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.
I have been incredibly busy these past couple weeks. I spoke at an online advocacy convention on September 26th, reflecting on my experiences in the education system. I wanted to focus on the fact that I, someone who dropped out in 11th grade and ended up getting my GED, was still able to be successful and thrive. I wanted the parents who were participating to understand that their child’s success in the school system will not necessary determine their success in the future. Not everyone thrives in a regimented system.
Then, on September 30th, I spoke at the BC Legislatures Provincial Budget meeting (at the 02:05 – Two hour and five minute mark) https://twitter.com/BCLegislature/status/1443671164690173960 in regards to being a disabled person and a small business owner. I spoke about being self-employed and the lack of support and was asked by one of our MLAs to submit a letter. I just wrote it and emailed it off.
I’m so passionate about highlighting our voices because we are left out of the narrative. The press releases for September’s British Columbia DisabilIty Employment month didn’t include one quote from disabled small business owners or self employed people. It just included quotes from people who hire us. It’s frustrating to know that there are folks out there who didn’t even know we exist and thus, by default, didn’t choose to include us in this very important conversation.
This is my “Flower Power” collection! I also have matching stickers and patches will be arriving October 4th. You can find these items at retrophiliac.etsy.com, alongside many other items I have available. Every time a purchase is made, it further ensures that I am able to live my dreams and hopefully be given the chance to help other people who want to be on the same path of independence that I am on.
I also secured my 10th retailer! I am grateful that I reached this amazing milestone, alongside other milestones to celebrate:
-Over 500 sales this year alone
-Over 1000 sales in total
-Over 200 five star reviews
And, I also celebrated my 33rd birthday and felt more accomplished than ever.
Now, to fight the good fight and continue advocating for disabled small business owners and self employed people. I’m not going to stop, i’m just going to keep pushing forward! Thank you for navigating this journey with me.
First up: Accessible Employers has been avoiding me for a few weeks now. I do think I found them mentioned in a government budget report article. It seems like they are still being very hesitant to be open about their budget. Which means one thing: They are a FOR-PROFIT BUSINESS. If they were a non-profit, they’d be on the charity database websites and would have to disclose their financial reports.
Secondly: I was a vendor at a market on the weekend and I was so excited to connect with new people and make a few sales.
I also was interviewed by Rachel and Hiiro from the Getting Jewcy Podcast. We had so much fun chatting and I was so thankful I got to speak about things that i’ve been talking about on this blog, too.
(This is an OPINION PIECE. These are words that are from my brain and are not necessarily going to be shared by all.)
Being disabled is something I have experienced for my entire life. This is not something I can decide to opt out of.
I’ve done my absolute best with attempting to sustain myself, finding unconventional ways to fund my creative endeavours. I’ve expanded my etsy shops return on investment by approximately 224% over last year.
This has not been easy. All the local, provincial and federal or country-wide resources I have reached out to have sent me in a perpetual circle, each referring me back to the folks who have referred me to them. This has created a sense of frustration and has made me aware of how inaccessible resources are for disabled folks who have chosen to work for themselves.
The one program that is available is through Community Futures BC and it is called the Entrepreneurial Development Program for Persons With Disabilities (which is outdated language). From what i have seen, these programs are reliant on their disabled clients taking out business loans.
Expecting a disabled person to take out any kind of debt does not make sense. I am unsure why the Western Economic Diversification branch of the Government of Canada would put their name behind a program when they already are very careful (and somewhat protective with their funds) about folks who receive any kind of social assistance or disability. They have admitted to handing out grants for other programs, so they should be aware of the huge financial risk they are supporting. Disabled people are already at risk in so many other ways that I can’t begin to wrap my head around the fact that they are so comfortable promoting debt.
Clearly, the programs that are promoting that kind of debt are receiving program-specific funding from the government. If the programs receive money that, chances are, they are not expected to repay – then why is it a good idea to make marginalized people take on financial debt when the end goal is to be financially independent? Our lives are fragile. Anything could happen to us. Would we really want out families or next of kin to be financially responsible for the debt we may not be able to pay back? I certainly would not feel comfortable with that amount of stress and expectation looming over me for years.
This is a huge problem that needs to change.
Which brings me to my next point and some opinions I would like to share about an organization called Accessible Employers.
I have emailed nearly all of the members of their President’s Group on Friday, July 2nd 2021 and, at the time of this post – I have not heard back from them. I also have emailed them multiple times to the email address listed on their website and also have received complete silence.
My introduction to their organization was through someone who had heard me speak for an engagement that I was hired for. He seemed impressed and said that he thought that there might be a way that Accessible Employers and I could partner or collaborate. I was excited – until I wasn’t.
I already had been completely gaslit and deflected upon in a conversation I shared with Lisa, the owner of a local bakery called Gabi & Jules whose entire marketing tactic relies on the owner having an Autistic child. She claims that she strives to hire inclusively. This all might sound lovely and wonderful, but it’s not.
