ASHLEY BROMPTON: Hello again. Thank you so much for joining us today. It is 2:00 PM Eastern time, so we will go ahead and get started. Our poll question for today was, would you rather live for the rest of your life in the Arctic or in the Sahara Desert? It looks like about 61% of you said the Arctic. I agree with you 100%. I don't like getting overheated and I feel like it would just be too hot in the Sahara. So I appreciate that poll question today. Thank you all so much for participating. Feel free to introduce yourself or explain your rationale for what you chose in the chat, if you would like to. And we're going to go ahead and get started with today's session. 

Thank you so much for joining our webinar today. My name is Ashley Brompton with the Center on Victimization and Safety at the Vera Institute of Justice. I would like to welcome you to today's webinar, which is part of our 2021 End Abuse of People with Disabilities webinar series. 

Before we get started today, I want to provide some information about the accessibility features of Zoom, as well as how you can interact with us throughout the session today. You should be in listen only, view only mode. Which means that you can hear and see us, but we cannot hear and see you. 

If you would like to turn on captioning, you can go to the bottom of your screen. There should be a little closed captioning box. You can click that. And there are two possible views. You can choose Show Subtitle or View Full Transcript. Once you make your selection, you should see the words I am speaking appear below my video if you chose subtitles or to the right of your Zoom window if you chose the transcript form. 

We do have a multilingual space today. The presentation will be in English. And we have American Sign Language interpretation and Spanish interpretation today. You should see the American Sign Language interpreter on my screen-- on your screen right now. And if you requested Spanish interpretation, you should have received an email about how to access it. If you did not receive this information, my colleagues are also posting it in the chat as well. 

We will pause about every 20 minutes for an interpreter switch. This ensures the highest quality of interpretation is provided throughout our session today. You may hear me interrupt the panelists to do an interpreter switch. If that happens it's just because we really need to make that switch to make sure that we're ensuring the best quality interpretation. If you have any issues with the interpreters or the captioning, please let us know in the chat today. 

We value complete access in our virtual sessions. If we have a technical issue, we will pause to address it. If it cannot be resolved, for whatever reason, we may end up having to cancel the session. If that does happen, we will send an email to you with further information. 

Feel free to use the chat to communicate with each other. But if you have a question for the presenters or for us and you want to make sure it doesn't get lost, I would suggest using the question and answer button. You can find the question and answer button near the chat at the bottom of your screen. It says Q&A and has two little chat bubbles next to it. 

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A quick note about the chat pod. You cannot save the chat or a copy and paste from the chat. This is a security measure. If we share links in the chat, we'll make sure to include them in the participant materials folder for this session. So anything that we share with you, we will make sure you are able to receive after the session today. 

If you joined using your web browser, you may only be seeing speaker view. This may prohibit you from seeing all of the panelists, or you might only be seeing the American Sign Language interpreter. 

If you joined via the Zoom desktop application, which is what we would recommend, you have several viewing options today. If you go to the upper right hand corner of your Zoom window, there should be a little button that says View that has nine boxes next to it. If you click that button, you have several options, including speaker or a gallery view. We suggest gallery view and then you can see the interpreters and any of the panelists who are discussing today. 

We will be recording today's session. The webinar recording and materials will be posted on the End Abuse of People with Disabilities website within two weeks. There are no materials for today's session, but a record of attendance will be available for download via link in the chat pod at the beginning and at the end of the webinar. I'm going to go ahead and copy that link into the chat now and we will post it periodically throughout as well. 

Our presenters today are Cierra Olivia Thomas Williams and Max Barrows. I apologize for my dog barking in the background. We are trying to keep him as quiet as possible while they are doing some work on my house. The discussion will be moderated by Olga Trujillo today. 

Before I passed it over to Olga and the panelists, I want to lay the foundation for why we decided to host this session on identity and language today. Often in our webinars, we get questions about the quote unquote appropriate terminology to use when talking about people with disabilities or talking to people with disabilities. And the reality is that identity and how people with disabilities choose to refer to themselves, these are ever evolving concepts. And we wanted to create a space where we could have this conversation with you all, and invited some of our panelists to join us today to just discuss some of the things that come up for all of you. And it is a deeply personal choice. This isn't designed to be a debate, but a conversation. And so I just want to leave you all with that as I pass it over to Olga today. Thank you so much. Olga. 

OLGA TRUJILLO: Thanks, Ashley. Hi, everyone. My name is Olga Trujillo and I work here at the Center on Victimization and Safety at the Vera Institute of Justice. And as Ashley said, today we are going to talk a bit about the use of language when talking about how someone identifies. Before we bring on the panelists that we have today. I want to lay some additional foundation for this session to complement what Ashley mentioned. 

In the US, the history of ableism has been really damaging to disabled people who have experienced a long history of erasure, exploitation, stigma, and misunderstanding. Ableism in our society has fostered a view that we are defective because of what makes us different. People with disabilities have been referred to by many derogative names over the years. Often people were referred to by medical professionals, education providers, family members, and in more ways, that made them uncomfortable or centered their disability over their personhood. 

In an effort to center their voices and experiences as human beings, people with disabilities have made efforts to own their disability. They have evolved in their thinking about themselves. And I for one have gone from being ashamed of having dissociative identity disorder, to being proud to have had the creativity and power to survive the extensive abuse that I needed to as a child, that I ended up forming parts. I went from hiding my disability to being proud of how I survived. I now think of myself and what my brain does as a superpower. That took me a long time to do. And I'm sure many other folks that are participating have similar experiences. 

