November 16, 2021
Amplify Inclusion Podcast
Welcome to Amplify Inclusion, a podcast where we share authentic stories of inclusion in action.
With April being Autism Acceptance Month, we wanted to reshare this podcast from a few years back because of the power of language – specifically person first and identity first in the disability community. Our guests share their personal experiences and the importance of respecting individual preference when it comes to language.
Ross Edelstein and Sam Theriault, both museum professionals and self-advocates of the autism community, share their stories and discuss the importance of language as it relates to belonging. Listen now or view the full transcript below.
This episode was co-produced and engineered by Subframe Sound with music courtesy of Nealle DiPaolo. This season is made possible thanks to generous contributions from First Bank of Highland Park and members of the Aspire community.
Welcome to Amplify Inclusion. I’m Clare from Aspire. Thanks for joining us for a real stories and conversations about the power and importance of disability inclusion. Today my guests are Ross Edelstein and Sam Theriault, both museum professionals and self-advocates of the autism community. We recently spoke to discuss the power of language as it relates to belonging. Throughout our discussion, we refer to two different approaches to language- person first and identity first. Both are considered acceptable within the disability community, but some individuals prefer one over the other, while some use both interchangeably. Ross and Sam share their personal experience and the importance of respecting individual preference. Here’s our conversation. I’m so thrilled to have you both with me and I’ve had the opportunity to collaborate with you both on a few projects, and I’m just really grateful that you joined me for the conversation today. We’re going to dive into discussion in just a moment, but to kick us off and to help us get to know each of you a bit, I just wanted to give you a chance to share a little bit about your current professional role and the focus of your work. So Sam, I’ll start with you. Tell us a little bit about what you’re working on.
So I am working in the field of museum education. I have been serving as the membership and marketing manager for a museum education roundtable for about two years and I am also working on co-guest editing an issue of the Journal of Museum Education and also writing an article for an issue that will come out next year, called “The Call for Disability Equity in Museum Education- Reframing Accessibility as Anti-Ableism.”
Wonderful. I will be excited to check out that piece when it comes out and thanks for sharing about those projects. And Ross, tell us what you’ve been up to.
I’m currently working on a number of projects. I’m helping develop some training with the Kennedy Center looking at particularly neurodiversity and Arts and Cultural institutions. I’m also writing a article for that edition of the Journal of Museum Education, and I have started working at the Epley Institute, which is part of the Indiana Institute on Disability and Community and I am working on a variety of projects ranging from assistive technology to disability audits with that group and I’m really excited to be doing it.
Great, sounds really interesting. You’re both doing a lot of work. And what I love about the work that you’re both doing is, there’s such a powerful intersection between your professional work as museum professionals and your personal experiences and kind of the intersection between those two. And I know that you’re both longtime dedicated museum professionals, and I’m just curious to hear from each of you about what it is that draws you to museums and what you so strongly connect to about museum culture.
So what sort of got me into this is because I like teaching people things. I like telling stories. I like sharing various parts of history, culture, art, things like that, but I could not function in a classroom setting as a teacher. I could not do that. I would easily get overwhelmed but a museum setting gives me a lot more freedom, both in terms of what I’m able to teach, which is a whole separate conversation, but also a whole lot more freedom in how I can teach it, and ways I can make it interesting to both myself, but also guests and things like that. So that’s sort of how I got into it first. And then what I discovered that there was this whole emerging part of we’re trying to make museums accessible for people with Autism, sort of out of left field while working at the Indiana State Museum, I started researching that and fell in love with museum accessibility and making museums more accessible for all people.
So when I was in middle school high school, we would go on these field trips to museums and I would get there and I would be like, oh my God, I’m obsessed with the Wizard of Oz and they have the ruby slippers and, you know, it was just kind of like these are places where they have these objects and these experiences that are related to what I am extremely interested in. And
at the time, I didn’t know that I was autistic. I was diagnosed as an adult. So, of course, now you can look and say, “oh, well, these places are really temples of special interest.” But at the time I was just like- they have the stuff I love. And there’s all these other people here who like it, too! And I just felt like I belonged in these kinds of places. So I just, I had no sense of anything else I would ever want to do wherever else I would want to be other than in a museum. So I went on to study museum education and have been bouncing around in Education and Research and Evaluation ever since.
