As April starts tomorrow, I’ve been spending a fair amount of time fighting the good fight on social media – Educating people about the evils of Autism Speaks, speaking up for autistic rights, and thanking allies for spreading good information.
One question I’ve been asked a lot lately is “Why is the puzzle piece considered offensive to Autistic people?”.
While I can’t speak for all autistic people, obviously, I’d like to take a few minutes to give my own personal view on the nature of the offense.
A popular saying to accompany that symbol is “until all the pieces fit”. Admittedly, this sounds nice enough on the surface… but to those of us who have spent our lives on the spectrum, it’s actually a really gross and horrifying sentiment.
First of all, there’s the idea that we *have* to fit. That we’re not *allowed* to be different. As I’d mentioned in an earlier entry, I’ve read that autistic people who hide their autistic traits “often have high degrees of anxiety or other mental health problems”, from the constant acting. I believe it. The stress to “fit”, to not be singled out as different, and – in many cases – to conceal your spectrum status from employers/potential employers is a huge issue.
I spent most of my life trying to fit in, to pass as neurotypical, and to ignore my diagnosis. I didn’t “come out” until I was well into my 20s, around a decade after having an official diagnosis. It was exhausting… and I was never truly happy until I accepted myself, and just let it be. I am who I am.
Do you know what happens when you try to force a puzzle piece into a space where it doesn’t belong? It warps, folds, and can break. Assuming you can actually force it into the space you’re trying to, physically… it still doesn’t “fit”. There is no reason in the world to force a puzzle piece into the wrong space.
Not only does it not ADD anything to the puzzle it’s being forced into, it takes away from the piece itself. Forcing it into a wrong space deprives that puzzle piece of completing the puzzle it was meant to.
Anyway, enough metaphors. Let’s talk real facts – the ways that autistic people are forced to fit in.
There’s the more benign things – being shamed and otherwise discouraged from saying and doing what comes naturally to us. Flapping, toe walking, whatever. For me, it was chewing collars and disassembling pens / binders. Was it harmful to shame me out of habit? Probably not, in the long run… but it definitely contributes to this narrative of us being “lesser than”. Sometimes it seemed like those who would address my quirks felt like they were trying to train a monkey to be human. It’s gross to be on the receiving end of that.
As I was diagnosed early on in Aspergers even being a thing – and because I’m seen as “high functioning” (I hate those labels, btw. Super disrespectful to many autistics), I got to avoid most of the problematic “therapies” out there. The only thing I can really remember having to do, was getting taken out of class on a regular basis during elementary school, to go sit in the art room with an adult .. Councillor? “Big Brother/Sister” type thing? I don’t even know what their actual title was. We’d sit and talk and mess around with craft materials. Not particularly damaging, and I looked forward to getting away from my classmates.
I didn’t get subjected to ABA – Applied Behavioural Analysis.
ABA is something that Autism “Warrior” Moms and organizations like Autism Speaks LOVE to support, promote, and push on others. If you read ABA as it’s marketed, it sounds pretty harmless, and potentially even helpful.
… however, if you read about it from those who have gone through it – many of whom suffer from PTSD as a result – you’ll see a very different picture being painted.
25+ hours of intensive “therapy” involving forced coercion every week. Kids being denied meals until they “comply” with whatever it is that’s being forced on them at the time. Subjugation. “Treatments” that – if applied to non-autistics – would be considered child abuse.
As I haven’t gone through it myself, I don’t feel it’s my place to go into too many details – but I really suggest reading the stories of those who have gone through it. A few examples:
Touch Nose. Gummi Bear (First in a series on that blog)
.. And when you read that, and see how people – HUMANS – get literally forced into “fitting in”… hopefully you can see why that puzzle piece is so offensive. I see it, and I feel for all of my autistic brothers and sisters who have been subjugated and even tortured in the name of “fitting that last puzzle piece in”.
… and that’s just the most popular “therapy”. There are all kinds of more “under the table” ‘therapies’… including administering bleach, both orally and by enema. Again, the kind of thing that would be seen as child abuse, IF autistic children were seen as full humans.
That’s why so many of us feel that the “Autism Awareness” thing needs to go away, and that society should adopt Autism ACCEPTANCE as the focus. We don’t need awareness, especially the kind of “awareness” organizations like Autism Speaks puts out there. We need acceptance. We don’t need or WANT a “cure”, we want to be seen as equals, and treated as humans.
So please, this April… Don’t “Light it up Blue”. Don’t join in on the giant, crowd sourced advertising Autism Speaks ad campaign that is “Autism Awareness”.
Instead, please join those of us on the spectrum in fighting for Acceptance.
My personal favourite is “Tone it Down Taupe”. It’s a tongue in cheek campaign, but I love it.
So far as I can tell, neither of these market for any particular organization, and are purely grassroots efforts to fight for our equality.
If you ARE looking to donate to an organization, I recommend Autistic Self Advocacy Network. It’s by Autistics, for Autistics, and does *not* promote the “cure” narrative.
Whew, that turned out to be quite the long entry! Thank you for listening!
It’s my hope that more neurotypical / “allistic” people take posts like this to heart, especially when you come upon Autism Speaks / Light it up Blue / puzzle piece items online. Those of us on the spectrum are in the minority, and can always use help from allies. If you see something, say something
Links to My Previous Posts on Autism
A couple months ago, I came across a notice that upset me greatly – The Nylons were going on a farewell tour, before calling it quits.
I want to talk about what all transpired as a result, but I warn you – this is going to be the most emo post I’ve ever written. Probably going to be pretty disjointed too, I’m sorry! I have a lot of feels right now.
So, I’ve been listening to The Nylons since I was about 4 years old – they’ve been together as long as I’ve been alive, though. Their song “Up the Ladder to the Roof” was popular on the radio station that my mother listened to, and I LOVED it. Through all of my other favourites in music – Eurodance, Celtic Rock, etc – this one song has stood the test of time and remained a favourite all the way to today, for me.
I loved watching Brian Orser skate to “The Lion Sleeps Tonight“, and Landry/Johnston skate to “Bop til You Drop”.
As I got a little older, my little sister and my “peers” discovered boy bands… and I never understood the draw. My sister would plaster her wall with NKOTB posters… I would have to go to the Centennial Library in Downtown Winnipeg to search through Microfiche for old news articles about The Nylons, and print included photos off as MY wall decor. My little sister would have NKOTB dolls, a sleeping bag, accessories, etc.
… I got some FIMO clay and made jewelry inspired by the angular Silhouettes on the One Size Fits All album cover. Way too big and heavy for anyone to actually wear, but it was one of the few ways I could actually explore and express MY fandom.
When I was 12 or 13, I got dropped off to the Centennial Concert Hall, alone, for my very first concert. I was the youngest in the hall by DECADES… and I loved every minute of it! I’m pretty sure Micah Barnes sent me careening into puberty, too. He became my first celebrity crush, even though he was probably twice the age of all the boy band guys my sister and peers fawned over. That fabulous 90s hair! His dancing!
I remember so much of that concert so clearly, it’s amazing it’s made it with me this long. I can even remember the final line to a joke – more like a spoken word poem? – that the opening comedienne made. I remember she was blonde, and it was snarking about her ex boyfriend, in talking about his sweater. “It was 100% ACRYLIC.”
I learned about relationships. Rather than grow up on some of the relationship themes you see in boy band music or other top 40 stuff, I grew up listening to a more mature message. “That Kind of Man” warned me about.. well, that kind of guy… long before any instance of “The Talk”. The Stars are Ours, A Touch of Your Hand, Grown Man Cry… Sigh. So much beauty. I could rattle off song titles and themes all day. It was all night and day to the kind of relationship drama I’d hear about from kids in school… and a HUGE contrast to what I’d learned of relationships from my parents. They provided themes and examples to aspire to, when nothing in my life did.
When I was about 16, I saw them in concert again – again, on my own – and I’ll never forget what happened. The guys had said something that prompted a cheer from the crowd, and I’d let out a LOUD “WOO!”. Arnold Robinson pointed right in my direction and said something raunchy. I don’t even remember what it was, exactly… I just remember turning bright red and trying to disappear into my seat. To this day, I feel awful about it. Like… guilty somehow. There was no way he could have known he was saying something like that to a 16 year old – I think the next youngest person there was in their 30s! I felt awful!
Arnold was always my favourite. He had this deep, rich voice… unlike anything I’d heard before, or have heard since. The passion and energy he put into it.. Ah hell, lemme just share a video. The sound isn’t the best on this, but trust me, in person? Goosebumps.
.. And here come the tears. Augh. He passed away a few years ago, and … I don’t have words.
He had retired from the group around the same time I moved to the USA. I was so upset, I hadn’t bought a CD or seen them live since moving to Minnesota ten years ago.
