WEBVTT

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thanks for uh showing up and being here

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everybody my name is Carmen

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um I use he him pronouns

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and I'd like to start by introducing

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everyone to the series and saying some

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thank yous

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um this is the third episode in what

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we're calling the pain series

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um it's part of a development process

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towards paying Pals

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um which is an online social platform

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in the form of a open world

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multiplayer video game

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um I'd like to thank Leonardo the

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international Society for art sciences

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and technology for giving me the

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opportunity

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to develop in Pals with the Berkeley

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disability lab

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I'd also like to thank the Canada

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Council for the Arts

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for the resources that are making this

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series possible

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um

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yeah and and

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oops

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sorry I'm hearing my own captions here

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with my in a robot voice

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um sorry

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um and I'd like to thank also Karen

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Nakamura and the Berkeley disability lab

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um as well as

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Kyoko nakahashi for managing the zoom

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today

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um and helping organize this event

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um

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before I mean Rebel uh get into a

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conversation and do an access check

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um

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I I'd like to just

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um

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start with some access notes so

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today we have our lovely interpreters

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present they include Topher

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and ROM will be on screen and then

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Valerie and Lori who will be working off

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screen today

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we all also have automatic captions

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um in zoom and I'm just going to invite

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Kyoko to come on and let folks know how

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they can access the captions and

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transcript if they don't already know

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how

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hi this is Kyoko speaking so at the very

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bottom of your Zoom screen uh there

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should be three dots with the word more

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underneath them if you press that there

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should be options for a live transcript

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full transcript and even subtitle

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settings depending on what your access

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needs are and if you have any questions

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feel free to direct message me via the

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chat function

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great thanks Kyoko

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um

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yeah and some additional access notes

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first I'd I'd like to say that I think

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of accessibility as an ongoing practice

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that is Guided by Community needs so in

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a way we are all helping to maintain the

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accessibility of this space

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um in the spirit of

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collect collective access I'd like to

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ask if everybody could

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um

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turn off their video and their sound as

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well

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um just to maximize

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um visibility for the interpreters and

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the presenters

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um I'd also like to ask if everyone

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could not use the chat

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um and if they do have any kind of

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emerging needs or questions

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um to direct message Kyoko

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um the chat will just trigger my screen

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reader and um my uh screen reader will

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announce everything in the chat in a in

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a robotic voice that will distract me so

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um I'd appreciate we didn't use chat

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um

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um I'd also like to say that this is a

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gentle pain informed space

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um identifying a space as gentle is

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something that I learned from Rebel

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um I need a gentle space and rebel does

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too so I'd invite you to help to hold a

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gentle space with us and um for each

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other and for yourselves

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um this is also a pain informed space so

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that means a few things first uh

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you know I encourage you to take comfort

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as you need it

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um it's also a place where you can show

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up sick or in a flare-up or on meds or

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medicate yourself

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um it's a non-medical space where you

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can be with your pain or distract

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yourself from it

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um there aren't any expectations on you

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today except for the expectation that

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you would honor our community agreements

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and help us

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home this safe and supportive space that

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we're holding today

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um I think it's all my access notes so

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I'd love to transition into an access

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check now and Rubble I thought we'd uh

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me and you would just check in today as

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a way to start our conversation

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um yeah how are you feeling would you

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like to go first I'm also happy to go

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first too

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um I'll be happy for you to go first

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Common if you're comfortable with that

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okay

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for sure thank you

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um

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foreign

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speaking again

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um I'm calling in from the stolen land

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of the Hopewell culture and Miami Nation

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that's

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m-y-a-a-m-i-a I'm an Uninvited Guest on

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this land

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um this place is colonially known as

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Mechanicsburg Ohio

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um I'm currently in a camper on a farm

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that produces corn and soybeans

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um

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to give you a sense of this place it's

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pretty quiet we're about 30 minutes away

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from the closest grocery store

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um

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there's also a large snapping turtle in

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a nearby Creek

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um and uh foxes coyotes deer

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skunk uh uh groundhogs bats and a lot of

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insects

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um yeah so that's where I am

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um I am a 40 year old artist with all

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its skin and black hair and a beard

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um today I am wearing a button-up shirt

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that's short sleeve it's a great color

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um wearing teal colored shorts and also

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a Panama style hat with a feather in it

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and um in terms of my access needs today

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I'm I'm actually carrying

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a a bit of additional pain

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um due to a recent flare-up

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um I have sickle cell and um I'm

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carrying a bunch of paint in my spine

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and in my joints today so

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um I'm just gonna move in the ways that

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I need to to find Comfort

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um I'm also you know sometimes pain it

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affects my processing my information

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recall so I'm just gonna be gentle my

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with myself if I'm feeling soggy and um

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as well as I said I'm a screen reader

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user so if we cannot use the chat that

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would be great

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um and that's me check

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thank you so much Carmen

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um my name is Rebel faila black Burnette

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I use he him pronouns as well

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um

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baola means good fortune Walks With

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Honor

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a name given to me why and from my

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ancestors

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I try to live up to the gift of this

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name

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I am a light-skinned color privileged

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multi-racial person of African descent

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I am gender expansive and same gender

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loving

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disabled

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I'm wearing my black and gray hair in a

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side bun

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I have blue clear large plastic glasses

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and behind me

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is a fuchsia wall it's a dark pink wall

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with a painting called two trees

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on my friend Andrew Reed Garner

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and it is an illustration of a living

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tree and a dying tree

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with the sun going down

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and a bookcase

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I am calling in from the lands of the

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Cowlitz

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Cascades

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confederated tribes of Grand Ronde

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and the Confederate confederated tribes

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of the silence Indians

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also known as Parker's Heights Portland

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Oregon

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I am an Uninvited settler here

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whose original peoples were given no

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choice in my being here

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in terms of access needs

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I have a traumatic brain injury that

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influences word finding and language

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I'm also in pain

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which can make it difficult to think

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clearly

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but I'm so happy to be here today

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so that is lending me some endorphins

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those happy chemicals

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and I think this is where I hand it back

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to Carmen

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unless you would like me to take on some

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of this

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um the next sentence

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no I I would love to thank you Ripple

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um I'd also like to say yeah if there

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are any emerging access needs in the

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room um

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um that folks can direct message kayoko

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and we can address those as they come up

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um

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um I'd like to start Rebel with maybe

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just giving you uh having you maybe

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share about your work and your practice

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uh what you spend your time doing

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um and and have you described that in

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your own words

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um as an a way to introduce yourself

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thanks Carmen

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um

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well first of all I would like to

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Express gratitude to my caregivers

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without whom I would not be able to do

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any of the work that I do in community

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um

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so for the most part I am committed to

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creating spaces

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or disabled bypoc that's black

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indigenous

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multiracial

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and other people of color

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gender expansive and same gender loving

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people

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creating gentle spaces that rejuvenate

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us rather than further drain our energy

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is one of the most important gifts I can

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give my community

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so I founded the organization called

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disability Justice streaming

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I am currently The Advisory Board

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president and director

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so when we hold board meetings we hold

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those in a gentle way

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um I'm a disability Justice practitioner

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and artist

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foreign

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I developed disability Justice dreaming

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sessions

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a dreaming session

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is a gentle 60-minute transformative

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audience performance

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centering those most impacted by systems

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of Oppression

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they begin with an access check-in

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and include time to reflect on and

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respond to

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various questions

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that support our imaginings and keep us

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grounded in community needs

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dreaming sessions

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are an opportunity to imagine a

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different

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more liberated world

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this requires creativity

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imagination

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and collectively

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the artist or facilitator is present to

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elicit the dreams

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and to reflect back the open presence of

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00:15:02.279 --> 00:15:04.579
community

