If you haven’t heard of (or don’t remember) Judith Newman, then please read this first.
You’ve gone and done it again. Damaged autistic people, and you’re probably not even aware of it. No doubt you even think you did something good for us. But all you’ve done is proven that you don’t actually listen to us. That we can write and explain and campaign all we like but you don’t listen and you don’t change.
In case you’ve no idea what I’m upset about, I’m going to spell it out. So that maybe, just maybe, you might open your eyes this time round and see what you’ve done. I really hope you do.
My husband has had an annual subscription to National Geographic Magazine since 1990. That’s 30 years of magazines on our bookshelves. A fantastic resource which I like to skim through when I need something to read. Today the May 2020 edition caught my eye. And amongst the articles on insects and habitats and photos of penguins, I spotted an article written by you. Entitled “Coming of Age with Autism”.
My heart sank. Interesting subject but why did they choose you to write it? Why not an autistic adult writer? Or even maybe perhaps a non-autistic person who is known to write respectfully about autistic people? Why you? No doubt you have influence, with your “bestselling memoir” about your autistic son. The one where you disrespect autistic people, both within the book and during the aftermath of the boycott of it by autistic people and their allies. So, even though I was dreading it, I decided to read it anyway, just to see if you’d learned anything.
I needn’t have bothered.
Starting with your near-constant use of Person First Language (“with autism”, “on the spectrum”). I know you know why this is problematic. If you don’t, then I’ve written a handy primer on it here.
But I was expecting that kind of language so it wasn’t a big shock. I was also expecting the tone of the article to be patronising and kinda dismissive and vaguely insulting in a clueless but perhaps well-meaning way. Upsetting, but nothing setting it apart from most articles about autism written by non-autistics.
And then you struck. You named an autistic twenty-something year old, and quoted his mother. Where she mentioned his encounters with a sex worker. Really? Really?!!!
We told you. We told you when you wrote about your son’s sex life, or lack thereof, in you book. We told you. Please don’t write about autistic people’s sex lives, or other private matter, without their explicit consent. And if you did get consent, can you at least have the decency to put that in writing so we won’t make assumptions reading your writing and getting upset.
Because it really is upsetting. Knowing that you and others like you can write whatever the hell you want about autistic people, and people will read it and, even if you don’t intend to, you will promote stigma and misconceptions about us. Like thinking it’s ok to make our private lives public. Because it’s really not.
In an ideal world, articles like this would only be written by autistic people. And would be written with full and explicit consent of the subjects and not mainly consist of quotes of their parents. Autistic writers would be paid a commission by magazines such as National Geographic and would help change the narrative about autistic people.
But until then, dear Judith, could you please do the decent thing and just stop writing about us. And start listening to us instead?
The Health Rising blog is mostly about ME/CFS ( Chronic Fatigue Syndrome) and Fibromyalgia, but also mentions EDS, POTS and SFN (Small Fibre Neuropathy) – which are all conditions that I have.
It’s an invaluable resource and posts about all the latest research into these conditions. There’s also a Forum associated with the site, which I haven’t registered for (yet) but have browsed extensively.
I definitely recommend this blog for anyone with a chronic pain/fatigue condition. And am looking forward to reading it more fully when I’m not so tired and in pain!
As the cases of Covid in Ireland have started to rise again, we are warned to limit our “close contacts”. But what exactly does that mean?
A close contact us defined as someone who has been within two metres of you for more than 15 minutes. But that doesn’t really make it personal enough.
Technically a close contact may be the person sitting behind you in a cafe. Or in a long queue somewhere. But in reality a close contact is our friends or extended family who have popped round for a chat. Or have gone to said cafe with us. Or helped us move house. Or given us a lift to the shops. They usually aren’t some anonymous stranger.
Until this week, my family have had zero close contacts since mid-March. And then I met up with three friends during the week, on various days. We sat in the garden of a cafe and drank tea. We chatted. My first “in person” chats with adults apart from my husband in six months. We laughed. It was great.
But…they were definitely close contacts. Outside but no masks (can’t while drinking tea!) and only about one metre apart. For a couple of hours each time.
And now I am stressed.
I remember when we were getting the “AIDS/safe sex” talk in school. And the point made was that you didn’t just have to worry about the person you were having sex with. But with any other person they were/had been sleeping with. It feels a bit like that. I had close contact with three people. But how many people did they have close contact with? Their spouses, their children, their housemates, their friends and families. And how many people did those close contacts have close contact with? It’s easy to see how one infected person can spread it to hundreds.
I’m pretty certain I haven’t caught Covid off anyone. The chances are tiny, even if they are rising. And I probably will meet up with my friends again in the next few weeks/months. Very necessary for my mental health!
But I’m not going to be rushing to increase my number of close contacts. I’ll still try to keep it to a minimum. Err on the side of caution.
How many close contacts have you had in the last two weeks? Could you remember them all if you got contacted for contact tracing? Hopefully you won’t need to but if you do, hopefully it won’t have been that many.
Today marks six months since Ireland’s first case of Covid.
Somehow that seems like both a very short time ago, and a very very long time ago. The world has changed so much. And yet my own personal world has changed very little. A paradox that I still can’t get my head around. And one that exhausts me.
I might possibly be having a visit from a friend or two during the week. My first face-to-face contact with an adult apart from my husband and delivery drivers/shop assistants. Something I’ve been missing and yet also something that I haven’t been missing. The paradox of being lonely and needing company but being an introvert and not really wanting interact socially.
I left Facebook a few months ago as it was all becoming too much. And yet social media has never been more important to people for keeping in touch. The paradox of leaving social media at a time when it might be really useful to have.
I was supported to be speaking at the AuSome Conference in March but it got postponed. I guess it will move online at this stage. So I need to make a video/livestream for it and I’m terrified. The paradox of being more comfortable on a stage than speaking from my living room.
Not sure where I’m going with this post. Just wanted to mark this “6 months” milestone somehow. Wonder where we’ll all be in another 6 months?