Yes, I know I’m a terrible fan. In my defense… you should never underestimate an autistic person’s inability to handle change. I try to be good about it most of the time.. And most of the time, I CAN roll with the punches. Arnold leaving the group? NO.
I was still feeling pretty petulant about it when I heard the news of the farewell tour. I tearfully told my husband that we would need to plan a last minute trip to Winnipeg, and he was totally fine with it. As it was happening the day after our 10th Anniversary, we decided to consider the trip to be our anniversary “thing”.
As we arrived at the concert venue, I changed my Facebook status to “I’m about to be emotionally compromised, send kitty pics, please!”… and then proceeded to bawl through the whole damn thing. (Thank you to all my friends who responded my request, by the way – HUGE thread of adorable cat photos was there for me when the concert was over!).
It’s weird when you get really emotional, and you can’t figure out why. It’s like someone just turned the faucet on in the beginning, and I couldn’t do anything about it. I spent a good deal of the concert lost in my own head.
“This is the last time I’ll hear this song live”.
“I am such an idiot for not seeing them more often, while I still could”
“I miss Arnold. I remember exactly how he sounded, singing this very song. RIP”
“This group started the year I was born. Claude has been at this as long as I’ve been alive. Now it’s over. *Insert various thoughts on facing my own mortality*”
… and then there was the matter of trying to figure out why it bothered me SO much. Many people there were fans, and not ugly crying their way through it, after all.
What I came up with was this: Having loved them for almost as long as I’ve been alive, their music has really factored into a lot of memories for me, both good and bad. I’ve listened to their music in celebration of some life events, and their music has gotten me through some other, horrible life events.
During the darkest years of my life, growing up with constant physical, verbal and psychological abuse at the hands of my mother and stepfather, their music was there for me, a mental escape from the hell I was living in. When I got out of that and moved in with my grandparents around age 12, they were the ones who drove me to that downtown library, and who dropped me off for concerts. When my grandparents passed away, I consoled myself with that music. Through every move, every nasty breakup, every major life event… I think The Nylons are the closest thing I’ve had to consistency in my life.
Once I realized that THAT was what was upsetting me, the tears slowed somewhat. I still cried a few times more during the concert – some out of happiness, some from laughing so hard, etc.
The concert was amazing, as always. You know, four year old me had incredible taste – I can’t think of any group with anywhere near the talent of these guys. Just ridiculous control over their voices, their lungs, etc. I love their banter. I loved the addition of rapping, such as in “Don’t Look Any Further” – where the rap was performed by a guest artist. (OMG, can we appreciate Micah’s hair for a moment? Glorious)
Claude… man, I’ve seen him in concert when he still had dark hair- now, it’s white. The amazing thing is – for the most part – he sounds exactly the same as I remember him sounding in that first concert… with about as much energy, to boot!
At the beginning of the concert, I joked to my husband “Quick, guess which one is the original member?” and his reply was “The one with the most energy on stage?”… and Claude really kept it up the whole way. Dancing around, great showmanship.. Even doing the moonwalk at one point. I wish I had half that energy NOW, never mind “when I get to be that age”.
… I finally accepted Gavin Hope. It only took me 22 years to get over my snit about Micah no longer being in the group. Good lord… I am such an asshole! Gavin was hilarious. He won serious points with my husband by doing the Carlton, and kept us laughing the whole time. I wish I’d given him a chance sooner… what a treasure he is!
At one point, they surprised the audience with performing a “bucket list” song – “For the Longest Time”. Apparently I was FAR from alone in wishing they’d do it, and they did NOT disappoint. (Bawled through this one, too!). How often do you see a cover that blows the original away? It was very special… an honour and a privilege to watch / hear!
Towards the end, they performed “Me and the Boys” – a song that I’ve loved for decades, but I’m pretty certain that I’ve never actually heard live. It sounded like some of the lyrics had been changed to personalize it to some of the new members, but I couldn’t make out what was being said in those parts. When Claude belted out “Dance, well I can really dance, you ought to see me move across the floor”, it felt… poignant, somehow. These were lyrics written over 30 years earlier, and here he was singing it with just as much energy, and living up to it – he really CAN dance, and we really enjoyed seeing him move across the floor… myself for the last time, my husband for the first AND last time.
… and it also felt special that this – the final time I’ll get to see them live – was also the first time I’ve shared the experience with someone. It felt profound and symbolic, but not in a way I can really put into words coherently. The concert happened at a time when I was already facing themes of saying goodbye, and losing ties/connections to the past. To share the experience for the first time, with my amazing husband – the light that has balanced all the dark of the past – it was beautiful.
(As I write this blog entry, and think back on all of those earlier themes on what to aspire to in relationships, I am so happy to report that my husband lives up to all of them. I’m listening to some of their older tracks as I write this, and they give me the same warm fuzzy feeling they have my whole life… just like he does. Comfort, love, safety, reliability…)
We didn’t stay for the meet and greet, because I was a mess and knew I wouldn’t be able to put anything worthy into words at the time. I guess you could say…
I won’t ask you to stay
I can love you when you’re far away
Please, don’t stop to say goodbye
Unless you want to see a grown woman cry
…SO here I am, trying to be a little less messy (whoops) and a little more coherent, trying to put into words… just how much this group and their music has meant to me.
If you guys are reading, thank you for everything you are and have done. For all of the lightness, smiles, laughs, joy, and tears that you’ve brought not only me, but the rest of your fans. You are amazing – a national treasure – and I wish you all of the best in your future pursuits.
Today is “World Autism Awareness Day”, or – as those of us on the spectrum tend to prefer – “World Autism Acceptance Day”.
Maybe I’ve just done a really good job of culling the herd over the past few Aprils, but I was heartened to see a few positive posts in my feed this morning… from people not on the spectrum. I haven’t seen any “light it up blue” yet, no positive mention of Autism Speaks… maybe this is the year that things finally start to turn around for us.
It may seem like such a small thing, the difference between awareness and acceptance, but it’s actually a big deal.
You see, the “awareness” campaigns to date have usually been hugely negative towards people on the spectrum. The “awareness” has been that of the scare tactic variety, usually to drum up donations. We get compared to cancer, have to watch as these campaigns tell people that autism will ruin their marriages, and more.
This brand of “awareness” goes beyond hurt feelings, it demonizes us in a way that is exceptionally harmful:
– Every time there’s a mass shooting, it’s speculated that the shooter has Aspergers.
– Parents have been conditioned to MOURN their child when a diagnosis of autism is on the table. The child isn’t dead, they just run a different operating system.
– Some parents are so scared of autism, that there is a huge market for snake oil “cures”. People torture their autistic kids in ways that would never be deemed appropriate ways to treat humans. My personal “favourite” are the people who give their autistic children BLEACH, both orally and by enema. Why is it that WE are seen as the sick ones, the ones who need a cure?
– When it comes to justice, we are seen as less than human. If an autistic person commits a crime, they are a “monster”. If an autistic person is murdered – usually by their parent(s)… there is a huge outpouring of sympathy for their murderer. The fact that an actual human child was murdered by their parent is almost completely lost. It’s extremely disheartening to read that another one of us was murdered, and be subjected to “that poor woman!” and comments about how they were so brave/patient/etc to put up with their child for so long.
This morning, I read some information that stated that autistic people who hide their autistic traits “often have high degrees of anxiety or other mental health problems”, from the constant acting. I believe it!
For me, I spent my whole life trying to hide who I was, trying to fit in. While I wouldn’t say I had any sort of clinical depression.. I was far from happy. It is a LOT of work, a lot of pressure, and in the end… how do I put this?
You know the feeling when you’re in a relationship, and you’re doing ALL of the work, all of the emotional investment, and care more than the other person? Imagine that feeling with regards to literally every person you interact with on a regular basis.
That’s pretty much what it comes down to, and it’s exhausting. You are constantly working to present in a way that is deemed acceptable by neurotypical standards, obsessing over any potential misstep, etc… while all of these people aren’t doing anything to understand YOU, to accommodate you, etc. They don’t even KNOW you, they know this facade that you have to work hard to keep up.
My own personal self acceptance was the best thing I ever did for myself. When I stopped seeing myself as broken, when I stopped seeing my operating system as something to hide/be ashamed of, and when I stopped exhausting myself, trying to fit in… life got so much better.
I made friends. Genuine friends, who I actually meshed with. People who liked me for ME.
I met and married an amazing guy. He just GETS me – and vice versa. It’s awesome!
Daily life became less miserable. I stopped trying to live the life of a neurotypical, and embraced the things – gifts – that made me different. I stopped hiding my intelligence (this was mostly regarding dating life!). I stopped trying to fit in, and to do things “the way they’re supposed to be done”. I stopped being ashamed of things like the fact that I need to change careers every 3-5 years, and just went with it – and I am so much happier and more fulfilled for it.
Life is… good.