291
00:15:10.040 --> 00:15:14.399
so in the

292
00:15:14.399 --> 00:15:17.959
practice of gentleness

293
00:15:18.300 --> 00:15:21.740
our researching interpreters

294
00:15:28.019 --> 00:15:32.839
in the interest of sinfulness

295
00:15:37.800 --> 00:15:42.000
um please feel welcome to get up

296
00:15:42.000 --> 00:15:44.519
move around

297
00:15:44.519 --> 00:15:47.940
hold yourself or Rock

298
00:15:47.940 --> 00:15:50.220
fidget

299
00:15:50.220 --> 00:15:53.399
color or Draw

300
00:15:53.399 --> 00:15:56.220
get a comfort item

301
00:15:56.220 --> 00:16:01.100
or use coping skills to stay regulated

302
00:16:03.060 --> 00:16:06.600
you are welcome to do all of the above

303
00:16:06.600 --> 00:16:09.839
as well as take breaks as needed

304
00:16:09.839 --> 00:16:14.360
drink and eat and so forth

305
00:16:14.399 --> 00:16:17.639
so your humanity is welcome in this

306
00:16:17.639 --> 00:16:20.519
space and your disability is welcome in

307
00:16:20.519 --> 00:16:23.000
this space

308
00:16:23.279 --> 00:16:25.820
check

309
00:16:27.839 --> 00:16:30.779
and circle

310
00:16:30.779 --> 00:16:32.100
um

311
00:16:32.100 --> 00:16:35.940
I I just want to say like just you know

312
00:16:35.940 --> 00:16:38.639
to everybody and to you right now that

313
00:16:38.639 --> 00:16:41.880
I've just learned uh so much about

314
00:16:41.880 --> 00:16:45.600
disability Justice and

315
00:16:45.600 --> 00:16:48.959
um an expansive kind of ways of

316
00:16:48.959 --> 00:16:52.320
practicing accessibility from

317
00:16:52.320 --> 00:16:55.380
um from seeing you and uh the way that

318
00:16:55.380 --> 00:16:59.279
you organize and hold space and um

319
00:16:59.279 --> 00:17:01.259
you know I'm really grateful for that

320
00:17:01.259 --> 00:17:02.820
and uh

321
00:17:02.820 --> 00:17:06.780
you know it's really allowed me to

322
00:17:06.780 --> 00:17:09.179
um know and explore different parts of

323
00:17:09.179 --> 00:17:11.040
myself too

324
00:17:11.040 --> 00:17:12.600
um entering some of the spaces that

325
00:17:12.600 --> 00:17:13.919
you've organized

326
00:17:13.919 --> 00:17:14.640
um

327
00:17:14.640 --> 00:17:17.339
and um you know it wasn't until we

328
00:17:17.339 --> 00:17:18.900
started getting to know each other a bit

329
00:17:18.900 --> 00:17:21.059
better and building a friendship that we

330
00:17:21.059 --> 00:17:22.799
realized that we both

331
00:17:22.799 --> 00:17:28.020
had um complex pain conditions so I I'd

332
00:17:28.020 --> 00:17:30.000
like maybe to

333
00:17:30.000 --> 00:17:34.380
um transition to uh inviting you to

334
00:17:34.380 --> 00:17:39.080
share about your relationship to pain

335
00:17:42.059 --> 00:17:44.700
thanks Carmen

336
00:17:44.700 --> 00:17:47.400
I'm really touched

337
00:17:47.400 --> 00:17:51.260
um so much from you as well

338
00:17:51.299 --> 00:17:54.539
my relationship with pain

339
00:17:54.539 --> 00:17:58.340
I have a chronic pain condition

340
00:17:59.760 --> 00:18:04.200
called complex regional pain syndrome

341
00:18:04.200 --> 00:18:07.100
type one

342
00:18:08.880 --> 00:18:11.580
type one means

343
00:18:11.580 --> 00:18:16.520
that it comes from a known nerve injury

344
00:18:18.240 --> 00:18:21.539
in my case a nerve injury sustained

345
00:18:21.539 --> 00:18:22.860
during

346
00:18:22.860 --> 00:18:26.280
bilateral total hip replacements that's

347
00:18:26.280 --> 00:18:29.360
both sides

348
00:18:29.400 --> 00:18:33.679
when I was 31 years old

349
00:18:38.760 --> 00:18:41.400
I needed the hip replacement

350
00:18:41.400 --> 00:18:44.820
due to repetitive stress injury uh I

351
00:18:44.820 --> 00:18:48.299
meant to add a Content note and Trigger

352
00:18:48.299 --> 00:18:50.460
warning for

353
00:18:50.460 --> 00:18:52.260
um mention

354
00:18:52.260 --> 00:18:55.440
of child sexual abuse

355
00:18:55.440 --> 00:18:58.440
mentioned

356
00:18:59.039 --> 00:19:03.020
of suicide behaviors

357
00:19:06.720 --> 00:19:08.340
and

358
00:19:08.340 --> 00:19:10.340
um

359
00:19:16.620 --> 00:19:18.780
okay

360
00:19:18.780 --> 00:19:21.179
um and it'll be brief and hopefully

361
00:19:21.179 --> 00:19:24.179
non-traumatizing

362
00:19:24.780 --> 00:19:25.860
um

363
00:19:25.860 --> 00:19:29.100
so I needed the hip replacement

364
00:19:29.100 --> 00:19:31.919
due to repetitive stress injury from

365
00:19:31.919 --> 00:19:35.059
child sexual abuse

366
00:19:35.460 --> 00:19:38.520
my leg bones

367
00:19:38.520 --> 00:19:42.360
were wearing through my pelvis

368
00:19:42.360 --> 00:19:45.600
into my abdomen

369
00:19:45.600 --> 00:19:49.220
where my organs live

370
00:19:59.400 --> 00:20:03.120
I also live with psychic pain

371
00:20:03.120 --> 00:20:07.460
and these two panes are connected

372
00:20:08.400 --> 00:20:11.400
I have been diagnosed with depression

373
00:20:11.400 --> 00:20:15.919
and PTSD since my early 20s

374
00:20:20.539 --> 00:20:23.820
and have made numerous suicide attempts

375
00:20:23.820 --> 00:20:26.600
since that time

376
00:20:31.320 --> 00:20:34.919
some have landed me in the ICU

377
00:20:34.919 --> 00:20:38.419
for days or weeks

378
00:20:38.640 --> 00:20:41.100
and some

379
00:20:41.100 --> 00:20:43.020
that

380
00:20:43.020 --> 00:20:45.240
didn't have an opportunity to gain

381
00:20:45.240 --> 00:20:47.640
traction

382
00:20:47.640 --> 00:20:52.039
because someone called for help in time

383
00:21:00.360 --> 00:21:03.059
um you know I believe it's my right

384
00:21:03.059 --> 00:21:05.400
to die

385
00:21:05.400 --> 00:21:08.720
and at the same time

386
00:21:09.840 --> 00:21:13.440
um with the right Community Support

387
00:21:13.440 --> 00:21:17.539
with the right family supports

388
00:21:18.059 --> 00:21:23.720
within our finances to eat and live

389
00:21:25.260 --> 00:21:29.120
that perspective really changes

390
00:21:32.700 --> 00:21:35.760
I lead a beautiful life with loving

391
00:21:35.760 --> 00:21:37.860
support system

392
00:21:37.860 --> 00:21:41.840
that consistently shows up for me

393
00:21:48.360 --> 00:21:51.120
and still I have episodes of the psychic

394
00:21:51.120 --> 00:21:52.380
pain due to living with

395
00:21:52.380 --> 00:21:54.480
intergenerational and interpersonal

396
00:21:54.480 --> 00:21:56.960
trauma

397
00:22:07.380 --> 00:22:10.559
finally I live with the pain and grief

398
00:22:10.559 --> 00:22:14.640
of being part of a missing generation

399
00:22:14.640 --> 00:22:17.580
in my family

400
00:22:17.580 --> 00:22:21.120
my mom and aunts were stolen by Catholic

401
00:22:21.120 --> 00:22:23.480
Services

402
00:22:23.580 --> 00:22:26.340
and adopt transracially when they were

403
00:22:26.340 --> 00:22:28.400
in second grade

404
00:22:28.400 --> 00:22:32.340
so that must have been about

405
00:22:32.340 --> 00:22:35.340
1950

406
00:22:41.600 --> 00:22:44.059
7th

407
00:22:44.059 --> 00:22:49.580
1960. I can't remember my name

408
00:22:50.640 --> 00:22:52.260
um

409
00:22:52.260 --> 00:22:56.100
the 1950s or 60s

410
00:22:56.100 --> 00:22:57.419
um

411
00:22:57.419 --> 00:23:00.299
they were adopted transracially in

412
00:23:00.299 --> 00:23:01.919
second grade

413
00:23:01.919 --> 00:23:04.799
and I mourned from my lost family my

414
00:23:04.799 --> 00:23:06.960
entire life

415
00:23:06.960 --> 00:23:09.900
and learn just this week

416
00:23:09.900 --> 00:23:13.020
that my family

417
00:23:13.020 --> 00:23:17.100
the brunettes of Indianapolis by way

418
00:23:17.100 --> 00:23:19.860
of the Lowcountry region in the United

419
00:23:19.860 --> 00:23:22.220
States

420
00:23:35.760 --> 00:23:38.400
um have mourned these last children for

421
00:23:38.400 --> 00:23:41.480
over 60 years

422
00:23:43.740 --> 00:23:48.179
my great-aunt MO is 84.

