Category Archives: Advocacy
So, in my last post I talked about mimicking, and how it’s one of the common traits of female autistics that helps mask the fact that we’re autistic. A couple of days ago, my sister (the SLP one, not the teacher) found a post on Facebook that contained a wonderful poster/infographic (see below; designed by Karen Baker, a graphic designer in the UK) about the traits of autism in females, and shared it. Read on, please!
So, VOCM records its shows via SoundCloud, so here’s the recording of my portion of the Morning Show today! 🙂
About 3 hours ago now I was a participant on a panel done by the Autism Society of Newfoundland and Labrador about Residential Options for those on the autism spectrum – difficulties and possible solutions. It was livestreamed across the province and is available on YouTube (the MUN School of Music channel). It was an excellent panel and a lot of issues and possibilities were discussed. (Note: Forward the time to 8:52 which is when it actually starts.)
Note that tomorrow I will be interviewed by VOCM! 🙂
So, as mentioned in the last post, this post is focused entirely on our panel – First Voice Perspective – The Unspoken Price of Advocacy. Note that the panel was recorded, and I’ll be putting up a link to that recording when it goes live.
The panel consisted of myself, Corey Walker (from BC), Patricia George-Zwicker (from NS), Jackie McMillan (from ON) – all of whom were on the CAPP Advisory Group with me – and Daniel Share-Strom (from ON). There was supposed to be one more, Bruno Hache (from ON), but unfortunately one of his best friends committed suicide on the Monday, so he couldn’t make it.
But before I get to the contents of our panel, I want to share a picture with you – a picture that was taken of pretty much all the attendees of the summit. (It’s not loading into this post, so here!)
Day 2 of the CASDA Summit (Thursday April 19) started out on an interesting note. And by “started out”, I mean 1 am.
I spent the first two hours of the 19th working on the script for my portion of the “First Voice Perspective” panel – finishing writing it out, and then reading it out loud and making edits. (I spent from 1am to 2am doing the latter.) Then I managed to crash – for a while.
The Summit Day 2 session itself also started out on an interesting note.
First day of the CASDA Summit of 2018 (Wednesday April 18). Woke up earlier than I meant to, which was irritating. Read an article from the Ottawa Citizen written by Senator Jim Munson, and got upset about some of the terminology used. (He saw my tweet, and apologized both on Twitter and in person, I definitely have to respect that.)
Got to the summit place (same place as last year, the Shaw Centre, which is attached to the Rideau Centre, which is kitty-corner from the hotel), grabbed breakfast and chatted to various people, including the other ASNL staff and board member there, and then settled up front at the “autistics'” table. 🙂 (AKA the table that most of us sat at, including all of us who were on the “First Voice Perspective” panel.)
Just a warning note before I get into the day’s panels: I was only able to note down certain comments (as opposed to the whole speech of each panelist – thinking of recording certain panels next year for my own info), so I went for the ones that struck me as particularly important in what each of them were saying.
So, I’m doing the autistic advocate panel at the CASDA Leadership Summit in Ottawa this year. (I was part of it last year, as CAPP’s last gasp, but it seems I only wrote stuff down about it on Twitter rather than this blog. But they liked us so much last year that they requested a panel by autistic adults this year too!)
I got into it a bit late, because I hadn’t even realized about the sponsorships available, but in time to join the panel. There are three others who were part of CAPP with me, and there were two other autistic advocates whom I’d heard of but not met. Unfortunately, the friend of one died recently, so he’s had to skip the conference to deal with that. (*my sympathies to him*)
So, long story short, I got in. I’m sharing a room with Patricia (like we did for the Exploring the Spectrum conference in Halifax last year), so that’s all good. (Saving what money we can!)
Bit of a rant here, just warning you….
Additional Disclaimer: I am not naming names; this may have been prompted by one incident, but I have no desire to start a flame war.
So, a friend recently sent me a link to a post by someone else that was written in response to a comment they’d left on a previous post. A calm, rational comment, that did disagree with some (though definitely not all) of the author’s viewpoint, but explained why they disagreed. The subsequent post (the one I was directed to) did a not-very-good job of “paraphrasing” certain elements of the comment (i.e. they were not direct quotes, they were the author putting their own spin on what was said), and seemed to feel that my friend was NT because they disagreed with the author.
So, I’ve mentioned Neurodivergent Rebel’s Twitter sessions of #AskingAutistics before, in my post about grief and coping with it. On Saturday (the 13th), she posted about an article on Quartz Media, regarding a robot that the creators say can teach adult autistics to read emotion and facial expression nuances. According to the article, researchers at Heriot-Watt University in Scotland created Alyx. It’s generated a fair amount of irritation among autistics on Twitter, for various reasons.