I understand that you both identify as part of the autism community. So I’m hoping you can each share a little bit more about how you personally identify or describe yourself. And if you’d like to share a bit more about your personal experience of autism.
So for me, I do identify as an autistic person rather than a person with autism. And there are few reasons for that. I think one of them is the fact that because I was diagnosed as an adult, I entered this community of people at a different age than a lot of my peers who were diagnosed as children were. And there is just a different conversation happening right now than there was in the early 2000s or in the 90s. So there’s some element of timing with that, but I do agree with the idea that you can’t separate the way my brain works from who I am. And that’s part of it. I think there’s just this sort of linguistic approach of being precise when you’re speaking and that, you know, for me, I’m very literal and it just doesn’t make sense to me. Like, I can’t take my autism off and put it away the way that you can change the color of your shirt and that kind of thing. And that kind of goes back to this essay, by Jim Sinclair in 1999 that came out very early, when the neurodiversity movement was sort of getting its footing in the United States where he wrote “I am, you know, not a person with autism and I’m an autistic person. Autism is part of me. Autism is hardwired into the way my brain works. I am autistic, because I cannot be separated from how my brain works.” And I know that there is also a long history of conversation about language in the disability community and in the neurodiversity community where there’s an arc of moving away from dehumanizing language and trying to make sure that humanity has identified when we’re speaking about people, and it’s sort of swinging back around in this back and forth Loop.
So I sort of come at this from a very different perspective because Sam may have, you know, had a much later diagnosis, I grew up in St. Louis and they have the wonderful Special School District. Every student who has, is in a school district that gets special education services from
Special School, District of St. Louis basically goes through various learning disabilities in kindergarten to figure out, do they have them? What services do they need? How can we help these students succeed? And that was when I was diagnosed. I also am fortunate enough that I have not really had significant effects from my autism. It doesn’t necessarily impact my day-to day life, as much as it does other people. I know- knew I was different growing up, but it wasn’t until high school when I saw autism on my IEP documents that, I really knew that I was somebody with autism. And part of that is how- why I identify as a person with autism using person first language instead of identity first. Partially because it’s something that, yes, it is inseparable from who I am. But I use person-first language because I don’t just do autism work. I do work with all sorts of disabilities and in my experience, I found that a lot of people who it’s the first time I’m talking with them about accessibility, and you know, they might know the very basics of I need to have a ramp, I need to have disabled parking spots. They might not know when to use person-first or identity first language. And in my experience, it’s far better to get people in a good habit of using person first language, when, you know, you don’t otherwise sort of get it, then it is to start with “I identify as an autistic person,” but in every other disability you deal with, you have to remember, X, Y, and Z. So, it’s as much a pragmatic thing for how I choose to identify as it is what I feel comfortable with. And again growing up, as Sam had mentioned earlier, the conversation was person first and person with autism.
Generally speaking, there’s a huge misconception about the disability community that there’s one profile of a person. You’re both museum professionals, you’re both part of the autism community, yet you can have very different preferences and experiences and I think it’s important for people to hear those differences in perspective to start to break down that idea that there’s just one fixed way of thinking about a person who’s autistic or a person with autism.