423
00:23:48.179 --> 00:23:51.179
and my cousin Vanetta

424
00:23:51.179 --> 00:23:53.220
her daughter

425
00:23:53.220 --> 00:23:56.700
told me that her mom grieved the stolen

426
00:23:56.700 --> 00:23:59.520
children for her entire life

427
00:23:59.520 --> 00:24:03.080
since she was in her teens

428
00:24:03.600 --> 00:24:06.539
so there's real pain in that

429
00:24:06.539 --> 00:24:11.179
and there's pain relief in connection

430
00:24:11.179 --> 00:24:14.340
gratitude for cousins joy that I want to

431
00:24:14.340 --> 00:24:16.760
reconnect

432
00:24:17.580 --> 00:24:20.340
Mutual fear at being a disappointment to

433
00:24:20.340 --> 00:24:22.760
the other

434
00:24:26.640 --> 00:24:29.520
my cousin Vanetta telling me not to

435
00:24:29.520 --> 00:24:32.820
worry about being queer and trans

436
00:24:32.820 --> 00:24:37.100
mitting her highly Catholic Family

437
00:24:38.760 --> 00:24:40.860
it's just some of the fear and pain that

438
00:24:40.860 --> 00:24:44.179
drains out with that

439
00:24:56.340 --> 00:24:58.820
check

440
00:25:01.700 --> 00:25:04.320
thank you so much trouble

441
00:25:04.320 --> 00:25:07.679
um for sharing your story and your

442
00:25:07.679 --> 00:25:11.100
experiences too and um it's very moving

443
00:25:11.100 --> 00:25:15.240
and I I think this is a really good time

444
00:25:15.240 --> 00:25:18.179
for a short break if folks are okay with

445
00:25:18.179 --> 00:25:19.080
that

446
00:25:19.080 --> 00:25:22.260
um and uh we could take a five minute

447
00:25:22.260 --> 00:25:24.659
break and um

448
00:25:24.659 --> 00:25:28.260
can I just check in to see when folks

449
00:25:28.260 --> 00:25:30.120
might need to come back then in Pacific

450
00:25:30.120 --> 00:25:32.760
time in Eastern time yeah of course this

451
00:25:32.760 --> 00:25:35.520
is Kyoko speaking so we'll come back

452
00:25:35.520 --> 00:25:40.620
around 2 10 p.m Pacific time and 5 10

453
00:25:40.620 --> 00:25:43.919
p.m uh Eastern Time

454
00:25:43.919 --> 00:25:47.179
great thank you

455
00:25:52.140 --> 00:25:55.260
all right everybody

456
00:25:55.260 --> 00:25:58.679
um it's Carmen speaking again

457
00:25:58.679 --> 00:26:01.860
um thanks for that time to rest and

458
00:26:01.860 --> 00:26:03.779
hydrate

459
00:26:03.779 --> 00:26:04.620
um

460
00:26:04.620 --> 00:26:08.640
and um yeah I so the second half of our

461
00:26:08.640 --> 00:26:10.140
event today

462
00:26:10.140 --> 00:26:12.480
um at the end we will have some time for

463
00:26:12.480 --> 00:26:13.919
questions

464
00:26:13.919 --> 00:26:17.100
um but right now I'd love to

465
00:26:17.100 --> 00:26:17.880
um

466
00:26:17.880 --> 00:26:21.659
have uh give some time to to Rebel to

467
00:26:21.659 --> 00:26:23.820
respond

468
00:26:23.820 --> 00:26:25.919
um to

469
00:26:25.919 --> 00:26:28.200
sorry I'm just

470
00:26:28.200 --> 00:26:32.299
maneuvering my screen reader

471
00:26:37.440 --> 00:26:39.720
uh I'd like I'd like to give some time

472
00:26:39.720 --> 00:26:41.760
to Rebel to respond to some questions

473
00:26:41.760 --> 00:26:43.799
that I sent him

474
00:26:43.799 --> 00:26:46.140
um and these are questions about uh

475
00:26:46.140 --> 00:26:48.659
various aspects of pain outside of a

476
00:26:48.659 --> 00:26:50.279
medical setting

477
00:26:50.279 --> 00:26:54.360
um and uh Rebel if you um you've chosen

478
00:26:54.360 --> 00:26:58.020
some questions to respond to and um I if

479
00:26:58.020 --> 00:27:01.080
you if you're uh okay with it uh maybe

480
00:27:01.080 --> 00:27:03.240
you could read the question that you're

481
00:27:03.240 --> 00:27:06.000
responding to so folks know what it is

482
00:27:06.000 --> 00:27:08.460
and um and then if there's any

483
00:27:08.460 --> 00:27:10.440
opportunity or if you'd like to you know

484
00:27:10.440 --> 00:27:13.380
be in conversation at any point um I'm

485
00:27:13.380 --> 00:27:15.600
happy to jump in but I'll take your lead

486
00:27:15.600 --> 00:27:16.919
on that

487
00:27:16.919 --> 00:27:20.580
um and so I'm passing it to Rebel

488
00:27:20.580 --> 00:27:23.159
thank you I can definitely

489
00:27:23.159 --> 00:27:26.220
um read the question and if there's any

490
00:27:26.220 --> 00:27:28.320
point at which you want to

491
00:27:28.320 --> 00:27:29.360
um reflect

492
00:27:29.360 --> 00:27:32.640
or have a conversation I'm also open to

493
00:27:32.640 --> 00:27:34.740
you queuing that as well

494
00:27:34.740 --> 00:27:38.299
okay thank you

495
00:27:38.580 --> 00:27:42.299
so one of the questions is

496
00:27:42.299 --> 00:27:44.700
what do you want others to know about

497
00:27:44.700 --> 00:27:46.799
your pain that you don't often get to

498
00:27:46.799 --> 00:27:50.779
share in a medicalized setting

499
00:27:53.760 --> 00:27:58.260
I feel tremendous grief about my pain

500
00:27:58.260 --> 00:28:01.260
I've been gaslit about pain since I was

501
00:28:01.260 --> 00:28:05.400
11 years old in 1994. when I had a

502
00:28:05.400 --> 00:28:08.059
bicycle accident

503
00:28:10.140 --> 00:28:12.779
I'm almost 40.