Firstly, Lisa is 2nd in command of Accessible Employers. She, and the 24 or 25 other people who sit on the Presidents Group, are (from what I can tell) not disabled themselves.
Secondly, Lisa uses the puzzle piece in her shelf talkers for her bakery goods, her boxes (which she ordered more of – quite a while after I attempted to kindly educate her on how hateful this imagery is – and when she responded to me, she made it sound like it was an opinion of mine and not a fact), her vinyl wrapped vehicles, her awnings and much more. Her website’s inclusivity and autism portion uses plenty of puzzle pieces, as well as uncomfortable language like “…..we have seen the beauty and kindness that comes from seeing abilities rather than disabilities.” which essentially creates a negative and harmful dialogue around disabilities. Being disabled is NOT a bad thing. Using language like this is.
Thirdly, the videos used on Accessible Employers to talk about their organization features their business-clad members discussing the benefits of the organization.
The exploitative language used contains words like “bottom-line” when asked about the benefits of hiring disabled people. It’s actually incredibly cringy to watch and I haven’t even outlined all the things wrong with it.
There are more videos, such as the one for Gabi and Jules, which again, features the tokenization of Autistic people, outdated language including functioning labels, talking about disabled folks in an almost ‘manic pixie dream girl’ way – as if to say that we are some kind of subservient entity whose job it is to submit to these participating businesses and make them more money.
If it sounds like i’m making this up, the information on the landing page of accessible employers actually has language like “90% of consumers prefer companies that employ people with disabilities.” and “Embracing an accessible and inclusive workplace is just good business.”
I would like to know what kind of entity they function as. Are they a non-profit? A charity? Where are their financial statements? What kind of government kickbacks and incentives are they receiving for each disabled person they hire? Why is there not a single disabled person on their board? Why are the founders not choosing to reinvest any of the additional income they are creating to actually empower individual disabled people to work for themselves?
Chances are: They don’t feel like any of this is their responsibility. They probably don’t feel like they need to disclose any of their financial statements or that no one is going to hold them accountable for using and enabling ableist language and the blatant exploitation of their entire organization’s structure which is UTILIZING DISABLED PEOPLE TO BE MORE PROFITABLE. Also, I have not seen anything about increasing minimum wage, paying their employees more or giving them any kind of additional benefits. It becomes more obvious to me who is actually benefitting by this organization or business.
At one point, I was contacted to write for them and in exchange they would allow me to promote my ND Enamel Pin and it sounded like they were not going to pay me, either. I told them that autism “awareness” (which is the language that they used) is not a narrative that Autistic people are in charge of. I told them my Neurodiversity pride pin was NOT just for Autism (which they inappropriately assumed it was, calling it my “Autism Pin”), and because I spoke up and corrected them, they essentially rescinded the offer. This could have been the perfect chance to learn something new. They also could have considered discussing this further. It was a great opportunity to learn from me, someone who is part of the disabled demographic they are supposedly serving or being served by.
Ironically enough, they did post a tweet using acceptance over awareness.
This interaction (the proposed writing gig) was the first for me and it highlighted their inability to listen to disabled people, admit their wrongdoings and promise to create change – which Lisa Beecroft echoed when she REFUSED to take responsibility for utilizing puzzle pieces for her business. One thing is for sure, their inability to listen to disabled people is consistent throughout the organization or my two interactions i’ve had with them.
Why is it so hard to accept that disabled people have a voice? Why is it so difficult to understand that we are not just subservient, malleable pawns that can be shaped to serve their bottom line?
Changes need to be made. They need to be held accountable and they have the ability to be pioneers in this space. If inclusion is what they strive for, they need to put their money where their mouth is and create REAL positive social change instead of co-opting the voices of a community that they aren’t even part of. They are not living the disabled experience first hand and understanding why our voices need to be added to this conversation is the first step.
Not only was I a recipient of a BC Arts Council grant – which means I have the ability to create more awesome things, but my local MLA (Member of the legislative assembly) Rick Glumac spoke about me at the British Columbia Legislature in Victoria.
I am so grateful that my hard work was acknowledged and that he spoke up about the puzzle piece, awareness vs acceptance and used my correct pronouns.
I’ve also contributed to a few “Nothing with out us” segments on CBC’s “on the coast with Gloria Macarenko”, and i’m incredibly thankful that I have been given this opportunity.
I’ve been keeping myself as busy as possible and I will have many new items that i’ll be releasing soon and I even got my first dose of the covid-19 vaccine. I’ve been working on keeping myself hydrated and my mind in a more positive state. It’s a challenge though and I can’t wait until my family, friends and roommates are fully vaccinated.
I really can’t wait to share more good things with you.
As usual – I have been slacking when it comes to writing and updating this blog. That’s a little unbecoming and not up to the high standards I reluctantly uphold for myself.