Life is so much better with acceptance, rather than “awareness”. I was never UNaware of who I was, even before we had at name for it in my mid teens. I just didn’t really get to live well until *I* accepted myself in my mid 20s.
I could rant for hours. I just wanted to post a few thoughts on “awareness” vs “acceptance”. If you truly want life to get better for those on the spectrum, please aim for acceptance.
As far as awareness goes, I am a fan of the “Nothing about us, without us” stance. Don’t look to organizations like Autism Speaks for awareness… look to people on the spectrum. We’re human, and we’re (mostly) able to speak for ourselves. Some of the most beautiful and well spoken writers out there are completely nonverbal.
In closing, let me just repeat a sentiment I’ve put out there a few times: For real “awareness” this April, please Google the phrase “Autism Speaks does not speak for me”. See what autistic people really feel about this organization.
Spoiler: You will not find another organization more despised by the people it purports to champion, than Autism Speaks.
If you would like to support an organization that actually supports the lives of people on the spectrum, I recommend Autism Self Advocacy Network. They are by and FOR Autistics.
Links to My Previous Posts on Autism
So, we’re one week the big day – MasterChef premieres on May 22..
I’ve been back from filming for a while now. While the initial trauma is long gone (I almost passed out at the TSA in LA, phased in and out of consciousness my whole trip home, and then slept for four days – something I’ve never done in my life!), there is one thing that remains.
I still have no idea how I’m going to be able to watch next week’s 2 hour premiere, which features the “auditions”. Not a sweet clue.
Let me back up a little… going into the experience, I thought I had prepared for everything. I was absolutely confident that there was nothing that this experience could throw at me, that I couldn’t handle. I can cook anything! I worked on sensory training! I knew that the “Reality” of reality TV was fake, and that there was the unspoken “game” to play with the producers.
… but there was one thing that caught me completely off guard, and really screwed with me: I made friends.
If you’re a longtime reader here, you know that I’m a bit of a misanthrope. Humans – as an overall data set – are awful, and extremely difficult to get along with and/or even just relate to. Part of that is growing up different than everyone, as someone with Aspergers. Part of that is a holdover from how random people have treated me, my whole life. Part of that is just seeing what society has become, what passes for acceptable behavior, and what behaviors are actually rewarded.
Most of it is that by and large, people are illogical, and that frustrates me to no end.
Individuals – separated from that overall data set – can be ok. Hell, some individuals are awesome. It’s not that I can’t stand persons, it’s that I can’t stand *people* – and going into this, I knew I’d be surrounded by 99 PEOPLE – in addition to all of the producers, staff, etc. That’s just not a good situation for me.
I hoped that my roommate would be tolerable, and planned to spend all of my time alone, studying. I knew what kind of people made it on to reality TV, and I knew I was not one of them. There’s a reason you don’t see a lot of Aspies and Auties on reality TV, and really… if it wasn’t for being underinsured for the tornado damage by well over $60k… there’s no way in hell I’d be doing this. Desperate times, desperate measures.
Well, then some weird things happened.
Sitting at the Minneapolis airport on the morning of my flight out to LA, I was almost a wreck. I’d just said goodbye to my husband, and was seriously questioning my judgement on doing this. I waited for my flight… and then a familiar face walked towards me. It was Liyah, someone I’d talked some smack with at the pre-show psych appointment.
I was so happy to see her (Up til that point, I had NO idea who had made it through!), I almost cried. Actually, I may have teared up, now that I think about it… it’s been a long time.
We sat together and chatted for most of the flight. On our layover, we met up with Joan – a woman I recognized from my initial audition group. The three of us sat together on the second leg of the journey, and I felt like… OK. I know two people, they’re nice. That’s all I need, I can handle this.
Shortly after arriving at the hotel, we were giving the opportunity to go shopping for snacks, drinks, etc for the hotel rooms. We piled into vans, and started meeting each other.
… there were so many super cool people in my van. I actually LIKED them. Like, a lot.
At the grocery store, two of the guys chatted me up about my “Magneto was Right” shirt, and various geekery. One of them – Damian Legion – showed me his Dalek tattoo. OMG! Genuine geeks! I wasn’t alone!
It wasn’t just geeks, though. There were people of all types there, and that van ride was probably the most fun I’ve had with strangers ever. This was a good group.
Later that night, I said and did something that still shocks me, months later. I’m still not sure that my husband believed me when I told him this, either… but I swear it happened:
I was sitting at a table with my new friends, feeling comfortable. I have NO idea where this ‘inspiration’ came from, but I stood up, said “I’m going to go mingle!”, excused myself and then DID SO. MINGLE!!
Insane. Hasn’t happened before, probably won’t happen again. Apparently I forgot to pack my “introvert”.
Over the better part of a week, we got to know each other – hanging out at the pool, hanging out in the lobby, a couple mall excursions, etc. I spent very little time studying, which surprised me. I’d heard that we would be on much stricter lockdown after the “auditions”, and wanted to make the best use of my time – I could study later.
When the show tried to provoke a “big autistic meltdown”, there were many people who helped me out, talked me down, calmed me. They went above and beyond, and they barely knew me… that will always stick out to me. These were good people, with only a few exceptions.
Then, the first day of auditions came. While I wasn’t auditioning til the second day, I can honestly say that the first day of auditions was the most traumatic day of my life. I’m not saying this lightly – I would sooner go through another tornado, than to go through that day again. I mean… no question.
All of my grand plans to remain cool and collected on camera went right out the window with the first person to be eliminated. It was someone I liked, and someone I expected was a given to go through, so yeah, I was shocked. (Don’t take this as a spoiler, the show will very likely rearrange the order of auditions when airing!)
That wasn’t the problem though – I realized right then that I had never actually been exposed to someone in the moment that they had their dreams destroyed. I’ve never seen someone that devastated. I’ve never seen THAT LOOK on someone’s face before. Months later, my hands are shaking as I type this, my heart just started racing, and I’m tearing up. In the moment that she came out that door without an apron, the look on her face… I’ll never forget it.
I may not have gotten PTSD from the tornado, but THAT moment traumatized me for life, I’m sure of it. I’m definitely symptomatic for PTSD over it, even months later. I’ve had nightmares about her coming out of that door, about her face, and the way it made me feel. (Chickie, you know I love ya… please don’t take that the wrong way!)
I honestly thought that I was going to throw up. My stomach knotted up and lurched. My CHEST hurt. I started into an adrenaline response, and was in physical pain from it… all from seeing a face. I cried.
All day, it was a stream of this devastation, peppered with the odd apron victory. For each person, they had us all line up for when the big door opened, and one one after another, we’d find out their fate, seconds after they did. I cried all day, and I’m sure the other contestants thought I was either crazy, or a big baby. Maybe I am – but I was NOT prepared for any of that. It wasn’t even just seeing my friends eliminated, it was people that I hadn’t even met yet. Every last one of them, that look in their eyes, THAT FACE… each one shook me to the core.
The part that confuses me is that I actually KNOW faces. I was diagnosed with Aspergers fairly early on, in my early teens. I made a point of studying faces, seeing it as a deficiency I had, and the “fix” seemed pretty simple – pattern recognition. Never once in my life – during studying faces or not – have I seen THAT facial expression up close, whether as a flash card, or in person. I’m sure I’ve probably seen it on TV at a distance, but damn… I never want to see it again.
I was afforded a brief respite from the carnage in the form of our required shopping trip, for those of us cooking the next day… and then I came back to the set to find that two of the people I’d grown closest to had been eliminated, and whisked away… I never even got to say goodbye.
I completely lost it.
That day ended very, very late. As we headed back to the hotel – tired, overstimulated, starving, and dehydrated – it felt very familiar to me, in an eerie and upsetting way. It felt *EXACTLY* like what I had felt like on the day of the tornado, as we headed to our temporary “home” at the end of a very long, very emotional day.
So… if I’m a total wreck at the viewing party next week, this is why. THIS is why I’m not sure how I’m going to be able to watch it. I feel sick right now, even just thinking about it.
Edited to add: I wrote this entry about two weeks ago. Shortly after, I went to see a therapist for PTSD treatment, realizing that I had not been able to handle it on my own, even after several months.
While I still find the subject of the first day of auditions to be horrible, I can at least think/talk about it without shakes and tears now. I maintain that I would find going through another tornado to be a far more pleasant experience, and I’m not prone to hyperbole.
I’m still not sure I’m ready to see the faces again, although I am – at the same time – excited to see all of my new friends on TV. I’m curious to see how things went, how the show edits everyone… and to be able to supply the words and support NOW, that escaped me at the time.
My viewing party is being held at Banana Blossom, an awesome little Asian restaurant on Lowry in Minneapolis, Wednesday May 22 at 6:45 pm – open to the public. This restaurant was smashed in the same tornado that my house was, and was closed for an entire year to rebuild. Come hungry, buy a lot of food! 🙂 Later in the evening, we will be sampling my Mango Mojito Upside Down Cake, my “signature dish” in my audition!