I’m going to quote from the article, and then give some of my counter-points (some of which I’ve already mentioned on Twitter, but are expanded here). Because honestly, this is not going to work the way the article claims it will. Here’s why (aside from the fact that already a number of autistics are vehemently opposed to it).
Disclaimer Trigger Warning: Mentions of eugenics, privacy invasion, emotional abuse, and other potentially triggering elements.
So, I’m not on Twitter very often. I follow a fair number of people for various reasons (writing and autism being the two main ones, but not the only ones), but that’s still a lot of reading that has to be done every day, so I tend to only go on occasionally, and mostly read my notifications.
As a result, I wasn’t on when the #BoycottToSiri movement first started. (I’d never even heard of the book – “To Siri, With Love” by Judith Newman – before.) The first I heard of it was a post by a friend of mine referencing the honestly disgraceful characterization of YouTube autistic advocate Amythest Schaber in the book.
(Hint: “Manic Pixie Dream Girl” is a very negative term, used to refer to female characters who are only in things to appeal to the straight male audience. But even “gamine” would not have been an acceptable term to use. Amythest’s work has absolutely nothing to do with their appearance, and like I said above, it is disgraceful that not only did the author describe them that way, but also that the publisher (Harper Collins, BTW – I encourage everyone to express just how insulting and disgraceful this book is to them) allowed it.)
Anyway. Long story (very long story) short, I was poking around to get some information to send to people about this today, and ran into the Storify of a chapter-by-chapter review of To Siri by autistic adult and parent (and writer) @KaelanRhy. I checked with her, and she gave me permission to post that Storify here.
So, the Annual General Meeting of the Autism Society of Newfoundland and Labrador was this morning. A few people who read this blog know that I applied to be considered for the self-advocate’s seat on the board. As you can see by the title, I got in.
The other applicant for the self-advocate seat happens to be someone who is in my Social Club, and we were both told that the board and Scott Crocker (the Executive Director of the ASNL) were so pleased that there were two of us showing definite interest, that whoever didn’t get voted in would probably still be co-opted for things. 🙂 I’m personally hoping that the other applicant applies for one of the available “At Large Representative” positions that will come open next year.
Anyway, aside from giving everyone the good news, I want to add a disclaimer to this blog. I’ve already put it in This Blog and Post Index, but I also want it here, just in case people don’t read (or re-read, in some cases) that post.
Disclaimer: The opinions expressed on this blog, unless explicitly stated, are the personal opinions of the blogger only, and do not reflect the opinions of the ASNL Board of Directors.
The online web version of the interview I had with the CBC St. John’s Morning Show is now up. 🙂
They used two of the pictures I sent them: the selfie I took on Monday (which shows some of my artwork on the wall behind me), and a picture of Imber and I from the year I was diagnosed. So happy they used that pic!
So. The interview I mentioned on Thursday ran yesterday morning in two sections (the first was a teaser/intro), at 7:36 and at 7:43. I recorded it on my computer through the CBC Radio One streaming, and spent half of yesterday picking out the parts that were my interview (the recording was from 5:20 to 9:30 in the morning!), cutting them out, and putting them together to send to my friends and family.
There’s also going to be a web page version, and when I checked with them to ask when it would go up (answer is: Sometime over the next few days, they’ll try to remember to let me know, but I’ll keep checking the site anyway!), I also asked about whether I could post that recording to my blog (wasn’t sure about the legalities of it). The web guy said that there should be no problem, so here it is! The interview is about 10 minutes long or so, and I’ve included about 10 seconds of silence between the teaser and the conversation just to set them apart.
Note: Ms. Holmes accidentally calls me “Tracy” at the end of the teaser (2:11, according to my sister-in-law), but all other uses of my name are correct.
(And why is the default “not getting my name right” always Tracy? If someone’s going to get my name wrong, I’d expect them to call me “Judy”, but it’s always, always “Tracy”!)
So, here it is. Enjoy!
I haven’t been reading many other blogs for the last little while, due to various reasons including my concentration on CAPP issues, overall fatigue (ended up with low iron anemia again this past April, and that’s taking a while to clear up), and trying to focus a bit more on my writing (which has mainly meant doing a lot more reading of fic).
However, I recently (like Thursday) noticed a tweet referring to an interesting-sounding post by Unstrange Mind, and thought that I might as well check it out. So I followed the link I had on this site, and discovered that he now has his own site (rather than one hosted by wordpress.com). So I’ve been reading his posts on that blog, in chronological order (which included updating the links to the DSM-5 Autism Spectrum Criteria Analysis), and in the midst of doing that, found the title post.
