I thought you might be interested in the DDS guiding values which are read at the beginning of each of our multiple-times-a-week peer support sessions:
Peer support guiding values
~We value all ways of showing up and sharing: camera on, camera off, verbally, in the chat. There is no need to share at all, just by being present we’re all part of the space and supporting each other.
~If you would like your message in the chat to be read aloud, simply add that to your share. If you want to speak but the conversation is moving very fast or you’re having trouble jumping in, raise your hand and the host will invite you to speak.
~ We value silence. If there is a natural pause after someone shares, it means that people are processing, thinking, gathering their thoughts for their own share, or typing in the chat. It never means that you said something wrong or awkward. People may also jump in immediately. That’s all part of the natural ebb and flow of the conversation.
~ There is no being late or leaving early. Feel free to come and go whenever, no need to explain or apologize, or to check out before leaving.
~ There is a weekly topic that serves as a starting point for shares. From there we spiral out and the conversation evolves naturally. Tangents and sidetracks are welcome and encouraged.
~ We are peers; we leave the professional ‘hats’ we might wear at the door. We do not speak from a place of authority and we do not give advice.
This made me weep. Everything I’ve been trying to say, everything I’ve felt for four years clear and validated here. Will be sharing this for a long time to come. Deepest gratitude.
THIS! Followed my wife around while she scooped cat boxes (her day) while reading the whole thing out loud. We kept echolalically repeating back choice phrases and words (we're both Autistic)! Thank you for speaking so eloquently and thoroughly on this CRITICAL issue that affects so many marginalized communities and too often is swept under the rug. I think the "powers that be" are all hoping that crushing student debt and a tax-payer funded genocide will make us forget the questions that have haunted us since 2021: "If it's not about productivity then what IS it about? What function do in-person requirements really serve?...or...Who do they serve? Why do they want to control and surveil our bodies no matter the cost? Why is that the MOST important thing to managers, CEOs, and board members? Why is it even more important than the thing we all thought mattered most to them - their own bank accounts?" Thank you for your time, your work, and your energy on this pale blue dot.
With most, if not all, of the people I've met in person and consider some flavor of friend, the relationship started online. I don't think that's a coincidence, it establishes a level of understanding without the burden of the socially mandated dancing around pretending to be something were not. (Surprise, most of these people either already knew they weren't neurotypical or found out soon after.)
I had a therapist at one point when in-person stuff was verboten during the early stages of covid who noticed how much more relaxed and at ease I was during phone appointments than in-person. Why? Because I didn't have to commute to the appointment through horrible traffic and push through chronic pain. Mind you, I'm not huge on phone conversations but even then the difference was stark. Not that this professional, who claimed to be knowledgeable about autism, understood this, because in-person is just so *magical*.
Two-thirds of autistic people fully unemployed... now there's a factoid to make you cry
I've had to send very similar emails (albeit shorter and less personal) to several conference organizers in my own field, who saw nothing wrong about talking about accessibility or DEI with no remote option for their conference. When I pointed out to one of them how ironic it was that a conference with a theme around "civic engagement, recognizing the significance of libraries in promoting equity, diversity, and truth," was inaccessible, I was thanked for my feedback (neurotypical for "shut the fuck up") and I was told that making the event inclusive and accessible was top of mind, and that senior leadership would get back to me.
I'm still waiting (I was not really waiting). The event was held in January of this year. I'm sure they're patting themselves on the back for what a bang-up job they did.
Next time, I will just send a link to this post. Thank you!
Devon does it again. Another thoughtful, beautifully written, sensitive piece that serves to educate those of us who are not neurodiverse, and offer solidarity to those who are. In some ways I can relate to what he says because I feel a bit socially awkward, and not very confident in groups, and I hesitate to speak for fear I will stumble over my words because they don't flow so easily when I speak. I am much more comfortable writing because I can take my time to pick the best words. What I love best about his writing is his empathy. I am always so struck by how he reaches out to understand what people very different from himself might be experiencing, and then shows solidarity for their plight. Thank you for putting in the thought and effort and time to craft this article.
