“Where did that seagull come from?” asked my Member of Parliament as it stopped her in her tracks on her way to greet me.
Sitting on a shelf was a beautifully carved piece of folk art. A seagull in flight. It was quite large, pretty well gull life sized and we all admired the craftsmanship.
It apparently was new to the office.
So was I.
I was 6 years old when I saw Prime Minister Pierre Elliot Trudeau rushing through the halls of the Parliament Building in Ottawa. My Grandfather took me to see them. He thought it was important that I understood the political process even from such an early age. And I, being so unlike most other kids my age embraced the opportunity with gusto.
I only caught a glimpse of him- but it was enough to totally enchant me. To me he was a King and I was in his castle. I felt like I was now more special for even just being near all of this.
41 years later I am standing in my Liberal MP’s office after requesting a sit down meeting. I’ve got my paperwork in a nice folder. I’m not entirely sure how to begin and I am hoping I know how to end!
A Seagull, huh? Okay Universe, we start with a carved seagull.
Autism Nova Scotia helped me out so much by giving me some material to take in a wonderful CASDA folder. So I started with a bit about me and how I came to be sitting her office as an Autistic advocate.
Then I got out the papers from the folder. I felt a bit scattered for a few moments. Thank goodness for all the preparation. I didn’t panic, I knew my scripts would mostly find me.
I talked about the work I, and my fellow Autistic advocates are doing on the CAPP Project. How that came to be and why it is so important. I made sure she heard, at least a dozen times how the involvement and inclusion of Autistic adults is really just mandatory at the point in the game. I let her know that we are often bullied to the point of breaking when we try and add our experiences to the conversation.
I decided as I was writing this that I would create a separate page for the part of my talk that I typed out last night to help keep me on track and to leave with her. So if you want to read that before you continue (certainly do not have to though. No pressure or expectation about that)
[ MP Presentation ]
Because I knew I was leaving the paperwork with her I calmed myself about how I was not reading from my paper like I thought I would. Here’s where my Grandfather’s influence shone through again. Long story short — I did a lot of public speaking for a few years in my teens/later teens through being involved In the LEO Club.
I talked about as many things as I could from my typed words. I relied a lot on me, because isn’t that the pinnacle for what I am doing? Being authentically me?
I glanced down one time and saw where I had typed out, “there is no severe Autism” and quickly found a way to bring the conversation there. It caused a reaction so I found myself spending a bit of time on that because I knew sitting there and being mostly physically abled looking and able to express myself, it is ingrained to think “high functioning“. I explained that I could be “severe” in 5 minutes in other circumstances. I opened up about periods of being non-verbal. I got to explain functioning labels and their effects.
And that led me to be able to talk about ABA Therapy. I was able to relay information that while not my direct experience, it was information about it’s PTSD inducing history. My Therapist has said in some ways I am lucky I didn’t know till later so I avoided such fates.
She asked me what I wanted from her. It threw me, of course, it’s HUGE, it’s like, How are you? See, I had originally called because I was quite concerned about language on a proposed resolution I had read. I came into it too late though, so fair. It was not logistically possible to meet with my MP. The resolution had passed. There was a language change.
I wanted her to know Autistic adults would like to be included in the conversations and decisions that can effect us. We are such an un-tapped resource. And that the language used to describe us often forgets to include how hearing/reading would make us feel. So I asked her to help make that change.
She gave good advice about other political routes I could take, Provincially especially. I was very grateful to be taken seriously. There is progress happening. And I am also very grateful for the experience as it is helping me grow and learn as an advocate, and a person. I thanked her for that too.
I know I wasn’t able to be as cohesive as I would have liked about the CAPP part of it. I decided to rely on the paperwork I was leaving to help with that. Allergies hit me hard the night before. I did struggle with finding words at times. But that’s who I am. Hiding myself kept me from getting involved till later in my life. The work I do on the project very much is part of each step it takes. So I should be confident in the information I left. My work can stand for itself.
I also asked 2 more things from her. I asked if a letter Autism Nova Scotia helped prepare could be delivered to Health Minister Philpott. I hoped there was an in house system to deliver such things, and there is so yes, that is going to happen! Very happy about that. I’ll add the letter to the MP Presentation page.
And this is the thing I was the most excited about being able to ask for help with. Featuring some beautiful artwork provided by Autism Nova Scotia’s Arts Program I left her some posters that have the URL for a very important survey that I am a bit late sharing. From the website…
This survey is important because CASDA and the National ASD Working Group will use the information to determine the direction of the Canadian Autism Partnership Model and to inform the business plan that will be submitted to the federal Minister of Health in November 2016.
Here’s a link to the Projects Objectives — [ Project Objectives ] to learn more.
And to the — [ SURVEY ]
I’d be ever so grateful if you’d share the link to the survey. It’s an effective way to be part of the collective voice going forward in Canada in regards to how Autistic people are treated and the services needed and where we need to focus our time and money effectively. I truly believe in this process I am part of. It’s given me a sense of direction and purpose in my life.
My Mom drove me to the meeting. I’ll be unpacking the layers of how important that is to me for a long time to come. As we drove and she asked me where I get this from. “You don’t get it from me” she said.
“I get it from Granddad…and Nanny” I said
Granddad told me from the time I was very little that he went to war so his future children and grandchildren could be free to speak their minds, to not feel separate from the process but instead a part of it
“You know Nanny never shied from speaking her mind?” both a question and a statement.
She agreed. My Grandmother didn’t suffer fools.
This is more like the life my Grandparents wanted for me. To be of service. To be kind but firm in my resolve and convictions. To be heard and to listen. To be myself and embrace that I walk the beat of my own drum. To never stop beating that drum.
I told my MP that for me, I’ve been born twice. That Tuesday in March of 1969 and the day I fully embraced being Autistic. Diagnosis is a privilege, I told her. Self diagnosis is (for the most part) accepted within the Autistic communities. So it doesn’t have to be in a Doctors office that you have “that moment”
But make no mistake, it’s indescribable except to each (Autistic) other. And then we barely have words to share with each other. It is more a knowing, a reason for the fire that burns within. It’s now the answer to that question I’ve been asked so many times…
How can you be so brave Patricia, how can you get through the things you do?
Because I am Autistic. It has taught me how. Having to go through over 4 decades trying to figure out where I fit in gave me a depth of strength and resilience that got me this far. I’m home now. Not my planet, mind you 🙂
But at least I know I am truly not alone here anymore.
And that means everything.
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