Training & Preparation for MasterChef
Deciding to compete on a “reality” TV show was a major decision for me. Like I’ve mentioned, it was an act of desperation, a last ditch effort to make a go of my current career path, potentially get ourselves out of tornado debt, etc. If I was going to do this, I would be doing it RIGHT.
So, from early on in the audition process, preparing myself for the show became more and more of a full time job for me – 4 months worth, leading up to the filming. By the end of the first month in … I lived, slept, ate, and breathed Master Chef.
As I’d never seen the show before, the casting producer strongly encouraged me to watch the entirety of season 3. So I did… and then I watched seasons 1 and 2, taking notes on EVERYTHING. Finally, I watched season 3 again, to gain a better understanding of the overall arc of the series, to help assess what direction(s) they could potentially be going with the season I would be competing on.
It was an interesting progression, and one that disturbed me a little. By watching the judges’ faces throughout the series, I could tell that they were lying more to/about the contestant entries as the series progressed over the 3 previous years. (I studied faces to help get by with my Aspergers years ago, and am excellent at identifying micro expressions – when I WANT to -yay me!), Also, there was definitely an increase in the forced drama – this worried me, so I braced myself for it. Always better to have an idea of what to prepare for, right?
Mentally, I prepared myself for everything right up to the possibility that they would end up housing the contestants together and air footage of the “behind the scenes” crap, “Big Brother” / “The Glass House” style, this year. I looked at it as an absolute worst case scenario, but really… I can survive anything for a finite amount of time, especially if I have time to consider/prepare for the possibility ahead of time.
After watching the previous three seasons of the show, I had a good idea of which contestants I could identify with in some way, and which would be most likely to write about their experiences. Starting with them, I poured over their blog entries, tweets, etc – from around my estimation of when they started the casting process, right through to current day.
I learned a lot about what to expect from the whole thing, from arriving at the airport, to the recurring theme that food would be scarce while filming (and I should have paid WAY more attention to that one!). From random bits of information across several seasons – and many contestants – I pieced together a bit of an image of what life would be like. I knew that – barring any major changes – I’d be set up in a hotel with a single roommate. I knew that the show liked to screw with the contestants, pulling crap like middle of the night “pack your bags NOW, we’re moving to another hotel!” drills. I knew that those who received aprons would spend a lot of time in cooking classes, though that was never really shown on the air. I learned more about what the judges (stated that they) were looking for, about strengths and weaknesses, and more.
I looked up the grocery stores that we would be going to for our daily supplies and food to cook at the auditions: Ralph’s and Whole Foods. I learned that Ralph’s had a rewards card, so I registered for it … receiving it JUST in time to leave for LA! Boy, am I ever glad I did – saved me a ton of money, and the extra cards that came with it were handy to pass out to my new friends, aiding them as well. The truck I was in saved almost $100 on the first day!
Now, I like to think I’m a pretty good cook, but I know that there is always room for improvement. Also, I realized that there were certain basics that I just never really got into for whatever reason. For example, I’m not big on eggs, so I’ve never bothered to learn how to poach them. I’m horrible at making pancakes. I’d never made risotto, or fresh pasta, and those were really common things in the show.
So, we bought a pasta maker, and I quickly taught myself not only the basics, but all sorts of different flavors and techniques. We LIVED on risotto. OMG, if I never see risotto again…
It was a lot of work – and CARBS! – but I knew there was no way I would (legitimately) get eliminated on either pasta or risotto! Beyond that, I trained to the point where I could do pretty much any type of egg from memory, possibly with my eyes closed. I became a finely tuned MACHINE in the kitchen! Muahaha!
When the show told me that I would be making my Mango Mojito Upside Down Cake as my “audition” dish, I had a little work to do there, as well. I had to tweak the sizing – 1 hour is not enough time to prepare and bake it, start to finish. So, I time trialled a few sizes, and finally settled on making 6″ cakes. Then, on the advice of a friend, I took my ingredients to a friend’s house (I’d never cooked in his kitchen, was good to get ‘in a foreign space’ experience!) and baked a batch, start to finish… wearing the outfit I had planned for my audition (more on that later!), hair done, makeup done, and with my husband harassing me with questions as I worked. I managed to get it all done and plated within the hour, and it turned out perfectly – I was ready!
Beyond actual in-kitchen training, I studied my ass off:
– I researched different cuisines, memorizing flavor profiles and base recipes for many popular ethnic dishes.
– I researched the availability of various animal proteins, how to prepare and cook them, etc. I learned stuff like “you have to cook bear well done, because of possible trichinosis”. I learned which meats should never be cooked well done, what seasonings work best with what, etc. I now know how to prepare every variety of domestic, game, and exotic animal available in the USA – including snake. If they were legally able to obtain it (by purchase or by hunting), I had a plan for how I would prepare it. I know how many regular eggs that emu and ostrich eggs are equivalent to (10-12 and 24 eggs, respectively!), and what I’d do if given one.
– All of that previous paragraph? Did it for fish and seafood, as well. I am completely blown away by the variety of fish available for sale in this country, btw. I’d never heard of HALF of what I came across!
– Watched many videos to learn about fileting different types of fish and butchering different types of meat. Thanked my lucky stars that I have the ability to watch something done once, and be able to do it. (One of my “Aspie Superpowers”!)
– Memorized cook time/temperature charts for all of the basic poultry / roast/ etc options.
– Researched and memorized all of the “Mother” sauces AND major variants of each.
– I gathered and memorized all of my base recipes for things like biscuits, fish and chip batter, doughboys, pastry cream, panna cotta, choux dough, sushi rice, pakora batter, etc.
– I spent a lot of time thinking of individual ingredients, and what I would be doing if they came up as mystery box challenges, etc. I have a LONG list of cool ideas I came up with – you can expect to see them on this blog, eventually 🙂
Business as Usual?
In addition to all of the cooking and studying, I had to prepare for my husband to take over my business while I would be away. Starting out, I thought this would be no big deal… but wow, it really ended up involved!
– I wrote and set up 3 months worth of blog entries to auto post to my site, and then set up for auto posts to Facebook and Twitter. Seriously. THREE MONTHS! Wonder why I went from sporadic blogging to being super diligent about following a schedule? Now you know!
– I had to gather the login information for EVERYTHING. My merchant account, my publisher (and how to order more stock!), bank accounts, the company I order mailing envelopes from (and write down which products I buy!). Each of my email addresses, all of my social media, the blog, the web host… every time I thought I was done, I’d think of two other things to document for him!
– Had to create a daily to do list, with references to details on some of the items. I’d never actually thought about what all I do, it seems basic habit now… but man, it’s a whole ordeal to get it together for someone else. ESPECIALLY knowing that person will not have the ability to ask questions – there would be no contact once I arrived in LA, from everything I read!
– As I was under contract with Minnesota Historical Society Press for “Sweet Corn Spectacular“, I had to step up my work on that, with now-shortened deadlines. In addition to that, I had a couple of other books slated to come out in and around the time I’d be gone.. again, lots of work to do on a much shorter schedule!
– Being in Mensa, – and a part of some really tightly knit social groups with the organization – I knew that “disappearing” would be very difficult to do. Stephanie had recently “gone on sabbatical” and shut down her social media in order to be on the Glass House, so I knew that anything I did would make everyone suspicious. How do you fool a ton of really (excessively?) smart close friends?
I weighed the options and eventually decided that a “no social media” new years resolution would be the way to go. Everyone knew I was frustrated and stressed out by all of the hatred and violence in the media, so I knew it wouldn’t be hard to believe. Hell, by the time New Year’s rolled around, I think I was ready to take a social media break even if NOT for MasterChef!
Making Myself Presentable
I knew going in to this that it was not necessarily merit based, and not all about the cooking. From everything I’d read (and really, simple logic)… this was about being marketable as a winner. As a fat, homely, blue haired curmudgeon? No small obstacle!
– I hit the gym.
– I bought Spanx for the first time in my life. OMG, torture! (Oh, and they really weren’t fun when we had only the teeniest hit-your-knees-on-the-door porta potties during filming!)
– I made a very flattering “audition” shirt. It fit well, made me feel good… and was based on the “Hunger Games” training shirt. YES. If I was going to do something this crazy, I was going to have some fun and be able to laugh at the irony / make a bit of a statement, right? 🙂
– Per their request, I made a special apron for my “audition”. I don’t wear aprons, ever… but they wanted something that showed some personality, whatever… so I made a bright turquoise PVC snakeskin print/texture apron. Awesome!
– I practiced talking and cooking on camera, with and without being asked questions. Very awkward, as someone who’s not big on having a camera aimed her way!
