The Importance of Autistic People Seeing Reflections of Ourselves in Media – Sesame Street, Julia and Me

I kept seeing a link over and over again in my facebook feed yesterday and today which got my attention, plus a friend shared it on my wall. Once I saw what it was all about I hit the “share” button and started to type out how it made me feel. It quickly became something that belonged here on Echoes of Mermaids and not a fb post.

LINK ⇒  http://www.people.com/article/sesame-street-introduces-autistic-muppet

Fuzzy favorites Grover, Abby and Elmo are joined by their newest muppet pal, Julia, a character with autism, in Sesame Street Workshop‘s new nationwide initiative.”

                                             Meet Julia!! She’s Autistic!

image (c) Sesame Workshop/Marybeth Nelson

image (c) Sesame Workshop/Marybeth Nelson

If you’re NeuroTypical (LINKhttp://musingsofanaspie.com/2013/01/10/what-is-neurotypical/) you might not understand what a big deal this all is, and that’s okay because it’s probably not part of your life experience unless there are Autistic people in your life. So let me tell you why this means so much to me as an Autistic person.

I was born in 1969, the same year as Sesame Street as it goes. I’m actually 8 months older! How special and really life saving it’s been to grow up with them, to have our beginnings intermingled as they have. It’s lucky I even got to see it! Growing up in rural East coast Canada we only had 2 channels — 3 when we could tune in the French one. So this show was a standout not only in its content, but also its longevity.

I can’t ever remember not feeling different from everyone else in fundamental ways that seemed to keep me separate no matter how hard I tried to fit in and be liked. Trying to be understood was nearly impossible.  It was like I had a really important secret that even I didn’t know. Everyday I searched to figure out what it was that seemed to prevent me from connecting to people like I did to animals, to plants, rocks, stuffed animals, the moon and the stars, colours, cameras, books, the number 3 to music most of all.

See, despite a frantic search for a reflection of myself in other people whether in person or on TV I never could seem to quite find it, nor did I go about it in very good ways at times. I was always looking for some sort of ‘sign’ that I was connected to someone else because I just don’t understand the supposed natural process of it. Sometimes I’d find what I thought were enough signs and I’d become out of control about it all, mostly in my head. I’d emotionally suffocate people once I grabbed a hold – all trying just so desperately to figure out where I fit but more so – WHY wasn’t I fitting in despite all my very young mind had come up with to try to make that happen.

The pressure I put on myself for being different — and then trying to crack the code of fitting in because when I acted as my true self it just wasn’t tolerated mostly — was staggering even at the age you see in the photo below.

A girl and her plastic dog. Grade Primary - 1974

A girl and her plastic dog.
Grade Primary – 1974

Sesame Street instantly became something I looked forward to seeing SO much. I could have watched it all day, along with a show that very few may have heard of outside of Canada called “Bixby and Me” (“Bixby Says… Reeeeeelaaaax.”)  I was actually introduced to Bixby at my one room Schoolhouse where I attended Grades P,1 and 2 and walked uphill – just one way – to get to school.  That’s my School picture above and when I was Reeeeeelaaaax‘ing with Bixby!

♪ It's Bixby and me, we live in a tree, and for miles around, there's so much to see. There's plenty to do, and people to meet, so come on along, with Bixby and me ♪

♪ It’s Bixby and me, we live in a tree,
and for miles around,
there’s so much to see.
There’s plenty to do,
and people to meet,
so come on along,
with Bixby and me ♪

Those 2 shows became what I relied on for the majority of my “scripts” (LINK to YouTube Video about Scripting ⇒ https://youtu.be/vtbbmeyh5rk ) from pre-school through to about grade 3 or 4 when those scripts didn’t work anymore with my peers. Even at 46 years old I love it when I find someone who I can communicate with using just lines from Sesame Street or other childhood favourites as the main language.

Until 2011 when the seizures started my life was a seemingly endless cycle of trying to find reflections of myself in others so I could figure out how and where I belonged. So I could maybe be like others and answer questions with ease and not the awkward way I did. So that when I was a kid I could figure all the weird ‘girl’ toys out (umm Barbie? Yeah, I don’t get that whole thing) and look happy doing it because that’s what I saw reflected back to me and it’s what was asked of me.

