vulnerable of society. It effects immune compromised persons and the single biggest scapegoats of this anti-vaxx movement are the Autism community.

I finally had to face my ignorance head on when I found myself being described in ways that just were not true. Autism education and acceptance lead me to a complete understanding that being Autistic has nothing to do with vaccines. When I stopped being afraid to look at the science, to not let the big words deter me it all started to make sense. When I saw that the findings were just not true and that Dr. Andrew Wakefield’s licence had been taken, I knew I had let fear control me for too long.

No matter what though we can’t seem to shake the lie that vaccines cause Autism. Even though we have existed long before vaccines. Even though I’m telling you so. Even as my peers, myself, and those who love and support us express how much this us hurting us? Countless others have had no vaccines at all and were still revealed to be Autistic.

Still not enough?  How about No Thimerosal was ever in the MMR (Measles Mumps Rubella) vaccine in Canada. Bet you didn’t realise that.  Don’t parrot others fears. Fact check.

So now I’m trying to help undo the damage I may have caused in the past to myself and to my larger Autism Community. I owe you the biggest apology of all. I’m sorry. Now I lend my space here online, my voice where I can, my time, to correcting this.

It is not okay to use my neurology to scare people any more. If you are afraid it’s okay to say so but it’s not okay continuing to hurt others when you are shown facts and reason. Those afraid of their children somehow becoming autistic due to things they don’t understand are themselves acting in ways that they fear about Autism, ironically. The lie that we are unreachable, that we don’t care about society, that we have no empathy – anti-vaxxers are the ones displaying these traits in their actions while hiding behind the neurology of others.

It’s ugly, okay? We need you to stop now because it is hurting us and creating fear where there should be acceptance and understanding. Vaccines do not cause Autism. Vaccines overwhelmingly protect us and those they can’t protect, the strong in society protect by being responsible.

Whatever choices you feel are necessary to make regarding vaccinating your children, please make them without the fear of Autism. Let that big fear go and you’ll feel a lot better, and so will we.

2 VERY important links:

1. (LINKAnna Maria Tremonti, host of CBC’s “Canada’s Most Listened-to Radio ProgramThe Current pulls NO punches in this must listen to Interview called, “Vaccinations: Pro and Anti-Vaxxer parents make their cases”  Here’s another LINK to the show if there’s any problems with the other one.

2. (LINKShannon Des Roches Rosa is the senior editor of thinkingautismguide.com and she has been a source of great support for myself and the Autism community.  When I had to turn down a TV Interview about this subject because I didn’t have transportation and then I read Shannon’s heartfelt, honest article I felt like I had to get this all down to be part of the growing voice and offer my support and experience.

Thank you Shannon! Your words and dedication are making a difference.

I’ll leave the last words to Chief Seattle. A quote I’ve carried from computer to computer for about 16 years.

 

Imbolc

This art piece is my interpretation of Imbolc. The Sun is becoming stronger, waves of heat and light flowing from its centre. A single green leaf to represent hope and the return of life once again.  And the Full Quickening Moon offering her light to the dark and the first stirrings from winters sleep. This is a photograph of the original with border, title and copyright added for online viewing.

↓(clicking the picture will open it in a new window in a larger size)↓

Original Artwork (c) Patricia George-Zwicker

Original Artwork (c) Patricia George-Zwicker. Autistic Adult Artist
Soft chalk pastels. 11 X 17 inch 300 series charcoal paper.

I sat down to write an entry last night but I decided to be creative for Imbolc instead. Serious entries can wait for another day.

So while many call today, “Ground Hog Day” and wonder if Winter will be 6 more weeks long based on a rodent seeing his shadow or not, this Pagan knows the answer already – yes, winter will most definitely be another 6 weeks long.  You know why?  Because today marks the literal halfway point of winter and this season is 12 weeks long – so you do the math 🙂

Before Gregorian Calendars and Christianity – there was the moon, the stars, the sun and the sky. Of course these all still exist but our connection to them has faded as our technology increases.

I use technology, obviously, benefit from its pervasiveness but I am also made less by it and so I stay rooted in the Olde Ways.  I never want to forget how to know and mark the seasons by the Moon, Sun and the Stars.

Imbolc is a Greater Sabbat of the Wheel of the Year. Sabbats are the equivalent of “holy” days for many Pagans.  There are 8 such days on the Wheel of the Year.

Imbolc is directly followed by the Full Quickening Moon this year which has even more meaning and magick attached.  Despite the snow happening here today and frozen ground and lakes, the days are getting longer and we are feeling the first stirrings of Spring.  Sheep are getting ready to become pregnant, life is beginning anew. Ideas for growth are forming, we are planning and dreaming of gardens, swimming, sunny days, warms nights.

So to all who celebrate the Olde Ways, and even those who don’t too – Brightest of Blessings. Starkness has its own type of beauty, there’s silence and healing in the stasis of these long winter days and nights. We are half way there – enjoy this time for it will never be again.

~ Patricia