It’s been hard and my energy has been fluctuating. There are days where I am apt to clean and tidy up my surroundings and then there are days that are spend entirely in bed, sometimes accompanied by cookies.
I’m on a constant rotation of just a few things. Netflix, napping, eating, art and a minute amount of self care. I’m trying to focus more on that because I know how important it is for my mental health.
Some tasks are more difficult than others, including running Made by Autistics Community on facebook – a task that is emotionally draining at the best of times – it puts me right in the forefront of having to maintain some order and good reading comprehension. I’m not great at the comprehension aspect and I find that keeping objects orderly versus people is already something I obsess over. Throw emotions in to the mix and I sink, real fast. I make mistakes, we all do – but there’s one thing we can choose to NOT do – and that’s call people names. I had enough of this in my past (hurled towards me with a cold blast of anger, no less) and I don’t need to be triggered.
I’m thankful I have people I can speak to who have been supportive of me because I can only take so much criticism in one day. I burn out faster than i’d like. It’s been hard not having any physical affection or the inability to see my friends and hang out in close quarters. I realize that we’re trying to do our best as a whole to stop the spread of a really horrible virus and some of the things we can do are:
Wash Your Hands
Maintain Your Distance
Three rules that could make a big difference. Hope you are staying healthy and happy!
PS. I also started a petition to make it mandatory to have ALL cosmetics be tamper-proof sealed. Could you sign it?
Firstly I wanted to thank Van Dusen for giving me the chance to bring my entire family! We had a blast.
If you’re in or around Vancouver, BC and you want to do something joyful for the holiday season, look no further than the Festival of Lights! With over one million lights decorating 15 acres, the scenery is sure to dazzle even the smallest of humans! With free rides on the carousel (my niece went on like 8 times!), a dancing light show, photos with Santa, food trucks and much much more – you are guaranteed to have a lot of fun! We did.
My speech on September 28th went particularly well and I wanted to share it with all of you:
My kickstarter ended and right now it’s in the stage of collecting payment. Once I get the cards and fulfill the orders, I will be donating some to various animal welfare organizations to help raise money for them. I will also be listing some on etsy as well! I’m so pleased that the kickstarter was such a success.
I didn’t have the opportunity to protest Autism Speaks Canada, but I am hoping I can be there next year. I always talk about how they continue to silence Autistic voices, so it wasn’t a surprise when I went on twitter today to see that I was blocked.
I was talking about the Inclusion Art Show and that’s happening this Thursday. If you’re local to Vancouver, i’d love to see you there.
I have plenty more I want to write about but it’s late (or early?) and I can’t formulate anything else at this time.
Trying to see through the thick cloud of anxiety and depression is no easy task. It’s a huge, huge burden to bare. The flashbacks have become more repetitive, they feel deeper. Each time I fail, I feel those traumatic events seeping back in and filling those gaps where hope once was. It is a situation full of despair.
I should be happy or at the very least feeling fine. I think part of the disappointment is due to the fact that I really thought the article on The Mighty would perform better. I thought it would drive people to my website and to my shop, but the views and interactions have been fairly dismal.
The hits on my Etsy shop have totally decreased too. I heard there’s something going on with an algorithm to do with the people that don’t have free shipping or don’t offer it on all their listings. It’s making them less visible. I know for me that when i sell original pieces, shipping is included. It’s everything that’s made by a 3rd party that has shipping separately.
I also should be pleased with myself about having my speech coming up later this week and being approved to be a consultant about issues surrounding mental health and Autism–and yes, I am looking forward to creating change, but i’m also the poster child for those issues. So, I guess in a roundabout kind of way, i’m going to really be able to reflect on my experiences and create change. That’s the silver lining.
I wanted to share some images that my customers have shared with me, which is pictures of their purchases from my etsy shop. This helps keep me going, but sales in the last while have been so dismal. I’m also upset because the way advertising works on etsy is that I paid 4.80 American to get one person to click on one item that they didn’t even buy. So frustrating. I’ve heard better things about facebook ads but i’m just not even sure how to go about it. Seems when I talk about business, there’s people that genuinely want to help and then there’s people who poach on my lack of experience and try to manipulate me to pay them. I guess that’s another business strategy–but it’s one that I don’t want anything to do with.
If I can bring joy to others, even though i’m suffering, well.. I think that’s a way to turn something negative in to something positive.
I tried creating a new plaque that says “cats make life purrfect” but the cats I drew look terrible. The two wood signs I was happy about completing, haven’t really seen much traffic either. I thought they’d be a bigger hit.
Greta Thunberg, a climate change activist and fellow Autistic has been taking quite a beating online. It really upsets me that people say such horrible things about her. I think politics are a main driving factor for people to be so hateful in this world. I tweeted about the honesty of Autistic people and how we’re fact based and it definitely goes for her too. Actually, this quote of mine says it all: