One Autistic’s Guide to Thriving During Social Isolation / Social Distancing

Note: This site is a participant in the Amazon Associates Program, an affiliate advertising program designed to provide a means for the site to earn fees by linking to Amazon and affiliated sites. While I’ll only ever link to items that I, personally, wholeheartedly recommend, I do need to put that disclosure out there!

I’ve said it before, I’ll say it again: This whole pandemic situation has really separated the introverts from the extroverts, across my social media feeds. It’s actually been sort of interesting to see people that I assumed to be introverts come out as extroverts, and vice versa.

As an introvert myself, I – as well as many of my fellow autistics – am actually pretty happy to engage in social isolation. We’re experts at “You don’t have to be in the same room as someone to be social with them!”, after all.

For our part, we have everything we need, now, so I’m holed up with my husband, happily puttering around on projects. We have no social obligations, have complete control over our environment at all times, and it’s pretty chill.

Of course, it’s easy for me to say “We all need to do our part and STAY HOME”, but I do realize that such a proposition is kind of scary to people who don’t have a lifetime of experience, here. So, I put together this list of suggestions and tips on how to not survive this, but THRIVE. This is the mother of all staycations, after all!

In no particular order:

***

– “Kung Fury” exists, and you can watch it on Youtube, here. This movie is not only a must-see on its own, but it has a sequel coming out later this year! Best get ready now, right?

***

– The Metropolitan Opera is doing a nightly – and FREE – live stream of different operas! They have the first week’s worth scheduled, and plan to continue until they’re able to reopen. Each new presentation goes live at 7:30 pm (Eastern, I think?), and stays online til 3:30pm the next day. We’ve been streaming it through their app on our Amazon Firestick, but they offer a few more options, as well. See here for their announcement.

Last night, we watched “Carmen” – it was my husband’s first exposure to the opera, outside of knowing “Every single figure skater EVER ends up skating to Carmen at some point”. Fabulous!

***

– Explore a Museum! Google has teamed up with 500 museums to post collections online, and/or offer virtual tours. Click here for the listing of collections to view, or here for an article listing 12 with virtual tours.

***

– Clean your house. Sure, it’s not necessarily fun… but there’s always a lot to do, right? Think about all those lists of what you should do every 6 months, or year, or whatever. When’s the last time you flipped your mattress, cleaned light fixtures and base boards, or laundered your curtains?

***

– Organize your house! Think about all those organization projects that you haven’t had time for. Did you move in 5 years ago and never tackled unpacking the last of your boxes? Are your books shelved all willy-nilly? Is your spice collection NOT in alphabetical order? This is exciting stuff to do – and imagine how awesome it’ll be to live in a house with everything organized!

***

– On that note, tackle the projects you’ve been neglecting. I have a closet with a folding door that doesn’t close all the way, one of my cats is OBSESSED with it, and it drives my nuts. Yesterday, my husband finally got around to installing a little hook to keep it shut. Life is good! We all have lists of things we’ve been meaning to get around to FOREVER.

I’m not saying the whole time needs to be productive, but … time is a gift. Picking away at repair lists is not only a great way to kill some time, it will leave you feeling accomplished, which is a great morale booster – something we could all use right now.

***

– On THAT note… learn a new skill! Does your to do list have some kind of relatively minor task that you don’t know how to do? Head to youtube and expand your skillset!

I remember feeling so frustrated and helpless after our tornado… until the day I decided to demolish the bathroom, by myself. I watched some videos, googled a bit, and went to it. It was great fun, and I felt SOO good afterwards, it really carried me through. HERE is a post I wrote about that day.

My husband would like to add that learning to change your oil is a great way to get started, and ends up saving you a lot of money. That’s where he started learning handyman stuff, and he’s gone on to keep our cars under repair at all times (I haven’t gone to a mechanic in 14 years!), build us a kitchen, and more.

Maybe you’ve always wanted to learn to knit, or sew, or crochet, or fix a clogged drain. Do the thing!

***

– Video conferencing is a thing, and can be used for more that just chatting. Play games with a friend, anywhere in the world. Battleship, Chess, whatever. Get creative! If you have multiple people in households, try long distance video charades!

Again: You don’t need to be in the same room as someone, to be social!

***

– Start a Pandemic Diary. Whether digital or handwritten, it’s good to get your thoughts down, to look back on someday… or pass along to future generations. It’s something I wish I’d done earlier, during the tornado. I’ve started one for the pandemic. Just a few thoughts every day on what we’ve done, any major events in the news, etc. It doesn’t have to be heavy, and I’m not personally keeping track of any of the numbers… just my own personal thoughts.

And hey, if you’re one of those people who do the whole “Bullet Journal” thing, think of how extra you can leave YOUR record of this, for people in the future. None of the accounts of previous pandemics involved glitter markers and stickers, after all!



***

– Plant something! For those of us in the northern hemisphere, this is actually a great time to get seedlings started, clear away overgrowth, etc. And hey, depending on what happens with regards to food supply / shipping, etc – it could be a *really* good idea later! Personally,yesterday I planted a bunch of herbs… and will start some veggies, when I work up the desire to get into the ACTUAL dirt. (I love these little instant peat pods, you can do the gardening without getting super grimy!)


***

– Do food challenges, either with yourself, against the people in your house, or with friends online. Pick a couple ingredients and/or a piece of equipment that everyone involved has, and see what you can come up with, with just what you have in your house. I bet people could come up with wild ways to use canned beans, if looking at it more like a cooking show challenge, than quarantine drudgery! Also: Would be a fun entry in your quarantine diary!

***

– Find new ways of working out, if you’re able to and so inclined. A lot of us found ourselves without gyms this week… so make your own gym at home, get creative with it. No weights? Canned food, bottled water, etc can work. No more cardio class? Browse Youtube for all kinds of online fitness classes. No jump rope? Maybe you have some heavy enough twine or rope that would work – cut off an appropriate length, use some duct tape to create a smoother handle for a few inches on each end. Maybe this is the time you take up hiking, or explore the walking trails in your area. Just stay a few metres away from others, and you’ll be good.

***

– For my fellow figure skaters our there: Get to work on your flexibility! You could return to the ice with a killer spiral, maybe even the spread eagle you’ve always wanted. Now is the time to work on cranky muscles without worry about how it’ll screw with your session tomorrow. Pro tip: Ankle weights (Which you can get on Amazon, below!) are KEY to a great spiral – it’s not just about flexibility, it’s about strength… especially as skates are heavier than the running shoes you do off ice in!

Do some work on plyometrics, and your jumps will improve when you finally get back on the ice. Seriously, you can add a couple inches in height, with a bit of work. Let’s use this time to really BRING IT, next season!



***

– While a lot of my tips have been about catching up, you could use the time to get ahead, also. Organize your Christmas card / gift list – or design your holiday cards – for example. Take a look at your calendar and see what you’ve got coming up in the next 8-12 months or so – is there anything to tackle now? Remember, when life returns to normal, most of us will be catching up on things we couldn’t do during this time…. so a little pre-planning now will free up your time for after this period.

***

– Long distance viewing parties. Pick a movie that friends have access to, start up a thread on Facebook or whatever, and all start watching – and chatting – at the same time. The cheezier the movie, the better.

***

– Hold a photo shoot for your cats, kids, or self. Go serious – maybe get that perfect profile pic you’ve been wanting – or ridiculous… just have fun. Also, if you do take photos of your pets, be sure to share… especially if costumes are involved!

***

– If you do end up having to get out for some groceries, remember: Indian and Asian grocery stores have the BEST snacks. Trust me.

***

– On a totally self serving note, if you’ve made some recipes from this site before, consider leaving a review on that page! I’ve been working hard to convert past recipes over to a new format to help with SEO, and – with the huge disruption to income right now – a few reviews go a long way to helping me out, long term!

All converted recipes have a stars review option just over the comments section. If the recipe you want to review doesn’t have the option, let me know which recipe it is, and I’ll bump it up on the conversion line.

Please and thank you 🙂

***

This is getting a bit long, so I’ll cut it off here. Did I miss anything? What are YOU occupying your time with, these days?




One Autistic’s Guide to Thriving During Social Isolation / Social Distancing

A History Lesson, and Some Context as to why VAXXED is so Dangerous and Problematic.

If you’ve been following my social media for the past week or two, you probably know that I went to protest the premiere of VAXXED 2 in Toronto this past weekend.




… and, if you were following my social media a few years ago, you may remember that I went to a VAXXED event in Minneapolis. It was absolutely horrifying, and I ended up doxxed and harassed by those associated with the event, as well as the fans they sicced on me.

Anyway.

Between some discussions I had at the protest, and a subsequent media interview, it’s become quite apparent to me that a lot of people are missing some pretty important knowledge of history. I’ve thought long and hard about it, and I think it’s time to disseminate some education here.

Buckle up, kids. We’re going to talk about Nazis.

First, a couple of caveats:

For one, I want to state up front that I am talking about actual Nazis. This is not Godwin, this is not “people who disagree with me”, this is an important part of history that is often glossed over or completely avoided when talking about WWII and the Holocaust. Also: it is ABSOLUTELY pertinent to any discussion as to why VAXXED – and many autism orgs / fundraisers / etc are super problematic.

Secondly: I am posting this, fully aware that I’ll probably end up doxxed and harassed by those involved, once again. If you are reading this now and firing up an angry comment or email to me, or post about this… please stop, finish reading, and think about it before you do. Ask why an actual history lesson – and the very real parallels to current life – would trigger you to harass a woman in the very marginalized group being affected. Ask yourself, realistically … WHO would you have been, back in the mid-late 1930s, knowing everything that happened down the road.

Third: People have been talking about “Freedom of Speech” a lot when it comes to VAXXED. The thing is, not all speech is protected. Ironically – as we’re discussing a movie – one of the most popular examples of speech that isn’t protected involves a movie theatre. From both a public health issue perspective (Preventable diseases coming back. I don’t know about you, but I would certainly like to avoid an iron lung if possible!), AND a historical perspective – as I’m about to get into – VAXXED is morally and functionally no different than falsely yelling “fire” in a crowded theatre.

Fourth: Just… all the content warnings on this one. Nazis, abuse, eugenics, filicide.

Before I take you WAY back in history, I want to go just a few years back – to that VAXXED event in Minneapolis. It was at a public park near my house, and – though it was far from my first exposure to anti-vaxxers – it was my first exposure to that particular production and … fandom. My husband and I went, to see what it was about.

There was a large tour bus there, and they were calling it something like a “rolling monument to those lost to autism”. I forget the exact wording, but that was the gist of it. Parents were invited to write the names of their kids who had been “vaccine injured” right on the outside of the bus. There were the usual propaganda pieces and homemade signage about how Big Pharma is evil, and plenty of dehumanization of autistic people. There was one kid in a wheelchair, almost completely obscured by all of the homemade, disgusting signage that had been affixed to their wheelchair – their care givers had seen fit to basically turn them into a rolling protest display, the child was absolutely secondary to the “message” they wanted out.

… but nothing could have prepared me for what was to come.

They had fold out rental chairs laid out, as you would for an outdoor wedding or similar event. I assumed it was just to hear the producers speak about the movie, or whatnot. NOPE.

It was a memorial service – for kids “lost to autism” … eulogies and everything.

Now, not only is that concept utterly repugnant, it managed to get even worse – the children being eulogized were in attendance, watching their own memorial. But hey, they were given goodie bags to entertain them during their own memorials, so that was considerate … or something.

Think about that for a minute. Think about having a parent – or parents – that are SO put off by your neurology, that they would not only attend an event and support a movie propagandizing the idea that autism is a boogeyman worthy of bringing back all kinds of preventable diseases… but that those parents would actually eulogize you – in front of your face AND a crowd of strangers – as if you didn’t even exist. As if you were literally dead to them.

I haven’t even been able to recount the incident to anyone without choking up. It was absolutely horrifying, I’ve been through the aftermath of having my house – and neighborhood – destroyed by a tornado. Between the city and the vultures that followed the storm, I thought I’d seen the worse of humanity.

I’ve been to LA, through reality tv. The producers, and what they did to elicit dramatic enough reactions for their bloodthirsty audience? I definitely thought I’d seen the worst of humanity there. I’ve written about that whole ordeal extensively.

… But watching these people eulogizing living children, with those very children in attendance? That shook me in a way nothing before that day ever had. It chills me right to the bone even today, just thinking about it.

The thing is, this movie – and that event – aren’t lone issues, and they didn’t happen in a vacuum. They’re both part of what has been a long, well funded, and drawn out campaign of dehumanization of autistic people. As an autistic self advocate, I see the manifestation – and results – of this dehumanization on a near daily basis. Some examples:

– The use of autism as a scare tactic. This is usually to raise money / earn profits, such as with VAXXED and Autism Speaks.

– The murders of autistic children, and they way those murders are covered by the media, treated by the “justice” system, and commented on by the masses. The next time you see coverage of an autistic child murdered in the media, take note of the tone. Take note of the comments section. See how sympathetic both are to the murderer, and see how they talk about the murder victim.

Spoiler: Most of the time, the comments section is riddled with garbage like “Oh, that poor mom, she must have been under SO much stress” and “That kid must have been a MONSTER to push her to do that!”.

Yes, when talking about a parent killing their child… we autistics usually have to brace for such things. We read about the loss of our own, knowing that THAT is what we have to look forward to in the comments and general framing. That our lives mean so little – that we are seen as so unworthy of life – that we will be expected to watch our young – even 4-5 year olds – blamed for their own murders.

On the subject of VAXXED, specifically: Polly Tommey -VAXXED’s producer – has spoken publicly in support of those who murder autistic children, going so far as to say she will never judge those who do so HERE is a link to that video.

Fun fact: The murder of autistics – and other disabled people – by their care givers is SUCH a common thing, that every year on March 1, we observe Disability Day of Mourning. Yes, there is a specific occasion to mark the many, many such murders.

– Any time there’s a mass shooting, the media speculates that the shooter may be autistic. I believe that’s been the case in ONE of the incidents, and as such is definitely not a common denominator. (Of course, we can’t talk about the actual common denominators in those situations. Best just go with an easy boogieman!)

– This one falls under the earlier mention of child murder, but really deserves its own mention. Autism Speaks – the largest and most powerful autism org in the world – put out a video a few years ago. In it, a woman was saying horrible things about her autistic daughter, right in front of her. At one point, she openly discussed how she considered driving off a bridge with that kid – committing a murder-suicide – but that the only thing that stopped her was thinking about her other, allistic kid. HERE is the video for that. Note that she’s not at all disturbed by what she’s saying – you can tell she is speaking about this because she knows she will find support for those feelings.

Of course, that’s on top of Autism Speaks’ other disgusting videos, such as “I am Autism”, which used dark imagery and ominous music, talking about autism like it’s a sentient monster out to wreck lives and marriages. HERE is that link.

– One of the last things I did while still living in Minnesota was to draw public attention to a measure that one senator was trying to bring into law. It was for the mandatory registry of autistic people, hidden in a public safety bill (along with a bunch of anti-vax nonsense). It was horrifying as a possibility then, and it was even more horrifying to learn that several states already had such registries. In at least one case (ND? NJ? I forget), the law explicitly stated that medical professionals who failed to report autistics were at risk of losing their licenses over it.

Now, no one with any grasp of history at all is going to see that as a good, well-intentioned thing. It’s actually the reason I’ve been recommending that Americans avoid getting diagnosed – such registries could harm them greatly in the future – schooling, housing, child custody fights… or worse.

I could rant for days about the myriad ways that we are constantly subjected to dehumanization, but that last point seems like a good place to bring it back to Nazis:

“Lebensunwertes Leben”.

It means “Life unworthy of life”. While people seem to think that the holocaust just started out of nowhere, and POOF there were gas chambers… this one phrase is foundational to the start of it all.

Back in 1920, two professors in Germany published a book with the term in the title, which translated to “Allowing the Destruction of Life Unworthy of Life”. It was about how mentally ill, autistic, intellectually disabled, and etc people were not only unworthy of living, but that they – we – were burdens to society, and that it was in society’s best interest to get rid of them.

Chillingly, it used some of the very same terminology that is common for warrior parents to describe their children – not only “burden”, but “empty shell (of a child)”, etc.

Hitler took the idea and ran with it. A campaign was started, supporting the idea that the disabled were burdens to society, etc. You can still find propaganda posters for this online (I can’t bring myself to share them here)

First, hundreds of thousands of people were forcibly sterilized – mentally ill, autistic, or physically disabled people, for the most part.

Quick note: The fact that forced and coerced sterilization of “undesirables” wasn’t limited to Germany, but was a legal and respected practice in other countries – including Canada and the USA – seems to not be common knowledge. Disabled people have been sterilized on this continent against their will up until the 90s at least. In Canada, First Nations women have been coerced into sterilization as a condition of seeing their babies as recently as 3 years ago. We’re by NO means innocent when it comes to such things… but hopefully we can learn from the past.

After the forced sterilization, the Nazis moved on and expanded the scope of their eugenics. What would later become known as “Aktion T4″ began when two parents wrote to Hitler and asked him to allow the “mercy killing” of their child. They referred to that *5 month old child* much in the same way that many refer to autistic kids – as a “monster”. The child’s name was Gerhard Kretschmar, and he was the first disabled person euthanized by the Nazi regime.

From there, Aktion T4 snowballed.

Parents – having been sufficiently convinced that their disabled children were burdens, monsters, and “unworthy of life” would give up their kids willingly, to be killed.

Then, the murders moved on to become completely involuntary, with the disabled being murdered without the request/permission of their families. Asylums became death sentences, several euthanasia centers opened. The Nazis experimented with mass murder, honing the ideas and techniques that would eventually be used in the Holocaust death camps, including the implementation of gas chambers.

Eventually – through more dehumanization campaigns – Lebensunwertes Leben was extended to include more and more groups: those Hitler saw as “racially impure”, following the “wrong” religion, and/or loving the “wrong” people.

Parallel to everything that was going on with the disabled people and euthanasia asylums, Hitler was also working on dehumanizing Jews and other groups. A few years after Aktion T4 got going, the death camps started up.

You see, the concentration and death camps didn’t start out of nowhere. They couldn’t – people would likely have fought back. Hitler was HUGE on marketing and propaganda, and knew that the campaigns of dehumanization were necessary to make the mass killing of people more acceptable – even desirable – to the masses. The holocaust happened as the conclusion to a long, drawn out path of propaganda, manipulation, and dehumanization.

Over the years, he managed to convince people that there were humans who were unworthy of living, and that killing those people would benefit society. Each step was incremental, training the masses to accept atrocities on an ever-increasing level. The thing is, once people are convinced that *any* group is disposable, they’re going to be much more susceptible to the idea that other groups are also disposable. If you are capable of seeing groups of fellow humans as less than human, and unworthy of life… that kind of thing isn’t easily contained. Once “this person is different from me, and unworthy of life” becomes something that people agree with, where do they draw the line, exactly? It’s like a virus.

Anyway.

This history lesson is important to put things in context: We’re not angry because they’re “saying mean things about us”. We’re terrified because we’ve seen this all before. We KNOW where this goes. The language may have changed, but the terminology hasn’t.

… and that’s something everyone should heed. In this day and age, we’re seeing dehumanization campaigns taking place all around us. We have a world leader – of one of the WWII Allied countries, no less – referring to actual, arm band wearing Nazis as “very fine people”. We’re seeing brown people in cages – treated worse than dogs – with many saying that they deserve it. There is an acute lack of empathy in the world these days, and – to a patterns person with a good grasp of history – it’s beyond concerning.

So when you see us, other disabled people, or any ethnicity being dehumanized, pay attention to what’s happening. Know that this has all happened before. In the 30s, it didn’t stop with the hundreds of thousands of disabled people who were murdered en masse.

As we know, the Nazis went on to kill millions of others – Jews, Roma, GLBT+, Non-Christians, and more.

… and, honestly, the idea that these current dehumanization campaigns are going to stop with the very group being targeted in each campaign? That’s completely lacking in any acknowledgment of history, and in human tendencies. I’ll say it again: Once you can be convinced that one group is less than human…

Now, do I think that every parent supporting this film is a dyed in the wool, goose stepping Nazi? No, of course not – no more so than the parents caught up in Aktion T4. I actually have some degree empathy for them, and see them – many of them – as victims of VAXXED, as well.

The producers of that movie, much like Autism Speaks, use fear and dehumanization as powerful, predatory marketing tools. They prey on fragile people who are shaken by a diagnosis that they have been conditioned – by those same dehumanization campaigns – to see as the worst possible thing for their children. If people didn’t hate autistics and weren’t afraid of autism, Autism Speaks would not have the power it does, and VAXXED would not be making the money it does. Fear is an INCREDIBLE motivator… and it’s often used to manipulate people to further horrible agendas – as history clearly shows.

SO.

When you see autism used as this boogeyman, when you see people say “better dead than autistic”, when groups like VAXXED and Autism Speaks frame our lives as being unworthy of life, and us as being nothing but burdens… I just want you to remember that this has all been done before.

While none of us has the power to go back in time and stop things from having happened, we DO have the opportunity to learn from that past – IF we know about it – and use that knowledge to prevent recurrence.

Now that I think about it… this post is a bit of an inoculation of sorts. And, much like with actual vaccines… one that’s only going to work if mass amounts of people make use of it.



Symbols Matter, Words Matter – Autism Acceptance Month 2017

Well, it’s just about April … so I guess it’s time for my yearly rant about it. I’ve actually got a few mini rants this time around, all basically connected.

The other day, a sponsored post came across my Facebook feed. As an intentionally vague description, it used stolen artwork to associate the puzzle piece “Autism symbol” with a popular piece of pop culture, for commercial gain – not even linked to ANY non-profit. It was gross and appropriative on many levels… and then I read the comments.

… Where to even start with this?

First of all, props to all of the Autistic people in the thread who tried to speak up against it, while being wholly drowned out by non-Autistic people. It can be hard to speak up for ourselves, in the face of being outnumbered by many. I will never understand why some NT people have such a need to shout down Autistic people speaking up on Autistic issues.

A few issues to discuss here, as a result:

1. If you are not Autistic, you do not get to police how Autistic people address themselves.

This is a HUGE issue when it comes to identity-first vs person-first language. Autistic people tend to prefer identity first language – “I am Autistic”, “They are Autistic”, etc – VS person-first language – “She has Autism”, “He is a person with Autism”, etc.

Identity-first language acknowledges that this is who we ARE. We’re not inflicted with some disease, that we don’t need a “cure”, etc. Person-first language distances the autism from the person, and is associated with the view that it’s a disease. You have a cold, you have cancer, you don’t “have” autism. Autism is our Operating System, it’s tied up in to our personalities, our senses, the way we think, the way we experience life. It’s not some *thing* you can just take away.

I get so tired of seeing neurotypical people “correcting” Autistics on their choice of language. “You’re not ‘autistic’, you’re a person with autism!” is never an acceptable thing to say to anyone, period. That goes double when THAT is the response to an Autistic person explaining why something that NT people are doing is problematic.

Hell, even if you are Autistic, you don’t get to police the language that Autistic people use for refer to themselves. Some – not many, but some – Autistic people prefer person-first language. Many don’t. Let people address themselves the way they see fit, and have some respect for their choices.

2. If you are not Autistic, you are not Autistic.

This is an issue both on a smaller, individual level, and on a societal level. So often, we will see NT people in Autistic spaces, speaking over Autistic people, because they are related to an Autistic person. Relation does not equal authority, and it most certainly does not grant some sort of divine permission to speak OVER Autistic people.

On a societal level, this is a problem when it comes to issues of representation. So often, parents of Autistic people are looked to as “consultants” in matters of Autism (note: matters of Autism, specifically. NOT matters of being a parent to an Autistic child).

Under no circumstances is a neurotypical parent of an Autistic child an expert on what it is to be Autistic, nor should they be the sole voice when it comes to things like consulting for the creation of an Autistic character in the media. With so many actual Autistic people out there who are more than willing to consult on such things, there is really no reason for an NT parent to be consulted at all. There are, after all, Autistic parents of Autistic children out there!

Right now, this is the issue we’re seeing with Sesame Street’s new Autistic character. While they apparently did consult with Autistic people, they also consulted with Autism Speaks and NT parents “for balance”. This is probably a big part of the reason that all of their marketing uses person-first language, much to the disgust of basically every Autistic person who has said anything about the whole thing.

When you are specifically talking about women’s lives, you do NOT need to consult men “for balance”. When you are talking about black lives, specifically, you do not – AND SHOULD NOT – need to consult white people about it, “for balance”.

When you reach outside the actual community for such input, you are taking agency away from those actually impacted by the portrayal being discussed. There are far too many Autistics that are willing and able to educate and/or fight for proper representation, to keep them silenced in favour of NT people.

Autism Speaks – an organization almost universally despised by those it purports to represent – tends not to have any Autistics actually involved with the organization… go figure.

Autistic Self Advocacy Network, on the other hand, is vocal about “Nothing about us, without us”.

3. Let’s talk about the puzzle piece. Again.

This is a subject I’ve ranted about before, but let me try to condense this down into a shorter form.

The puzzle piece was around before Autism Speaks, though it is HIGHLY associated with them. The idea that we are a puzzle to be solved is dehumanizing and offensive to a lot of us.

The accompanying “Until every piece fits” may sound pleasant enough to the average neurotypical person, but you have to remember – your experience is not ours. You may hear that and think “yes! Autistic people should fit in!”. We hear it, and our thoughts are usually elsewhere. A few examples:

– ABA “therapy” (Which has left many Autistics with PTSD), other compliance therapy (Which could/should be considered torture, in many cases) and many other ways that many Autistics are forced to “fit”.

– The knowledge that the organization most associated with that phrase/image is also one who is big on researching in-utero markers for Autism. Yes, they want to employ eugenics against us. Much like words matter, context matters. Knowing what history knows, that phrase would sound an awful lot less warm and fuzzy if you heard Hitler saying it, wouldn’t it?

– There’s the issue that the puzzle piece – usually done up in primary colours – is infantilizing. These days, people are more likely to be diagnosed in childhood, but it’s not a childhood thing. There’s a lot of erasure of adult Autistics in the community. When it comes to “awareness”, support, etc, many Autistics feel that we are forgotten once we age out of childhood. When it comes to any online discussion involving Autistics, adult Autistics are frequently discounted or ignored entirely. We don’t become Neurotypical once we hit age 18, you know! To have such a “childish” symbol associated with us is a reminder of that whole issue.

– The very fact that we shouldn’t NEED to fit. Society benefits from the Autistic mind in so many ways – where do you think we would be right now, technologically speaking, without Autistics? You would not even be on the internet right now – it would not exist – and able to read this rant, if not for the many, many people on the spectrum who made the internet happen. It’s not logical to benefit from our brain differences, while simultaneously carrying on about how we should be just like you. Diversity is important, on so many levels. Even beyond just representation… but I’ll spare you the tangent about evolutionary biology. For now 🙂

I’ve said it before, I’ll say it again. We are UNIX minds in a Windows world… and the analogy works on many levels.

ANYWAY.

While the puzzle piece and phrase may sound positive to well-intentioned NT people, they can have MUCH darker connotations to those of us on the spectrum.

All of this, and I still see NT people shouting down Autistic people who try to explain how problematic the symbol is. We shouldn’t have to look past the dark, creepy overtones to the symbol and phrase, just because they make neurotypical people feel good. That’s not how this works.

Awareness vs Acceptance

It’s 2017. We’ve been around for a very long time, and we’ve even been known for a long time. It’s time to move on from “awareness” in April.

I’ve noticed a very clear divide in the hashtags used by Autistic people, and by non-Autistic people in April. We tend to use #AutismAcceptance”, while those not on the spectrum tend to use #AutismAwareness. Words do matter, whether it’s this set of two options, or the earlier discussed identifying language.

This April, please reconsider your words. Please reconsider the use of the puzzle piece. Please consider NOT “Lighting it up Blue” – an Autism Speaks initiative – and consider one of the alternatives, being promoted by actual Autistic people to combat the “Light it up Blue”.

A few hashtags to follow on Twitter, or to use to search for further reading:

#ToneItDownTaupe
#REDInstead
#DontLIUB
#BoycottAutismSpeaks

Just now, I see there’s a new movement.. To use #AutismAppreciation. I like it!

Now, if you’ll pardon me, I think it’s about time for my yearly viewing of X-Men: The Last Stand.

Marie

PS Here are some of my previous posts on Autism.

Explaining Autism: Interoception, and Something Other Than Pain

Autism Awareness Day – A Few Thoughts from My Spot on the Spectrum

Autism Speaks Does Not Speak for Me

Interacting with Autistic Children: A Guide for Charity Appearances

Aspergers: You Can’t Cure “Awesome”

Interacting with Autistic Children – A Guide for Charity Appearances

If you follow me on social media, you may know that I recently joined The Royal Sisterhood, a member of Costumers for a Cause.

CFAC is a local nonprofit which brings costumers together to volunteer their talents for local charities, to aid and enrich their fundraisers and other events. Dressed as princesses, superheroes, and more, we do appearances at events such as charity walks, Children’s hospital TV programming, and more.

Prior to joining The Royal Sisterhood, I was involved with another division of Costumers for a Cause, doing appearances as Superheroes/ villains, along with my husband. (I went as Beast, he would usually go as Magneto or Loki, all from the Marvel Cinematic Universe.)

At a TRS meeting yesterday, my friend Sara did a great presentation on gender inclusiveness while doing charity appearances. With an Autism Walk coming up, I asked if the group had ever discussed interacting with Autistic children. I have seen some pretty bizarre things with regards to Neurotypicals interacting with Autistics, after all.

After sharing a few thoughts on the matter, I was asked to write up a bit of a guide. I went home, brainstormed with my husband, and here we are! While this was written specifically for a group of Princesses, we thought that it was good advice for those doing charity appearances in general, so decided to post it here.

All dressed up as “The Fairy Godmother”,
prior to a charity appearance.

Interacting with an Autistic Child

1. Don’t force eye contact.

Eye contact can feel very threatening/intimidating to some, and far too intimate to others. If it’s obvious they don’t want to make eye contact, talk to their shoulder or their chin. Just because they’re not looking at you, doesn’t mean they’re not looking at you… if that makes sense. Don’t take it personally if they don’t want to look you in the face.

2. Do not touch – even a fist bump or high five – without asking first.

Don’t take it personally if they don’t want to touch you, or shy away from you physically.

3. Talk to the autistic child first, not their parent.

For example, ask the child if they want a hug, not the adult if it’s OK. If it turns out that the child needs the adult to communicate for them, the adult will step in. Asking the adult first is a sore point in the community.

4. Be mindful of sensory issues.

Avoid or go very light on perfume, etc when attending an Autistic event. Be mindful of the fact that loud voices (loud to us, not to you!) can be very startling.

Of particular note for princess events: The high, very girly princess voice and accompanying laugh can be difficult/painful, especially in groups. If you are in a group of two or more princesses, try to keep laughter subdued.

5. Know your audience.

Autistics are very, VERY literal. There’s a fine line between staying in character, and offending the children. Many of us have no ability to suspend disbelief, and some of the things said to enhance “character” can come off as lying, or as mocking the Autistic child.

For example, if you say “I just came from Arendelle…”, an Autistic child is likely to process it something like: “Arendelle doesn’t exist. Is she making fun of me? Does she think I’m stupid? What am I supposed to say to that?”.

It can be very awkward and uncomfortable. If at all possible, avoid making definitive statements about the fictional world you’re portraying (I know, this is super counter-intuitive, for showing up in character). For this reason, various figures of speech can also be confusing and make things awkward.

6. Speak very clearly. Enunciate!

Many Autistics also have sensory processing disorders, which can be exacerbated by busy environments like the charity walk. When you hear EVERYTHING going on around you, it can be very hard to pick out a certain person talking, even if right in front of you.

Please don’t be offended if you’re asked to repeat something, or if you are misunderstood. Also know that many rely on reading lips, even if they don’t have a hearing problem. Try to face in their general direction when talking to them, even if eye contact is an issue.

7. Give plenty of time for a response.

Autistic children can take longer to reply than neurotypical children. If you’re sure they heard you, just have a bit of patience in waiting for a reply. They’re processing! Also, know that long pauses may feel really awkward to you, but aren’t necessarily to Autistics. Autistics can enjoy your quiet presence, and don’t necessarily need nonstop conversation. Social cues are not our strong point!

8. Ask about hobbies, BUT…

… be prepared to have your ear talked off. If you get an Autistic child talking about an area of special interest, they can go on and on. It can be hard for them to tell when the other party is not interested, or the conversation should move on. Be ready to be very, very patient!

On that point, know that when the conversation has ended, be clear that you are ending it. Don’t hint around that you have to move on, just be clear and honest that you need to meet others, etc. Again, social cues!

9. Do not take anything personally.

I’ve touched on this with a couple of other points, but it should be expanded on. For one thing, Autistics can be very frank with you. There’s not usually a lot of sugar coating, more just saying what’s on the mind. It can come off rude, but is usually not ever INTENDED to be rude. These can fall into observations or questions about physical appearance, etc. Try to roll with things, even if something hurts a bit.

10. Watch your wording.

Please avoid the use of “high functioning” or “low functioning” to describe an Autistic person. Don’t compare an Autistic to a non Autistic, or use phrases like “For an Autistic…” (“You’re so friendly/empathetic/well spoken for an Autistic”, for example). Though it likely won’t come up, it needs to be said: Don’t use “cure” language.

Additionally, know that – much like gender pronouns – How you refer to an Autistic is important. Many/most Autistic adults prefer identity-first language, ie: Autistic person, Autistic child, etc… while many non-Autistic people seem to think that person-first language is most appropriate: “Person with Autism”, “Person who has Autism”. Many of us see “with” or “who has” to be offensive, as it usually accompanies the idea of us being “inflicted” with something, that it’s something separate from us, and/or is a temporary/ “curable” thing. Autism is our Operating System, it’s who we are.

If an Autistic person tells you what their preference is – identity-first or person-first – please respect it. Also: Please don’t ever say “suffers from Autism”.

11. Tone matters.

You don’t necessarily need to mimic how the parent talks to the Autistic child. Some parents of Autistics are… less than ideal in how they treat their kids, and can talk to them like they’re babies and/or idiots. Aside from issues mentioned above (eye contact, enunciation, literal speech), you shouldn’t feel the need to talk any differently to an Autistic child, than you would a neurotypical child. As an example, nonverbal children are often looked at as stupid or lesser-than, and are frequently talked down to. The fact that they don’t speak *doesn’t* mean they don’t understand, or aren’t intelligent. Some of the most intelligent people I’ve ever known are non-verbal.

12. Know that every Autistic is different.

Some of these tips won’t apply to everyone. For some, every single one will. You will likely meet Autistic children who “pass” for neurotypical.

*****

As a bit of an aside – this isn’t so much about dealing with Autistic children, as it is a bit of information about the Autism community, culture, etc…

April is coming up, and with it… “Autism Awareness Month”. Every Autistic adult I know dreads this month, as the promotion and observance of it tends to be hugely offensive to Autistic people. I’ve written about it Here, Here, and Here. I’d encourage anyone planning to do Autism charity appearances to read through those posts.

The TL;DR:

1. Autism Speaks is a horrible organization, on so many levels. Most Autistic adults and many parents of Autistics are horrified by their campaigns and treatment of Autistics. Please consider NOT supporting A$, and look to alternative organizations. I tend to recommend Autistic Self Advocacy Network, as it is “Nothing about us, without us”

2. As an extension of #1, the puzzle piece and “Light it up blue” are very much Autism Speaks symbols, and as such are pretty offensive to a many Autistics. For more information/perspective, I recommend Goggling such things as “Don’t light it up blue”, and “Autism Speaks doesn’t speak for me”.

3. The #ActuallyAutistic tag on social media – particularly Twitter – is a good read if you’d like to hear what Autistic people have to say.

A few members of The Royal Sisterhood

Ravings of a Canadian Expat: Christmas Oranges

I was going to start this entry out with something like “This time of year, the topics of discussion in groups of Canadians living away tends to turn to food…”… but let’s be real, at least 80% of what we talk about in Canadian groups is food.

Foods we miss, foods we’re now cooking because we miss the source material, how COMPLETELY inferior American chocolate is, griping about how corn syrup is in everything here and makes stuff – soda, certain candies, etc – taste weird, etc. I don’t remember us being particularly food obsessed when I still lived at home, but man… take a Canadian out of Canada, and food is the great bonding experience.

Recently, I noticed that “Christmas Oranges” don’t really seem to be a THING in Minneapolis. Like, you can buy Cuties or Halos, but there doesn’t seem to be a culture of … well, them being particularly “holiday”.

When I was a kid, we’d get one in the toe of our Christmas stocking, and it usually ended up being my favourite part. I LOVED them!

As I grew a bit older, holiday season meant buying crates of Mandarin oranges. They were the same oranges I’d have as a kid – sold in boxes, imported from either China or Japan, and individually wrapped in green paper. There was always at least one completely moldy one in the bottom, but the rest were *gold*.

I would buy several 5lb cases at a time. At least one would end up consumed within a day or two – I’d crash on the couch with a book, and snarf ungodly amounts of oranges. I’d buy more than one case, as it was usually insanely cold (I’m from Winnipeg), and I liked to have enough to last me a week or so.

… December is the month where I am least likely to come down with scurvy… By a longshot! In addition to snarfing oranges by the case, I also enjoy to make things from them, such as:

Candied Orange Peels

Cuties Mead

Cranberry-Cuties “Christmas” Wine

Cuties Marmalade

I even juiced and zested a bunch of them to make a Cuties mousse last New Years.. Oh, it was amazing.

Anyway, I digress.

This past week, I decided that I NEED THOSE ORANGES. Cuties and Halos just don’t cut it, I wanted a bit of *home*.

My first stop was a group for local food bloggers. I explained what I was looking for, and a few people weighed in with suggestions.

I should mention that part of the problem with looking for oranges like I knew back home, is that when it comes to this sort of thing, oranges suffer from the same sort of thing that Sweet potatoes / yams do. Different products are sold as the same thing, the terms are used interchangeably, and people have wildly different ideas of what is meant when you say “yam” – and, in this case, “Mandarin orange”.

One blogger commented to say that it sounded like I was describing Satsuma oranges, and that she knew they sell them at a local coop. She then mentioned that they’re more abundant in January (not the case, back home!) – so I had to make sure that she wasn’t thinking SUMO oranges (another addiction of mine). She wasn’t, so I called The Wedge coop, and grilled their produce guy.

HE agreed that I was talking about Satsumas, but then referred to them as being “more tart”. What a let down – I never would have described Christmas oranges as being tart!

I posted a quick note about my mission to a couple expat groups, and asked for info on what they remember of the oranges back home.

I got in my truck and headed over there anyway, because when you need a mess of oranges, you NEED a mess of oranges. I was surprised to see that they had several types of oranges that looked good… so I bought a few of each. I bought a whole bag of Satsumas – I know myself, and if they were even close… a bag wouldn’t be enough!

As all of this was going down, the threads were blowing up – Us Canadians are VERY passionate about our Christmas oranges, as it turns out!

As it also turns out, the whole “oranges going by multiple names” thing got further complicated by regional differences in what constitutes a “Christmas Orange”.

People from everywhere except Atlantic Canada agreed – sold in boxes, with almost everyone specifically referencing the green tissue paper. MOST people agreed that they were imported from China and Japan, though a few pockets of Canadians apparently got theirs from Morocco! I’m 90% sure I’ve never seen an orange from Morocco, so I found this fascinating. We all knew them as “mandarins”.

On the East Coast, “Christmas Oranges” are sold in smaller, wooden crates, usually with a red plastic mesh holding them in. There is no green tissue paper, and they are known as “Clementines” – not Mandarins. From my time in Newfoundland, I was familiar with them. They were definitely different from what I knew back home: A bit harder to peel, not as juicy, smaller, and rounder. Still tasty, though!

Anyway, back to the mission.

I noticed that all of the oranges at The Wedge were from either California or Florida, and I remembered that basically all of the oranges I’d seen anywhere in Minneapolis tended to be the same. I guess there isn’t a big market for imported oranges here?

I decided to follow up on another suggestion, and headed to United Noodle – a large Asian grocery store. They would for SURE have Japanese or Chinese oranges, right?

Nope. Neither did Sun Foods, another large Asian grocery.

What they did both carry, however, were Halos. Halos are fine – and they’re actually pretty close to the Atlantic Canadian idea of Christmas oranges, packaging aside – but I really wanted my Mandarins!

So, I ended up with 6 different types of oranges (as well as “Limequats”, which had absolutely nothing to do with anything, but fascinated me nonetheless!), and wanted to do a comparison. Aside from the Halos and the last “Mandarins”, all of the oranges – and Limequats – were purchased at Wedge Coop.

Of course – if it hasn’t been obvious from this blog post so far – take my findings with a grain of salt. Due to the nature of naming conventions, there’s a good chance you could buy something that is called the same as one of these, and have it be something completely different. For that reason, I am including as much identifying information as possible!


Table below is pictured in order, left to right

Photo Sold As Details
Kishu Mandarin Tiny – about 1.5-2″ in diameter! Very easy to peel, loose skin, very little pith – which rubs off easily. Good balance of sweet and tart, leaning slightly towards the tart. Fairly juicy, seedless. Expensive, but fun. (They were obviously not Christmas oranges, but I couldn’t resist!)
Halos Halo is a brand name, not an actual variety. They’re very similar to Cuties, which we tend to prefer but haven’t seen in a while. Like Cuties, the variety of orange depends on the time of year. According to the Halo’s site (here), these were Clementines. Makes sense, given how similar they are to the Atlantic Canadian “Christmas Orange” – also sold as Clementines. These were not as easy to peel as I was looking for – skin comes off in small chunks. Also slightly more tart, and had no seeds. Readily available – it was all they carried in the Asian markets! Clementines also tend to be more spherical than what I was looking for.
Sunburst Tangerine This Florida orange was very smooth and shiny – a stark contrast to the rough, dimply skin of most of the other varieties. It was VERY difficult to peel by hand – probably better to slice. Thin, hard skin, with pith that is very attached to the segments. Has seeds, tastes like a pretty basic orange (not “Christmas” orange).
Algerian Mandarin These are called “Algerian”, but were grown in California! They were purchased at The Wedge, and is one of two oranges that were labelled as being Mandarins (not including Halos, which refer to their oranges as Mandarins on their site). This had a medium-thick skin that was very easy to peel, while not actually being loose/separated from the orange inside. It had a fair amount of sticky pith – harder to remove than some varieties. Tastes right, but the sticky pith is annoying. No seeds.
California Satsuma This was the “ugly” one of the lot – irregular, kind of squat shape, with very dimply, loose skin… AND IT WAS PERFECT. Very easy to peel, medium thick skin, only a small amount of pith that detaches from the segments very easily. Absolutely my favourite, and the closest to what I remember “Christmas”oranges being. Very plump and juicy segments, and among the sweetest of those tested. No seeds.
Mandarin After paying about $4/lb for the Satsumas, I saw 3lb bags of these “Mandarins” at Hy-Vee… and they looked very much like the Satsumas, just slightly larger. These were also very easy to peel – but had much more pith. Also has the thickest skin of all. The flesh isn’t has juicy as any of the other varieties, and has a gigantic grain to it. Has seeds.

So, as you can see… not only can the names be confusing (“Mandarin” was used for three wildly different oranges, none of which was what was referred to as “Mandarin” back home… which is “Satsuma” here!), but appearances can be deceiving, also: The Satsuma and second type of “Mandarin” looked VERY similar!

I’d asked this on my Facebook page, may as well as here too – the replies were FASCINATING (here):

1. Were “Christmas oranges” a thing where you grew up, and/or where you are now?

2. If so, what exactly does that mean to you? What was the actual orange called, what did it look like, was it easy to peel or not, how was it sold, where were they grown, etc. As much detail as possible, please!

3. Where was/is this (state/province, etc)

With 2017 being Canada’s 150th birthday, it’s about time I wrote the Canadian cookbook I’ve been planning for YEARS.

“More than Poutine” will be a Canadian cookbook like no other – written by a Canadian living away, it includes both traditional homecooking recipes, as well as homemade versions of many of the snacks, sauces, convenience foods, and other food items that are hard to come by outside of Canada!

High quality gluten-free versions of most recipes will be included.

The Kickstarter for “More Than Poutine is live, here. Please consider backing, and sharing the campaign with your friends!

Election Day Playlist

Like many people I share traits with – women, young people, Canadians, immigrants… alive and breathing… – I’m kinda stressed out by the election tomorrow.

It’s been only a year since my homeland’s longest, most stressful election ever… and that one was 78 days long! I will never get used to multiple years of campaigns, attack ads, trauma, scandals, etc. It’s exhausting.

So, as some of my friends have panic attacks (literally), and others seriously consider exit strategy, I figured I’d distract myself by compiling an election day playlist. I tried to keep it a good mix of serious and fun, only a little snark, and tried to just avoid going down the whole apocalypse rabbit hole, for the most part.

Here is what I came up with:

Spirit of the West – “D is for Democracy”

Going to start this out with a good, uplifting song. Very “GET OUT AND VOTE” theme, IMHO.

*****

Gaelic Storm – “Don’t Let the Truth Get in the Way of a Good Story”

This one actually has nothing to do with elections or politics… but damned if I don’t think of the election every time this one pops up on Pandora!

*****


Voodoo & Serano – “Overload”

I think a lot of us can identify with the feelings expressed in the video and lyrics, at this point.

*****

Great Big Sea – End of the World as We Know It

Yeah, I know that REM did the original… but I’m Canadian, this is the first version I ever heard, and it’s my default. 🙂 Pandora seems to agree on the song (REM’s version, though) being appropriate. While I’ve never heard it played on any of my Pandora stations before, it’s been coming up *all the time* the past week or so!

*****

K’Naan – “Wavin Flag”

As a VERY homesick Canadian living in North Minneapolis (“Murderapolis”), this song speaks to me on a spiritual level. Powerful, beautiful song. Somehow seems appropriate, even though it was written about Somalia.

*****

The Guess Who – “American Woman”

Not as in the misunderstood “patriotic song about an actual woman” way. Nope, I’m including this song in its intended meaning, as an anti-war song. Tired of all the fighting.

*****


Genesis – “Land of Confusion”

Is any commentary really needed on this one?

*****

4 Non-Blondes – “What’s Up”

Because a lot of us are asking ourselves this.

*****

The Cranberries – “Zombie”

Yep, it’s about The Troubles in Northern Ireland, but the message is pretty relevant to this, to us, to HERE.

*****

Lohen & Lomax – “Live On”

Beautiful song, beautiful video, beautiful message.

*****


Ice MC – Think About the Way

Anti-Racism song. Great message. You may wanna look up the lyrics if you’re not used to Ice MC 🙂

*****

Les Miserables – “Do You Hear the People Sing”

I don’t know, the election just makes me want to listen to it. Chose the multi-lingual version for a reason. Also: R.I.P Michael Burgess, who will always be my one true Valjean.

*****

Liza Minelli – “Cabaret”

If you know the musical and have any sense of pattern recognition with regards to past/current events (and accompanying dread) … you know why it’s here.

*****

So, that’s it for now… what songs will YOUR Election Day playlist contain?

Autistic Thoughts on Mainsteaming.

Recently, I applied for a job.

This is a unique experience for me, as someone who’s long considered herself unemployable. It’s not that I’m incapable of working, or that I’d even be considered an undesirable hire … it’s more a matter of … how do I put this?

I’ve long felt like any possible outside career I could take up would end – in very short order – with me feeling like a square peg being forced into a round hole. I can do pretty much anything, I can learn – and master – things incredibly fast… but that ends up being a negative, for most careers. Even with my own self employment, I hit a wall and need change, new challenges, etc.

I’ve always joked that the day a career is created where I could basically get paid to problem solve all day (with lots of research involved), but where those problems were ever changing, crossing many different subject areas… that’s the day I could settle into a career.

Until that point, I would keep doing what I’m doing. I know myself well enough to have settled into a pretty decent grove – keeping things varied between costuming and writing – that I’ve managed to stave off another career regeneration well past my normal limit.

Well, I found that perfect hypothetical career opportunity, and I applied. I know there’s only a very slim chance of getting accepted… but it would be amazing. Not only would it be amazing *for* me, it’s something I could do a great job at it – it’s something that could put almost all of my Aspergian traits to really good use. They could really benefit from adding someone like me to the position.

So. Fingers crossed.

Anyway, I’ve been approaching the whole thing the way I did when I applied for MasterChef. I feel sort of bad for making the comparison, given how that whole experience was… but there are definite similarities in the whole apply -> wait a long time to hear back thing. It’s actually kind of surprising how much it’s been reminding me of the pre-MasterChef period. Though the end goal is VERY different from MasterChef, even a lot of the “training” I’m going through is similar.

I’m doing a LOT of reading and viewing. There is so much subject matter and history to get acquainted with, and it’s fascinating. Also, it’s really exciting to see all of the subject matter I could be dealing with, and interesting people I could be working with.

I’ve been studying up on the logistics involved, and formulating the plans for the life upheaval that would be involved, including a move. (This part was easy – I’m a logistics nerd, so we’re all set!)

The most perplexing area of preparation/study/etc is what I actually planned to discuss on this blog entry, now that I’ve rambled so. It’s the matter of “mainstreaming”, as someone who … well, who is pretty settled into their ways.

I’m someone who didn’t really know how to meet people and make friends until I was 24. It’s taken time, but I actually do strike up conversations with strangers now!

I’m someone who spends her work days at home, in sweat pants and t-shirts. Comfortable cotton, no irritating closures. When I go outside for errands, it’s nicer sweatpants, yoga pants, etc. Comfortable shoes (men’s sandals).

When it comes to outdoor shoes, my year looks like this:

Sandal season
Socks with sandal season
Kamik boots season
Socks with sandal season
… back to sandals season.

Those sandals are the exact same manufacturer and style across the past few years, btw.

So, in considering a job that will require professional dress… this is actually the biggest challenge to me. Over the past 13 years or so, I’ve come a long way in passing for neurotypical… but appearance is the one big area that has lagged behind.

So, here’s where I’m at:

1. Makeup

Makeup was a “Few times a year” thing, and even then, just enough to look like I tried.

At age 37, I’ve finally been convinced to invest in good makeup, and actually wear it. I think I’m getting pretty decent at it now, though I’m convinced that eyeliner (Both the invention and decent application of) is the work of the devil!

2. Hair

I cut off 6+” of my hair, and am ready to go even further. Hypothyroid disease has done me no favours in the hair department, and bleaching (for teal hair!) hasn’t helped things. I’ve listened to friends who know better, and have invested in decent hair products. It’s soft now!

14671066_1459825804029301_1693350031253501241_n

Looking more or less like and adult human being!

3. Shoes.

AUGH. I am saying goodbye to my men’s sandals, for the most part. Boo – they are so comfortable! I have invested in a few pairs of fall boots – replacing my “socks with sandals” season. They have actual heels, which is really throwing my body/senses for a loop. It’s been interesting, feeling which muscles are engaging in the whole process of walking in heels. Certain muscles feel good, as it’s a nice stretch… others aren’t as nice.

I’m training my feet for wearing heels, as my large toe joint in particular has an issue with this whole idea. A few hours every day, I wear them at my desk, walk around a bit, etc. When we go out, I wear the smallest heel, for now – I’ll graduate to taller ones little by little.

14725700_1456260001052548_6639292544375720136_n

Starter heels, and higher heels. Definitely a style upgrade from men’s sandals!

4. Handbags.

I have a strong preference for extremely utilitarian, cross-body messenger bags. For the past year or so, this has taken the shape of a Star Trek sciences uniform bag, which I adore. I’ve also been eyeing the Klingon one, which has a built in bat’leth as decoration.

.. However awesome these are, they’re not so great for the whole idea of professional look, mainstreaming. There is a lot of baggage (hah!) wrapped up in the carrying of a handbag, so this has been a weird bit of study for me. I’ve developed a bit of an obsession, though on a different track than the sort of stereotypical female handbag worship thing.

For one, I have a definite “type”, and eschew anything outside of it. As my husband was quick to point out, the ones I deem acceptable all fall pretty close to Golden Ratio proportions. It’s not something I was consciously considering, but it definitely has been holding true.

Beyond shape/ratio, I have a strong preference for actual leather, no logos. Decorative pockets are great, as long as their locations, shape, and size are pleasing.

For me, this has all culminated into the realization that I am into old Coach bags. I am not a fan of their recent stuff, or basically anything that is “current” fashion, regardless of designer. While not being into anything current is a bit of a blessing on the wallet, I’m a bit dismayed at my apparent steadfast preference for a designer name – it’s jarring, for someone with a past refusal to spend more than $30 on a purse.

On the upside, “old” means “much more reasonably priced on Ebay”… and they’re built like SADDLES. I’m pretty sure their old leather purses will last decades. A $130 purse that lasts even a decade is a more economically sound choice than spending $30, and replacing every year when worn out.

It’s been weird, researching purses with regards to looking more adult/professional/”neurotypical”. I knew that there are a lot of status-type issues wrapped up in the choice and purchase of a purse; I knew that colours and styles are seasonal, etc.

What I had never considered before were the logistics and “status” messages wrapped up in the type of purse you carry – handbag, cross-body, etc. While I understood that my Star Trek messenger bag would be deemed less than professional, I assumed it was solely because of the “Star Trek” – not necessarily the “messenger bag”. Sure enough, when observing people… you don’t see a lot of professionally attired women carrying cross-body purses. (Those that do have skinny straps that dig in, not nice, wide utilitarian ones!)

Switching to a shoulder bag has been weird, with losing some use of the arm I’m carrying it on. I’m constantly adjusting it to be on my actual shoulder, as it slides.

Handbags are even worse, carrying in the crook of the elbow. I actually had to google “how do you carry a handbag?”, as it was something I’d never paid attention to. My preferred method is to put my forearm through the straps, aim it downward, and support the bottom of the bag with my hand – it’s less strain on the elbow, and prevents it from flapping around and annoying me.

My husband says it looks like I’m carrying a football, however. He demonstrated how the professional women at his work carry theirs, with their hand aimed upwards. He then related it to a Tyrannosaurus Rex, made a generic “raptor” noise, and we both dissolved into giggles.

I find the whole thing fascinating, though sort of ridiculous. I don’t get the point of spending more money, to lose the use of one arm. If you are a professional, you are likely very busy and DOING things… why is it seen as a more professional look to hamper the use of one – usually the dominant – arm? That’s illogical.

I’m assuming that – much like pockets in women’s clothing – it has its roots in ingrained, systemic sexism. That a woman doesn’t need to be doing anything, so it doesn’t matter if her mobility is hampered. That being the case, shouldn’t messenger bags be ULTRA professional?

The same thought can be applied to shoes. Heels are “professional” (to a degree, anyway), but comfortable sandals are not. Heels cause you to take smaller strides, hamper speed, etc. They cause bodily fatigue – why is that professional? Men’s dress shoes are such that their strides aren’t significantly hampered, after all. It’s kind of a gross message, when you think about it – especially considering many workplaces actually require women to wear heels.

When you combine heels and handbags, the problem is even greater than just “your stride is hampered and your arm/hand dexterity is hampered”… you add in issues of balance and muscle strain.

Who knew there would be so much to consider when choosing *accessories* that have literally no impact on anyone else!

Anyway, I digress. Unfortunately, my glorious TARDIS wallet was similarly ruled to be less than professional, and I’ve had to buy a more adult looking wallet. While my TARDIS wasn’t actually “bigger on the inside”, it held a lot of stuff – plenty of cards, a coin area, a sections for bills, etc. It’s been hard to find something similar in “professional”.

Wallets shouldn’t be so hard to buy! While searching for a nicer wallet, I’ve found that many are tiny. A whole bunch of them don’t have space for bills, and/or don’t have a clear window for ID, etc. Many don’t hold more than 5 cards. I’m no credit card demon, but almost every store one shops at now has some kind of loyalty card involved!

Perhaps not carrying loyalty/reward/discount membership cards is also a status thing? I suppose that fits the pattern established.

14721611_1457530000925548_5223125320610356644_n

If it were any more perfect, it would have a cross-body strap. (And would then make me feel like Indiana Jones!)

5. Social

We are getting out of the habit of holing up in our “Fortress of Solitude”, and aiming to be more social. While that has led to more going out to events *with friends*, the big change has been going out more just us + strangers. We recently went to an event for Canadians living in Minneapolis, and met people! We’ve also been going out to the theater, which has been fun.

It’s kind of amusing to me that the social stuff has been far less stressful / less effort than figuring out the handbags/shoes thing!

To be fair, though, I’ve spent a lifetime observing neurotypicals. I’ve paid attention to their behaviours, social norms, etc. For the most part, I can sort of blend in on that front, now… though I wish I’d paid attention to things like “how do you carry a purse?”!

So, I’ve been focusing on honing my reactions to people online – quite the task, given the current political climate. I’ve gotten a lot better about measuring my responses, and just keeping my mouth shut in certain instances. I’m waiting for my husband to get sick of my “LOOK AT WHAT I RESTRAINED MYSELF FROM REPLYING TO!” messages!

… So, that’s about where I’m at right now.

Moving Forward

The next two areas to tackle are clothing (suits, ack!), and nails. I’m a “short nails, no polish” kinda person. I don’t see the short nails thing changing (even though I know long nails are a professional/feminine thing), but I have resolved to try nail wraps. Perhaps that would solve my problem of chipping polish almost immediately.

Overall, I’m finding it really amazing to me how much I have to actively work *against* comfort, to project an image of professionalism. Uncomfortable shoes and handbags that hamper mobility. Restrictive clothing that requires MORE care than just normal laundry. Nail length that restricts activity, polish that doesn’t hold up to working hands.

To go to work, you’re expected to maintain an image that actively hampers work. To show that you can do a job, you have to employ attire and accessories that eschew comfort and hamper your stamina and focus.

We are a truly bizarre species, aren’t we?

Explaining Autism: Interoception, and Something Other Than “Pain”

Earlier this week, I had to go see a doctor about an ear issue. As they asked me “On a scale of 1-10, what is your pain level”, I struggled to provide an answer they would understand.

After over three and a half decades of life as an autistic woman, I can honestly say that one of the most frustrating things about life on the spectrum is the lack of shared frame of reference between autistic people and neurotypical people. Many/most people tend to think of their views as being the default, and have no idea what others live.

We’re guilty of it too, of course. Neither my husband or I had ANY idea that most people don’t feel their entire digestive system / process happening. We weren’t really aware that – much like the variety in sensitivity to smells, for example … people can have wildly different levels of interoception.

Interoception is your internal sense, your awareness of what’s going on with your body. Hunger, thirst, temperature, and more.

For most people, interoception covers the basics: Tells you when you’re hungry, lets you know when you’re getting sick, alerts you of the coming need to find a washroom.

For some autistics, interoception is muted: They don’t get the same feelings until much later in the game.

For others, our interoception is hyper sensitive. We feel EVERYTHING… and it’s really annoying. Where you feel “hungry”, I can feel when I’ve specifically not had enough animal protein lately. (It’s a terrible, full-body feeling. It feels like every cell in my body is sluggish and dying). I can feel when I’m low on iron, before it dips past the low bar of “acceptable”.

Think of it like the dashboard of a car.

For the most part, it will tell you when you need to top up your oil, how fast you’re going, etc. It lets you take good care of your car, without overwhelming you with unnecessary information.

For those with less sensitive interoception, it would be like having a car where the sensors don’t tell you that you’re running low on oil until you’re basically on fumes, and about to blow your engine.

For those like me, it’s like… having a car where all of the sensors are WAY too sensitive. You hit a small bump in the road, and it sets off, say, the O2 sensor.

Unlike the earlier two examples, however, the hyper sensitive interoception wouldn’t be akin to the warning light blinking on for a few seconds. It’s akin to multiple loud alarms and flashing lights going off every time that warning symbol is tripped.

Take pulse, for example. That’s another instance of assuming that my experience is just the default – I had no idea that most people aren’t *constantly* aware of their pulse. I hear and feel my own constantly, whether it’s running low or high. I don’t have to think about it, it’s just there – like slightly too-loud background music.

The problematic thing is that I am also hyper aware of tempo and force with it. If my pulse goes up or down by even 3-5 BPM, if my blood pressure rises or drops a little, I can sense that change – and the warning lights go off. I understand that those with normal interoception can feel their pulse “racing” when it happens – as a result of strenuous activity, for example. For me, an uptick of even 5 BPM comes off as “racing” to me, even when it’s completely within the normal, healthy pulse range. It’s… distracting.

I’m not even sure I’m explaining this in a way that makes sense, because I don’t have a ton of frame of reference on life as a neurotypical, beyond conversations that I’ve had with friends. Fascinating conversations happen, when both sides discuss “what is this like?”, “How does X feel to you?”, and “If you can feel Y, then what about ….?”. I learn a lot from such conversations.

Think about it … how would you describe a colour – or even explain the concept of colour – to someone who has never had vision before? Conversely, how would a person who was born blind explain their concept of sight /lack thereof – never having had it – to a sighted person? It would be very difficult.

When neurotypicals encounter autistic people with sensory issues – particularly from what I read of parents of autistic children – there seems to be this feeling that autistic people are being babies or drama queens, over sensory overload. There isn’t a lot of effort put into understanding that we just tend to feel things differently.

Now don’t get me wrong, I am 100% OK with being autistic, and I appreciate the “gifts” I have. I put many of my autistic traits to good use. As an Aspergian female – with a keen sense of pattern observation, to boot! – I enjoy a HUGE amount of “pass privilege”. Most people have no idea that I’m on the spectrum when they meet me – though this was certainly not the case even 15 years ago. (Observation, empathy, and pattern recognition put to use in understanding NT ways!).

As soon as I get even a tiny amount of fluid behind my eardrum? All of that “passing” goes right out the window. I am never as visibly, stereotypically autistic as I am when there is something wrong with one or both of my ears – and I cannot help it.

I am 100% aware that my experience of ear issues is completely different than the average neurotypical experience, and that my outward appearance from it definitely comes off as “weak” or “crybaby” or “drama queen”. My neurotypical friends go to work when they have ear infections! That will never cease to amaze me. I’m so terrified of the *possibility* of an ear infection, that the slightest twinge in my ear – feeling like there could be an oncoming issue – is enough to send me into a full, anxiety-ridden meltdown.

I’m not an anxious person. I can deal with major stresses, no problem. I have weathered storms many people will never see – literally even (Tornado!). I may actually thrive on stress, for that matter – I get things done.

I’m also not a wimp, physically. When I was younger, I refused to let a doctor put a cast on my broken ankle, because I had a VERY important (to me) skating competition that weekend. My skates were stiff as bricks, after all – so I figured I’d be fine. I was – I landed my Axel, on that broken ankle… and used crutches while not actually skating. I went in to get it casted up the day after the competition. Smart? Probably not… but I think it does speak to my ability to deal with pain.

Similarly, I’ve landed a botched death drop in such a way that I stabbed the heel of my blade into the palm of my hand, deeply… put a thick glove on and went out to try it (the spin, I mean) again. I have sliced myself wide open, broken bones, pulled and torn muscles. I had a back injury after a car accident that was bad enough, I was told I’d “never walk properly again”. It took a LOT of painful work, but I rehabbed THAT one.

My ears, though… are my Achilles heel. Anything “off” about them is my Kryptonite. I’m not even talking about a full blown infection – which, as I understand it, even NT people feel as actual pain. I’m talking about the subtle, non-painful stuff.

Right now, I have a “small” amount of fluid behind my eardrum. The doctor was very “whatever” about it, it’s no big deal. From all I can tell from neurotypical friends / those with less sensitive interoception, that’s an understandable reaction – that it’s a mild annoyance at best.

It’s not fully clogged, I haven’t lost MUCH hearing (it’s definitely muted slightly), there’s not even enough water that I can hear it sloshing. It’s not even that full/popped feeling you get from changes of pressure. I can absolutely understand how – to those with less ridiculous senses – this would be no big deal.

… but it’s driving me nuts. If you were to have a pillow smothered over your nose and mouth, that’s kind of what it feels like in my ear – complete with the resulting panicky feeling. The AIR feels different in that ear, and I am all too aware of it. It’s off balance from what the other ear is experiencing. While it’s not actually affecting MY balance, the lack of symmetry in ear sensation is tripping my “warning lights” terribly.

… but it’s not PAIN.

The thing is, there is a word for “pain”, and there is a scale for it. Sure, my 5 may not be YOUR 5, but at least we can try to plug in a number based on our perception of 1 and 10.

… there isn’t such a term – or scale – for what drives me to freak out about my ear.

When the doctor asks me “1-10, what is your pain level?”, truthfully, it’s a 1. If I say “1″, he has no sense of the urgency I have to fix this, how absolutely unacceptable the sensation is. People don’t curl into a ball and cry their eyes out over a “1″, after all.

If I translate it into “1-10, what is the level of unacceptability here?”, it would be a 9 or 10. I can’t ANSWER with 9 or 10, because pain is a very specific concept, and he would take that 9 or 10 to mean something VERY different than what is going on.

I have to wonder how medical care of autistic people suffers, because of this break in experience / frame of reference. I’m verbal, and I like to think I’m fairly articulate. I spend a lot of time thinking about stuff like this, and put care into explaining it – but not all people on the spectrum are, can or do. My “bridge” to the NT side of things is fairly well developed, because I’ve been able to put a lot of observation, thought, and effort into it. Not all Autistics enjoy the same level of.. NT fluency?

I digress.

The reason I write this, is because I’m hopeful it can shed some light on what life can be like for people like me, and hopefully prompt some understanding and empathy for autistics that have a rough go of things.

Remember, though, interoception is only ONE sense, as systemic as it may be. Many of us have multiple senses that are overdeveloped – taste, touch, sight, hearing, etc.

Going back to “It’s akin to multiple loud alarms and flashing lights going off every time that warning symbol is tripped.” … that’s for just the internal sense. Imagine living with that as your reality, while ALSO being exposed to external stimuli, while experiencing it at a higher sensitivity than most. The sound of an automatic door or grocery conveyor belt that is slightly out of balance can be physically painful, feeling like someone is drilling your brain. Fluorescent lights can be similarly painful.

When your senses are hyperactive, you can have that level of stimulation coming at you from not only multiple outside sources (for example, a HELLISH Cub nearby has the door, conveyor belt, AND lighting issues happening all at once), but internally.

When you see an autistic person having a meltdown, know that there is a very good chance that this is the reality that we are living with.

Everyone is different, the levels to which we experience things are different, and even the triggers are different (for example, mid range tones bother me more than my husband, who is more sensitive to certain frequencies of high pitches than I am. )… but when sensory overstimulation is an issue? Well, it could be something very different than what you experience in your own life.

Not only is this relevant to the time of year – colds/flus/seasonal allergies / hellish barometric pressure swings / etc – the holidays are coming up. With all of the extra smells, lights, noises, etc that the holidays bring… please be kind to the autistic people in your life.

Links to My Previous Posts on Autism

A History Lesson and Some Context as to Why Vaxxed is so Dangerous and Problematic

ABA: What it is, What it is Not, and Why Autistics Are Fighting Against It

On Passing, and NT Gaslighting

Symbols Matter, Words Matter

Explaining Autism: Interoception, and Something Other Than Pain

Autism Awareness Day – A Few Thoughts from My Spot on the Spectrum

Autism Speaks Does Not Speak for Me

Interacting with Autistic Children: A Guide for Charity Appearances

Aspergers: You Can’t Cure “Awesome”

On the 50th Anniversary of Star Trek

With the official release of Hedonistic Hops just a week away, I participated in an author interview yesterday… and subsequently kicked myself for one of my answers.

The question was something like “If you were stranded on a desert island, what 3 books would you want to have with you?”.

Without hesitation, my reply was “A book on tropical plant identification, a book on survival skills, and a book on primitive boat making”.

Hours later, it hit me that I may have answered the question, but managed to miss the spirit of the question – that they were likely framing “what are your favourite books” in a whimsical manner. I guess I was so focused on the idea of being stuck on a desert island, I went straight to the most logical answer… rather than indulge in whimsy.

Whoops.

I fussed about it a bit online: I categorized it among “social missteps”, which – as an Aspergian adult – I’ve been trying to be better about. My friends were very nice about my gaffe, making comments about how they appreciated my literal interpretation, etc. A comment was made about “Spock level logic”.

How fitting it is that just a few short hours later, September 8th hit – the 50th Anniversary of Star Trek.

As everyone I know seems to be pouring their hearts out about what Star Trek has meant to them, I figured I should do the same!

My introduction to Star Trek came from an unexpected source: non-geek bullies.

Though I wasn’t diagnosed till my mid teens – and there wasn’t even a name for it in my early years – my Aspergers didn’t go unnoticed by the other kids I went to school with. When I was very young, the other kids called me “Spock”. I had no idea what that even meant, until I watched Star Trek. Though it was used in a pejorative sense – as a slur against my being “different ” – I took it as a compliment. This was a character I could relate to!

There was no representation of people like me in the media in those days. While he may have been a pointy eared alien, Spock was the very first “person” I was ever able to relate to – on screen or otherwise. I guess that him being an alien is appropriate enough, having always felt like I’d been dropped off on the wrong planet! (Which I now know is a common feeling with Aspies).

I have no idea where to even start with describing what that’s like. There was no social media back then, there was no one “like me” in my elementary school, no one like me on TV… Except Spock. Kind of a little glimmer of hope that I wasn’t a complete freak, I guess? At the time, I rationalized that… Sure, he may be a fictional character, but SOMEONE came up with him. One way or the other, the Spock character gave me how that there were other people like me out there. It was a BIG DEAL… one that I can’t accurately put into words.

On the subject of “representation matters”, I always appreciated how diverse Star Trek was. I appreciated that there were all these characters of different backgrounds, races, even SPECIES… just working together.

As I grew a bit older, I came to notice and appreciate that the diversity I so loved about the show was so… organic. That it was written so naturally, and not in a “Look at us! We’re being so EDGY!” kind of way. I appreciated that this show – one that was almost a decade and a half before my time – put this vision of the future out there. It was… hopeful.

As I grew older yet, I met my “tribe” in the Geek community – many of whom are Trekkies. I have friends that I met as Klingons first, and “Klingon” is how I think of them. I suppose some of them might feel the same sort of way about Klingons, as I did – and do – about Spock.

I met and married a man who not only agrees that going to see “A Klingon Christmas Carol” is the only really acceptable holiday tradition for us, but was RIGHT there with me when Leonard Nimoy passed – leaving work early and instituting “grief sushi” as a thing. Nimoy was the first and only celebrity passing either of us cried about, and we were both pretty traumatized by the surprise meeting of Spock Vegas just a month later. (Though he seems to be a lovely man!)

Oh, this is getting dark. I guess it’s hard for me to talk about Star Trek without the fixation on Spock- and Nimoy, by extension. Neither one of us are what you’d consider “Trekkies” – we’re casual fans, in general. We haven’t seen all the series, though we enjoy the movies, and enjoyed TNG as children. We enjoy the enthusiasm of our Trekkie friends, for sure! (I will admit to having been SO pissed off at how they killed of Tasha Yar, that I stopped watching. LOL)

Anyway. In the past years, autism has come to be slightly better represented in the media, so I am very happy that kids of today have non-alien, “real” characters to look up to: Gary from “Alphas” (Ok, he’s a mutant, but STILL), and Connor from “Degrassi” (The most accurate representation I’ve ever come across), for example.

… but I will always be thankful to Star Trek, Gene Roddenberry, and Leonard Nimoy in particular for giving me the gift of Spock, and the gift of … relating.

I’m thankful they’ve given that same gift to other friends of mine, whether as Klingons, as women, and/or as people of colour. It’s a beautiful thing, and definitely a show – and milestone anniversary! – to be celebrated!

So, Happy 50th, Star Trek! May you continue to Live Long and Prosper.

PS: Also, thank you for making William Shatner famous. That man is a national treasure.

Sad to “Kiss Them Goodbye”…

TheNylonsFeatured

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.

TheNylons1