That is a great point and I’m glad to hear you phrase it like that. And I really appreciate what you said, Ross, about how because you don’t just work with autistic museum audiences who have autism or even only neurodivergent profiles is that, you know, it gets at this idea that I work hard to recognize in my work, too, that the disability movement is just so multi-layered and identities are vast and ever-changing and we are not a monolith community either in terms of autism, neurodiversity, or disability, people with psychiatric disabilities. All of these different umbrellas and, you know, we call them a community because we have something in common, but we are still individual people with different perspectives and opinions and preferences. And to me what matters, most in terms of museums working with these communities is that they are centering
the perspective of people with disabilities, autistic people, people who have other neurodivergent profiles or who have psychiatric disabilities, physical disabilities. What matters to me more is that those identities and perspectives are centered in this work and focusing on whether somebody is using the correct language from the get-go and having these rigid rules for how organizations and people should communicate with us, just totally erases, the opportunity for those organizations or people to learn that truly centering the perspective of these people means asking how they would like to be referred to or doing research about it and actually listening to what these people have to say about how they want to be referred to, rather than prescriptively having a list like, you know, a like an AP style guide about how to refer to a group of people as if they have no ability to tell you, how they would like you to speak about them
And going off of that last point- I don’t remember who I heard this from, but it’s one of my favorite quotes, “if you meet one person with a disability or any disability, you’ve met one person with a disability. If you’ve met one person with autism, you’ve met one person with autism.” Disability is not a one-size-fits-all.
There’s a multiplicity of ways that people would like to be referred to. But it also is a way of demonstrating that the onus is on the organization or the person that you’re working with or training to do this type of community work. It’s on them to center the perspectives of people with disabilities or people with Autism, whatever community that they’re working with. And really ask them how they would like to be referred to, or to do their research and hear from this community about their preferences and listen to that rather than well “somebody once told me to do XY and Z for this group, and something else for this group” and just being prescriptive and saying, “I know, best about what these people are about or what they need.” And what really matters is that those people’s perspectives and contributions are centered in the work that you’re doing.
Yeah, and that reminds me of the point that I was going to mate which is, I was once working with a museum that was sort of in the beginning stages of looking at accessibility, and they had found this, they were really excited about it, this guide- “How to engage with various disability groups,” and it was a good guide, but it was very rigid. Because again, there is this idea that you have to have a- and museums are especially larger ones, have an issue with this of, if we can’t find a definitive guide to it, or hire someone in who will tell us exactly what to do, we don’t want to necessarily risk alienating these audiences, or making the museum look bad. But I am pretty sure that most people with disabilities, especially people with autism, would be happier that you
are doing something and trying to do something and including them in your quest to do something then it being perfect. So it’s about the little things. When you’re talking about language being used to help make someone feel inclusive. It’s about, you know, maybe saying, at the beginning of a presentation or at the beginning of an event- tell me how you identify or tell me what you want to be called. That would be, go a long way of making you feel like your opinion is actually valued. And actually having people who have your disability your life experience actually involved and shown publicly. That’s one of the reasons that there is a lack of trust in a lot of institutions. Because so often it’s “we want your opinion,” and then your opinion is completely devalued by the actual actions. And on top of that people with disabilities, just as a general note, are used to having that happen to them. Are used to, you know, places not really doing the bare minimum, calling themselves accessible and then anything else is an afterthought. And so, even the smallest, you know, “we care about you. We want you to be involved. Here’s how you can get involved if you would like,” is huge. And by having community organizations doing that, you amp up that trust level and it communicates, this idea of “I am trying my best to bring you on board.” And communication and language doesn’t just have to be verbal. It can be nonverbal things. How do you structure your website? What logos to use things like that?
I really appreciated listening to your explanation of that, Ross. And I think sort of to try to summarize that I was thinking about Brene Brown’s work on belonging and vulnerability and shame. And she has this idea that belonging is being somewhere where you want to be and they want you and that fitting in is being somewhere that you really want to be but they don’t care one way or the other. And to me, that fully encapsulates what I’ve been trying to articulate for a long time, in my own brain of what is really the difference between inclusion and accessibility. If you go to a museum, as a visitor with autism and you see on staff that somebody is like you and that the museum isn’t making them hide who they are. And the same goes for people of different identities, whether related to disability or not. I think we all know that representation matters and true and authentic representation where you can be your authentic self and you feel like you belong, like, that is going to come through in your work, especially if you are a frontline staff member. And I feel like museums and organizations and the people who work in them either actually want this to happen, or they don’t. And if you want it to happen, then you’re going to figure out a way to make it happen even if, you know, you stumble over your words a few times and it takes you awhile to get your footing and you know, what matters is that you’re doing it from the right place and making, you know, a real effort to do it authentically instead of just slapping a label on something or, you know, just opening, you know, for the quiet
hours and removing those sensory elements, but not adding in anything to make up for it. And again, I can fit in in a museum, but I can tell the difference between when I am wanted at a museum or program and when I’m just allowed to be there.
