It’s happened to me twice in the last couple of months. Being an Autistic adult and being completely excluded from events that involve Autistic/Neurodivergent children and their parents.
I don’t want anyone to think that i’m negating the importance of a parents role in their child’s life, and the fact that Autism is genetic. More likely than not, the parents are neurodivergent.
However, when it comes to Autistic advocates who happen to be adults, myself and many others are often left out of the narrative, planning and the conversations that go on.
Recently, I challenged a local group because they were running a “Let’s talk Neurodiversity” panel with professionals who work closely with neurodivergent youth, but not a single neurodivergent adult was actually included in the conversation. When I asked why and explained that when you’re talking about a marginalized group, but you choose to ACTIVELY and CONSCIOUSLY exclude the people from that very group that you’re discussing, the response I was met with was “But it’s for parents”, repeatedly.
I was not pleased with this. Finally, I was allowed to do an introduction and was told i’d be part of the conversation. This was not the case, I did my introduction and was left out of the rest of it. I was told i’d be part of the question and answer session at the end and I was not.
The most ironic realization I have come to is that these organizations and events work so very hard to make a point of including families with neurodivergent children and providing events and resources for their children, but the idea that their children are going to grow up and become adults seems to be lost on them. I wonder how we’re supposed to truly empower children if they realize that when they become adults, that they’ll be seemingly excluded from anything related to Autism.
It’s important to do better, create opportunities and empower each other, instead of touting inclusion and diversity and leaving out an important demographic.
Yesterday was just that, the international day of persons with disabilities and I was invited by BC PEOPLE FIRST. I am a proud member and I always jump at the opportunity to express my loud voice.
The rally was at the Vancouver Art Gallery and was organized by BCEdAccess. It was a slightly cold day and was mostly attended by parents. The rally had a stronger focus on educational access but it was also important that other disabled voices came in to play and I am thankful for the opportunity to be integrated in to such an important discussion.
I was so proud to stand on the steps and read out my speech. I am incredibly comfortable speaking in front of a crowd. I don’t get butterflies, I get adrenaline.
Here’s my speech in a text format:
Hi Vicky,Just wanted to send over my speech.
I am Margaux Wosk. I am here with BC PEOPLE FIRST.
I am an openly disabled, Autistic self-taught artist, designer – I design and sell Neurodiversity & Autistic Pride merchandise and I have an etsy shop, I am also an activist and advocate.
Identifying as disabled versus “person with disabilities” is a personal choice. It is never anyone else’s place to dictate how I identify or ask me to change the language I am using. I am not “differently abled” and I do NOT have “DIVERSE ABILITIES”, to insinuate that my abilities are different or diverse is incredibly offensive. I still have my strengths and weaknesses but it’s important for me to clarify that my abilities are NOT diverse.
My abilities are limited and I need additional support. I am struggling.
Personally, choosing to not use the word disabled contributes to the erasure and lack of resources that I, and many others, are fighting so hard for. My disability is not an accessory.
Remember, Autistic children become Autistic adults. Include us in all of the conversations about Autism Funding.
I am joining all of you here today to stand united in the core belief and HUMAN RIGHT that disabled children and adults DESERVE AND REQUIRE SO MUCH MORE. Asking, begging and pleading for the very minimum for years is exhausting. We need to be heard. Action needs to be taken and quick.
As a child with learning disabilities growing up in Vancouver, I was often bullied, ostracized and left out of things that I should have been integrated into. Instead, I was pulled out of my class in front of the other students who would laugh and belittle me while I went off to the learning assistance classroom. There, I would have very flawed support . I would then put back in to the classroom to endure more harmful behaviour from my peers.
I was confused, depressed and anxious. My mum would always say that I was “falling through the cracks” of the system. Moving around from school to school was traumatizing. I never ended up graduating from high school and instead got my GED.
Now, as an adult, I would love the opportunity to take graphic design courses to enhance the skills I have already gained, but the barriers are too overwhelming.
First off, I would have to take out a loan. I am not in the position to take on any debt.
Secondly, there’s fluorescent lighting which is incredibly debilitating for me.
Thirdly, I would have to spend more money to prove that I have attention deficit disorder, dyscalculia, which diagnoses were on a piece of paper that got lost through the years – on top of my Autism Diagnosis. These evaluations are NOT FREE.
For an adult autism diagnosis, it can be very expensive. Some assessments are around 2,500 dollars. Without this glorified piece of paper, many adults are unable to access PWD which also requires a lot of focus, determination and hoops to jump through – just to be able to apply. Applying doesn’t even guarantee that you will be approved, either.
If the government is not providing our youth the strength and resources to have a fulfilling future, we are failing them!
If the government is not providing adults with additional resources, we are also being failed.