Neurodiversity: Creativity and Innovation Thrive When We Welcome Diverse Minds is the text of a talk Unstrange Mind gave at University of North Carolina’s Fourth Annual Disability is Diversity Week celebration, on Wednesday, November 9th, 2016 in Asheville, North Carolina. (CONTENT WARNING: Post contains mention of suicide and attempted suicide.)
Despite the aforementioned content warning, this is a hopeful post. Unstrange Mind explains the basics of neurodiversity – including the biological factual basis – and how that can apply to support creativity and innovation. He looks at the advantages that supporting and encouraging a neurodiverse environment can provide, and names examples. he also points out that accomodations… don’t really cost all that much.
So. Highly recommended post. And at least a few more to follow.
So, last week I put up the post about supporting CAP on Twitter. My mother proceeded to bring up a good point – what if you’re not on Twitter (and don’t want to be)? So here are some things that you can do off Twitter to help show your support.
- They could write to their local MPs, asking for them to clarify their position on CAP.
- If they have Facebook, they could share information about CAP there (the website, videos etc.)
- Write an editorial about the need for a Canadian Autism Partnership to submit to their local newspaper. In fact, if any of you are interested in doing this, we (the CAP team) would be more than happy to help
- Email their friends and family to share information about CAP.
Thank you again, for anything and everything you do to help us get CAP underway.
To my Canadian readers – a guest post from my mother:
This is something that I feel quite strongly about and we are asking for your support. I was on the policy panel last year that came out with a paper to hand in to government and it has just sat on their desk since then. Please feel free to forward this to any and all the people that you know. Read on, please.
For fellow Canadians among my readers, including those who have been following my CAPP journey:
I am reaching out to ask for your help in support of the Canadian Autism Partnership (CAP) which recently was denied funding in the 2017 federal budget. Please take a few minutes to read this email, and 2 minutes to show your support.
CAP brought together top experts in the autism field who were advised by self-advocates, stakeholders and government representatives from 13 provinces and territories, to develop a business plan with a goal to address the complex issues related to autism in Canada.
CAP strives for timely, evidence based efficiencies in the following areas, which reflect the most pressing issues facing Canadians with ASD:
- Early identification and early intervention
- Interventions and services to optimize quality of life at all ages
- Specialized medical care, including access to dental and mental health services
- Education, including transitions to work, post-secondary education and independent life.
How you can show your support:
- Learn more about the CAP project please visit: http://www.capproject.ca/index.php/en/about-capproject/project-objectives
- Make your voice heard by signing up to Global Citizen https://www.globalcitizen.org/en/content/mp-standing-ovation-moving-speech-autism/
- Use this tweet to show your support of CAP through a clear and non-partisan message which will go directly to the Prime Minister and Health Minister: “.@JustinTrudeau @janephilpott Support CDNs living w/ #Autism Spectrum Disorder, pledge $19M toward the Canadian Autism Partnership. #cdnpoli“
There is now a followup post for what you can do if you don’t use/have Twitter: Support Request: CAP – Followup.
So, way back in December, my friend from CAPP, Patricia, told me that Autism Nova Scotia was having a conference March 2nd and 3rd, and she had managed to get Steve Silberman (the author of Neurotribes) as the keynote speaker (he was great, BTW). She also said that they were doing a panel of women autistics, and asked if I would like my name mentioned as a possible panelist. I said “Yes!”. 😉 (Who wouldn’t? Especially given I’m getting more into advocacy.)
Over the next two months various details got ironed out, and I was confirmed as a panelist, and very eager to go.
And I had a really great time.
(Note: Long – it covers a lot over the course of the two days! Also note there are pictures included.)
Check this out! Excellent reasons for hiring autistics, and the CEO in question even comments that having autistics/neuro-diverse teams helps everyone in the team do better!
So, I didn’t actually post anything about the CAPP meeting in Montreal at the end of October, mostly because it was a quick two days and I got unpleasantly flustered over issues with getting to the airport for my flight home. (I made it, but it wasn’t fun.)
One thing we did in Montreal during out meeting, however, is now public – each of us who were present were filmed doing a quick interview by Spectrum Productions, in order to create a short film about CAPP that could go public.
As of today, those films – the short film put together of all of us, and the individual interviews – are live, and available to the public.
The short film Hear From the Experts contains a selection of the interviews that each of us gave; the individual interviews contain more details and answers. Below is the short film and my interview.