“Allyship starts with intimacy”
An Unexpected Essay Of Sorts
While on a book related deadline this month, everything held within this newsletter will be scheduled in advance - simply to avoid procrastination on my part, as well as being a burnout prevention measure. Please reply to this email with any thoughts, queries, etc if needed meanwhile.
Right now, the next issue of Disability Review Magazine is ramping up in terms of production. The issue is, I hope, a contribution to better representation; the cover star is a secret for now, but I will say - this is one of those moments where I wish I could tell my younger self about this. And rather wonderfully, it started with an access failure - and a fairy godmother making an appearance - all in Covent Garden. Whovians are going to want to want to stay tuned for this one…
While conducting one of the interviews for the magazine just under a month ago, there was something of a profound exchange that rocketed around my brain for hours afterwards. The interviewee was a Taiwanese American Woman, who has written a wonderful book that is coming soon to the UK; she details a life lived at the intersection of the 3 defining ‘isms’ of our modern age, and how to do better by disabled people as a practice.
While speaking to her advice, she paused, a smile playing on her lips. And she said:
“Allyship starts with intimacy.”
The interview was just a gorgeous exchange of ideas, something which I cannot wait to share later this year. It was full of ideas, concepts, witticisms like this - the kind of discussion that leaves you thinking on *it* hours later. It’s very simple - but in a world where language becomes hijacked and maligned too quickly, this seemed almost a strikingly brilliant concept.
Disability and intimacy are two topics that immediately bring smut to the fore - and seem considerably misunderstood at best, and fetished at worst. Of all the disabled women I work with or who I count as friends, it’s very rare that no one has a ‘war story’ to share about this. (Samantha Renke wrote candidly about devotees and the impact this has for The Metro a few years ago.) And that’s a whole other topic for another day.. Alice Wong recently released her latest book, an edited anthology also titled Disability Intimacy. (Reader note: yes, I have in fact read the entirety of her back catalogue.) Rather than playing into the stereotypes - oh-my-goodness-they’re-so-cute-awww-shucks-innit-nice infantilisation - this dealt with the topic well, and with nuance. While part of the book deals with sex and relationship, even kink and BDSM, some essays were more simple - such as looking at the intimacy of care, befriending a kitten, someone asking how to assist.
And it put a name to what this means, when it comes to allyship. If we want to ‘win the war’ on ableism, this is the first home of the unlearning - those tiny moments of connection that stack up, when you are seen wholly alongside your access needs as a default. (Wong is also behind the campaign Access Is Love, which is just such a brilliant concept.
So. I thought I’d share my version, disabled feminist style. To me, it is that moment when a friend, a partner, whoever is by your side, as a default - and they get it right. This is the moment that says ‘at dawn we do battle’ - and they will wage that war with you. It is to be seen wholly, with your access needs as a default, a non negotiable. They are just a part of your humanity. It’s impossible to not love that.
And I’d like to encourage you to write your own list, or at least share in the comment section on this website:
4 hours on FaceTime in response to surgery questions. At the end of October I will be off for two weeks to recover from surgery; I am dreading it, I don’t feel like I am being particularly heard when it comes to questions. A friend called on FaceTime to have a proper conversation, having had the same procedure herself. There was also an offer to come and stay with her while in recovery, too. By the time we finished, the light had returned to this world; it was 6:00am (!) But this was the most alive I’d felt in such a long time. (I’m told I’m allowed a lipstick as a treat to myself, too.)
“Do you want to go inside? This is only going to get worse…” Older, white, university educated, male colleague took control after hours at a bar - because hypersensitivity issues are not fun.
Any time an Autistic person ‘unmasks’ to reveal the shape of their universe. I cannot stress how much of a privilege this is; I have witnessed this on three separate occasions recently, and it was such an honour. An Autistic person, who trusts you enough, will let the Neurotypical mask go. And when they show you the fullness of their humanity, that should be respected - there lies all their fears, their idiosyncrasies, their most cherished beliefs and special interests, the unvarnished joy of a neurology. The alternative shape of another universe, another realm.
“Does touch hurt you?” Over dinner, a friend wanted to know how to best support me. I’d rather someone be direct and get the language wrong, so we can talk about this space with a sense of grace. To be actively listened to, to trade a joke or two - I had the biggest smile on my face. Even if some questions were unusual.
“Good ****ing morning!” The greeting of Florence Given is sometimes what I wake up to on WhatsApp from a fellow disabled writer. Usually it involves subtle messaging with outfit choices if we need to assert ourselves. Slogan tees optional.
“Do you have something against people helping you?” An individual asked to speak to me recently - and I felt so ashamed when I realised I’d misread the situation. The voice behind me asked the question; I also think that chivalry is the product of inequality, and that decency should not be gendered or divided. That was an attempt at connection that I got very, very wrong; I think they read this newsletter, and I’d love to apologise. I was *very* touched. Help is something I perhaps need more than I sometimes realise.
The ‘tarot card night’. A friend’s way of showing empathy. I got a slogan shirt with the card pulled for me as a result.
“We’re buying you drinks!” Two disabled friends came to find me after an access failure left me in tears; this is not usual for me, a very rare occurrence. I wanted my mum and to go home to curl up with my dog; that’s how bad this felt. I was swept up with hugs. Very simple, one person who was unexpectedly there took charge: “Lydia, we are buying - what would you like to drink?” They reeved their wheelchair by hand to go over the pub’s ramp; they flew through the air with the greatest ‘punk’ attitude I have ever seen. Nursing my safe drink of choice, we were there for hours - just to share ‘war’ stories, trade a joke, laugh at the world round us intent on keeping us out. ‘My fairy godmother’ moment. 12 year old me would have lived for a story like that night.
“Shouldn’t ‘Miss Accessibility’ be using the lift?” A gentle call-in when on the Underground, having survived (just about) a six day run of assignments - including a manic trip to the Imperial War Museum with two children under 10 in tow.
“Mummy, what’s an investigative journalist?” My friend’s children *love* to ask questions; this was one I overheard on the phone. The friend came back on the line: “I’ve told him all about you Lydia - and he can’t wait to meet you.” This is not a title I claim for myself; in the aftermath of Covid 19, this friendship has sustained me beyond belief. I sobbed that night - because someone had seen me as what I’d like to be, one day. I love my friend’s children dearly, now as the ‘aunt’ figure who provides presents on birthdays and Christmas. When we last all saw each other, I was given the nicest hug I’d experienced in a long time - unprovoked, unmasked, and joyous.
What would you add to this list? Share with me below!
Catch Me In Action
✨ As a reminder, on the 12th of this month I will be chairing a panel on publishing and accessibility. There are two guests, and
, my partner unofficially in crime. Collect a free ticket by clicking the button below - and yes, this will also be recorded:✨ AccessAble recently hired me to check out the Imperial War Museum for its accessibility - and to report back on camera.
✨ And…. because I was fed up to a high degree, I wrote (angrily) for Happiful to de-bunk some myths about Autism. Once in the print issue, this can now be view online.
✨ For Purple Goat, I analysed how to make webinars accessible.
✨ Fellow journos! I have written a piece about standards of covering Neurodiversity for Press Gazette, focusing on what we should and should not be doing. Columnists, be warned.