These evolutions in thinking have led people with disabilities to identify in different ways. Some people embrace person first language. Person first language puts the person before the disability. For example, a person with a disability, rather than a disabled person. The rationale behind this is that we need to center the person, not the disability. The evolution of this approach was to counter the ableism and derogatory language society as a whole has aimed at people with disabilities. 

Some people embrace identity-first language. This positions disability to be the same as any other identity category. It recognizes that disability is a part of a person's identity, and doesn't need to be denied or diminished. Identity has led to strong emotions about the language we use when referring to people with disabilities, or disabled people depending on what someone prefers. 

The most important thing to remember, and what we want to leave you with with this session today, is that however a person chooses to identify, those choices should be respected. There is no one right way to identify. Honoring the person's choices is most important. Basic best practice is ask each and every person what their preference is and reflect that preference. 

OK so today, we're going to delve into a dynamic discussion into the complexity of identity with two of my favorite people, Max Barrows and Cierra Olivia Thomas Williams. We will delve into the evolving terminology used to identify and describe people with disabilities. The various perspectives of disability communities, and the importance of empowering those most impacted to make decisions about the language we use. The session is not designed to be a debate, and Ashley mentioned this, but rather explore some of the nuances of identity and language choice, and perspectives of disabled people. 

So with that, let me have Max and Cierra turn their cameras on and also unmute themselves. And Max I'll start with you and have you introduce yourself to everyone. 

MAX BARROWS: OK. So I'm Max. I am on the autism spectrum. I live here in Vermont, where there is more dirt roads than paved roads. And I work for an organization called Green Mountain Self-Advocates, which is a self-advocacy organization here in Vermont. And my title is Outreach Director. And some of what I do is I provide technical assistance. Or I would say in an easier way, I visit our 23 groups throughout Vermont, all self advocacy groups throughout the state, to give them whatever support they need to run their meetings. 

And I do a lot of other things. But just to be quick, I'll just get into the obvious and that is I also work for-- I do a lot of work for SARTAC, which is the Self-Advocacy Resource and Technical Assistance Center. Which provides information for self-advocates, by self-advocates, to self-advocacy organizations across the country. And to have the movement stay strong and people with disabilities involved in the movement stay connected. And you will see those websites for both the organization I work for and the organization I do work for in the chat. 

OLGA TRUJILLO: Awesome Thank you, Max. And Cierra, would you introduce yourself? 

CIERRA OLIVIA THOMAS-WILLIAMS: Hi, this is Cierra. I absolutely will introduce myself. Thank you. [SPEAKING MIWOK DIALECT] everyone. Hello. Thank you for inviting me here. And I just want to say that I am so honored to be here with Max and Olga, whose work I followed long before I got in rooms with you. So this is like a super, duper big moment for me. Thank you so much. 

I am an excitable person and I want to invite everybody to join me in one of my calming activities. And just right now take a big giant breath. Let's do a 254 person inhalation and exhalation with each other. OK go. That just makes me feel all the hair on my body. And that means I'm present and ready. 

I'm joining you from unceded territory of the Kikaapoi, Kaskakia, and Myaamia people. And that is in now Indiana. I'm actually in now Bloomington, Indiana. My full name is Cierra Olivia Thomas-Williams. And I am a fat and sassy Miwok assa and I use and she/her pronouns. And I'm coming at you today from my bedroom. I'm wearing a sleeveless dress with lemons on it. And I have olive skin that can be brown sometimes, depending upon the time of year. I have salt and pepper dark hair that is just under shoulder length. 

And I want to tell you a little bit more about me and where I'm coming from for this conversation. I experience chronic post-traumatic stress disorder. And sometimes it's acute. And so I do a thing called EMDR to help with that. And that is Eye Movement Desensitization and Reprocessing. This helps with my anxiety. I'm an anxious person and modeling the way that Lydia X. Z. Brown introduces themselves in speaking to others, they often bring into their room their perpetual anxiety. And so I want to do that with you. 

So my social anxiety actually tells me that I may in fact, die right now by engaging in this with you. And this really short circuits the free flow of ideas. I have a very strong freeze or fawn response. And I want to thank Tristan Taggart at FORGE for teaching me the fawn, about the fawn response. That can come off as excessive gratitude, like gratitude explosions, and deference, and excessive thankfulness, and always tons of exclamation points in my emails and chats. 

I am a depressed person who is also sometimes manic. I'm neurodivergent and cisgender. I'm [SPEAKING MIWOK DIALECT] and that means disabled in the northern Miwok dialect. So Miwok uses the identity-first language. And I have been doing victim's advocacy since 1998. And I began professionalizing in 2005. I started working with disability serving organizations in 2009, and I am still doing that. And I'm currently prevention specialist at Indiana Coalition Against Domestic Violence for six years, and co-founded Indiana Disability Justice with my teacher and friend Skylar Kantola. Thank you for inviting me. 

OLGA TRUJILLO: OK. So interpreters are good. OK. All right. Thank you so much Cierra, I love your introduction. And both of you reminded me that I forgot to tell you I live in Star Prairie, Wisconsin. A rural community of 532 people. 

SPEAKER 1: So sorry to interrupt. I want to just make sure that the Spanish interpreters are ready as well, Olga. 

OLGA TRUJILLO: Thank you. Yes. Thanks so much, Rada. 

SPEAKER 1: OK I think we're good to go. Thank you. 

OLGA TRUJILLO: OK. Awesome. So let's get into some of the questions that I have for you both today. Max, let's start with you. In your opinion, what's the difference between identity-first and people-first language. 