With my own particular neurotype/experience, I both agree with everything you said *and* I feel like in-person interactions can have their own advantages. I'm fine with the event producer acknowledging the "magic" of in-person interactions, but the problem is that they act as if the different-but-also-powerful magic of remote engagement that you spelled out in this piece didn't also exist. I find this blindness especially frustrating, because hybrid conferences exist! I attended a hybrid conference that was exceptionally well run for both the remote and in-person participants, so I know it can be done. And the more hybrid conferences people produce, the better we'll get at it.
Yes, I am a firm believer in addressing competing access needs and in a harm reductionist approach. Some people do need the stimulation and social facilitation of an in-person even. Many ADHDers, for instance! Unfortunately, in-person work and event spaces cater only to neuro-conforming profiles and exclude ADHDers in other ways anyway... a hybrid approach costs more in terms of prep and resources, but if we want to include as wide a swathe of ability types as possible, we have to go that route.
Extremely frustrating that a symposium about disability was this ignorant! I really hope they actually read this response and thought deeply about what they were doing. Thank you so much for this post. It speaks to so many people's experiences with forced in-person participation, including my own. And as always, I learned a lot!
Nope, they just repeated that they'd only like an in-person event, and then apologized for using the word "special" in their first email, bizarrely. Classic liberal performative tweaking of language rather than policies.
Don't know why I'm surprised but struggling to believe that they double downed on their position 🙄 I found your piece so thorough and well argued that i can't believe it didn't sway them around!!
The things is, most people are not persuaded by facts or even by logical arguments. Behavior is more predicted by mood, social affiliation, and financial incentive.
Yep, absolutely- and it's infuriating. I work for a University in the UK and what you came up against with this conference made me think of how the EDI initiatives seem to work here - we decide the parameters of how you'd like to feel included and so long as your demands are within our narrow range of imagination/will, of course we're willing to do all things equality/diversity...
That makes their reply to you even more callous because besides being an excellent, fact-driven explanation of your point, you also managed quite nicely to appeal to readers' potential empathy and compassion for disabled people's continued exclusion.
Disappointing and irritating, but this article is fantastic and I bet it will make a difference in the way many people approach this topic. So you've made a difference. Thank you.
I’m not sure how I found this essay but there are tears in my eyes. Passing this along to my partner who is ensconced in their office down the short hall from where I sit in mine—in our shared home. They are the identified neurodivergent one but I repeat, there are tears in my eyes. Thank you!
Thank you for writing this!! So many amazing points and details. I really appreciate you sharing your own experiences, joys, and frustrations, and also covering a really wide and empathetic range of folks. I'll be thinking about this one for a long while.
Many great points. However, I think that the opposite can be true too. As a neurodivergent person, who is a therapist and who has been in my own therapy for most of my life now, the transition to virtual therapy sessions four years ago was extremely challenging for me, both as the therapist and the patient. The auditory processing took an enormous amount of work, and the halted flow of the interaction felt awkward, even painful sometimes. I needed more cues than were available. I have since adjusted significantly, but in-person still feels a lot better. I find that amount my patients who are neurodivergent in some form, there is a half and half mix, of some who do feel comfortable with a virtual format and some who prefer it.
I think the considerations are different, though, between one-on-one meetings and large conferences. In your situation, it makes perfect sense to work the way you need to, and any potential client for whom that is incompatible can hopefully find a different therapist to work with. In the case of a conference such as the one Devon describes, the only equitable thing to do is to make it as broadly inclusive as possible, acknowledging that it is simply not possible to guarantee 100% inclusion, as there will always be potential attendees with mutually incompatible needs.
I totally agree. And actually, depending on the nature of the conference, I have found that I am mostly attending virtual lectures/conferences now, mostly due to the major social anxiety that arises when people are milling around before and after and during breaks. And, this avoids any travel, which I hate anyway.
I should add, phone sessions are the bane of my existence, and I avoid them as much as possible (although with these as well, have come a long way compared to a few years ago).
I thought you might be interested in the DDS guiding values which are read at the beginning of each of our multiple-times-a-week peer support sessions:
Peer support guiding values
~We value all ways of showing up and sharing: camera on, camera off, verbally, in the chat. There is no need to share at all, just by being present we’re all part of the space and supporting each other.
~If you would like your message in the chat to be read aloud, simply add that to your share. If you want to speak but the conversation is moving very fast or you’re having trouble jumping in, raise your hand and the host will invite you to speak.
~ We value silence. If there is a natural pause after someone shares, it means that people are processing, thinking, gathering their thoughts for their own share, or typing in the chat. It never means that you said something wrong or awkward. People may also jump in immediately. That’s all part of the natural ebb and flow of the conversation.
~ There is no being late or leaving early. Feel free to come and go whenever, no need to explain or apologize, or to check out before leaving.
~ There is a weekly topic that serves as a starting point for shares. From there we spiral out and the conversation evolves naturally. Tangents and sidetracks are welcome and encouraged.
~ We are peers; we leave the professional ‘hats’ we might wear at the door. We do not speak from a place of authority and we do not give advice.
This all sounds lovely. <3
I love everything about this.
This made me weep. Everything I’ve been trying to say, everything I’ve felt for four years clear and validated here. Will be sharing this for a long time to come. Deepest gratitude.
Same.
THIS! Followed my wife around while she scooped cat boxes (her day) while reading the whole thing out loud. We kept echolalically repeating back choice phrases and words (we're both Autistic)! Thank you for speaking so eloquently and thoroughly on this CRITICAL issue that affects so many marginalized communities and too often is swept under the rug. I think the "powers that be" are all hoping that crushing student debt and a tax-payer funded genocide will make us forget the questions that have haunted us since 2021: "If it's not about productivity then what IS it about? What function do in-person requirements really serve?...or...Who do they serve? Why do they want to control and surveil our bodies no matter the cost? Why is that the MOST important thing to managers, CEOs, and board members? Why is it even more important than the thing we all thought mattered most to them - their own bank accounts?" Thank you for your time, your work, and your energy on this pale blue dot.
With most, if not all, of the people I've met in person and consider some flavor of friend, the relationship started online. I don't think that's a coincidence, it establishes a level of understanding without the burden of the socially mandated dancing around pretending to be something were not. (Surprise, most of these people either already knew they weren't neurotypical or found out soon after.)
I had a therapist at one point when in-person stuff was verboten during the early stages of covid who noticed how much more relaxed and at ease I was during phone appointments than in-person. Why? Because I didn't have to commute to the appointment through horrible traffic and push through chronic pain. Mind you, I'm not huge on phone conversations but even then the difference was stark. Not that this professional, who claimed to be knowledgeable about autism, understood this, because in-person is just so *magical*.
Two-thirds of autistic people fully unemployed... now there's a factoid to make you cry
I've had to send very similar emails (albeit shorter and less personal) to several conference organizers in my own field, who saw nothing wrong about talking about accessibility or DEI with no remote option for their conference. When I pointed out to one of them how ironic it was that a conference with a theme around "civic engagement, recognizing the significance of libraries in promoting equity, diversity, and truth," was inaccessible, I was thanked for my feedback (neurotypical for "shut the fuck up") and I was told that making the event inclusive and accessible was top of mind, and that senior leadership would get back to me.
I'm still waiting (I was not really waiting). The event was held in January of this year. I'm sure they're patting themselves on the back for what a bang-up job they did.
Next time, I will just send a link to this post. Thank you!
"I was thanked for my feedback (neurotypical for 'shut the fuck up')." It's funny because it's true. 100%
Deepest thanks for writing this and sharing it on Long COVID Awareness Day.
Excellent read. No reason why blended (virtual with f2f) events aren’t the norm now. Everyone wins.
Devon does it again. Another thoughtful, beautifully written, sensitive piece that serves to educate those of us who are not neurodiverse, and offer solidarity to those who are. In some ways I can relate to what he says because I feel a bit socially awkward, and not very confident in groups, and I hesitate to speak for fear I will stumble over my words because they don't flow so easily when I speak. I am much more comfortable writing because I can take my time to pick the best words. What I love best about his writing is his empathy. I am always so struck by how he reaches out to understand what people very different from himself might be experiencing, and then shows solidarity for their plight. Thank you for putting in the thought and effort and time to craft this article.