504
00:28:12.779 --> 00:28:15.419
and I'm still told you're too young to

505
00:28:15.419 --> 00:28:16.980
be in pain

506
00:28:16.980 --> 00:28:21.559
do yoga do physical therapy

507
00:28:21.779 --> 00:28:24.360
and the truth is that none of those

508
00:28:24.360 --> 00:28:26.880
could have helped the amount of pain I

509
00:28:26.880 --> 00:28:31.880
was in or the degeneration in my hips

510
00:28:32.460 --> 00:28:35.100
in 2013

511
00:28:35.100 --> 00:28:38.159
when a doctor finally ordered an x-ray

512
00:28:38.159 --> 00:28:39.659
of my hips

513
00:28:39.659 --> 00:28:42.659
I met with a surgeon within two weeks

514
00:28:42.659 --> 00:28:45.299
that's how severe it was the

515
00:28:45.299 --> 00:28:48.740
osteoarthritis in my hips

516
00:28:57.600 --> 00:29:03.299
in 2013 a doctor oh I already said that

517
00:29:03.299 --> 00:29:06.960
um he said I must be in so much pain

518
00:29:06.960 --> 00:29:10.020
because of the degeneration

519
00:29:10.020 --> 00:29:12.299
and

520
00:29:12.299 --> 00:29:13.980
it was the first time I had been

521
00:29:13.980 --> 00:29:17.460
validated for my pain

522
00:29:17.460 --> 00:29:21.080
um and all it took was an x-ray

523
00:29:23.580 --> 00:29:26.880
what could my life have been like had I

524
00:29:26.880 --> 00:29:30.500
been listened to all those years

525
00:29:33.840 --> 00:29:36.360
unfortunately the pain didn't end with

526
00:29:36.360 --> 00:29:38.779
the surgery

527
00:29:40.980 --> 00:29:44.159
after I recovered from the surgery I had

528
00:29:44.159 --> 00:29:45.779
a few months

529
00:29:45.779 --> 00:29:49.260
where I could ride a bike or walk about

530
00:29:49.260 --> 00:29:51.179
six miles a day

531
00:29:51.179 --> 00:29:55.880
which was just such a joyous experience

532
00:30:05.279 --> 00:30:08.399
then in the middle of a bike ride I had

533
00:30:08.399 --> 00:30:11.640
such excruciating pain in my leg

534
00:30:11.640 --> 00:30:13.799
that I had to call a friend to pick me

535
00:30:13.799 --> 00:30:16.640
up in their car

536
00:30:19.320 --> 00:30:21.419
I was diagnosed with moralgia

537
00:30:21.419 --> 00:30:23.220
parasthetica

538
00:30:23.220 --> 00:30:26.220
which can present as a loss of sensation

539
00:30:26.220 --> 00:30:28.679
in the outer thigh

540
00:30:28.679 --> 00:30:32.299
or as a burning pain

541
00:30:32.460 --> 00:30:36.240
mine presented as burning daily pain in

542
00:30:36.240 --> 00:30:37.980
my thighs

543
00:30:37.980 --> 00:30:41.960
and the pain just spread from there

544
00:30:51.419 --> 00:30:55.039
first down my right leg into the knee

545
00:30:55.039 --> 00:30:58.640
and then my foot

546
00:30:59.399 --> 00:31:03.919
then the pain mirrored in my left leg

547
00:31:15.480 --> 00:31:16.640
yeah

548
00:31:16.640 --> 00:31:19.740
while excruciating and leaving a person

549
00:31:19.740 --> 00:31:22.980
bed bound for much of their life

550
00:31:22.980 --> 00:31:25.320
some types of pain can also be

551
00:31:25.320 --> 00:31:28.039
generatives

552
00:31:28.340 --> 00:31:32.880
I can be creative because of my pain

553
00:31:32.880 --> 00:31:37.100
I have empathy because of my pain

554
00:31:42.240 --> 00:31:44.760
it teaches me

555
00:31:44.760 --> 00:31:47.100
and with the caregiving supports that I

556
00:31:47.100 --> 00:31:48.960
have

557
00:31:48.960 --> 00:31:51.720
it allows me to lead a rich intellectual

558
00:31:51.720 --> 00:31:54.020
life

559
00:31:58.679 --> 00:32:02.299
check on that question

560
00:32:02.539 --> 00:32:04.140
answerable

561
00:32:04.140 --> 00:32:07.559
um and thanks for sharing I you know I I

562
00:32:07.559 --> 00:32:11.100
will just cut in and say that um I would

563
00:32:11.100 --> 00:32:13.260
we are hipkin

564
00:32:13.260 --> 00:32:15.919
um I also had bilateral

565
00:32:15.919 --> 00:32:20.940
Replacements uh mine were in 2018

566
00:32:20.940 --> 00:32:24.779
um thereafter uh degeneration in my hips

567
00:32:24.779 --> 00:32:28.080
as a company that was a complication uh

568
00:32:28.080 --> 00:32:30.179
from sickle cell that that started when

569
00:32:30.179 --> 00:32:35.159
I was 16. I had a major episode that uh

570
00:32:35.159 --> 00:32:37.500
was very critical

571
00:32:37.500 --> 00:32:40.020
um and because some degeneration in my

572
00:32:40.020 --> 00:32:44.399
my ifs um and my shoulders as well so

573
00:32:44.399 --> 00:32:48.720
yeah I totally relate to that feeling of

574
00:32:48.720 --> 00:32:53.039
uh that relief but then also

575
00:32:53.039 --> 00:32:56.520
you know and the joy to of Mobility

576
00:32:56.520 --> 00:32:57.480
um

577
00:32:57.480 --> 00:32:58.320
um

578
00:32:58.320 --> 00:33:00.840
and learning how to walk again

579
00:33:00.840 --> 00:33:01.620
um

580
00:33:01.620 --> 00:33:03.779
and then also

581
00:33:03.779 --> 00:33:08.220
the Dual reality of also having complex

582
00:33:08.220 --> 00:33:10.440
pain condition

583
00:33:10.440 --> 00:33:13.260
um uh still so

584
00:33:13.260 --> 00:33:16.200
um yeah thank you

585
00:33:16.200 --> 00:33:18.000
yeah

586
00:33:18.000 --> 00:33:19.140
um

587
00:33:19.140 --> 00:33:22.340
it was only

588
00:33:22.440 --> 00:33:25.019
um this past year that I was finally

589
00:33:25.019 --> 00:33:27.059
diagnosed with complex regional pain

590
00:33:27.059 --> 00:33:29.600
syndrome

591
00:33:30.120 --> 00:33:33.179
um after multiple hospitalizations uh

592
00:33:33.179 --> 00:33:35.220
from being unable to walk

593
00:33:35.220 --> 00:33:38.100
or do my basic

594
00:33:38.100 --> 00:33:40.860
ADLs

595
00:33:40.860 --> 00:33:41.880
um

596
00:33:41.880 --> 00:33:45.360
so those are activities of daily living

597
00:33:45.360 --> 00:33:48.000
such as toileting

598
00:33:48.000 --> 00:33:50.419
um walking

599
00:33:50.760 --> 00:33:52.320
um

600
00:33:52.320 --> 00:33:55.559
hard to think right now

601
00:33:55.559 --> 00:33:57.740
um

602
00:33:58.380 --> 00:34:00.980
yeah

603
00:34:02.519 --> 00:34:04.740
um what social conditions impact your

604
00:34:04.740 --> 00:34:06.980
pain

605
00:34:07.200 --> 00:34:10.520
so oppressions like misogyny

606
00:34:10.520 --> 00:34:12.919
sadism

607
00:34:12.919 --> 00:34:15.780
transphobia racism

608
00:34:15.780 --> 00:34:18.060
impact my pain

609
00:34:18.060 --> 00:34:21.839
racism impacts me far less because of

610
00:34:21.839 --> 00:34:24.720
the color of my skin

611
00:34:24.720 --> 00:34:26.639
um

612
00:34:26.639 --> 00:34:28.619
but

613
00:34:28.619 --> 00:34:31.320
knowing that doctors are still trained

614
00:34:31.320 --> 00:34:33.679
to this day that black people

615
00:34:33.679 --> 00:34:36.440
biologically feel less pain

616
00:34:36.440 --> 00:34:39.020
intensifies my experience of pain

617
00:34:39.020 --> 00:34:43.440
because of the like I feel so much anger

618
00:34:43.440 --> 00:34:46.139
my black siblings and it makes my pain

619
00:34:46.139 --> 00:34:48.679
worse

620
00:34:57.119 --> 00:35:00.839
um I identify as gender expansive

621
00:35:00.839 --> 00:35:04.260
and used he him pronouns

622
00:35:04.260 --> 00:35:08.099
but I know that doctors blow me off

623
00:35:08.099 --> 00:35:11.820
because I am seen as a woman

624
00:35:11.820 --> 00:35:16.579
and I have a complex medical history

625
00:35:16.579 --> 00:35:21.480
including a legacy mental health history

626
00:35:21.480 --> 00:35:23.700
and so my impression is that they think

627
00:35:23.700 --> 00:35:27.060
I'm crazy or exaggerating or

628
00:35:27.060 --> 00:35:29.460
hysterical

629
00:35:29.460 --> 00:35:31.619
hypersensitive

630
00:35:31.619 --> 00:35:33.839
or neurologically conditioned to feel

631
00:35:33.839 --> 00:35:36.000
pain that's not there

632
00:35:36.000 --> 00:35:40.099
and so therefore I don't deserve care

633
00:35:41.359 --> 00:35:43.920
transphobia intensifies my pain because

634
00:35:43.920 --> 00:35:46.200
every time I get misgendered

635
00:35:46.200 --> 00:35:49.760
my pain intensifies

636
00:35:56.820 --> 00:35:59.040
the theme Here is that stressors

637
00:35:59.040 --> 00:36:01.859
intensify my pain

638
00:36:01.859 --> 00:36:06.320
and oppression causes stress

639
00:36:07.320 --> 00:36:09.800
check

640
00:36:10.980 --> 00:36:14.520
thanks for holding yeah those

641
00:36:14.520 --> 00:36:17.700
assumptions about who you are without

642
00:36:17.700 --> 00:36:20.400
taking your lead on how you want to be

643
00:36:20.400 --> 00:36:21.720
considered

644
00:36:21.720 --> 00:36:22.500
um

645
00:36:22.500 --> 00:36:27.359
I yeah I I think the reasons

646
00:36:27.359 --> 00:36:29.880
um that disability Justice is so

647
00:36:29.880 --> 00:36:31.800
powerful is because it creates an

648
00:36:31.800 --> 00:36:33.780
affirming

649
00:36:33.780 --> 00:36:36.540
space where we can

650
00:36:36.540 --> 00:36:37.920
choose

651
00:36:37.920 --> 00:36:40.700
the ways that we want to be identified

652
00:36:40.700 --> 00:36:44.400
and you know some of those ways of being

653
00:36:44.400 --> 00:36:47.040
in disability culture

654
00:36:47.040 --> 00:36:50.060
you know that that that we

655
00:36:50.060 --> 00:36:54.119
you know are just ourselves making terms

656
00:36:54.119 --> 00:36:54.780
for

657
00:36:54.780 --> 00:36:57.180
um in some cases and um

658
00:36:57.180 --> 00:36:58.980
that's very powerful

659
00:36:58.980 --> 00:37:00.540
um because I think we do live in a

660