MAX BARROWS: So, what I found is the difference between identity-first and people-first language is how someone wants to be referred to. Some people put their disability first. Some people put themselves as a person first. The label and how much stigma it can have can play a role in how people want to be identified. It can feel less stigmatizing to how someone wants to be referred to. One way versus another. Overall, it's really a personal choice or preference. 

OLGA TRUJILLO: Thanks, thanks Max. And that totally fits kind of when I talked about how I went from-- because DID is this really stigmatized mental health condition, and how I didn't want anyone to know. And then I got comfortable letting people know. And now I'm at this place of kind of thinking I have this superpower. So I totally appreciate your view on that. Now Cierra, I know you did a little bit of research and as part of your answer, so I kind of want to hear a little bit about how you're thinking about it. 

CIERRA OLIVIA THOMAS-WILLIAMS: OK. This is Cierra and I really appreciate what you said Max about it's ultimately how someone wants to be addressed. One of the things that I think is really interesting about person-first language, is its emergence in the 1980s and 1990s as a self-advocacy movement that was directly counter to the hateful language about disability that stems from ableism in everyday and governmental language. And so over the last 40 years, person-first language has become institutionalized and part of the professional, everyday language that people use. 

And so in terms of identity-first language. So I was going to say an example of person-first language, which Olga you stated before, is like person with disabilities or person with autism. That is an example of a person-first language. Identity-first language emerged from the queer people of color disability justice movement in approximately 2005. And I think Patricia Berne and Sins Invalid were at the forefront of that work. 

And so an example of this is capital A autistic person, or capital D disabled person. And actually many of my Disability Justice teachers also use the word crip or gimp to describe themselves and the communities that they're in. 

Lydia X. Z. Brown in her-- their excuse me, website Autistic Hoya argues that identity-first language means that disability is inherent to identity and valuable. Which I really appreciate because identity-first language for me is about acceptance and celebration of my identity as disabled. And it creates belongingness for me within disability communities. 

And a sense of connectedness to my identity as a disabled human and with other disabled people. And both of these qualities, belongingness and connectedness, are fundamental to my wellness and my physical and mental health. And we actually know from public health research that connectedness and social support are protective against multiple forms of violence, perpetration, and victimization. 

The Centers for Disease Control say that connectedness prevents child maltreatment, youth violence, intimate partner violence, sexual violence, elder abuse, and suicide. And so these qualities of connectedness and belonging last an entire lifetime. And we know that being in community with each other, and when we are connected to other people and to resources and our communities, to organizations, we are actually more likely to check-in with each other about how we're doing. 

And asking people what they need to be fully present and what they need to participate fully, is revolutionary and it shouldn't be, but it is. And so this action of checking-in can reduce a person's motivation to cause harm to others or themselves, by fulfilling that basic need for connection. 

And so, in doing so, we are more likely also to identify unwanted behavior and call people in to conversation about that unwanted behavior. And it can allow us to connect to resources and people and that moves us toward accountability. And so, connectedness really is an opportunity for accountability. And so that's really why I like identity-first language. Thank you. 

OLGA TRUJILLO: Thanks so much Cierra I love that and it kind of fits with my evolution, as well. And then there's quite a few people in the chat that also appreciate your references to Lydia X. Z. Brown and their work. So thanks so much. 

Max I'm curious. So I kind of want you to answer two questions but it's all part of the second question, right? So what's your preference, whether it's identity-first or people-first language, and why? 

MAX BARROWS: Personally, I prefer people-first language because I am a lot more than just a disability. But that's just my personal preference. It would feel stigmatizing to me, if I were to say that I am a disabled person. And the reason is because I don't want the world to just see me as only disabled. I am like a whole person and that is what matters to me more than my disability. However, I can only speak for myself in this regard. It's really best to ask someone first what they prefer. So that's my take. 

OLGA TRUJILLO: Yeah. Thanks, Max. I love that. Thank you so much. And then Cierra, what's your preference and why? 

CIERRA OLIVIA THOMAS-WILLIAMS: This is Cierra. I use person-- I used, in the past tense, I tried to use person-first language from approximately 2009 when I first started collaborating with disability services organizations. But I prefer identity-first language, actually after reading a book called Care Work. Because it feels direct and true and it pushes my comfort zone, which pushes me closer to self-acceptance. And I also think that when I refer to myself as a disabled person, I am pushing on other people's comfort zones and perspectives of me, which I think what is needed to learn and grow. The book, Kristen, that I am referring to is, Care Work and it is by Leah Lakshmi Piepzna-Samarasinha. And I will spell that in the chat for you in a moment. 

I wanted to tell you a little bit about how this has changed for me over time because I think it has a lot to do with how disability showed up in my upbringing. When I was four my dad broke his back at work and he could no longer work. But he never identified as disabled his whole life. And when I reflect on my family history, I realize chronic illness has also really been a part of our lives for forever. And again, chronic illness actually wasn't linked to disability in my family either. But what the terminology in my family was, until I learned better or different, in 2009 was being on disability. And I think that ignoring chronic illness and a disability is a direct result of stigma. 

Last time I was hospitalized, back in January actually, my mother told me that there's no mental illness or disability in our family. As if I'm some sort of like, where did that come from? I'm an outlier. And so there's no opportunity for belongingness or connection in the way that my mother sees me. And coming to terms with my impairment really, impairments, has been a lifelong journey. And I think that my dad used the phrase "on disablility" as kind of like a rejection of his own limitations. And this often actually led to enormous injury. A lot of hospitalizations and setbacks in his wellness. 