I was supposed to want to play with other kids and expected to know how. But I wanted the time alone in my room looking at my Kaleidoscope or my Viewmaster to be respected as important to me. My escapes from so many failed attempts at play and friendship because they truly made me feel happy and I didn’t have to struggle so hard.  I was fine with hanging out with my Grandmother, or my pet rabbit, or my abundant ‘favourite’ rock collection.

I also remember watching Romper Room in hopes of hearing my name!

Romper, bomper, stomper boo. Tell me, tell me, tell me, do. Magic Mirror, tell me today, have all my friends had fun at play?

Romper, bomper, stomper boo.
Tell me, tell me, tell me, do.
Magic Mirror, tell me today,
have all my friends had fun at play?

                “I see Robert and Kathy and Mark and Emily and Pa….trick…”

                                               (maybe next time 🙄 )

Because despite wanting those times alone there were also times I wanted to be seen, to be acknowledged, to be understood. I knew I had so much to offer the world but I just couldn’t seem to break through. I notice to this day (literally) conversations end when I participate.

Shows like Sesame Street helped me to be able to exist around my peers enough to just get by. Just getting by never fills you up though, so you’re in a constant state of losing ground – well, sanity really.  I used my scripts from the show and the things I learned from the various skits as ways to communicate with others. But I rarely ever saw myself, even in a show as diverse as it was. It was teaching me ways to be around others but was it really teaching others how to be around and accommodating of me?

They’ve taken a giant step forward in this regard. In giving Autistic kids the opportunity to see a world accepting of our differences. To see that we can fit in on our own terms and not spend all of our processing abilities on working to blend in and hide the things we need to cope – like stimming to self regulate for example.

And they’ve done something which is what ultimately allowed me to feel good about talking about this on my website. They worked with ASAN for the past year on this project!

ASAN‘s Statement on Sesame Workshop’s “See Amazing” Initiative.
LINK ⇒ (http://autisticadvocacy.org/2015/10/asan-statement-on-sesame-workshops-see-amazing-initiative/)

ASAN was able to accomplish this with the tireless advocacy of so many actually Autistic and our allies who work with Boycott Autism Speaks. They pushed for Sesame Street to partner with more than just Autism Speaks, who as it goes is not a good organization at all.

I’m also including a link from ‘The E is for Erin’ that offers a very in-depth critical review. There are many very valid points.

LINK ⇒  http://eisforerin.com/2015/10/23/not-in-love-with-julia/

“Throughout all of their material, they use “person first language” or PFL (person with autism, so-and-so has autism) rather than “identity first language” or IFL (autistic person, so-and-so is autistic) despite the fact that most autistic people prefer IFL. With that, they didn’t even attempt balance. PFL happens to be a total deal breaker for me. I can’t imagine ever telling my kids that I have autism or you have autism, because in that language, it sounds like I have a disease or a disorder, which I do not. I am autistic, which is the way I am and the way I experience the world.”

I checked out the interactive book on their website called “We’re Amazing 1, 2, 3” and cried at finally seeing a reflection of me on Sesame Street. And because when you’re an Autistic female you’re just that much more invisible, having the character be a girl means so much.  As an added plus orange is my favourite colour, like, favouritefavouritefavourite and Julia’s hair is orange!

Julia and Elmo – image (c) Sesame Workshop/Marybeth Nelson

They even have a page dedicated to just Autism!

LINKhttp://autism.sesamestreet.org/

This wouldn’t have even been possible just 5 years ago. I’m excited by the progress in the places it’s happened and a bit more hopeful for the barriers we have yet to break down. I can’t imagine Sesame Street is any less impactful and influential to the young minds that watch these days. The effect of this is beneficial for everyone which is a giant step toward how it should be.

I think though, I’m most excited for #ActuallyAutistic parents of Autistic kids who grew up with Sesame Street. To watch as they see themselves reflected in a positive and accommodating way will I hope, offer some healing for how so many of us were continuously forced to hide who we really are.

I’m really hoping Sesame Street continues to grow this part of their programming. It’s a step in the right direction, but we have a long way to go. Julia needs to transition from being purely digital to a “real” life character in the show so that this becomes far more inclusive. There needs to be Autistic characters of different races.  Black girls especially have a real difficulty being diagnosed and having access to services. We need Autistic LGBTQ characters.  Autism is a commonality — but we are all very different. The public image remains that it is mainly a young white male issue, but that’s far from the overall picture.