It’s interesting to hear you both talk about that representation piece as another form of nonverbal communication, right? That, do we really care? Are we really investing in this? Are we really, you know, hearing from people with lived experience and having them a part of the process? And I think it says a lot about that need for continuing to diversify employment, right? And making sure there’s intentional hiring of a diverse body of staff at these places that we’re frequenting. One of the things that people without disabilities often, really want to know is what’s the right way? What’s the rule? What’s the go-to and the challenge here that we’ve all been talking about is that there’s not one right way the right way. The right way is what’s right for the specific person you’re interacting with in that moment, right? And it’s going to vary. And I think what scares people without disabilities about this is that it means putting in a little bit of work. It means active listening. It means observation. It means sometimes asking things that make us feel uncomfortable. And so I’m curious if you can give some advice because you also as you know, humans and people have to navigate how you refer to others. So curious what you do personally, when you’re thinking about how you navigate it?
In terms of autism, I use person first and identity first pretty interchangeably if I’m referring to it in a paper because it’s about 50/50 split. And while it’s growing in favor of identity first, it’s fairly interchangeable. It depends on what the context is, as well. Because if I’m, you know, referring to a bunch of self-advocates I’m going to refer to them as autistic self-advocates as opposed to
self-advocates with autism, unless in whatever I’m referring to specifically says, these are self advocates with autism or we are self-advocates with autism. If I’m referring to, the Deaf community with capital D, which is a culture in and of itself and is actually really fascinating to look into, I am going to refer to them as Deaf people with a capital D because that is a cultural group in the same way that any other cultural group is referred to, in with identity first. With every other disability, I generally use person first. And if someone, you know, wants to correct me on that, I accept the correction. If there’s somebody who’s part of that group. I generally try to use the most respectful language possible. And I don’t remember where I saw this quote, but someone with Down Syndrome, said “I have Down syndrome, Down syndrome doesn’t have me.” And that is a quote that has affected me for years and why I use person-first language primarily in a lot of ways because it’s about making someone feel that they are not entirely
defined by their disability. If that is not the way that they have defined themselves. Like Sam said much earlier, you know, I can’t be separated from my autism and that is true for me as well. I, you know, have to have headphones anywhere I go, and I have to be aware of, where can I go that’s going to be the most quiet. I have to plan everything ahead of time and to a lot of people who are not autistic, they might not understand that. However, I think that, again, it’s the years of a lot of cultural forces trying to take away humanity from people with disabilities. It’s about reclaiming that humanity that was stolen. Because I’m a human. I’m a person, and that is why I tend to start with person first. Then if someone has a different in how they identify themselves, I change it for that person.
I want to second just about everything that Ross said in terms of logistics. I also will just use “disabled,” “people with disabilities,” “autistic,” “person with autism” relatively interchangeably. Unless I am referring to myself or unless I am referring to somebody who has a specific preference. If I’m writing a paper or something I might put a footnote in and say, you know, one way or the other whether, we- I’m respecting that, you know, there’s a multitude of different perspectives on what people want to be called. Therefore, I will be using these interchangeably, or this audience in particular has asked to be referred to using person first language. When I was doing my early research, trying to read things by adults, especially young adults in my age group, who have autism there was that emphasis on identity first language that, you know, I mentioned when I came into this community, that’s what I encountered. So, I was looking for these conversations and it was difficult at first to internalize the word autistic because we have heard it in the mainstream society be told to us that, you know, we’re not supposed to use that word. We’re not supposed to call people that. That’s a word that people use to insult each other. You know, it was definitely, it took a lot of effort to realize that the word autistic isn’t a bad word and that it’s not a dirty word and that it’s not a bad thing to be autistic. But that these messages, those really get to you sometimes, you know, you’re not supposed to be here, and yet you are and, you know, you do have something to contribute and something of value. And, you know, at least for me, when I was first kind of getting into all of this and when I had first gotten my diagnosis, I would have instances more so with professionals in our field, then with friends, or with family members, where I would tell them about my new diagnosis and, you know, doesn’t this explain so much? You know, now we know and now we can, you know, figure out what accommodations we need. And you know, we can use this information to make my work better and to make our projects that we’re working on together better and I had, you know, mentors, never speak to me again after that. It was just odd to me, especially in a field where we’re talking about these ideas and you may be doing this programming yourself that you still have
this bias and this stigma about whether somebody who is one of your peers could be autistic. You know, I always knew I was different and didn’t know why and that is like, you know, the quintessential experience. Or maybe you did know why, but you knew you were different. And now I know why, but I don’t feel as negatively about the word autistic now. It’s just a flavor of difference. And you know, it doesn’t bother me to hear the word the way that it used to when I was first looking into this and pursuing a diagnosis. You know, this is who I am and I, you know, I’m happy to know that now, and I want to do what I can like because I do have the ability to do advocacy and to do interviews like this, that I have this opportunity to show people in our field the way that Ross does that, you know, you can be autistic and you can be a museum educator, but these are not mutually exclusive identities.
