Tag Archives: Mimboloveadvocacy
So, VOCM records its shows via SoundCloud, so here’s the recording of my portion of the Morning Show today! 🙂
As mentioned in the bottom of last night’s post, I was interviewed this morning (@7:30) on the VOCM Morning Show by Paddy Daly. I’m hoping to get a recording of the interview, but they’ve already put a summary page up on their site.
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.
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.
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.
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!
This October, the Autism Society of Newfoundland and Labrador is celebrating Autism Awareness and Acceptance Month with the theme of “Ask About Autism”. The (genius) brainchild of the Advocacy and Communications Manager, Tess Hemeon, Ask About Autism involves activities all month long encouraging people to ask questions to professionals and autistics about autism. Something I can thoroughly get behind, because how can we teach people what they want to know if they don’t ask? (Yes, we can tell people things; but those may not be the things they feel they need to know.)
It’s been a while, I know. Between dealing with the effects of my heat allergy in July and August (yeah, summers in St. John’s are a lot cooler than, say, summers in Toronto, but that doesn’t mean that they don’t get warm), and then catching a nasty cold in the first week of September (I’m still coughing), I haven’t had a lot of energy to spare to be updating.
But the CAPP Advisory Group met in Toronto on Monday, and we had a great time. We were informed of the basic stats of the responses to the Community Round Tables, the surveys, and the written submissions – and I just want to say a large “Thank You!” to all those who responded. The numbers exceeded what our mandate called for, which is wonderful, and provides even more support for the need for a Canadian Autism Partnership.
April 2nd. WAAD. Officially World Autism Awareness Day, though I can’t think of an autistic I know who doesn’t feel it should be World Autism Acceptance Day.
This was going to be a very short post, because today I did most of my “getting my point across” on Twitter. But then I decided to look at this a different way – what have I done over the past year to contribute to Autism Acceptance?
Because for once, I can answer that I’ve done more than maintain my blog.
Last year, I wrote a letter to the ASNL about Light It Up Blue (which the ASNL continued this year, unfortunately) – it’s also been passed out to Autism Canada’s leadership.
Since then, I have also joined both Autism Canada’s ASD Advisory Board, and the Canadian Autism Partnership Project ASD Advisory Board. I have been part of discussions about creating conferences specifically for autistics in Canada, and about building a Canadian Autism Partnership. I’ve made friends with more autistics throughout Canada by this – really good friends at that. And those have helped me gain the confidence both in myself and my views of being autistic to speak out even more.
I have also started work on the project that my Social Club group is calling Spectrum Storybooks. It’s going to be a long-term project, but will be so useful. Something like that is needed, and we’re going to help fulfill that need.
So I don’t know about the world as a whole – there’s still a lot of things wrong with the public view of autism – but I’ve done things this past year that I can be proud of. And that? That’s something worth celebrating.
(Except I know exactly when I’ll be coming back. 😉 )
So, back in November/December, I applied to be a member of Autism Canada’s ASD Advisory Board. On my application, I filled in that I was interested both in being part of the planning for a conference specifically for autistic adults (AKA a Canadian version of Autreat), and as a stakeholder in discussions, polls, surveys, etc. The latter has gotten me involved in CASDA (Canadian Autism Spectrum Disorders Alliance) as a stakeholder for the Canadian Autism Partnership Project (CAPP), a Federal initiative whose goal is to: “address key issues such as information sharing and research, early detection, diagnosis and treatment, and supporting families” (quote from Canadian Autism Partnership: Canada’s Economic Action Plan).
The first face-to-face meeting of stakeholders is going to be in Halifax next week. (I’m rather looking forward to it.)
And even more, because my sister and my oldest niece and my nephews all live in a suburb of Halifax, so I’m going to be spending some time with them as well.
This is very much an aside, not a standard post, but I think it needs to be said.
Sunday, I posted a recommendation link post to Nick Walker’s “What is Autism?” I then proceeded to go and read his entire blog (called Neurocosmopolitanism). There aren’t very many posts there at the moment (from what I can see, he’s quite the busy man – and there is a new one up today), but the ones that are, are well thought-out, and thought-provoking.
One of those posts – the second one – has a very long title: Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm. I’m not going to go into loads of details here – that will be reserved for the recommendations post I intend to put up sometime this week – but there is something important that I want to say straight out.
This post – with its description of the pathology paradigm, how it damages us and impoverishes society (not necessarily mentioned, but I’m a firm believer in the “Patchwork Quilt” society, rather than the “Melting Pot”), and its suggestions for how to build a neurodiversity paradigm (that is not solely about autism, but other “conditions” involving differences in neurological wiring) really made me think. And one of the things that most made me think was about language use, and how it affects our views of ourselves. In particular, the term “Autism Spectrum Disorder”.
Nothing wrong with the term “Autism Spectrum”. That’s a very good term. It’s the “Disorder” component that Mr. Walker takes issue with, and argues against very well indeed. He points out that using the term “Disorder” makes it appear that there is something “wrong” with us – which is exactly the sort of thinking that autistic advocates are trying to fight. That the neurodiversity community is trying to fight.
So. I have gone through my links list, and changed each description/category of “ASD” to “Autistic”. I have not yet decided whether I will do this to my posts or not – I suspect not, simply because they provide a record of how I thought at the time. But the change has to start somewhere, and who better for it to start with than ourselves and our allies?
[Added Note: I have also changed the title of my post category and tag of “ASD” to “Autism Spectrum”.]