I don’t have children, but I have a Great Nephew who is just a year old and it’s a good feeling to know that this far more inclusive Sesame Street is the one he’ll grow with.

Welcome Julia! Lucky for me I already know the way to Sesame Street 🙂

See you there!

Awakening from Hate

My eyes have been rimmed with tears that have spilled over so many times over the last 10 days since the Charleston shooting. It is completely accurate to say that shooting and everything that has come since has CHANGED me. Truly. It can be physically seen and emotionally seen. Last week I wrote about it here on my website:

Take It Down

2 nights ago I left my home and was not coming back. I walked down the property to the Trans Canada Trail and with my head held HIGH and only the clothes on my back I left my home of 23 years with no intention of returning.

I held up my middle finger and took my power back.

The clock stopped in my house at that moment all on its own. It was 8:44pm. (seriously) I roared so loud I stopped time. Remember what I said yesterday about being a Force of Nature?

After many hours and by my own accord, I came back. That little sentence in no way covers the events that led me back. And in my time away, I wrote this poem:

awakening_poem_june25_15

When I woke up yesterday the news of the Supreme Court ruling making same-sex marriage a right Nationwide in the USA (we’re a decade into that here in Canada) I felt this wave of love roll over me. It’s been so long since I felt such pure love for humans and humanity.

I felt part of something, part of a good day in history, part of something that I had given up on totally and that is that #LoveWins and  #HateLoses

In 10 days we’ve gone from the depths of disparity to the heights of love.

And I was here to feel it all. Be it in physical or emotional ways I’ve come to deaths door many times. To my angles on earth and not who keep me going when I think I cannot – thank you. I’d given up that whatever I came here to do could be done. That what makes Patricia unique and special and separates her from so many will eventually be what changes minds and hearts and opens them up to a different, not less, way of being.

I am a conduit. I am here to reflect back to you the good and the bad, I’m here to learn but that learning is so I can teach. When I break that universal contract, I suffer. I don’t want to suffer any more.

I had let hate into my heart. My heart is pure though and cannot survive and thrive in hate. I’m laying my hate down. I can’t abide that I woke up from a coma for it to get worse, I can’t.

There are people in this world who get joy from hurting others. If I gave back to them even a fraction of what they’ve laid on me, they couldn’t handle it. They have sad, dark little lives. I know, that’s what was happening to me as I got caught in a place that just isn’t for me. One of lies, of treachery, of feeding off the pain caused in others. Misery loves company. I’d rather be alone. I won’t be like them.

I will walk away, I know now I can do it. I’m not beholden, trapped, I’m not a victim, I’m not going to be a footnote, I’m going to write the damn book! And those who wanted me to say nicer things about them when I do? Guess they should have treated me better.

*exhale

The Vaccine Myth Hurts Autistic Acceptance

I will be involved only if your voice is a part of the program.” said my new friend Allison Garber after a series of quick emails back and forth.  I’ve come to really rely on her opinion and perspective on many things.

I’m going to need you to do something before you go any further please!

Click on the picture just below this paragraph (will open a new window) and listen to the documentary first. It’s going to be the  topic of the rest of this entry and one of the most important things I have ever done. It’s audio, under a half hour and features myself and Allison and our perspectives/experiences with how involving Autism in any type of vaccine debate is harmful to those of us living on the Autism Spectrum and our families.↓

On February 6th, 2015 I got a very interesting message through twitter from a CBC (Canadian Broadcasting Cooperation) reporter named Melissa Mancini. I’ve been getting more requests from reporters in the last 6 months because of my ever increasing advocacy for the Autism Spectrum, mostly done on Twitter.

This felt different. It felt like something I wanted to do, but I needed to ask my new friend who seems to understand this stuff better than I do.

Allison’s willingness to be inclusive and her need to elevate the voices of those of us on the Autism Spectrum and not drown us out has been a constant theme since we met.  Her son was diagnosed in 2013 – here, let her tell her own story. Allison gave her 1st ever TEDxMSVU talk just 6 days later (video below) ⇓

I wrote the reporter back and said yes.