So disability is not a construct actually that is limiting in any way in my Indigenous family, . It just is life. It is what it is. And this is really a result of history of genocide and oppression of Indigenous people. Indigenous people actually have the highest percentage of disability relative to population size in America. So disablement and impairment is disproportionate among Indigenous people. And so, actually, very recently I stopped introducing myself as a person with an invisible disability. 

I entered this work through disability serving agencies who taught and reiterated person-first language and I would hear people identify this way in rooms and I started using it. And I was also very curious so I asked people, when they use that terminology "I am a person with invisible disabilities," what do you mean by that? And I heard two reasons. The first reason that people tell me is they do not want to diminish people with obvious disabilities. And the other reason was that they wanted to indicate the privilege that comes with masking, and that means hiding our identities for safety purposes, or passing like going undetected as disabled. 

So my observations are that indicating that you have privilege does nothing without the actions to move the power that goes with privilege. From power over others to sharing power with others. And 90% of the time when I hear people say they are a person with invisible disabilities, I do not also hear about the privilege that comes with that and I don't hear what people are doing to level the field. So it isn't, in my perspective, moving how power is operating, which is the purpose of addressing like privilege in the first place. And so I told you that reading Care Work and seeing the self-love in that book coming from the community just moved my heart. 

And I realized that my disability doesn't diminish anybody else's experience of disability. I actually think that is a scarcity mindset. And my disabilities are never invisible to me. They might be unseen or unnoticed if I'm masking well, but they're always in the forefront of my experience. And so because I realized that I was putting myself like behind somebody else's comfort zone, I am working to change my practice from using people-first to identity-first in my speech and writing. Thank you. 

OLGA TRUJILLO: Thanks so much, Cierra. And you jumped to the next question, which I really appreciate. And I wanted to check-in with you, Max. Has your preference, the way that you identify yourself, has that changed over time or have you always kind of thought of yourself as a kind of person-first language? 

MAX BARROWS: You know, that's a really good question, actually. I didn't really have a preference until I got involved in self-advocacy. And through the self-advocacy movement, I learned how to identify as a person-first language. In other words, a person with autism. If there are any changes in my preference, I have used identity-first language at times when I'm around and interacting with people that use that to respect their preference. But 95 plus percent the time, I use person-first language due to my involvement in self-advocacy. 

I think we adjust our language depending on who we are around to show respect. But that doesn't change my personal preference of describing myself as a person with a disability, person with autism. Or maybe I would say like, I have or I having autism or I'm on the autism spectrum. But that's my personal take on it. 

OLGA TRUJILLO: Thanks. Thanks so much, Max. I'm going to pause for a second while we do an interpreter switch and I'm going to come back to this. OK, we're good. I've got I've got a system set up now for figuring out that we've got both interpreters which is done. 

So that piece of it. First of all, there's a lot of comments in the chat. This is really resonating for folks. And that piece of it is I think Max, my experience is very much like your experience, in the sense that I didn't start really even thinking about how I talk about my disability until I started really working in that area. In the area of trauma and dissociation and having a dissociative identity disorder. And so I think I didn't really talk about it at all. And then I started talking about it really kind of from a person-first language, which is kind of where I am. And then I'm and I try to figure out how do I do this from an identity-first language, and how does that how does that feel to me. 

So it's a slow process for me to shift the way I identify. I recently went from conforming around gender identity and always saying my pronouns were she/her/hers because that's what I was supposed to be. And finally at the age of 60, decided I should be more real about my experience and let people know that I actually do prefer they/them/theirs. That I'm gender nonconforming. And the experience of me is that I'm a we, as opposed to an I. And so they/them/theirs, which is consistent with having DID. 

But it's I'm loving this conversation because I see the ties to my experience as well in the way that the field has moved. So I really, just really appreciate what you all are sharing. And I can tell too that the people listening also are really enjoying this conversation, as well. So I should probably talk less and go back to the questions. 

So Max, how has ableism and stigma against people with disabilities, or disabled people, affected the way your preferences and language choices? If it has. 

MAX BARROWS: Well, I think this question gets at the root of why people with intellectual disabilities were the ones who embraced the idea of person-first language. Throughout history, the label for people with intellectual disabilities was mentally retarded. And society as a whole has forever, and still to this day, uses the R-word as a put-down. So people who started the self-advocacy movement called themselves members of people-first as a way to say stop calling us the R-word, stop using the R-word. And to be honest, the R-word word packs a much more powerful punch than saying someone is blind or deaf or autistic. And now people who for so many years felt proud to say we are people-first. It can be offensive when we are challenged and told it is better to use identity-first language. Sometimes we have even heard people say offensive things like, someone who uses person- people-first language is not evolved. And it feels like we are being judged as not being smart enough to understand and use identity-first language. 

I wish this had not been, or has not become, such an us versus them situation. It feels like once again, people with intellectual disabilities are being put down or labeled and not accepted. It just comes down to how someone wants to be referred to and respecting that without putting them down. For me, I want to be seen as a whole person, not just my disability. Ableism and stigma can affect my personal preference because the world still sees people with disabilities, disabled people, as incapable. 

OLGA TRUJILLO: Yeah. Thank you so much, Max. That's a really powerful statement and I really appreciate it. And it's really, in large part, the reason for this webinar. Is to one, kind of help shed some light on the use of language and also have people who have firsthand experience of this describe why they're using the language that they're using. And not have people push us in one direction or the other but instead be respected. So I really appreciate that. 

Cierra, how has ableism and stigma against people with disabilities or disabled people affected your preferences and language choices? 