On top of those concerns, if someone, like myself, does not choose a path of being employed by someone else, but has goals for self-employment: the resources are limited there as well. Did you know that BC DISABILITY EMPLOYMENT month does not even include disabled people who are self-employed? We are NEVER empowered. Oftentimes, the narrative is “How can able bodied, allistic people in positions of power, utilize disabled people for their own benefit?”
If we don’t start fixing things, like removing isolation rooms and cease ostracizing students, we will ALWAYS be at the mercy of someone who does not have our best interests at heart. We will not be able to contribute, in our own way, when there are people who are so quick to have us morph into their idea of what a perfect, behaviourally modified young person needs to be.
I addressed many of my concerns at the 2022 BC provincial budget consultation and based on their report, many of the topics that BC PEOPLE FIRST and I spoke about were not addressed.
We are simply not empowered to be independent. Our disabilities are often ignored. We deserve adequate treatment, we deserve accommodations, we deserve help and we deserve financial assistance. Listen to us. Make changes. Provide funding. I’m NEVER going to stop fighting. Change needs to happen NOW.
-Bridging the gap between my art and Autism to open up the dialogue of what Autistic people are capable of and reducing stigmas
I feel like there’s so many things that Autistic people have accomplished, but instead these large organizations, who tend to weaponize “Autism Moms” against Autistic Adults, choose to continue to make life even harder for Autistic people.
If you’re Autistic, what are the things you are most proud of accomplishing?
If you’re not Autistic, do you have any questions for me?
Also, I wanted to add that I am having a contest for my Neurodiversity & Autism merchandise over at the Made by Autistics Marketplace on facebook and if you’re feeling like joining and entering, I would truly be very jazzed about it!
As someone who identifies as non binary, getting my period is something that I don’t enjoy dealing with. I will admit that it’s MUCH better than the alternative (the alternative being pregnant, i’m openly childfree).
When I first found out that I was Autistic, my life finally made sense. It was a sigh of relief. I didn’t know of the great change that the Neurodiversity movement has been striving for until I was able to join the conversation.
Whether it’s the blue divide, eugenics, harmful imagery, hate towards LGBTQ2+ individuals or a vast variety of other pertinent social issues, I am continually learning.
Some of these issues are very divisive. Throw religion in to the mix and it’s a whole other can of worms.
Sometimes i get so fired up and I feel compelled to create content about it. I hope that it’s something people want to read and share. Although, that’s not always my main motivation, I believe it helps me get out all the things that are bubbling up under the surface so I can rest a little bit easier, knowing i did something constructive with it.
From being targeted by friends-of-a-father-of-an-Autistic-child to an Autistic Christian content creator, to someone who alleges that I am creating content with hate directed at someone else (amongst many other examples), It hasn’t come with out its fair share of drama which I am not immune to. Yes, people do make critical and hateful comments towards me.
I don’t think anyone is immune, i think what varies is the way you handle it. Bullying is not something that’s new to me. I always stood for what I believed in. Seemingly having a non-conformist opinion (the contrary to what everyone else was thinking), I never went along with the general construct of society. I usually didn’t agree with my peers. I knew I stood out and that I was weird or different. My schoolmates didn’t hesitate to be cruel and unusual with telling me these things.
I cried a lot as a child, but as an adult – I have chosen to find different ways to handle things. My life experiences have paved the way for me and have created positive changes in my way of thinking. I am not saying that I always have the most optimal coping strategy; it’s flawed.
I do get angry sometimes. I choose to talk about my feelings with others so I can get an alternative point of view. I think it’s essential for me to form some well-rounded responses, even if they just live in my head and are never uttered aloud.
Negativity bias is also something I struggle with, thanks to years of emotional abuse during my most crucial brain development years. This is very evident when I get a flurry of positive responses and seemingly am only able to focus on the one or two negative ones I receive.
I need time to myself, self care and self reflections are things we shouldn’t ever deny ourselves. My blog was initially started as a passion project to portray how I felt about receiving my Autism diagnosis. I never thought that I would end up on various news outlets. I guess that is because I am so passionate. I put my whole heart in to everything I do and I believe I am here to create real change.
Being so lucky to find a generally accepting community of Neurodiverse friends around the world has been one of the greatest gifts that came along with my diagnosis. (I want to say that I don’t believe having a formal diagnosis should negate anyone from finding this community. It’s just how I personally needed the validation of a dx for my own reasons)
I have learned so much from them. Eve of International Badass Activists was one of the first people I ever had the pleasure of talking to. Her website was one of the first Autism activism sites I ever visited. I am so thankful to Eve’s strong voice. She inspires me and leads with strength.
I have no plans to stop. No one is going to force me in to silence. None of my Autistic friends and change-makers should be bullied in to silence.
I stand with them, beside them and for them. We will not shut up. We deserve to exist.