– I went to my friend Holly – a talented makeup artist – to get a crash course on makeup. I don’t know anything about it, I don’t usually wear the stuff. She was great, teaching me about contouring, products I’d never heard of, etc. She sent me off with a better idea of what I was doing, some samples, a diagram AND an order of operations list!
– As an “all ponytail/bun, all the time” kinda person (yes, scrunchie too!)… I decided that I should probably actually learn how to do my own hair. I cruised some braiding websites, and quickly learned how to do a few styles. I also scoured the ‘net for some inspiration hairstyle photos and compiled them into a printed book to bring with me, figuring I’d figure them out as needed.
– I had my teeth bleached. Saw a Groupon for a crazy deal on Zoom whitening… OMG sensory torture. The whole time I sat there with my face all jacked up, waves of pain shooting into my face… all I could think about was competing on the show. Eyes on the prize!
– On the subject of sensory torture, I knew that going on this “adventure” would rank right up there as one of the dumbest things I could possibly do, with regards to my sensory issues. Not wanting to have any meltdowns on TV (And not knowing at the time that the show would actively try to induce them… assholes!), I decided to “train” in a new, completely masochistic way:
… I went to the Mall of America, on Christmas eve. I can’t stand that place on the best of days, and absolutely refuse to enter it between October 1 – January 1. Going on Christmas Eve? Insane. I did it with a purpose though – I went in there knowing that it would be absolute sensory overload, to practice blocking it out, managing the stress, etc. Proud to say that I made it a few hours without losing it! Could have gone longer, too… but it all got to my husband first!
Man, the amount of shopping we had to do to get ready for this whole thing was insane – we hemorrhaged money over this, crossing our fingers the whole time that this would be a good investment, and a smart risk to take.
You see, I don’t have much of a wardrobe. I’m an author! I really do fit the stereotype of just working in my PJs every day. I don’t like wearing jeans, as they never seem to fit, so I have yoga pants. The rest of my wardrobe is made up of well loved ThinkGeek / Misc geek shirts. I had one pair of runners, and they’re pretty ratty.
New jeans. All new shirts, which had to fit the “reality show standards” – no words, no logos, no artwork, no white shirts, no black shirts (WHAAAAT!?), etc. We scoured thrift shops to come up with an affordable, attractive (read: blues, teals, turquoise) wardrobe of TV suitable shirts. New runners, as we knew I’d be on my feet a lot. Those damn dreaded Spanx. Toiletries for 3 months (That was NOT fun to figure out, btw)…
Accessories! I picked up a few sets of simple earrings and a couple of necklaces. New for me, I am not usually a jewelry person. (See “spending all day in my PJs” comment above!)
My friend Lauren, of Style in Abundance sent me some GORGEOUS custom necklaces to wear (Go check out her stuff!)
I picked up a burner phone, as I had to leave my smart phone at home so my husband could run the business.
Thinking ahead to the logistics at the hotel, I bought this laundry hamper at IKEA. DEFINITELY recommend it to anyone entering into a similar situation, for what it’s worth. Fit easily in my suitcase (the coil structure collapses down flat, and is held flat with Velcro straps!), and allowed me to keep my dirty clothes separate and relatively organized!
Ok, so waiting didn’t seem like training at the time, but after the rush of making sure I had EVERYTHING planned for… there was a lot of waiting. In hindsight, I guess it was good practice for being in LA and having to deal with people who had a tenuous grasp on logistics – at best. There was a LOT of “hurry up and wait”.. “Be in the hotel lobby by 7am!”… only to not actually be leaving till 10 am or later. That kind of mind blowingly frustrating thing.
It only got worse after getting home, when it became obvious that the logistics issue wasn’t just isolated to the people dealing with us on the ground there!
So, I did things like … watch “The Hunger Games”. I figured – death and such aside – it was probably a fairly accurate representation of what I was about to walk into…. and I was right!
Oh, and finally… I made a super cute travel/toiletry bag set for the trip. I had so much STUFF to organize, this came in handy. One bag for hair dye, bleach, gloves, etc… another for accessories, another for hair accessories, another for ALL my makeup, a smaller one for “day of” makeup in my purse, etc.
So… more on the MasterChef adventure another day!
“I know that life is for the taking, so I better wise up, and take it quick.” – Bran Van 3000
I have had some pretty wild adventures, done some crazy things in my lifetime.
– I had my own custom wedding gowns featured in a major regional wedding show at the age of 18.
– I packed up my car and moved across the country (to a province I knew NOTHING about) on a whim at the age of 18.
– I proved doctors wrong (“You’ll never walk properly again”) after a car accident wrecked me, eventually going on to figure skate again.
– I’ve been snuggled up with a Playgirl model, keeping his half naked body warm under my cloak on a cold, rainy March swimwear shoot in a broken down old barn. (On another occasion, I’ve waded barefoot into a VERY cold, partially frozen lake Ontario to fish a photographer’s reflector out during an early february photoshoot for my ready to SWIMWEAR line!)
– I picked up and moved to a foreign country and married a guy I’d only known a few months (5 before the move, 6 before the marriage!)
– I created a product with the specific intent of having it sold on ThinkGeek … and they picked it up! (Since discontinued).
– I’ve watched Klingons cut one of my cakes – a 4′ Bird of Prey – with Batleths, and I’ve made a TARDIS cake for Wil Wheaton.
– I convinced my husband that we should buy the first house that caught my eye in an ad… and then we battled massive stress and repairs after it was destroyed by a tornado just a few short months later!
– I designed and created a gorgeous Neopets inspired gown in just 4 days as a gift to someone I’d never met, on the other end of the country. This brought together almost 30 other people, who donated cash (to buy fabric) and goods to make Homecoming VERY special for one teenage Aspie.
… the list goes on. Yep, life has taken me on some pretty weird paths.
This spring, the list grew. I did the wildest, most ridiculous, LEAST “me” thing ever – I went and competed a major reality TV show.
Those of you who know me well, go ahead and pick yourselves up off the floor now.
Yes, I am one of the 100 people presenting our signature dishes to Gordon Ramsay when MasterChef Season 4 debuts on May 22. It was a completely bizarre and traumatizing experience, and I came out of it with ton of VERY diverse new friends! More about friends and trauma in coming posts.
Anyway. You’re probably wondering “WTF?!” … and I have to admit, so am I – still! – to a degree. So, let me explain.
Money has been awfully tight since the tornado. We hemorrhagged money over the repairs – we blew past our insurance coverage by over $60,000 instantly, and we’re *STILL* working to fix everything. We took out a mortgage, have a disaster loan, and are generally overextended in every direction – definitely NOT the debt load we had anticipated when we bought the house just a few months before the tornado.
When you’re that over extended, it forces you to take a good hard look at what you’re doing.
Now, my cookbooks are great – you should totally buy them! – but the cookbook market is super saturated. I’m not getting rich off them by any means. I certainly don’t have any advertising budget to help that along, so I have to rely on social media and word of mouth, for the most part – doesn’t exactly pay the bills. The sewing manuals bring in a bit more money, but again… no advertising budget, PLUS we’re talking about extremely small, niche markets – I’m not even making minimum wage, at this point. Couple all of that, with the fact that I’m completely unemployable? Ugh.
So one day I was trying to think my way out of this financial pickle, and I noticed a tweet about how that Snooki person is a TWO TIME New York Times BESTSELLING AUTHOR. Can’t find any reference to it now, but at the time… man, it broke me. I really, truly weep for humanity.
Anyway, within minutes of THAT, someone forwarded me a link to a casting announcement for MasterChef, telling me that I should try out. I’d never heard of it (I can’t stand reality TV, and don’t watch cooking shows!), but it was going to be casting here in Minneapolis. I looked at my finances, I looked at my unemployability, and I looked at that stupid tweet about stupid Snooki, and in that moment, I sighed and resigned myself to “if you can’t beat them, join them”.
I put on a brave (and somewhat social!) face, and sailed through the initial audition. In the months that followed, there were many more interviews, requirements to be filled, dozens upon dozens of contract pages to be read and signed… and SO much preparations to be made.
All the while, I looked at this as being a last ditch effort at making a go of the cookbooks. That maybe I could build enough of a name for myself – that when people see what I can do – that I’d be able to compete against the massively flooded cookbook market and earn a living at it. That if that didn’t come to pass, I’d face the facts and move on to some other line of work, rather than continue to tread water.
So, you see… this was a business decision, and a matter of “desperate times call for desperate measures”. I still think that “reality” TV is the bane of society, and I know that a lot of you guys feel the same way. I just really hope that I haven’t disappointed you by going down this path!
For what it’s worth, I conducted myself with honor the entire time. I did not have drama with anyone at all while I was out there, and told the producers from day one that I would NOT be engaging in such antics. Hell, I even had a plan – before I even arrived in LA – on how I’d deal with the inevitable “who do you think will be next to get eliminated?” drama induction questioning.