On March 8th, just 3 days before my 46th Birthday I walked into the new CBC studios and did something which I could have never guessed I would be doing, but that felt like the absolute right thing to do.  With the microphone finally in an acceptable place I began the interview. Time flew – When Melissa turned her recorder off, we had been there 2 hours!!  I was also given a very personal tour. My past experiences in Playback and Community Television meant I had Scripts to go on and really had a wonderful experience from start to finish. I felt accommodated and safe.

This morning the documentary aired on Atlantic Voice.  As I was writing this I heard the promo for it come on another CBC program and my voice lead the sound clip. A warm rush went over my body.

I listened to it last night though. It aired online on Friday and it took me till the witching hour to listen. I was so nervous. All the nerves that I did not have on interview day, were sure here now!!!

I invited a dear friend to listen with me.  She’s in California, USA and I’m in Nova Scotia, Canada. We were on our computers at the same time.  This is not unusual for us, it’s how it’s always been. We met online about 15 years ago and sharing this experience with her was intensely special and will just further strengthen a bond that is as deep and true as any I experience face to face.

I was shaking as I hit play. No amount of stimming was going to help me sit still any sooner so I rocked, wiggled my fingers, whatever I needed to do to soothe myself as the words passed through my ears.

It’s the idea that we’re damaged, that we were normal, quote/unquote-normal, until something came along that damaged us.

YOU!” typed my friend and it took me aback. I didn’t recognize my own voice at first. Wow. It is a moment I will never forget. It overtook me, I will admit.

It’s been an incredible process leading here. From my brain finally hitting the tipping point and seizures beginning right at the end of 2011, to coming to this place where I am listening to myself advocate and not holding back for countless people to hear. I’ve stepped from the shadows of a 25 year incorrect Manic Depression (BiPolar) diagnoses received as a teenager and fully embraced my proper Neurology of Autism.  The transformation became 100% complete when I heard myself say in the documentary –

Because when you see the vitriol. When you see that people are more scared of Autism then they are of diseases…it makes you step back”

That’s what really confuses so many of us…That you would really rather risk your child getting this disease then being Autistic? What is it that you think autism is that’s so much worse than this?  Like, we’re just people

Another admission – I hit pause and laid my head down on my desk and sobbed. That guttural cry that holds nothing back and leaves it all exposed. It’s a point from which you can then start again.

In my determination to make the path for kids like Allison’s perfect Hugh, I am finding healing for myself through self acceptance. And true to how I live a life of full circle moments, Allison and I first became acquainted on twitter through a seemingly unrelated issue. One that brought me great pain for a long time. I’ve let that all go now with the closing tones of the documentary. That experience brought my website name, the revitalizing of a lost art form for me, and Allison and her family. It’s opened up countless opportunities.

Deviation from the norm

I’ve covered the vaccine controversy in regards to Autism already (click here to open in new window) – so I don’t need to do that in this entry. What I need to emphasize here, as I did in the documentary, is the urgent need to move past the lie of an Autism/Vaccine link as well as past Autism Awareness and onto Acceptance.  A message especially amplified in April as events and organizations as varied as us all on the Spectrum, look for ways to raise anything from money to acceptance to awareness.

All of this can happen, but it doesn’t need to happen at the expense of the neurology of those of us with differently wired brains any longer. We are not tragedies to be looked down upon nor ethereal beings to stand in starstruck awe of.

We are people. We hear and understand more than you seem capable of accepting or understanding. The sooner that happens, the sooner the lives of all of us improve. It’s not us who are limited in our abilities to comprehend – from where I sit it’s a large portion of Neurotypical society who is limited in their ability to accept normal is nothing more than a setting on a washing machine any more.

I hope the documentary (here’s the link again!) will be a step forward towards a better understanding and acceptance.

Clicking this picture will take you to the web write up to go with the documentary.  I was humbled and really excited to see my artwork and photography included. Wow!

googlenews screencapMany thanks to:

Atlantic Voice on CBC Radio Maritimes (those links are near bottom) and all the reporters and people dedicated to sharing our stories and the issues facing the various members of society. And to the reporter, Melissa Mancini who has shown great care, patience, and consideration and has really captured the heart of everything I was trying to say. This will stand as an important part of the growing dialogue towards Autism acceptance not just here, but around the world.

And most importantly my family and friends for all their support, guidance, laugher, tears, abiding of my special brand of stubbornness, and not abiding it too. I love you all so much I’ve done this huge thing so I can be me and stay with you all as long as we can.