Hi Reader,

Tldr (too long didn't read): I share my experiences attending a conference that had a poorly-created 'quiet room' and advocacted hard to get them to improve it. I share about why this was so problematic. At the end I share key points 'What does it look like to do better inclusion and accessibility?' you can scroll down to there if you just want the quick tips!

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Last week I spent Monday to Friday attending the incredible SXSW Sydney conference, a wide-ranging conference that spans tech, innovation, creativity and a lot more.

For an AuDHDer who spends 80-90% of my regular work hours at home (in my safe, well-controlled, comfortable, quiet space), this change of environment to 5 full days ‘out in the world’ with new places, loads of people, heaps to navigate... was challenging. I’ve also now been dealing with a nerve issue causing massive arm pain in my right/dominant arm. Delightful (sarcasm)... so my pain levels and physical limitations are a whole extra layer of challenge I didn’t really sign up for.

All of that said, the challenge of attending the conference was absolutely worth it. It’s deeply motivating to spend time diving down into special interests (and many many side interests!). The amount that I want to be there, listening and learning with a little smidge of lovely connecting - this shone brighter than the discomfort and effort that it took for me to attend.

What I really wanted to share about was the theme that has popped up in important panels about and with disabled folks. A topic that I’ve been living in parallel during the conference.

Inclusion and access can’t be an afterthought, it needs to be built in at all stages

SXSW Sydney had a fairly extensive Accsessiblity page on their website which I had trawled many times in the lead-up to the event. Among other things, they advertised:

‍Here’s the one sensory space/quiet room that I could locate (and I had to ask staff where it was to find it, the first big issue). The 'Quiet Room' at SXSW was quiet on the noise front, but it was bright, uncomfrotable and tokenistic.

Why is this room a problem? As an Autistic person, being out at an event like this is incredibly overwhelming and draining. I had done my homework and expected a sensory-safe space that I could rest and recharge in. The bright, uncomfortable room didn't match their promises and didn't match what I'd been led to expect. I had no safe spot to recover. This meant on one day I actually left 2 hours earlier than I had wanted to as I'd reached my limit.

I emailed the designated accessibility email address twice, early in the week, explaining that the room wasn’t sufficient and outlining key changes that could be made quickly. Day 3 I received an abysmal copy-paste response:

Let’s be clear here - advocacy and self-advocacy is EXHAUSTING. When the burden of effort falls to disabled and neurodivergent folks, we are expending our already-limited store of spoons asking for things that should be the. bare. minimum.

Further to that, when we put our hand up to advocate for change and that change is ignored or pushed aside, that tells us ‘your effort was for nothing’ and ‘your needs don’t matter’.

I made one last attempt to reply and get them to acknowledge how ableist and hypocritical this all was. The whole thing was incredibly draining and upsetting, but I managed to persist with my 'calm on the surface but firm' advocacy.

On Friday morning (last day of the conference) I received a great email response, taking my points seriously and outlining changes they had made. An actual advocacy win... eventually!

I dared to head back to the quiet room and honestly, I cried for a moment.. tears of relief (and exhaustion). Darkness. Comfortable seating in a few different options. A proper safe, low-sensory recovery space.

That was enough for me, and that's what the quiet room should always have been, at minimum.

This should not have been a bonus to feel grateful for. This is the absolute minimum.

I’m stoked that my repetitive advocacy led to change.

I’m delighted that the conference actions eventually matched their promise and commitment to accessiblity (a bit)

I’m extremely disappointed that this took so much of my effort and energy.

And I’m hopeful that SXSW may learn from this and do better in the future.

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So for anyone hosting any kind of event, space or even online gathering, here's what I want you to take from this.

What does it look like to do better inclusion and accessibility?

• Co-create with people with lived experience, and pay for their valuable time, effort and experience.
• Be congruent. Ensure your actions match the stated intentions.
• Proactively provide clear information in a range of ways. Maps, photos, signage and helper-humans. Don’t make it hard for people who need extra support so they have to actively seek support. That’s the last thing an overwhelmed neurodivergent or disabled person needs.
• Proactively ask for feedback and respond to feedback exhuberently.
• Provide options so more people can find what they want and need. Options for seating, options for communication, options for participation. Spell the options out clearly and ensure everyone feels welcomed to choose their pathway

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I'd love to hear from you, if you're neurodivergent or disabled, what supports help you feel OK when you attend events that stretch your usual comfort zone?

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Yours in gentle recovery in my sensory-safe home,

Adina

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Adina Levy AuDHDer, Speech Therapist & Professional Educator Play. Learn. Chat. hi@playlearnchat.com • www.playlearnchat.com ​ Learn with me Neurodiversity Affirming Practice – Introductory Workshop Neurodiversity Affirming Practice Webinars for Professionals Affirming Communication for Autistic Children Course for Speech Therapists Neurodiversity Affirming Practice PD for Teams (Group discounts) 🙋🏼‍♀️ Hi! I'm Adina, a neurodivergent Speech Therapist and professional educator from Sydney, Australia. I’m so happy you’re here! I’m an AuDHDer, (Autistic ADHDer). My life’s stories and experiences intertwine with my clinical experiences, and the lived experiences and perspectives of diverse neurodivergent people. These perspectives inform everything that I teach and share. I’m dedicated to helping families, therapists, educators, teachers and communities to understand neurodivergent children better, and develop a deeper acceptance of children’s unique interests, passions, individual strengths and support needs. I am an educator, podcaster, speaker, and I send helpful emails around Neurodiversity Affirming practice and support, that I hope will help you support the neurodivergent children in your life with more clarity and confidence! ⚫️🟡🔴​ 🔵⚪️🟢​​ ​I acknowledge the Traditional Owners of the lands on which I ​live, work and play - the Gadigal and the Bidjigal people. I recognise their continuing connection to land, waters and culture. I pay my respects to Elders past​ and present.​ I acknowledge the traditional owners of the lands where you are reading this from today. GET LESS EMAILS FROM ME: If you want to stop receiving regular weekly emails but you'd like to still get any other emails you've signed up for (e.g. if you've purchased a webinar, course, you're on a waitlist, you're a Community Member) - reply saying "LESS EMAILS"

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