I’ll share my experience. I had previously applied to this museum for a fellowship and someone beat me out for it legitimately. It was, you know, someone who I ended up working within my program, great person, totally deserved the fellowship. But the person that I interviewed with wanted still to bring me on as a member of the floor staff. This museum’s floor staff had their interviews as a performative interview, which has a lot of ableism in and of itself. Because, you know, imagine someone who has PTSD being thrown into an area that they don’t know. And then, of course, some with autism being thrown into an area, they don’t know. And when it was brought up in the interview, I mentioned, you know, I probably did not perform as well as I could have, I have autism, but I’ve did X Y & Z at other museum that I was working at the time. And I felt the mood of the room of the interviewers who are not the person I’d interviewed with for the fellowship change drastically. It was night and day, the moment I said autism. It is so incredibly common for there to be stigma.
Thank you both so much for just sharing those personal experiences. And it’s just, it’s interesting to hear from your perspectives, especially because I have been interactive with you in spaces where there’s so much productive conversations about accessibility yet these perceptions and this stigma under the surface is still so prevalent. And it’s something that you still experience on such a regular basis.
The reason that you get to see conversations like this happening and see us being these authentic advocates, is because you create spaces where this kind of authenticity is allowed. You know, the work that you do and, you know, I’m sure the reason for both of us that we participate is because of those values that you bring to it. And we love to see it. We appreciate it
for real, because we know what it’s like to have to say no to something because they are not doing something in that way.
And to go off of that, too. Often times. I don’t get to be my authentic self, until somebody is uncomfortable enough, themselves, to understand what I’m experiencing. So, for example, this is an environment that’s allowed me to be that authentic self comfortably, without having to push back.
I wanted to kind of bring this bigger conversation, if we can because I know it’s big, to sort of a close in some way. First, I want to highlight that one thing we’ve all sort of come back to here is this idea that comprehensive access and inclusion is a big idea and language is critical, but it’s
just one aspect of that. So what’s a take away you hope a listener has in hearing our conversation today about the importance of language?
Language matters, but it isn’t the only thing that matters. And it isn’t the most important thing in every situation.
Be willing to take criticism. Be willing to be told that you are doing something different or that you need to do something different. It is not the end-all be-all to be wrong. And frankly, you learn more by making a mistake, then by being perfect all the time.
Thank you both for that.
Thank you for giving the two of us, a chance to chat. We can really get into it when we get going can’t we, Ross?
This was really fun. I really enjoyed it. So, thank you.
I’d like to thank Ross and Sam for sharing their stories and insights with us. And thank you for joining us for season three of Amplify Inclusion. We hope you’ll check out our next season after the New Year. Until then, be a part of the inclusive movement by rating and subscribing, and stay connected with us at AspireChicago.com. This episode was co-produced and engineered by Subframe Sound. This season was made possible thanks to generous contributions from First Bank of Highland Park and members of the Aspire community.
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