CIERRA OLIVIA THOMAS-WILLIAMS: Thank you for asking, Olga. I might say something briefly about my experience of violence that is hard to hear. So I'm going to put a trigger warning potentially out there and invite people to mute me if you need to not hear this part. 

So ableism and stigma against people with disabilities, or disabled people, led to my acceptance of structural disablement. So the barriers that are built in to ensure-- to remove access for the most people. So it wasn't until total immersion in the disability services and advocacy field that I really recognized what that acceptance was, very privileged in me. I was ignorant about disability and person-first and identity-first language because it's really easy to be ignorant about these things in our culture. 

And the hard part, well it's all difficult, I denied my experience of disability in favor of judging myself, to be honest. So that led to me hiding my whole self from myself and others. And so really a half lived life. So I've been coming out of hiding with my disability since 2018. . And so it's still fairly new territory for me I have not really taken note of the chronic illness or disability in my family. That resulted in ignoring the health and physical needs. This is the trigger part, this has resulted in the suicide and death of many, many of the men in my family over my lifetime. And I myself am a suicide survivor. I have deal with suicidal ideation and my behavior is rooted in my experience of isolation and unmet needs, which are almost a guarantee in America, I feel like unless you're very well resourced. So ableism and stigma ensure isolation and it's that lack of belonging and connectedness that's deadly. Thank you. 

OLGA TRUJILLO: Thank you. Thank you so much. And I'm not sure if you can hear noises that are coming from the other room. But I have two dogs one of which is very excited right now. Sorry about that all. OK. So I'm going to turn to our next question, which is-- Max, I'm asking you first. 

Why is it important for disabled people, and people with disabilities, to decide what language is used when others refer to them? 

MAX BARROWS: Because nobody else should decide how we should be referred to besides us. For example, when it comes to being Black, or African-American, or people of color, we should choose how we want to be referred to. And that should be respected and the same goes for people with disabilities or disabled people. 

OLGA TRUJILLO: Awesome Thanks so much. Yeah. Awesome. And Cierra? 

CIERRA OLIVIA THOMAS-WILLIAMS: This is Cierra. Not sure if I'm still supposed to say that so I'm trying to be the most accessible I can be. OK. Self-determination is fundamental to wellness. And wellness is fundamental to violence prevention. So using the language people choose for themselves at the core is about sharing power with other people. And power over others is the root of oppression. And so language use is one avenue to address these barriers to shared power. And like Max, I think people are in charge of their stories. Like Max said, this is about choice. People oversee their stories and their narratives and that needs to be honored. And the only reason that I can see to not allow for individual choice is power hoarding, to be honest. Power over someone else. And that is absolutely a form of violence. And so we need to use the language preferred by the person we are talking to and this is anti-golden rule. I've heard this idea that the golden rule, it's even an organizing idea around some youth serving organizations in now Bloomington, Indiana. And this is that idea that you should treat people how you want to be treated. And I just don't really get that. We need to be treating people how they want to be treated. Thank you. 

OLGA TRUJILLO: That's such a great point. Thanks so much, Cierra. And I really love this discussion and kind of where it's going. I'm curious, so what happens when your choices or preferences are not respected? How do you feel? And I'm going to start with you, Max. 

MAX BARROWS: Well, it can make me feel bad when people don't respect me in this regard. I can feel left out like I don't matter. You know, like I'm not listened to, like I'm not important. I wouldn't feel respected as a person if others didn't want to respect how I would want to be referred to. I would speak up about it and say how I feel so people would understand. 

I also think too that sometimes this can be about a person's level of awareness. They may refer to me in a way that is offensive without knowing that they are doing it. I'll just give an example. And this is something that kind of sticks with me a bit since I was told this through my parents. But there was a neighbor of mine who used to live next door, not a neighbor anymore they passed away, unfortunately. But they were a very, very sweet person. And you know, but when they first saw us, and this is like when I was like an infant, they referred to me as a colored boy, or colored. And I obviously at the time I wouldn't remember that because I was so little. 

But having that you now, told to me kind of made me think of like, well I don't want to view somebody as racist if, you know, they don't look at me negatively because the color of my skin. But I think that from what I understand, I think it was the generational thing. Because at the time this neighbor grew up like in the '30s and the '40s and in that time frame. And so I think just sometimes people will say things or refer to people in ways that are offensive and demonizing and discriminatory without really knowing or being aware that they're doing it until they are addressed. But over time this neighbor learned that it wasn't language that was politically correct. Maybe then considerably, but it isn't now. 

And I think what I'm trying to get at here is my point is, I want to be respected at the same way as a Black man as a person with a disability, or disabled person. But I think what it just comes down to is just learn. And it comes down to listening and learning and asking. But it's one thing to feel disrespected-- I mean, it's understandable that if someone refers to you in a bad way you're going to feel disrespected or demonized but I try to separate out the difference between somebody intentionally referring to in a way that's not respectful versus someone who does not have the intent of disrespect me though they may use language at first that is disrespectful. If that makes any sense whatsoever. 

OLGA TRUJILLO: It makes great sense, actually. And it makes perfect sense. I'm going to stop there because it's a natural break for us to do an interpreter switch. 

OK, awesome. So I really, what you said Max really kind of resonates for me. There's the difference between someone who targets you, uses language to diminish you, to put you down, and then there is people who haven't done their own work, who haven't recognized their own privilege, and use outdated language because they haven't figured it out. But once somebody says something to them, then they do their own work. 