00:37:00.540 --> 00:37:03.180
culture that is uh where there are a lot

661
00:37:03.180 --> 00:37:05.820
of assumptions cast on people who are in

662
00:37:05.820 --> 00:37:07.500
need of care

663
00:37:07.500 --> 00:37:08.400
um

664
00:37:08.400 --> 00:37:12.260
yeah thank you for sharing

665
00:37:16.320 --> 00:37:18.300
um the next question I was interested in

666
00:37:18.300 --> 00:37:21.420
was what cultural conditions impact your

667
00:37:21.420 --> 00:37:24.240
pain I think social and cultural

668
00:37:24.240 --> 00:37:27.800
conditions are related

669
00:37:27.859 --> 00:37:31.560
so there's an expectation that I can go

670
00:37:31.560 --> 00:37:33.119
places

671
00:37:33.119 --> 00:37:35.220
like just leave the house and go

672
00:37:35.220 --> 00:37:37.200
somewhere

673
00:37:37.200 --> 00:37:40.140
um for work for school for pleasure

674
00:37:40.140 --> 00:37:44.160
and then have an enjoyable experience

675
00:37:44.160 --> 00:37:46.280
um

676
00:37:46.680 --> 00:37:50.700
until I had caregiving until I had a

677
00:37:50.700 --> 00:37:53.040
wheelchair

678
00:37:53.040 --> 00:37:54.960
um

679
00:37:54.960 --> 00:37:59.460
this was a huge barrier for me and a

680
00:37:59.460 --> 00:38:02.540
huge impact on my own

681
00:38:02.540 --> 00:38:06.960
sense my own internalized ableism and my

682
00:38:06.960 --> 00:38:09.800
own sense of myself

683
00:38:10.140 --> 00:38:12.859
so

684
00:38:13.859 --> 00:38:17.220
going places can drain all of one's

685
00:38:17.220 --> 00:38:19.920
energy to the point that by the time

686
00:38:19.920 --> 00:38:21.960
they get there there's no energy left

687
00:38:21.960 --> 00:38:27.660
for the event or experience or class or

688
00:38:27.660 --> 00:38:30.020
job

689
00:38:31.079 --> 00:38:33.440
um rushing to get somewhere

690
00:38:33.440 --> 00:38:36.260
incorrect signage

691
00:38:36.260 --> 00:38:40.880
elevators that exist behind locked doors

692
00:38:40.880 --> 00:38:44.520
and no contact information to access

693
00:38:44.520 --> 00:38:46.260
them

694
00:38:46.260 --> 00:38:49.380
um but you're parked right by that

695
00:38:49.380 --> 00:38:53.300
elevator and can't

696
00:38:53.300 --> 00:38:57.180
like access the ground floor without the

697
00:38:57.180 --> 00:38:59.839
email later

698
00:39:00.240 --> 00:39:02.359
um

699
00:39:03.500 --> 00:39:06.060
unexpected maintenance at the only

700
00:39:06.060 --> 00:39:08.460
accessible entrance

701
00:39:08.460 --> 00:39:11.160
rooms that I literally cannot get into

702
00:39:11.160 --> 00:39:14.900
because of the way tables are organized

703
00:39:14.900 --> 00:39:17.400
restrooms I can't access due to my

704
00:39:17.400 --> 00:39:21.300
disability and also my trans status

705
00:39:21.300 --> 00:39:24.000
and so I just get increasingly sweaty

706
00:39:24.000 --> 00:39:25.859
and frustrated as I try to access

707
00:39:25.859 --> 00:39:27.960
cultural spaces

708
00:39:27.960 --> 00:39:30.480
and then there's no way to enjoy that

709
00:39:30.480 --> 00:39:33.240
even if I make it there on time because

710
00:39:33.240 --> 00:39:35.520
I'm just so exhausted and so frustrated

711
00:39:35.520 --> 00:39:39.920
and so angry at the ableism

712
00:39:40.740 --> 00:39:42.720
um

713
00:39:42.720 --> 00:39:45.240
I don't know if people here are familiar

714
00:39:45.240 --> 00:39:47.880
with Lolita emarisha

715
00:39:47.880 --> 00:39:51.839
that's w-a-l-i-d-a-h

716
00:39:53.060 --> 00:39:57.660
I am a r i s h a

717
00:39:57.660 --> 00:39:59.280
and

718
00:39:59.280 --> 00:40:00.540
um

719
00:40:00.540 --> 00:40:04.920
one time I was going to a

720
00:40:04.920 --> 00:40:08.300
talk with willida

721
00:40:08.300 --> 00:40:11.700
and I had so much frustration getting to

722
00:40:11.700 --> 00:40:12.839
the event

723
00:40:12.839 --> 00:40:15.359
that I realized

724
00:40:15.359 --> 00:40:18.060
just how disabled I was

725
00:40:18.060 --> 00:40:21.060
and that I needed to take a break from

726
00:40:21.060 --> 00:40:24.180
school because the environment was so

727
00:40:24.180 --> 00:40:26.780
disabling

728
00:40:34.680 --> 00:40:39.180
um but in situations like work in school

729
00:40:39.180 --> 00:40:41.640
we're expected to just confront and

730
00:40:41.640 --> 00:40:43.700
navigate all these hurdles

731
00:40:43.700 --> 00:40:47.040
maybe all of the above and one Journey

732
00:40:47.040 --> 00:40:48.780
and

733
00:40:48.780 --> 00:40:50.040
um

734
00:40:50.040 --> 00:40:54.060
challenges that we have with

735
00:40:54.060 --> 00:40:56.099
um

736
00:40:56.099 --> 00:40:58.380
systemic ableism

737
00:40:58.380 --> 00:41:03.200
are met with misunderstanding and apathy

738
00:41:04.320 --> 00:41:06.800
check

739
00:41:07.220 --> 00:41:11.220
yeah thank you Rebel and um

740
00:41:11.220 --> 00:41:13.680
yeah like a few things came up for me

741
00:41:13.680 --> 00:41:16.440
with that response which is one is that

742
00:41:16.440 --> 00:41:18.740
like

743
00:41:19.920 --> 00:41:21.839
and I think a lot of people in this call

744
00:41:21.839 --> 00:41:23.940
you know prescribed with this idea but

745
00:41:23.940 --> 00:41:26.700
like Universal accessibility is

746
00:41:26.700 --> 00:41:29.579
insufficient like this these Concepts

747
00:41:29.579 --> 00:41:33.180
around like compliance level measures

748
00:41:33.180 --> 00:41:35.940
that should like technically make uh

749
00:41:35.940 --> 00:41:38.339
space or experience accessible to

750
00:41:38.339 --> 00:41:39.359
someone

751
00:41:39.359 --> 00:41:42.780
don't account for you know the the

752
00:41:42.780 --> 00:41:45.660
experience of being chronically ill have

753
00:41:45.660 --> 00:41:49.020
having various intersections of EX of

754
00:41:49.020 --> 00:41:50.760
identity

755
00:41:50.760 --> 00:41:52.079
um

756
00:41:52.079 --> 00:41:54.359
and yeah and I think

757
00:41:54.359 --> 00:41:57.300
you know what what accessibility and the

758
00:41:57.300 --> 00:42:00.480
way that I've I've come to understand it

759
00:42:00.480 --> 00:42:02.640
um over the years like and I I think

760
00:42:02.640 --> 00:42:05.520
this is informed by you know my my time

761
00:42:05.520 --> 00:42:08.640
in hospital as a kid my experience

762
00:42:08.640 --> 00:42:12.359
navigating uh the education system as an

763
00:42:12.359 --> 00:42:14.760
undergrad which was not a great

764
00:42:14.760 --> 00:42:16.740
experience for me

765
00:42:16.740 --> 00:42:20.339
um but that accessibility needs to

766
00:42:20.339 --> 00:42:21.000
um

767
00:42:21.000 --> 00:42:24.599
well is about these social cultural and

768
00:42:24.599 --> 00:42:27.300
political conditions that inform your

769
00:42:27.300 --> 00:42:30.000
access and your agency

770
00:42:30.000 --> 00:42:33.300
um yeah and um you know when you were

771
00:42:33.300 --> 00:42:35.940
talking rebel I was thinking about the

772
00:42:35.940 --> 00:42:38.579
kind of space that you provide

773
00:42:38.579 --> 00:42:42.900
um with uh you know say even

774
00:42:42.900 --> 00:42:47.520
um your weekly create space

775
00:42:47.520 --> 00:42:50.400
um do you mind I don't know I we this

776
00:42:50.400 --> 00:42:53.579
wasn't in our our meeting notes but um

777
00:42:53.579 --> 00:42:55.920
would you like to describe create really

778
00:42:55.920 --> 00:42:57.960
briefly and just kind of the space that

779
00:42:57.960 --> 00:43:00.060
it provides folks

780
00:43:00.060 --> 00:43:01.980
sure

781
00:43:01.980 --> 00:43:04.099
um

782
00:43:04.859 --> 00:43:09.119
for create is a weekly online co-working

783
00:43:09.119 --> 00:43:13.079
Space by and for all deaf and disabled

784
00:43:13.079 --> 00:43:14.819
people

785
00:43:14.819 --> 00:43:17.520
it's a disability Justice centered

786
00:43:17.520 --> 00:43:20.480
co-working space

787
00:43:20.579 --> 00:43:24.119
um we include under the disabled

788
00:43:24.119 --> 00:43:25.920
umbrella people who are sick

789
00:43:25.920 --> 00:43:30.119
disabled mad or mentally ill

790
00:43:30.119 --> 00:43:33.240
death hard of hearing

791
00:43:33.240 --> 00:43:36.380
low vision blind

792
00:43:36.380 --> 00:43:38.220
deafblind

793
00:43:38.220 --> 00:43:40.079
neurodiverse

794
00:43:40.079 --> 00:43:43.940
or otherwise chronically ill

795
00:43:44.339 --> 00:43:47.339
could create crate takes place on

796
00:43:47.339 --> 00:43:50.460
Wednesdays from 1 to 3 P.M Pacific

797
00:43:50.460 --> 00:43:52.740
time which is

798
00:43:52.740 --> 00:43:55.740
um GMT minus seven

799
00:43:55.740 --> 00:43:57.900
herb create begins and ends with a

800
00:43:57.900 --> 00:43:59.220
check-in

801
00:43:59.220 --> 00:44:01.619
then participants are welcome to use the

802
00:44:01.619 --> 00:44:03.000
time how they wish

803
00:44:03.000 --> 00:44:05.819
people can go into breakout rooms to

804
00:44:05.819 --> 00:44:09.300
work silently or have a conversation

805
00:44:09.300 --> 00:44:11.940
people can be playful and use snapchat

806
00:44:11.940 --> 00:44:14.460
filters and giggle and

807
00:44:14.460 --> 00:44:17.520
do weird things

808
00:44:17.520 --> 00:44:19.640
um

809
00:44:20.700 --> 00:44:23.900
we build community

810
00:44:25.319 --> 00:44:28.560
we engage with new collaborations and

811
00:44:28.560 --> 00:44:31.079
relationships

812
00:44:31.079 --> 00:44:35.099
and we have an open source team of

813