…. I’d look around for someone dressed appropriately, and single them out. When asked for clarification, I’d say they’d be next to go, as they were wearing a red shirt! LOL! I was VERY determined to not embarrass myself, the autism community, or my homeland – Canada!
In the months leading up to the show, I went from being resigned to doing this as a huge personal sacrifice (I was dreading it!) that needed to be done, to kind of looking forward to it. At some point along the wait, I actually started being excited for it, and couldn’t wait to leave for LA. I started to look at it as a chance to… how do I put this?
When I was in my teens, I took up speed skating as a way to cross train for figure and roller skating. I enjoyed it, and it was good to finally have a use for my massive quads. Anyway, I had the opportunity to represent my province at the Canada Winter Games – kind of a mini Olympics experience for youth back home. You get team uniforms, live in an “Olympic Village” type setup, and compete. Would have been awesome, but I missed it by ONE SPOT.
(To add insult to injury, I’d slipped, fell, and got passed by the figure skater that *I* had encouraged to join me in speed skating… and had to listen to her stories from the games forEVER after she got back!)
So, to me, this was going to be like having a second chance at that… I’d be flying to somewhere I’d never been, given a roomie, and be holed up in a sequestered situation with a bunch of strangers that I’d be “competing” with. I LOOOOOOVE competing. Love it!
So, I started to look at it less like “I’m selling my soul and going on ‘REALITY’ TV!” , and more like I was getting ready for a competition. It awakened that part of me that’s been dormant since I had to stop skating, and … I liked it. I really missed competing, and I prepared for and trained for going to compete on MasterChef like I was training for the actual Olympics. It became a full time job for me.
I could go off on a million tangents, at this point – SO much has happened since the day that I decided to try out. It feels like a lifetime ago…
Anyway, for the next while, there’s going to be a fairly heavy amount of MasterChef content on here, so I’m sure I’ll cover everything eventually. I may not be able to say how I – or anyone else – fared on the show, but I can share this: I’m happy to say that I finally did fulfill a minor “bucket list” item I’ve had for a long time!
As soon as I was told that I was going to LA, I automatically adopted “Drinking in LA” as my theme song for the whole adventure. I’m Canadian. You say “LA” to a Canadian of my age, there’s a good chance they’re going to get it as an earworm. You couple “LA” with some pretty heavy feelings of “WHAT THE HELL AM I DOING?!”, and… yep. Perfect theme song.
I am proud to say that I finally had the chance to drink in LA. I even designed a cocktail named for it … will blog it eventually! I may not have been 26 when it happened, but hey… it was a once in a lifetime adventure.
In the meantime, now that Fox has finally released the cast list… Click here to view my MasterChef USA Season 4 cast directory. It includes the 5 names left off the Fox release (???), plus a ton of blog, website, and social media links!
I used to really enjoy April, as the gateway to spring. Now, April is just miserable, and horrible for my blood pressure… I can’t wait for it to be over.
Have you ever logged on to Facebook, just to see a post from a “friend” that advocates for an organization that is raising money to employ the use of eugenics against YOU.. And a lot of your friends?
How about numerous friends… all of whom are actually well meaning?
I have, and so have many other Auties and Aspies. Personally, I’ve taken to just deleting the “friends” who do so, in an effort to keep that crap off my feed. NO ONE should be subjected to the hurt of seeing a “friend” advocate for the extermination of people like them.
The thing is, the root problem here is ignorance, on so many levels. When it comes to a giant “charity”, I don’t think that everyone feels the need to actually educate themselves on the actual details of the organization. If you see the name everywhere, it must be legit, right?
Well, it depends on your point of view. If you’re someone on the spectrum, odds are pretty good that you have nothing good to say about Autism Speaks – and for good reason.
You see, many of us on the Autism Spectrum are intimately familiar with Autism Speaks, what they stand for, and how difficult they’ve made our lives as a result of their supposed “help”. A few key points, as I fear I could rant about them endlessly:
1. Autism Speaks advocates for a “cure”. That right there is my first red flag. I have yet to meet a single autie or aspie who wants a cure. We don’t need a cure. This isn’t a disease, the only thing “wrong” with us is that we are different from the majority.
The fact that they use “cure” language extensively means that they don’t actually care about the emotional well being of us, they just want to see us disappear. (This is a summary of several years of watching their antics, btw). It’s one thing to provide support for those who need and want it, and/or to look to manage certain symptoms / manifestations… it’s something COMPLETELY different to declare us broken/diseased and declare that all of us – and yes, those deemed “high functioning” also count – need to be “cured” of something that has a big part in forming who we are, our personalities, our outlooks, etc.
2. Autism Speaks uses fear and misrepresentation of Autism to line their pockets. This is exploitative at BEST, and is extremely damaging. They put out commercials with ominous sounding music and dark imagery claiming that autism will wreck your family and destroy your marriage, among other things.
This line of propaganda – along with the cure language – DOES have an impact on the lives of people on the spectrum, and it’s nothing positive. This contributes to the demonization of us, to bullying in school, and more. It contributes to the culture of fear against us, leading to such WONDERFUL parenting moves as employing the use of BLEACH ENEMAS in a desperate attempt to “cure” us. (Not just bleach enemas, but also the forced ingestion of bleach!)
Oh, and you know how there is now speculation of the suspect having Aspergers whenever there is a mass shooting? Another fun result of Autism Speaks’ fear mongering.
They claim to want “awareness”, yet all they spread is ignorance.
3. Though their name is “Autism Speaks”, they have no autistic people involved with running the organization, and have actually used their lawyers to intimidate and silence Autistics that speak up against them. They don’t represent us… and I encourage you all to Google “Autism Speaks Doesn’t Speak for Me”.
Oh, and if you want a “fun” example of how out of touch they are… they host a “Walk for Autism Awareness” at the mall of America, encouraging parents to bring their Autistic children. MOA is pretty much hell on earth for many of us on the spectrum… so yeah, torture your poor Autistic kids to “raise awareness”. Awesome.
4. The only “cure” for autism is a preemptive abortion, and they know it. Yes, Autism Speaks looks to employ eugenics against us. That money being raised for “Research”? A lot of it is going towards looking for a way to test for an autism marker in utero. They want to give parents a way out, to prevent people like me from being born. This is disturbing on so many levels, to me. My own mother would likely have gotten an abortion, had she known ahead of time.
I can’t tell you how disturbing and heart wrenching it is to see posts about fundraising for Autism Speaks, coming from “friends”. While not intentional, such posts DO come wrapped up in a theme of “People like you don’t deserve to exist”, “There is something wrong with people like you”, and “I AM ACTIVELY FUNDRAISING to prevent people like you from existing”.
There is the argument that Autism Speaks actually provides some decent resources for parents. Well, that’s great. Hitler’s actions also produced some advancements in science…. but I don’t see that as much reason to justify or support HIS actions (Which have a LOT of parallels to Autism Speaks, when you think about it!).
The thing is, there ARE legit organizations out there that advocate for actual acceptance and support of people living on the spectrum. Organizations that don’t make April – or life! – hell for us. They may not have the monopoly that Autism Speaks does, but they have ethics!
I can’t tell you how happy I was to see that Think Geek’s April autism promotion is in support of an organization that is run by Autistics, for Autistics, the Autistic Self Advocacy Network. That they are promoting Autism ACCEPTANCE month, rather than “awareness” month. Really, what we need is acceptance, not Autism Speaks’ ignorant brand of making people “Aware” of us.
So, this month… please research before you support. Sometimes, support is more harmful than standing back and doing nothing.
ThinkGeek encourages you to be fashionably accepting this month!
If I’ve unfriended you on Facebook or unfollowed you on Twitter over your recent posts in support of Autism Speaks, and you’ve had a change of heart after reading this, please let me know. While I can’t be friends with anyone actively supporting the extermination of people like me, I do understand that mistakes happen!
Editing to add:
To the commenter from this morning: You’re right, I won’t be approving your comment, as I really have no obligation to allow such abuse / hate speech to be posted to my blog. I did, however, want to address a couple of your points, as I figure that kind of ignorance should be corrected.
1. Sorry to burst your bubble, but I was first diagnosed around 15 years ago, and it’s been confirmed several times. No “cop out” here! You’re welcome to find me “socially inept, insensitive, annoying, and childish”, but you’ll have to pardon me if I find the opinion of several doctors to be just SLIGHTLY more legit than that of an internet troll.
2. The fact that autism “can be paired” with other neurological and mental issues means absolutely nothing. So can – and frequently DOES – neurotypicality!