And I have that experience with my in-laws. They're in their late '70s and early '80s and when Black Lives Matter became a big thing, they realized during a conversation that I wasn't white. And it was hard for them to figure out. They knew I was Latinx but they didn't know that that meant that I have the experience of growing up Brown in the US. And when I told them that, they were really struck by it. They were like, they didn't know what to do with it. And they said some things that were not really well informed. But since then they've done a lot to learn about the terminology that they're using with me, about race, and how people identify, and things like that. And to me, it's that kind of the benign kind of peace with the effort to not cause harm that makes me feel closer to them. And I think the way that you probably felt about your neighbor. In the sense that, this neighbor was this really sweet person who wasn't intending to cause harm. So I really appreciate you bringing that up as kind of an analogy. 

And I'll just say as well, that piece of letting people know that you identify a certain way and then making the effort to respect that, to learn about it and respect that, is huge in my book. And it shouldn't be huge. It should just be the way things happen in our world, but it isn't. But I really appreciate you bringing that up. 

So sorry I'll quit talking and then turn back to Cierra. So Cierra, how does it make you feel when people don't respect your choices or preferences? 

CIERRA OLIVIA THOMAS-WILLIAMS: This is Cierra. This is where I feel like I can really feel the way that disability impacts me. Because I get extremely angry, like very reactive I have to say, and I get angry, distracted. I will be triggered into the past. And when that happens, I am not a good listener and I am not present. I'm just not there. And it may take me off into something that is destructive. And I need time to de-escalate when this happens. And I want to be able to get to the place that you and Max described. And so I really aspire to curiosity, like you and Max, like you Olga and Max. And so I really appreciate your reflective answers and the intentionality behind your practice. I am moving toward that. Thank you 

OLGA TRUJILLO: Thanks, Cierra. I want to clarify. I'm not sure I'm completely there and it depends on who it is. I mean my in-laws are kind of part of my life because I love my partner and I love them. And so I try to approach them with an open heart but if I thought it was intentional on their part or if they hadn't tried after that, I'd be really angry with them and limit my contact with them. I'll just say I appreciate you kind of seeing kind of the way we're thinking about it and talking about it in this way, but it does it does a similar thing to me, too. I can't keep paying attention, I get a lot of noise inside because I have parts. And when people talk to me in a disrespectful way or when I feel demeaned by someone, there's all kinds of stuff that starts, gets kicked up inside that I have to, while I'm interacting with them, also address inside. So it's just disruptive for me as well. So I just want to put my stuff out there with you. 

So, OK. So, how do you feel about terms-- Max, I'm coming to you first. How do you feel about terms like special needs and differently-abled? 

MAX BARROWS: I'm not a fan of the term special needs. Why is it that our needs are viewed in a way that only further separates us from other people? The way I see it, everyone needs support in some area of life, some more than others. But why should our needs be seen as special as if we are put further in a separate box labeled incapable. 

OLGA TRUJILLO: Awesome. And Cierra? 

CIERRA OLIVIA THOMAS-WILLIAMS: This is Cierra. Every single human being, living thing on this planet has needs period. Full stop. Everyone has abilities that change over time too. I haven't spent a ton of time thinking about the phrase differently-abled, but it strikes me as strange and I actually don't like it. 

Special needs is a phrase that I've had to deal with the entire time I've had children, because my children are children with disabilities. They do not identify as disabled. So this is why I'm using person-first language. So special needs is institutionalized, standardized language in schools. And this is a systematic attempt to make static, like the relationship of humans to care. So this is a flattening of the human experience. And when my children were in school, the label of special needs actually caused them to reject the help that they needed. Because of the stigma that comes with being placed in a special needs classroom. And so their success was impeded by this perception and the experience of stigma. 

And so in our family, we developed in-language where we called it IEP. That's Individualized Education Plan rather than special needs classroom. And that felt like a distancing, that distancing of this idea of being a burden. And needs like I said, are not standard across all humans. And they actually vary greatly from day-to-day and moment-to-moment and decade-to-decade. 

Humans needs were never standardized and they never will be. And so I think that this idea is classic oppression. It's a flattening of choice and a flattening of difference that makes it seem that there is a certain threshold for needs and care. And when you cross it, you're extra. And this language is just another mechanism for separation, like Max said. And isolation, isolation from students who are not disabled or may not be in a special needs classroom. And this is violence and this is deadly. Thank you. 

OLGA TRUJILLO: Thanks, Cierra. Max I see you have your hand raised. Oh, you're muted. 

MAX BARROWS: Oh, yes I just wanted to add to what Cierra was saying about special needs classroom. It just made me think of when I was in high school and even to some extent middle school. Let's just say my teen years, I would hear the word, like what evolved from special needs as like, the special kids or the SPED kids. So you're automatically, like playing a role. That term plays a role in separating people with disabilities out. And it can also lead to students with disabilities being treated differently in a negative way. 

OLGA TRUJILLO: Yeah, exactly good point. It reminds me, and this discussion as well, reminds me of the ableism guide that-- we have this project at The Vera Institute that's funded by Novo. That's a coalition of disability justice and disability rights folks with disabled people. And one of those subgroups, which Max was part of, developed a plain language, very accessible guide on ableism. And in that guide-- Oh good, Ashley, thanks for putting that in the chat. And the guide kind of walks through. And what I loved so much about this guide, is that it talks about how we're all different but what we're doing is we're treating people-- 

So for example, everyone needs accommodations but there's a big majority of our population that needs more different accommodations than a smaller group in our society. And so for people that can see, we need streetlights so they can see at night. But blind people don't need that. And for people who walk we need shoes. But people in wheelchairs don't necessarily need that. So it was really, these are two examples that came out of the ableism guide. And I love that because when we use terms like quote unquote, special needs, we are saying something about a group of people that are different than another group of people. So it's not just that we're different, it's that we are also considered to be less than. 