00:44:35.099 --> 00:44:39.780
rotating philosophers facilitators

814
00:44:40.200 --> 00:44:43.560
um it was created by Diana yalahi and

815
00:44:43.560 --> 00:44:45.900
the Curiosity paradox

816
00:44:45.900 --> 00:44:48.960
and it's Now supported by disability

817
00:44:48.960 --> 00:44:52.440
Justice streaming my organization

818
00:44:52.440 --> 00:44:55.079
and calling up justice which is Claudia

819
00:44:55.079 --> 00:44:58.380
Alex project

820
00:44:59.359 --> 00:45:03.300
yeah and it's International so

821
00:45:03.300 --> 00:45:05.280
um you know our last facilitator was

822
00:45:05.280 --> 00:45:07.020
from St Lucia

823
00:45:07.020 --> 00:45:08.940
I'm living there

824
00:45:08.940 --> 00:45:13.140
and we have Canadians come and

825
00:45:13.140 --> 00:45:15.240
um sometimes people from

826
00:45:15.240 --> 00:45:17.220
New Zealand

827
00:45:17.220 --> 00:45:19.020
so

828
00:45:19.020 --> 00:45:20.640
yeah

829
00:45:20.640 --> 00:45:23.540
thank you

830
00:45:36.800 --> 00:45:39.540
how are you feeling Rebel

831
00:45:39.540 --> 00:45:42.060
um just in terms of energy level and

832
00:45:42.060 --> 00:45:45.000
everything and um do you feel like you'd

833
00:45:45.000 --> 00:45:47.460
like to share with any more responses to

834
00:45:47.460 --> 00:45:48.839
prompts or

835
00:45:48.839 --> 00:45:51.300
um move into good questions

836
00:45:51.300 --> 00:45:52.440
um

837
00:45:52.440 --> 00:45:54.540
um I have about two more really short

838
00:45:54.540 --> 00:45:57.119
ones that I'd like to share and then

839
00:45:57.119 --> 00:46:00.180
I've asked the question

840
00:46:00.180 --> 00:46:01.800
well

841
00:46:01.800 --> 00:46:02.460
um

842
00:46:02.460 --> 00:46:06.060
so um the question here is what

843
00:46:06.060 --> 00:46:09.119
descriptions do you use to describe your

844
00:46:09.119 --> 00:46:12.839
pain including analogies simile and

845
00:46:12.839 --> 00:46:15.960
metaphor if applicable

846
00:46:15.960 --> 00:46:17.280
so

847
00:46:17.280 --> 00:46:20.660
when I'm in a flare

848
00:46:27.359 --> 00:46:32.180
it feels like my body has caught on fire

849
00:46:33.900 --> 00:46:36.780
on a pretty regular basis

850
00:46:36.780 --> 00:46:38.819
it feels like my bones have been

851
00:46:38.819 --> 00:46:41.640
replaced by Broken Glass

852
00:46:41.640 --> 00:46:45.800
it's that nervy and sensitive

853
00:46:46.680 --> 00:46:49.319
I feel like I've been flayed alive like

854
00:46:49.319 --> 00:46:52.339
I have no skin

855
00:46:53.220 --> 00:46:55.140
every touch

856
00:46:55.140 --> 00:46:58.260
every movement of the Wind

857
00:46:58.260 --> 00:47:01.859
even the sheets as my body are

858
00:47:01.859 --> 00:47:06.079
excruciating to the point I could screen

859
00:47:07.319 --> 00:47:10.680
I'm used to it so I don't scream

860
00:47:10.680 --> 00:47:13.280
foreign

861
00:47:17.359 --> 00:47:19.560
especially like

862
00:47:19.560 --> 00:47:23.400
the broken glass metaphor it feels like

863
00:47:23.400 --> 00:47:25.740
it's just like this ground up

864
00:47:25.740 --> 00:47:28.760
glass and then every time I move

865
00:47:28.760 --> 00:47:32.520
even in the most subtle movement

866
00:47:32.520 --> 00:47:34.800
um is just

867
00:47:34.800 --> 00:47:35.599
um

868
00:47:35.599 --> 00:47:38.760
excruciatingly paintball

869
00:47:38.760 --> 00:47:42.720
and then my last question was

870
00:47:42.720 --> 00:47:45.060
what do you want the wider cultural to

871
00:47:45.060 --> 00:47:47.160
know about what it means to live with

872
00:47:47.160 --> 00:47:49.400
pain

873
00:47:49.680 --> 00:47:53.520
and I just wanted to say that we have a

874
00:47:53.520 --> 00:47:55.319
pain epidemic

875
00:47:55.319 --> 00:47:59.540
not an opioid epidemic

876
00:48:07.980 --> 00:48:10.740
um if someone needs morphine or Dilaudid

877
00:48:10.740 --> 00:48:12.720
to control their pain

878
00:48:12.720 --> 00:48:16.819
that could be completely legitimate

879
00:48:16.819 --> 00:48:18.780
I've heard

880
00:48:18.780 --> 00:48:21.720
we only give opioids to cancer patients

881
00:48:21.720 --> 00:48:24.980
and people who are dying

882
00:48:33.420 --> 00:48:36.300
but what about those of us who want to

883
00:48:36.300 --> 00:48:38.540
live

884
00:48:38.940 --> 00:48:41.160
how can we have

885
00:48:41.160 --> 00:48:45.119
any quality of life or function

886
00:48:45.119 --> 00:48:49.460
if you're unwilling to treat our pain

887
00:48:50.579 --> 00:48:53.060
check

888
00:48:53.060 --> 00:48:54.740
able

889
00:48:54.740 --> 00:48:58.260
yes you're

890
00:48:58.260 --> 00:49:01.140
that's that's true right you know I I

891
00:49:01.140 --> 00:49:04.640
rely on um on daylighted and

892
00:49:04.640 --> 00:49:08.880
hydromorphone piece of drugs when I'm

893
00:49:08.880 --> 00:49:12.060
um having a Sickle Cell related pain and

894
00:49:12.060 --> 00:49:17.280
just my day my my flare-ups as well and

895
00:49:17.280 --> 00:49:20.220
um I know in some states like I I have

896
00:49:20.220 --> 00:49:22.560
the ability to see a complex pain

897
00:49:22.560 --> 00:49:25.560
specialist That's covered by my

898
00:49:25.560 --> 00:49:27.900
Healthcare in Canada

899
00:49:27.900 --> 00:49:28.560
um

900
00:49:28.560 --> 00:49:31.079
and I know a lot of friends in the

901
00:49:31.079 --> 00:49:31.980
states

902
00:49:31.980 --> 00:49:33.900
um some of them with sickle cell and

903
00:49:33.900 --> 00:49:36.480
other complex pain conditions in you

904
00:49:36.480 --> 00:49:39.000
know where they're living can't even see

905
00:49:39.000 --> 00:49:41.700
a doctor that you know uh they can see

906
00:49:41.700 --> 00:49:43.500
consistently

907
00:49:43.500 --> 00:49:46.500
um and also you know there's barriers to

908
00:49:46.500 --> 00:49:48.540
receiving more than

909
00:49:48.540 --> 00:49:51.599
um three days uh worth of payment pain

910
00:49:51.599 --> 00:49:53.520
meds

911
00:49:53.520 --> 00:49:55.440
um and um there definitely is advocacy

912
00:49:55.440 --> 00:49:56.700
around this

913
00:49:56.700 --> 00:49:58.819
um to kind of address those barriers

914
00:49:58.819 --> 00:50:01.319
from state to state

915
00:50:01.319 --> 00:50:05.220
um but this really kind of gets at an

916
00:50:05.220 --> 00:50:07.980
issue that I've I've really been

917
00:50:07.980 --> 00:50:12.780
um you know interested in as uh in as as

918
00:50:12.780 --> 00:50:15.900
um harm reduction uh and you know access

919
00:50:15.900 --> 00:50:18.900
to Safe supply of drugs as a form of

920
00:50:18.900 --> 00:50:21.060
disability Justice

921
00:50:21.060 --> 00:50:23.339
um a lot of folks I think I mentioned

922
00:50:23.339 --> 00:50:25.140
this in our last uh pain series

923
00:50:25.140 --> 00:50:27.839
conversation uh with Toronto Franklin

924
00:50:27.839 --> 00:50:31.740
and um just the fact that

925
00:50:31.740 --> 00:50:34.619
um you know folks who a lot of drug

926
00:50:34.619 --> 00:50:35.940
users

927
00:50:35.940 --> 00:50:37.200
um who

928
00:50:37.200 --> 00:50:37.859
um

929
00:50:37.859 --> 00:50:40.319
you know have they are people who have

930
00:50:40.319 --> 00:50:42.839
been alienated from the medical system

931
00:50:42.839 --> 00:50:44.940
um and they are they're policed and

932
00:50:44.940 --> 00:50:46.380
targeted

933
00:50:46.380 --> 00:50:51.000
um for their needs and um uh for pain

934
00:50:51.000 --> 00:50:53.760
relief for medical care that they're

935
00:50:53.760 --> 00:50:56.040
alienated from so

936
00:50:56.040 --> 00:50:59.460
um yeah I think drawing awareness to you

937
00:50:59.460 --> 00:51:01.859
know these connections between

938
00:51:01.859 --> 00:51:04.260
um just disability Justice and harm

939
00:51:04.260 --> 00:51:06.180
reduction like these are ways that we

940
00:51:06.180 --> 00:51:09.780
have been uh and racialized folks queer

941
00:51:09.780 --> 00:51:12.540
folks have been caring for each other

942
00:51:12.540 --> 00:51:15.000
um you know whether they use

943
00:51:15.000 --> 00:51:16.859
um that term disability Justice or not

944
00:51:16.859 --> 00:51:19.160
these are forms of Community Care

945
00:51:19.160 --> 00:51:21.960
networks that people make to you know

946
00:51:21.960 --> 00:51:24.839
create overdose prevention sites for

947
00:51:24.839 --> 00:51:26.400
example

948
00:51:26.400 --> 00:51:29.700
um yeah or or just finding drugs that

949
00:51:29.700 --> 00:51:31.260
aren't toxic

950
00:51:31.260 --> 00:51:34.020
um so yeah

951
00:51:34.020 --> 00:51:36.119
yeah

952
00:51:36.119 --> 00:51:36.740
yeah

953
00:51:36.740 --> 00:51:39.540
you know I've been terrified for most of

954
00:51:39.540 --> 00:51:41.339
my life to ask for pain medications

955
00:51:41.339 --> 00:51:43.440
because I don't want to be seen as a

956
00:51:43.440 --> 00:51:46.140
drug seeker and then alienated from the

957
00:51:46.140 --> 00:51:48.240
medical system like you mentioned

958
00:51:48.240 --> 00:51:51.900
you know and so

959
00:51:51.900 --> 00:51:53.040
um

960
00:51:53.040 --> 00:51:55.319
I think finally

961
00:51:55.319 --> 00:51:57.359
I was able to get into a pain clinic

962
00:51:57.359 --> 00:52:00.660
that does medication management

963
00:52:00.660 --> 00:52:04.619
um so that was a huge benefit

964
00:52:04.619 --> 00:52:05.579
um

965
00:52:05.579 --> 00:52:08.220
and

966
00:52:08.220 --> 00:52:10.800