3. Regarding “If you’re able to express yourself … you’re likely not autistic.” – What a ridiculous statement! For one, I hope you’re aware of what “spectrum” means. Being high functioning does not necessarily place one OFF of the spectrum. Secondly, there are plenty of even completely non-verbal autistics that are beautifully spoken in written form. Are they similarly “not autistic enough”, in your mind? The idea that we – low OR high functioning! – are somehow so broken as to not be able to form a coherent blog entry is beyond ignorant. That ignorance is EXACTLY why I speak up.
In closing, I’d like to link to a few other blog entries on the subject. Good reads – but only a few of MANY!
Links to My Previous Posts on Autism
Just over a week ago, I had a bit of a meltdown – I reached the limit of social media stimulation that I could handle. So – after a lot of thought – I posted the following on Facebook:
“So, I’ve been considering something for the past week, and I’ve finally decided to just do it.
Social media can be an overwhelming thing: on the best of days, you have information and opinion flying at you from many directions… so much of it is either completely uninformed, ignorant, and/or … histrionic.
As a writer and publisher, I’m expected to keep up on social media. We’re given all these messages about how we have to participate, evolve, engage… and as a result, spend a LOT of time on Twitter, Facebook, etc. As someone who works at home, social media IS my workplace. Myself, my cats, and the social media landscape – that’s my office environment.
With everything going on lately – Mayan apocalypse nonsense, shooting, histrionics about gun control, fiscal cliffs… it’s just too much. Everyone shouting at each other – if this was an in-person office environment, it would be seen as completely dysfunctional and toxic. No one would get much done, and stress would be through the roof.
… and my stress IS through the roof. I can feel my lifespan shortening with every passing week of nonstop information overload. I need a break. Blame the Aspergers, blame me just being human, I don’t know – this goes way beyond overstimulation.
SO – January 1st, I am adopting the healthiest new years resolution I’ve ever tried, and I’m going to disconnect from the lot of it. I’m taking a break from Facebook and from Twitter, for at least a month. Who knows, maybe a bit more?
The idea scares me a bit (I’m a creature of routine, and will likely get twitchy at first!), but also excites me. I had a life before social media, we were all able to function beforehand, right? I used to hike! I used to read – I can’t even remember the last time I read a book, but it’s definitely in the “years” at this point. I am going to read every damn book that Robin Cook and James Patterson have put out in the time that I haven’t had time to read!
I’ve started working towards this social media break – setting up the blog to auto post to the Celebration Generation page, until such time as I am relaxed enough to brave Facebook. I’ll blog, and I’ll check emails – probably twice a day.
I think this will be good! I need my sanity more than I need to lose weight, but hey – maybe tuning out for a bit will help THAT goal, also!
Anyway, I wanted to give you guys a heads’ up. I promise I WILL be back at some point, hopefully refreshed and less cranky and jaded. Until that time, I would be more than willing to take questions through email, as we did way back in the day! 🙂
I can feel the stress lifting a bit already, just finishing up this announcement. Yay, mental vacation!”
10 days later – 10 days of decreasing my exposure to social media – and I’m not feeling nervous about this anymore. If anything, I’m kind of excited to take on this little adventure. The way that the internet has become SUCH a major part of everyday living? I mean.. going without for a while will probably be the modern day equivalent to those times we visited pioneer villages as children.
… I may even break out the Yellow Pages if I need to look something up!
Since posting this rant, I purchased a few new-to-me paperbacks, a set of pastels, and a set of sketching charcoals – I’m going to teach myself some art. They’ve been sitting there, staring at me, as I go about my business… beckoning me to drop my stressed ways, and just draw. I haven’t so much as removed the plastic from the box, looking forward to this as part of my mental vacation – it feels special now!
So, I’ve preloaded the blog with a bunch of amazing recipes to auto post, and I am checking out of social media at midnight tonight. Who knows how long I can hold out for? I hear that it takes 18 days to form a habit, so I’m looking at that as a minimum goal. Maybe if I can make it 18 days, I can learn to dial back on my exposure, and get some balance back in life, you know?
Have a great New Years Eve, and a wonderful start to the new year! I look forward to a much more relaxed version of myself returning to social media eventually!
With all of the excitement lately, and with an incredibly busy past few days… I kind of dropped the ball.
Yesterday was the official release of my most recent book, “Sewing For Skaters“… and I managed to forget to so much as MENTION it on social media, or blog it here! Whoops!
First off: No worries, dear foodies! I am currently working on several more cookbooks, and this by NO means marks an end to all of that!
When I recently released “Synchro Swimwear“, the first in my new “Spandex Simplified” line… I was a bit worried about how everything would come together, in terms of my website, current following, potential following, brand, etc. No problems yet, so… yay!
I’d got to say – I knew that “Synchro Swimwear” was going to be a huge undertaking, as SO much of it had to be re-written, everything had to be formatted, I had NO photos of any of the sewing techniques, no diagrams drawn – it was a huge job. When it was all done, I breathed a sigh of relief, knowing that my next sewing manual, “Sewing for Skaters” would be a much easier task.
You see, I’d already written the vast majority of the content… over a decade ago!
Back in 2000, I was still recovering from the car accident that had ruined my back. Skating was out, most forms of work were next to impossible, and I was being told I’d never walk properly again. (“Properly” meaning more than a few meters at a time!) I had moved back in with my grandmother to recover, and – at the ripe old age of 21 – I would need to find a way to get some more financial independence back, in spite of my injury/recovery.
So, I wrote. I took everything that I knew about sewing with spandex, and put together an extremely informative, 75 page manual – “Sewing for Skaters, Gymnasts, and Dancers … Oh My!”.
While ridiculously helpful an informative – spandex is a very niche sewing skill, but I knew how to teach ANYONE to do it! – book, it wasn’t much to look at. I’d typed it all up in word perfect, using tables to force some white space as needed. Printed out a double-sided master copy of it, scrawled some diagrams throughout, and VOILA – my masterpiece.
From there, it was photocopied at the closest office supply chain store, with a simple black text on grey cardstock cover, black plastic comb spine. Looking back, I should probably be a bit embarrassed by this first publishing effort.
The original diagrams (Excuse the horrible cellphone photo!)
But, even at $35… it sold like crazy. People loved it, recommended it to friends, and word spread quickly – even in the “childhood” of the internet shopping age. I received wonderful fan mail, requests for a follow up book – “The Skating Dress Style Book – and eventually toured to teach seminars to skating parents. I was still in a lot of pain, but it felt amazing to be helping SO many people learn skills that had been assumed to be out of their reach. The success led me to hire an artist to design more “proper” covers for the manuals – Watercolor paintings, which were then photocopied onto white card stock. I was SO proud!
The original covers (Excuse the horrible cellphone photo!)
A few years later, I burned out in sewing, and quit entirely – even taking those manuals off the market. I was so tired of sewing, of the fashion industry… I just wanted nothing at all to do with it.
As I mentioned in an earlier blog entry, I recently made the decision to overhaul and re release all of my previous manuals – those that had been published, those that had been in the process, and those I’d been intending to write.
For Sewing For Skaters, I had an interesting set of parameters and challenges to deal with. As it turned out, it wasn’t quite as “Easy” as I’d talked myself into believing!
For one, I’d be compiling both of my previous skating manuals into one. There was a bit of duplicate info between the two, some updating … it ended up being a lot of information to keep straight! Also, in compiling the two, it gave me some interesting challenges with regards to setting up a logical order for the information being presented.
An interesting challenge was the change in my syntax, then til now. I wrote it before I’d really adjusted to fitting in with people at all, and becoming comfortable with my Aspergers. It was written before I had started using contractions in my speech – I used to sound incredibly flat and robotic. Reading my earlier text, I’m amazed at how AUTISTIC I sound. I’ve had Aspergers the entire time, don’t consider myself “obviously” autistic NOW… but reading these earlier manuals? Truly bizarre experience for me.
Beyond the minor… what, “spectrum-identity crisis”?… there was also the issue of incorporating previous text (which was well loved!) into new text, in my modern-day syntax. I don’t know how much other people “hear” syntax, but it was rather jarring for me to read through transitions.
Then, there was the issue of image. While the original publication was primitive in construction, there were a lot of positives to it. Some of those diagrams were really great! The new book needed color, and it needed photos… but I also wanted it to retain a lot of the character of the originals.
Professional, color photos! (Excuse the horrible cellphone photo – irony!)
One of my very first decisions – when I first decided to overhaul the manuals – was to track down the artist that had done the original color covers to my earlier books – Jerry Minor. When I found him, I was so excited that he was still doing his water colors – AND that he agreed to do the new covers. Score! (Check out his work on DeviantART – fabulously talented, AND Geektacular!)
I decided to keep a lot of the original text, with only a bit of softening between the syntax transitions. I didn’t want to mess with a good thing!
Finally, while we decided that all of the new sewing manuals would be loaded with photography, I decided that they would retain a lot of the original sketches – sort of. To this day, I like the way they look. They’re not super professional – I am NOT an artist! – but they clearly show the steps that they are representing. I like that they’re more “rustic”, and they’re from ME. That’s important to me!