And that's the part, that's the place where then racism, and ableism, and oppression, happens. Is when you deem differences about people to be less than other people. And when we think about it 20%, about 20%, of the US population have disabilities. And I think that number is going to be going up as more and more people age, as we come out of this pandemic and see how many people have disabling conditions because of the pandemic. So it's just a really interesting time to be having this discussion. 

And I love that somebody put in the chat that those people, well they put in the chat the term, "temporarily-abled." I love that. So, I think I'm going to start using that. Thanks, Jen. OK. And also somebody else, I hope I'm pronouncing this right, Suni put in the chat, special needs feels kind of infantilizing to me. And I agree. That's awesome. 

All right. So I'd like to ask one last question. And then I'll turn and see if we can answer some of the questions in the chat. It might not be a short question, but maybe just pull out some of your ideas. What tips do you have for service providers to engage with disabled people? And that question in particular, I wanted to pull out because I think that's really useful for people that are listening. So Max, can you go through that first? 

MAX BARROWS: Well, I can. There's an A and a B to it. Can I just answer the question without the A or B due to lack of time, or I could just read the whole-- OK. I'll just read everything. Well not read, but you know what I mean. 

OLGA TRUJILLO: Yes, I know. So go ahead and refer to what you have time for. 

MAX BARROWS: All right. So, I would say, to keep it simple. My advice to service providers, to engage with disabled people or people with disabilities, get to know them. And pretty much when it comes to how they should determine which language to use, it's best to ask someone first. Well, it's best to ask someone first, what they prefer. Don't assume that you know without asking. And don't assume you know or choose a reference without asking. And don't assume you know best just because your experience working in the disability field. And in this regard, again it's best to ask someone first what they want to be. Like how they want to be referred to and respect that. 

And you know I'll be honest, this can be tricky because people with disabilities, disabled people, have different opinions. It is considered OK language. And what is considered-- let me rephrase that, my brain is being fried. What is considered OK language can be offensive for some. An example is like some autistic people take pride in referring to themselves as high functioning. For me and many other people I organize with, we are very much offended by the terms high functioning and low functioning. 

OLGA TRUJILLO: That's awesome. Thanks Max. That's really helpful. There's a question in the chat that I'm going to just kind of address. And Cierra if you want to address this too that'd be awesome. And Max jump in afterwards. It's, can you give a specific verbiage about how to ask? And so what I would recommend is listen to how someone talks about themselves. And then use that same language back. So if I say to someone, I'm a person with an invisible disability, then I'm using person-first language. So you can use that language back. I tell people all the time and people around me probably get tired of hearing it, but I tell people all the time I have DID. So I'm using a description about myself that's DID, so you can use that same language back. So how does your DID affect you? How do you identify? Those would be-- so it's in having a conversation with someone that you're working with. 

And Cierra I'll turn to you. And we just have a few minutes left and I do want to kind of turn to a couple of question. 

CIERRA OLIVIA THOMAS-WILLIAMS: Absolutely, I'll be super brief. I really agree with what you said, Olga about modeling what you hear. And that means that you need to slow down and listen. And listen to the language that is being used. And one of the things that I want to offer is a promising practice of prominently displaying what accommodations are available at your agency, in the building, and online. And invite people, all people to tell you what they need to be fully present. And that can open a door to that conversation about language if you want to have that. 

But I also saw several people in the chat say, why don't we use each other's names? And I think that is a great place to take this. The other thing that in closing, that I want to say is, about how would I recommend that service agencies work? And I want to ask us to practice equity. And this doesn't mean that everybody has the same thing. It means that we're working with people with disabilities and disabled people to ensure that accessibility to the resources for thriving is there. And I just want to say one more thing about that really quick, which is practicing equity is about divestment or un-investing from the structures, organizations, businesses, and people, that cause death and harm to disabled people people with disabilities and the environment. And then reinvesting in restorative and life giving wellness structures and relationships like accessible housing and transportation. And all of those things like health care that ensure thrivingness for people. And a great way to start off in any of this, for every single human in this room, is to always ask yourself how is power operating here? And then move it from power over to shared power if you need to. 

And I'm sorry, one last thing. My brilliant colleague Tamika Jones says show me your budget and I'll show you what you care about. So budget or give allowances for time, space, money, and representation. And I will leave it there. 

OLGA TRUJILLO: Wow! 

CIERRA OLIVIA THOMAS-WILLIAMS: Thank you. Thank you. 

OLGA TRUJILLO: I love that. Let's pause here for an interpreter switch. 

OLGA TRUJILLO: OK. Awesome. OK, so we have just a few minutes left. That was really awesome, both of you. And actually before I forget, I just want to say this before I forget. I love working with you. I love the way this has gone. I really appreciate both of you very much. And your differing views and the views where you come together it's all really good. So thank you both. It's probably some of my favorite work is when I get to work with each of you. 

So, someone asked a question. Let's see, there's quite a few questions in here. Wow, I'm not even sure where to start. Ashley, I wonder if you can kind of help out here because I don't even know where to start. 

ASHLEY BROMPTON: This is Ashley. There have been a lot of questions coming through. And I would encourage you, if you have questions even though we are running low on time, please put them in the chat or in the Q&A. We can respond after the webinar. So we really appreciate that as well. Cierra, the first question that came through the Q&A was really, if you could provide an example of how you introduce yourself or model the language around introducing yourself as a person who is practicing identity-first language. Just as an example. And I know you did this I think when you first introduced yourself, but if you wouldn't mind doing so again as a model for folks. 