I think is just being so non-functional

967
00:52:10.800 --> 00:52:13.980
and bed bound by pain I think people

968
00:52:13.980 --> 00:52:16.200
finally start to understand part of my

969
00:52:16.200 --> 00:52:18.740
experience

970
00:52:20.280 --> 00:52:21.780
but

971
00:52:21.780 --> 00:52:23.099
you know that was really difficult

972
00:52:23.099 --> 00:52:25.200
experience to go through

973
00:52:25.200 --> 00:52:28.740
so it's hard to

974
00:52:28.740 --> 00:52:32.480
get ones knees masks

975
00:52:42.740 --> 00:52:46.140
all right well I think it's a great time

976
00:52:46.140 --> 00:52:49.260
now to uh take some questions

977
00:52:49.260 --> 00:52:52.380
um if anybody has them and

978
00:52:52.380 --> 00:52:54.920
um maybe

979
00:52:54.920 --> 00:52:57.119
I don't know the best way to do this

980
00:52:57.119 --> 00:52:59.579
should we just get folks to unmute now

981
00:52:59.579 --> 00:53:03.119
that we kind of um yeah we've been in

982
00:53:03.119 --> 00:53:05.160
the zoom for a while and just uh either

983
00:53:05.160 --> 00:53:07.980
unmute or go on camera to sign if they

984
00:53:07.980 --> 00:53:09.119
need to

985
00:53:09.119 --> 00:53:12.000
um uh to ask questions that worked for

986
00:53:12.000 --> 00:53:13.020
me

987
00:53:13.020 --> 00:53:15.440
thank you

988
00:53:15.900 --> 00:53:18.440
right

989
00:53:24.059 --> 00:53:27.599
hi this is Kyoko speaking I don't

990
00:53:27.599 --> 00:53:30.000
necessarily have a question but I wanted

991
00:53:30.000 --> 00:53:33.000
to say thank you for

992
00:53:33.000 --> 00:53:35.700
being here and sharing your experience

993
00:53:35.700 --> 00:53:38.819
it feels really validating

994
00:53:38.819 --> 00:53:43.940
um on my end and I really appreciate it

995
00:53:45.059 --> 00:53:48.180
I'm glad it's validating and I'm so

996
00:53:48.180 --> 00:53:50.040
sorry that you're also experiencing

997
00:53:50.040 --> 00:53:53.000
something similar

998
00:53:53.520 --> 00:53:54.660
thank you

999
00:53:54.660 --> 00:53:56.839
thank you

1000
00:54:03.900 --> 00:54:07.020
hi Rebel this is Grant I use they them

1001
00:54:07.020 --> 00:54:09.240
pronouns

1002
00:54:09.240 --> 00:54:12.200
um could you talk about

1003
00:54:12.200 --> 00:54:16.020
examples of ways that

1004
00:54:16.020 --> 00:54:18.300
um anyone in your life if it's a care

1005
00:54:18.300 --> 00:54:22.319
provider or doctor or

1006
00:54:22.319 --> 00:54:25.980
um someone socially has really shown up

1007
00:54:25.980 --> 00:54:28.619
for you in your pain in ways that have

1008
00:54:28.619 --> 00:54:31.819
been supportive

1009
00:54:36.660 --> 00:54:41.940
um one of my caregivers and Friends

1010
00:54:41.940 --> 00:54:44.059
um

1011
00:54:49.800 --> 00:54:52.740
it's hard to describe the amount of

1012
00:54:52.740 --> 00:54:56.220
access intimacy we shared

1013
00:54:56.220 --> 00:54:59.520
um they are also

1014
00:54:59.520 --> 00:55:03.020
queer and trans non-binary

1015
00:55:03.020 --> 00:55:04.800
and

1016
00:55:04.800 --> 00:55:06.859
um

1017
00:55:07.099 --> 00:55:09.599
they were the first person to help me

1018
00:55:09.599 --> 00:55:11.640
bathe

1019
00:55:11.640 --> 00:55:14.040
um as a caregiver

1020
00:55:14.040 --> 00:55:16.020
and to

1021
00:55:16.020 --> 00:55:17.819
um

1022
00:55:17.819 --> 00:55:19.559
you know help me take care of my hair

1023
00:55:19.559 --> 00:55:21.780
and other things that I had previously

1024
00:55:21.780 --> 00:55:25.079
been able to do independently

1025
00:55:25.079 --> 00:55:26.940
um

1026
00:55:26.940 --> 00:55:28.740
and

1027
00:55:28.740 --> 00:55:32.579
they were so gentle and so kind

1028
00:55:32.579 --> 00:55:35.780
and so trauma informed

1029
00:55:35.780 --> 00:55:38.640
that it felt safe

1030
00:55:38.640 --> 00:55:42.319
to have that experience

1031
00:55:45.119 --> 00:55:47.400
I also have

1032
00:55:47.400 --> 00:55:48.599
um

1033
00:55:48.599 --> 00:55:52.200
chronic bladder pain and

1034
00:55:52.200 --> 00:55:53.280
um

1035
00:55:53.280 --> 00:55:56.220
like overactive bladder and things that

1036
00:55:56.220 --> 00:55:57.900
go along with that

1037
00:55:57.900 --> 00:56:02.099
and I was working with my

1038
00:56:02.099 --> 00:56:04.859
um your organicologist

1039
00:56:04.859 --> 00:56:07.859
and

1040
00:56:07.859 --> 00:56:11.040
he just kept saying

1041
00:56:11.040 --> 00:56:14.579
you know don't Gaslight yourself you

1042
00:56:14.579 --> 00:56:18.180
don't have to justify why you need care

1043
00:56:18.180 --> 00:56:19.680
um and really put me in the driver's

1044
00:56:19.680 --> 00:56:22.520
seat in terms of making the decision

1045
00:56:22.520 --> 00:56:26.400
about what type of treatment I wanted

1046
00:56:26.400 --> 00:56:28.859
and you know he was just there to

1047
00:56:28.859 --> 00:56:32.760
provide me with information but

1048
00:56:32.760 --> 00:56:35.640
what treatment I received was my

1049
00:56:35.640 --> 00:56:39.599
decision because I know my body best

1050
00:56:39.599 --> 00:56:43.140
and so that was really uplifting

1051
00:56:43.140 --> 00:56:46.140
experience

1052
00:56:47.400 --> 00:56:49.619
and

1053
00:56:49.619 --> 00:56:52.500
yeah you know

1054
00:56:52.500 --> 00:56:55.680
I also remember when I was in a sex

1055
00:56:55.680 --> 00:57:00.420
worker Clinic back in like 2002

1056
00:57:00.420 --> 00:57:04.319
um a community health Outreach worker

1057
00:57:04.319 --> 00:57:06.300
asked me

1058
00:57:06.300 --> 00:57:08.460
what I was interested in doing with my

1059
00:57:08.460 --> 00:57:12.240
life in addition to doing sex work or

1060
00:57:12.240 --> 00:57:15.000
you know like Transit management pain

1061
00:57:15.000 --> 00:57:16.140
relaxation

1062
00:57:16.140 --> 00:57:19.140
and he told me about

1063
00:57:19.140 --> 00:57:23.040
um like HIV prevention work and sexual

1064
00:57:23.040 --> 00:57:24.599
violence prevention work that was

1065
00:57:24.599 --> 00:57:25.800
happening at the community college

1066
00:57:25.800 --> 00:57:27.359
nearby

1067
00:57:27.359 --> 00:57:30.359
and I was able to get in to these

1068
00:57:30.359 --> 00:57:31.819
courses

1069
00:57:31.819 --> 00:57:33.920
through like

1070
00:57:33.920 --> 00:57:36.800
supports for at-risk youth

1071
00:57:36.800 --> 00:57:40.380
and it transformed my life and I

1072
00:57:40.380 --> 00:57:41.880
wouldn't be doing disability Justice

1073
00:57:41.880 --> 00:57:45.380
work now if I hadn't had those

1074
00:57:45.380 --> 00:57:48.780
experiences in community

1075
00:57:48.780 --> 00:57:53.160
of people who are living with

1076
00:57:53.160 --> 00:57:58.440
um addiction people who were

1077
00:57:58.440 --> 00:58:00.480
um doing some more work and had life

1078
00:58:00.480 --> 00:58:03.540
experiences similar to mine

1079
00:58:03.540 --> 00:58:06.960
um and so that really helped you know

1080
00:58:06.960 --> 00:58:08.880
turn down the

1081
00:58:08.880 --> 00:58:12.300
needle on how much pain I was in at

1082
00:58:12.300 --> 00:58:16.700
times you know having that validation

1083
00:58:19.140 --> 00:58:20.880
does that kind of get your question

1084
00:58:20.880 --> 00:58:23.540
Grant

1085
00:58:23.579 --> 00:58:26.900
it does thank you

1086
00:58:45.839 --> 00:58:49.079
it's time for I think maybe two

1087
00:58:49.079 --> 00:58:51.440
questions

1088
00:59:05.339 --> 00:59:07.400
um

1089
00:59:08.520 --> 00:59:12.900
I remember I I'd love to if it's okay to

1090
00:59:12.900 --> 00:59:15.420
to ask you to respond to one of the

1091
00:59:15.420 --> 00:59:18.660
prompts on that um on that list that I

1092
00:59:18.660 --> 00:59:20.220
sent you

1093
00:59:20.220 --> 00:59:21.059
um

1094
00:59:21.059 --> 00:59:23.099
which is like what's what's your vision

1095
00:59:23.099 --> 00:59:26.040
for a pain informed World

1096
00:59:26.040 --> 00:59:26.940
um

1097
00:59:26.940 --> 00:59:31.040
if you if you'd like to answer that

1098
00:59:34.940 --> 00:59:41.040
yeah I think that is so far out of my

1099
00:59:41.040 --> 00:59:43.380
realm of conception

1100
00:59:43.380 --> 00:59:48.119
that is I do respond to that question

1101
00:59:48.119 --> 00:59:49.619
um

1102
00:59:49.619 --> 00:59:52.760
you know I think

1103
00:59:56.819 --> 01:00:00.260
um being pain informed

1104
01:00:00.319 --> 01:00:02.359
means

1105
01:00:02.359 --> 01:00:04.920
providing gentle and comfortable space

1106
01:00:04.920 --> 01:00:06.540
for people

1107
01:00:06.540 --> 01:00:09.799
it means

1108
01:00:11.099 --> 01:00:15.020
having lots of

1109
01:00:15.440 --> 01:00:17.880
accessible parking spots

1110
01:00:17.880 --> 01:00:21.780
near you know like throughout the city

1111
01:00:21.780 --> 01:00:23.940
throughout throughout the neighborhood

1112
01:00:23.940 --> 01:00:26.780
you know near

1113
01:00:26.780 --> 01:00:30.059
restaurants near

1114
01:00:30.059 --> 01:00:33.540
um museums and stuff like that you know

1115
01:00:33.540 --> 01:00:35.579
a lot of times those spots are taken

1116
01:00:35.579 --> 01:00:38.579
because there are so few

1117
01:00:38.579 --> 01:00:40.020
um and then

1118
01:00:40.020 --> 01:00:44.579
the journey to the end point is really

1119
01:00:44.579 --> 01:00:45.720
far

1120
01:00:45.720 --> 01:00:49.160
and really exhausting

1121
01:00:49.380 --> 01:00:50.220
um

1122
01:00:50.220 --> 01:00:52.799
yeah I think there would be ramps

1123