With my own particular neurotype/experience, I both agree with everything you said *and* I feel like in-person interactions can have their own advantages. I'm fine with the event producer acknowledging the "magic" of in-person interactions, but the problem is that they act as if the different-but-also-powerful magic of remote engagement that you spelled out in this piece didn't also exist. I find this blindness especially frustrating, because hybrid conferences exist! I attended a hybrid conference that was exceptionally well run for both the remote and in-person participants, so I know it can be done. And the more hybrid conferences people produce, the better we'll get at it.
Yes, I am a firm believer in addressing competing access needs and in a harm reductionist approach. Some people do need the stimulation and social facilitation of an in-person even. Many ADHDers, for instance! Unfortunately, in-person work and event spaces cater only to neuro-conforming profiles and exclude ADHDers in other ways anyway... a hybrid approach costs more in terms of prep and resources, but if we want to include as wide a swathe of ability types as possible, we have to go that route.
My heart sunk when I read the title and then soared when I continued reading, thank you for writing this.
Extremely frustrating that a symposium about disability was this ignorant! I really hope they actually read this response and thought deeply about what they were doing. Thank you so much for this post. It speaks to so many people's experiences with forced in-person participation, including my own. And as always, I learned a lot!
Nope, they just repeated that they'd only like an in-person event, and then apologized for using the word "special" in their first email, bizarrely. Classic liberal performative tweaking of language rather than policies.
Don't know why I'm surprised but struggling to believe that they double downed on their position 🙄 I found your piece so thorough and well argued that i can't believe it didn't sway them around!!
The things is, most people are not persuaded by facts or even by logical arguments. Behavior is more predicted by mood, social affiliation, and financial incentive.
Yep, absolutely- and it's infuriating. I work for a University in the UK and what you came up against with this conference made me think of how the EDI initiatives seem to work here - we decide the parameters of how you'd like to feel included and so long as your demands are within our narrow range of imagination/will, of course we're willing to do all things equality/diversity...
That makes their reply to you even more callous because besides being an excellent, fact-driven explanation of your point, you also managed quite nicely to appeal to readers' potential empathy and compassion for disabled people's continued exclusion.
Well... that's disappointing.
But extremely common.
Disappointing and irritating, but this article is fantastic and I bet it will make a difference in the way many people approach this topic. So you've made a difference. Thank you.
Gigantic barf-sigh. Disgusting.
I’m not sure how I found this essay but there are tears in my eyes. Passing this along to my partner who is ensconced in their office down the short hall from where I sit in mine—in our shared home. They are the identified neurodivergent one but I repeat, there are tears in my eyes. Thank you!
🔥🔥🔥🔥🔥🔥🔥🔥 as per usual! Thank you, Devon!
Hear hear! Thank you for this. I hope the organization finds ways to be more accessible.
Thank you for writing this!! So many amazing points and details. I really appreciate you sharing your own experiences, joys, and frustrations, and also covering a really wide and empathetic range of folks. I'll be thinking about this one for a long while.
Many great points. However, I think that the opposite can be true too. As a neurodivergent person, who is a therapist and who has been in my own therapy for most of my life now, the transition to virtual therapy sessions four years ago was extremely challenging for me, both as the therapist and the patient. The auditory processing took an enormous amount of work, and the halted flow of the interaction felt awkward, even painful sometimes. I needed more cues than were available. I have since adjusted significantly, but in-person still feels a lot better. I find that amount my patients who are neurodivergent in some form, there is a half and half mix, of some who do feel comfortable with a virtual format and some who prefer it.
I think the considerations are different, though, between one-on-one meetings and large conferences. In your situation, it makes perfect sense to work the way you need to, and any potential client for whom that is incompatible can hopefully find a different therapist to work with. In the case of a conference such as the one Devon describes, the only equitable thing to do is to make it as broadly inclusive as possible, acknowledging that it is simply not possible to guarantee 100% inclusion, as there will always be potential attendees with mutually incompatible needs.
I totally agree. And actually, depending on the nature of the conference, I have found that I am mostly attending virtual lectures/conferences now, mostly due to the major social anxiety that arises when people are milling around before and after and during breaks. And, this avoids any travel, which I hate anyway.
I should add, phone sessions are the bane of my existence, and I avoid them as much as possible (although with these as well, have come a long way compared to a few years ago).
Correction: *among my patients
*some who do feel comfortable with a virtual format and some who do not like it and find it difficult