CIERRA OLIVIA THOMAS-WILLIAMS: Absolutely. I am disabled. Just very simply. That is my idea of identity-first language and I know that we don't have a lot of time but I think about my disabilities and the way that they are referred to as diagnoses, and that makes it really hard to use identity-first language. And so that's why when I introduced myself today, I told you I am anxious. I am a depressed person who experiences mania sometimes. I am fat. I am [SPEAKING MIWOK DIALECT], disabled. Those things are what I would say, are an example of how I would identify myself. 

OLGA TRUJILLO: Awesome. Can I jump in there, Ashley? So one thing I'm kind of getting used to doing and trying on, is something that Cierra said as well when she introduced herself. Which is I am neurodivergent. In fact, I have a sweatshirt that says neurodivergent AF. And I have a t-shirt that says neurodiverse. And I love when I wear it and people ask me, what does it mean? So anyway. I got them all from this great place called Uncomfortable Revolution. That's owned, the artist is-- this is how she self-describes herself. As a Black, autistic, woman artist. So anyway. I just wanted to add that in there. 

ASHLEY BROMPTON: Olga 

CIERRA OLIVIA THOMAS-WILLIAMS: Thanks Olga, I'm going shopping. This is Cierra and I'm sorry for interrupting. 

ASHLEY BROMPTON: I was going to say maybe Olga you can put the link in the chat to her shop, so folks can see what else there is that they might be interested in. There was a person who said, because I am safe here I would like to take a moment to say out loud I have borderline personality and have been very secret about it and have been passing because of my fear. Any advice on finding self-love? 

CIERRA OLIVIA THOMAS-WILLIAMS: This is Cierra. I resonate so loudly with that. Thank you for coming out to us. I am so glad that this space felt right for you. And I just want to suggest that you spend some time learning from Lydia X. Z. Brown and read Care Work by Leah Lakshmi Piepzna-Samarasinha. Those two human beings cracked open my being-ness. And I recommend learning from them. And this is intentional too, by the way, like an everyday pursuit of acceptance. I see Max has things to say too. I'll stop. Thank you. 

OLGA TRUJILLO: Go ahead Max. 

MAX BARROWS: It's funny how you just said the word thank you for, well, the question was answered in a way where you referred to the word, coming out. Because I get it that. And I don't mean to steal words from the LGBTQ+ communities. So anybody who's like that. Now I'm not trying to steal your language. But here's how I see it. But I think there's more to coming out than just your sexual orientation. I think there's more than one closet that people hide in and it's not just closets. But also people hide in like shells. Like I at one point did not want people to know that I was different. And I feel that the word coming out has definitely, I think has just like my autism, has a spectrum to its meaning. I've actually learned from people who identify as LGBTQ+. I mean a self-advocate who identifies as gay that I got to know has talked about how they had to come out twice. But I think that feeling safe, if you feel safe to come out. I think and self love. I think it comes to finding your place to do that and that place can be wherever it is you are comfortable. And also just hooking up and connecting and getting to people who have shared the same, if not similar struggles as you. Because that will also help. But I want to just throw that out there. Sorry to steal words from other. I shouldn't say other, but groups of people that are different. 

OLGA TRUJILLO: Awesome. You're good, Max. 

CIERRA OLIVIA THOMAS-WILLIAMS: Yeah, I was going to say, I don't think you're stealing from the queer community, Max. 

OLGA TRUJILLO: Yeah. I wanted to add one more thing. As someone with DID that at first didn't want anybody to know, and then slowly started letting people know, and then wrote a book, and then did a video, and does trainings and stuff, it's a process. And it started with being able to have compassion for myself. And recognize that my brain is just as good as everyone else's. It's just different. And then to be able to see all the things that I can do with neurodivergent brain, right? 

So that's kind of how it started for me. And sometimes I'll look at somebody, I won't name any friends, but sometimes I'll think of a friend of mine that can't do something and I think, and she's got like regular brain. I think to myself, I think and she can't do it, but I can. And I have an extra special brain. You know, so I did things like that. I play around with that in my head. 

And I think that way on purpose so that my thought process builds on itself. As being kind of like I said, having a superpower. So just as something to think about. I think we lost Max. 

ASHLEY BROMPTON: This is Ashley. Max is still here, it just looks like his camera is off. We are out of time for today's session. Thank you so much Cierra and Max and Olga. This has been a really great conversation. 

A lot did come up in the chat, as well. If you have any questions that we didn't get to today or you want to connect to any of the panelists today, you can email us at CVS@Vera.org and I can connect you to one or all of the panelists. I did just put the email in the chat. 

And thank you so much again, this has been absolutely great. As a quick reminder, the recording of the webinar, and the transcript will be posted to our website. And you will be able to access that in a couple of weeks. If for some reason it's not up and you would like an update, you can email again and I will provide you an update. 

We do ask that you complete a brief evaluation of the session. It should, hopefully, pop up when I end the webinar for you today. If you wouldn't mind just filling out that evaluation. It helps us know what we're doing well, what you'd like to see us improve on, and it's really great feedback for the panelists, as well. 

And thank you all so much. Thank you to the interpreters and the captionist today who have been providing us with the highest quality of interpretation and captioning. And thank you to all of you in the audience who hung out with today. And shared in the conversation with us. Have a great afternoon, everyone.