“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.
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!
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.