So, I fooled around with my husband’s Wacom tablet, traced a lot of the original diagrams, and cleaned them up a little. Character retained, even through the translation to digital!
The updated diagrams (Excuse the horrible cellphone photo!)
Anyway, yesterday was the official culmination of this overhaul, and I couldn’t be more proud. Jerry did a spectacular job with the cover, the content is amazing, easy to follow, and incredibly thorough… the photos and diagrams are clear and to the point, and it’s just an amazing package. Also, I’m thrilled to say that it’s not really any more expensive – those two photocopied, black/white manuals were $35 and $25 (75 and ~50 pages respectively), with most people buying both. Now, they’re available as one big, 152 page, full color, professionally bound, gorgeous work of educational art – for only $40 (Through me – $60 retail)! (Click here to order!)
I could NOT be more thrilled with how it turned out!
So, if you know any figure skaters or roller artistic skaters, be sure to let them know about this!
“Sewing for Skaters” is the second title in Marie Porter’s “Spandex Simplified” series, and is all about designing and creating spectacular and durable figure skating dresses. It combines techniques taught in two of Marie’s early manuals (“Skaters and Gynmasts and Dancers… Oh My!” & “The Skating Dress Style Book”), updated with new styles and techniques… now in beautiful full color, featuring many photos and sketches!
This book is appropriate for beginner to advanced levels of sewing ability, and is written from both a designer, and former figure skater’s point of view. It will teach everything from the basics, to tricks of the trade. “Spandex Simplified : Sewing for Skaters” will prepare the reader to design and make almost any design of practice or competition dress imaginable.
Given the cost of decent competition suits – or even practice dresses! – this manual will more than pay for itself with the savings from just one project!
The entire book is written completely in laymans’ terms and carefully explained, step by step. Only basic sewing knowledge and talent is required. Learn everything from measuring, to easily creating ornate applique designs, to embellishing the finished suit in one book!
For Part 1 of this entry, click here
Thursday morning, we were all DYING to see what happened with the gown delivery. Heidi had arranged for one of her co workers to videotape the box opening, AND it happened to be a day when Abby was off school early… so we knew we were all in for a treat.
USPS had guaranteed “before 12pm”, and a large group of us were glued to our screens, waiting for any hint that the package had arrived. Well, “Waiting” may be a bit generous – I lost count of how many times “Is it THERE YET!?” was posted to the Facebook group wall!
At one point, she posted an update that Laura’s gloves had arrived. Apparently her mail comes in waves, and we weren’t supposed to freak out at all at the lack of gown news.
As noon approached – and passed – we all got more anxious. I looked up the tracking number, and was greeted with a comment that no one had been available to sign it, and a notification had been left. UGH. I just about lost it!
At 1:18 pm, Heidi posted the following update:
STATUS UPDATE: I just called the mail room AGAIN, because they are usually here before two. I don’t know what the holdup was, but they are just NOW leaving the building. I asked them how many stops they had to make before they got to me, and when they repeated the question to my particular carrier, he started laughing and said, “Tell her I’ll come to her first”. So IT SHOULD BE IN OUR HANDS WITHIN 15 MINUTES!!!! Then we will post videos & photos!
A short while later, Heidi posted a photo of a delivery guy holding a box that looked NOTHING like the one I’d shipped. I thought she was teasing us, but it turned out to simply be a really weird angle – the gown had arrived, and we all completely lost it.
It seemed like FOREVER, but Heidi finally posted a cell phone video of the event. We’d all seen photos of Abby before this point, but this was the first video of her. She seemed like such a sweetie, and TOTALLY unprepared for all of the attention. It was sort of fun to watch the Aspie kid / neurotypical mom dynamic – Heidi is SUPER touchy and affectionate, and Abby… not so much. Poor kid! She took it like a champ, though.
Again, lots of happy tears all around – across the country, and beyond! To see the video yourself, click here.
|Personally, I was SO ecstatic to hear the words “exact fit” several times. I was so super nervous about no fitting / Heidi not having experience with measurements, this was music to my ears!
The group just erupted. A few of the comments:
WHY CAN I ONLY LIKE THIS ONCE?????? And who is cutting onion in my office? My eyes keep tearing up . . . – Heather
I give up. Why am I even still pretending that I’m working? – Laura
I can cry–I’m in my home office. :-))) – Stacey
Oh, fuck, who has the tissues?? Poor thing looks overwhelmed by the attention, but that dress is GORGEOUS!! She is going to be STUNNING! – Shana
Total snaps to Abby for the practical concerns about sweating and not wanting to mess the dress up!!! (and my sincere thanks for letting her mom put it on her so we got a preview!!!!) – Desiree
I thought Pandora would pause when I went to play this video, but it didn’t, so “What a Wonderful World” played under the whole thing. Perfect! 😀 – Angie
That’s beautiful! The whole thing – the dress, the daughter, the mother, and the thought and talent and effort behind it all. Thank you so much for sharing this! – Katrina
Wow, I’ve got shivers. 🙂 – Karen
Darned onions here, as well….. And, Abby, we love you, too! – Pamela
Angie, that’s the song they played as the background for the powerpoint photo slideshow on the day of her preschool graduation – from a school for children with autism! – Heidi
So I live very close to a large Casino. Just as I found and starting playing the video, they started doing fireworks. So I a sitting at my dining room table, watching the video, listening to fireworks going, and the crescendo was right when she slipped the dress on. Seemed appropriate. Well done, Ladies. – Lisa
Lisa, I would have bawled if that had happened when I watched! – Me
Marie, I am sitting here with mascara dripping off my chin. Don’t kid yourself. I just felt like the universe was applauding her happiness. – Lisa
Heidi, you are going to, OK are, making me cry again. I LOVE how supportive you are of Abby and the fact that she is an Aspie. It is a totally different thing, but I would have given anything to have know when I was a kid that I a) had a learning disability b) that it was OK and didn’t make me defective exactly, it just meant I was different and had to do things differently from people around me 3) that there were other high IQ LD people out there, etc. etc. Even more would have been to have support from my parents, Dad just said I was lazy and/or stupid because I couldn’t do some things well. You Rock. So does Marie, but we already know that too 🙂 – JM
… So much love!
The photos continued into the evening, including this one of Frank – Heidi’s husband – seeing the dress for the first time. I know I wasn’t alone in sighing with happiness at the image:
|Friday night, Heidi and Abby finished up their shopping for the event, keeping us all up to date on the proceedings. Sparkly turquoise heels were acquired!
Saturday, we were all dying to see photos. Comments weren’t contained to the Facebook group or its members, other people had been observing and getting excited, and were now expressing their own impatience for photos on Heidi’s wall, my wall… it was nuts!
WHERE’S THE PICS!!! lol. I can’t wait to see the princess! – Melissa
One of our group members is a photographer in Heidi’s area, and graciously donated her time and talents to do a portrait session with Abby, right before the dance. We were treated to a few photos as they happened, and throughout the evening. Here are a few of my favorites (Following block of photos are all courtesy Kelley Photography):
At the end of the evening, Heidi posted the update:
Just got home. She had a WONDERFUL time. Several girls and a few boys (!) told her they liked her dress. A group of girls asked her to dance with them, so she did. A couple of boys came over and started dancing with her at different times, but she said she danced away from them. She said that at first she sat by herself and texted her middle school friends, saying, “help, I’m in a social situation and don’t know what to do!” They told her to be herself. She did not win the homecoming title, but I don’t think it mattered a whit to her. She FELT beautiful, and everyone knew who she was!
Some fun facts:
– The black tulle underskirt was made of 35 yards of fabric.
– The gown had 500 crystals individually set on it.
– There were 24 Fairy Godmothers, total
– As a result of this, Lauren made a really great business connection for her jewelry! Karma!
– I STILL honestly have no idea what Homecoming is all about, it’s not something we did back in my hometown. Who is coming home, from where? It doesn’t sound like a school reunion thing…?
– I’m still not a fan of people in general, but this DEFINITELY warmed me up a bit. I’m still blown away at what it turned into, from such a tiny beginning. I’m amazed at how many people got on board to do something nice for a kid they’d never met, and how emotionally INVESTED everyone was. This was a truly amazing experience!
A final word from the parents…
“As parents, we suffer when our children suffer. As parents of children on the autism spectrum, we would give anything to help them be understood and accepted by their peers. What Marie did, what the Fairy Godmothers gifted us, was Abby’s recognition of her own worth. For the first time in her life, she felt beautiful, and she felt liked by her peers. This is worth more than all the diamonds in the world.
… A fairy tale dress made by a magical dressmaker made possible by fairy godmothers from across the country. A special thanks to the magical dressmaker. Not only are you a maker of incredibly beautiful dresses but also the maker of one young ladies dreams.”