01:00:52.799 --> 01:00:56.160
and wheelchairs that are adjusted just

1124
01:00:56.160 --> 01:00:59.119
for convert

1125
01:00:59.160 --> 01:00:59.940
um

1126
01:00:59.940 --> 01:01:02.940
and also you know I've started to build

1127
01:01:02.940 --> 01:01:05.579
that a little bit in my home

1128
01:01:05.579 --> 01:01:08.520
which is um you know I have my bedroom

1129
01:01:08.520 --> 01:01:10.980
my bedroom's pretty large

1130
01:01:10.980 --> 01:01:14.160
and so I have

1131
01:01:14.160 --> 01:01:17.520
um a recliner in my room and I have

1132
01:01:17.520 --> 01:01:19.319
something called a cuddle lounger which

1133
01:01:19.319 --> 01:01:21.780
is like a love seat that's round

1134
01:01:21.780 --> 01:01:24.900
and we pull those near my bed

1135
01:01:24.900 --> 01:01:28.079
so folks can visit with me while I'm in

1136
01:01:28.079 --> 01:01:30.319
bed

1137
01:01:30.480 --> 01:01:32.640
um and so I think that's a real gift I

1138
01:01:32.640 --> 01:01:34.500
used to have a couch in my room

1139
01:01:34.500 --> 01:01:37.500
with I just needed the office space once

1140
01:01:37.500 --> 01:01:40.339
Cove had started

1141
01:01:40.859 --> 01:01:42.859
um

1142
01:01:45.599 --> 01:01:49.460
yeah that's okay thank you

1143
01:01:51.000 --> 01:01:55.140
hi this is Kyoko speaking uh I have a

1144
01:01:55.140 --> 01:01:58.140
question from azure

1145
01:01:58.140 --> 01:01:59.520
um

1146
01:01:59.520 --> 01:02:02.460
they would like to ask Rebel if he could

1147
01:02:02.460 --> 01:02:05.480
share a bit more of how disability

1148
01:02:05.480 --> 01:02:10.500
justices principle of leadership

1149
01:02:10.500 --> 01:02:13.740
of the most impacted in forms of

1150
01:02:13.740 --> 01:02:18.079
dynamics of dreaming sessions

1151
01:02:20.900 --> 01:02:25.040
yeah well first of all

1152
01:02:25.079 --> 01:02:28.260
um it's an affinity space

1153
01:02:28.260 --> 01:02:31.920
so it's a space that is only

1154
01:02:31.920 --> 01:02:34.440
for people who are

1155
01:02:34.440 --> 01:02:41.599
under the lgbtq 2sia plus umbrella

1156
01:02:42.359 --> 01:02:46.520
and people who are black indigenous

1157
01:02:46.520 --> 01:02:50.160
multiracial and other people of color

1158
01:02:50.160 --> 01:02:52.619
and people who are sex workers current

1159
01:02:52.619 --> 01:02:54.240
or former

1160
01:02:54.240 --> 01:02:57.900
and sex trafficking survivors

1161
01:02:57.900 --> 01:03:02.099
so that's the group that is welcome in

1162
01:03:02.099 --> 01:03:04.980
the dreaming session

1163
01:03:04.980 --> 01:03:07.740
um so already we are centering some of

1164
01:03:07.740 --> 01:03:09.240
those who are most impacted by

1165
01:03:09.240 --> 01:03:11.839
oppressions

1166
01:03:12.000 --> 01:03:12.960
um

1167
01:03:12.960 --> 01:03:15.420
and then

1168
01:03:15.420 --> 01:03:17.700
we co-create the questions that we'll

1169
01:03:17.700 --> 01:03:19.740
ask

1170
01:03:19.740 --> 01:03:22.380
um that will reflect on

1171
01:03:22.380 --> 01:03:24.599
so I think that is really

1172
01:03:24.599 --> 01:03:27.299
um centering leadership

1173
01:03:27.299 --> 01:03:30.420
um anyone can participate in that

1174
01:03:30.420 --> 01:03:33.119
process and

1175
01:03:33.119 --> 01:03:36.359
um we keep a jamboard which is

1176
01:03:36.359 --> 01:03:37.500
um

1177
01:03:37.500 --> 01:03:41.040
like a white board with Post-it nuts

1178
01:03:41.040 --> 01:03:43.619
honest through Google

1179
01:03:43.619 --> 01:03:45.599
and

1180
01:03:45.599 --> 01:03:46.740
um

1181
01:03:46.740 --> 01:03:48.480
so that

1182
01:03:48.480 --> 01:03:51.900
um collects the information that's

1183
01:03:51.900 --> 01:03:54.359
shared by each person

1184
01:03:54.359 --> 01:03:56.180
um it's anonymous

1185
01:03:56.180 --> 01:04:00.599
but the information is made is you know

1186
01:04:00.599 --> 01:04:02.940
shared

1187
01:04:02.940 --> 01:04:05.660
um so we can go back to it later

1188
01:04:05.660 --> 01:04:10.140
and then find the

1189
01:04:10.140 --> 01:04:12.240
um Suggestions by people

1190
01:04:12.240 --> 01:04:14.160
for how she move forward with the

1191
01:04:14.160 --> 01:04:15.680
organization

1192
01:04:15.680 --> 01:04:18.660
suggestions and ideas about what

1193
01:04:18.660 --> 01:04:22.440
programs they're interested in or how we

1194
01:04:22.440 --> 01:04:25.920
can be together in different ways

1195
01:04:25.920 --> 01:04:27.900
um

1196
01:04:27.900 --> 01:04:31.460
yeah it's a second at your question

1197
01:04:32.579 --> 01:04:36.500
I'm having some brain fog today

1198
01:04:40.799 --> 01:04:43.520
thanks

1199
01:04:43.859 --> 01:04:45.680
um

1200
01:04:45.680 --> 01:04:48.780
yeah this is speaking Yeah Azure said

1201
01:04:48.780 --> 01:04:51.720
yes thank you

1202
01:04:51.720 --> 01:04:54.599
awesome okay well

1203
01:04:54.599 --> 01:04:58.559
I think this is a great end to our event

1204
01:04:58.559 --> 01:04:59.520
um

1205
01:04:59.520 --> 01:05:02.400
you know I'd like to to close by just

1206
01:05:02.400 --> 01:05:03.900
thanking

1207
01:05:03.900 --> 01:05:07.559
um you Rebel for sharing and um you know

1208
01:05:07.559 --> 01:05:10.559
opening up with us and um sharing your

1209
01:05:10.559 --> 01:05:13.319
experiences and um I'd like to thank

1210
01:05:13.319 --> 01:05:16.500
everybody here in the zoom room and our

1211
01:05:16.500 --> 01:05:19.680
ASL interpreters thank you so much

1212
01:05:19.680 --> 01:05:21.660
um and

1213
01:05:21.660 --> 01:05:24.720
um I I'd love to invite everybody to

1214
01:05:24.720 --> 01:05:26.640
just uh put messages of love and

1215
01:05:26.640 --> 01:05:29.460
appreciation in the chat now for rebel

1216
01:05:29.460 --> 01:05:32.160
and for pain series if you like

1217
01:05:32.160 --> 01:05:33.240
um

1218
01:05:33.240 --> 01:05:36.299
I'd I'd be happy to hear the cacophony

1219
01:05:36.299 --> 01:05:40.400
of uh messages

1220
01:05:49.579 --> 01:05:53.720
those are coming in all

1221
01:05:54.240 --> 01:05:56.400
I'll just say our next event in

1222
01:05:56.400 --> 01:05:58.940
September

1223
01:06:01.859 --> 01:06:05.720
okay cool thank you Karen

1224
01:06:09.240 --> 01:06:12.720
cool our um our next event will be with

1225
01:06:12.720 --> 01:06:16.559
Moira Williams and um I'll just uh tease

1226
01:06:16.559 --> 01:06:17.940
too that

1227
01:06:17.940 --> 01:06:20.000
um

1228
01:06:21.059 --> 01:06:24.299
uh some folks that uh you heard today uh

1229
01:06:24.299 --> 01:06:28.619
Grant uh of the Curiosity Paradox and um

1230
01:06:28.619 --> 01:06:32.000
will be also

1231
01:06:33.059 --> 01:06:37.020
will also be an event uh um uh the a

1232
01:06:37.020 --> 01:06:39.240
guest for a future event so

1233
01:06:39.240 --> 01:06:42.900
um stay tuned and uh thank you everybody

1234
01:06:42.900 --> 01:06:45.000
um much love

1235
01:06:45.000 --> 01:06:47.400
right

1236
01:06:47.400 --> 01:06:51.799
yeah thank you everyone take care

1237
01:07:02.520 --> 01:07:06.079
Carmen should I wait around

1238
01:07:07.140 --> 01:07:10.440
yes I I'll just wait for like be here

1239
01:07:10.440 --> 01:07:11.940
for like maybe five minutes if anyone

1240
01:07:11.940 --> 01:07:16.160
wants to check in or or anything

1241
01:07:20.000 --> 01:07:24.140
thank you Rubble oh that was such a

1242
01:07:24.140 --> 01:07:27.660
sweet beautiful talk I I teared up a few

1243
01:07:27.660 --> 01:07:29.900
times

1244
01:07:30.599 --> 01:07:34.339
that's so tender thank you

1245
01:07:38.700 --> 01:07:40.920
yeah did I go a good speed for the

1246
01:07:40.920 --> 01:07:43.440
interpreters

1247
01:07:43.440 --> 01:07:45.660
did you what

1248
01:07:45.660 --> 01:07:48.359
oh I was asking if I went to good speech

1249
01:07:48.359 --> 01:07:51.299
for the interpreters this is Topher that

1250
01:07:51.299 --> 01:07:53.579
was beautiful thank you so much for your

1251
01:07:53.579 --> 01:07:56.760
pain for your pace is really great and

1252
01:07:56.760 --> 01:07:59.579
ROM is saying yes uh I second that

1253
01:07:59.579 --> 01:08:03.079
sentiment it was wonderful

1254
01:08:08.420 --> 01:08:10.020
well

1255
01:08:10.020 --> 01:08:10.940
um

1256
01:08:10.940 --> 01:08:14.280
I yeah I think I think if there's no

1257
01:08:14.280 --> 01:08:18.000
other uh points I think we're just gonna

1258
01:08:18.000 --> 01:08:21.179
um uh have this captioned I think Ari

1259
01:08:21.179 --> 01:08:22.799
from our team is going to do some

1260
01:08:22.799 --> 01:08:25.140
captioning and we're gonna try to get

1261
01:08:25.140 --> 01:08:26.339
things on

1262
01:08:26.339 --> 01:08:29.640
um YouTube as as soon as we can and

1263
01:08:29.640 --> 01:08:31.679
um we'll send out uh that video for

1264
01:08:31.679 --> 01:08:35.640
folks but um yeah um thanks again and um

1265
01:08:35.640 --> 01:08:38.279
in in until next time

1266
01:08:38.279 --> 01:08:40.799
yeah thank you so much

1267
01:08:40.799 --> 01:08:42.960
wonderful being in community with all of

1268
01:08:42.960 --> 01:08:45.080
you

1269
01:08:45.239 --> 01:08:47.339
no problem thank you I really appreciate

1270
01:08:47.339 --> 01:08:49.020
all of you and it was wonderful working

1271
01:08:49.020 --> 01:08:53.120
together thank you again so much this is

1272
01:08:56.040 --> 01:08:59.580
bye everyone thanks bye bye

1273
01:08:59.580 --> 01:09:03.859
bye goodbye everyone take care