This afternoon I had the pleasure of speaking on a panel called Engaging Individuals with Intellectual/Developmental Disabilities in Virtual Programs, presented by the Chicago Cultural Accessibility Consortium. I have to say, this is the first time I’ve heard my bio read aloud to introduce me as a speaker, and I was like, “Wow, that’s me?! I did all of that?” So, that was a nice little confidence boost before speaking.
I shared a few ideas and resources that I want to post here for reference/so I don’t lose these thoughts, and a couple points I didn’t have time to elaborate on. If/when a recording or archive of the panel becomes available, I’ll link to it here.
Why I advocate for autism inclusion in museums
Working as a museum educator with a script to talk about objects and ideas and studying learning behavior in my graduate program helped me develop communication skills so I could actually carry an engaging back and forth conversation – at museums, at work, and in my personal life. I was diagnosed with ASD and ADHD as an adult, after I finished school. So, for a long time, I had all these challenges that I didn’t know how to describe. I’d bottle up sensory overloads from being at the museum and would have meltdowns/shutdowns and intense panic attacks when I got home, and have experienced autistic burnout, as my co-panelist, Ross E. described, especially once leaving school and working full-time. I used to think there was something wrong with me. But now that I know my diagnosis I celebrate the fact that I know these things about myself now, and that knowledge has given me language to talk about and understand my past experiences, and I understand more about my access needs and how to meet them. I see so many opportunities for autistic people in museums – if we can improve access. I can’t speak for everyone, just my own experience, but this is the “why” behind my advocacy.
Notes on language
I usually describe myself as “autistic” instead of person with autism, because I feel that there isn’t any part of me that isn’t autistic – it isn’t something I can turn on/off or leave behind. I see this preference for identity-first language in many self-advocates, but also recognize that some people do prefer person-first language, and respect that too. What matters most is that museums and individuals are respectful, and people’s preferences for language to describe themselves. I recently had an interaction with a group that used the phrase “people possessed by autism,” which raised a huge red flag; ultimately, I decided not to work with them because they didn’t seem to value autistic experiences, or recognize our humanity. On the other hand, a professional I was working to schedule an appointment with recently used terms like “self-advocacy” and showed they have a real understanding of the lack services for autistic adults in my community, and that gave me the level of trust I needed to decide I want to work with that person.
Museums and cultural institutions should also know that many people in the autistic community are moving away from describing someone as singularly “low-” or “high-functioning.” As I mentioned in my recent post on masking autistic traits, often, autistic people who are perceived as “high-functioning” don’t get the support they need, while those perceived as “low-functioning” are underestimated. It can be better to describe someone’s traits or specific type of supports they use as they relate to the specific program or experience. For instance, I would say, “Sam is autistic, usually communicates verbally, and needs captions/subtitles when watching videos.”
How facilitators can gauge the needs of participants before, during, and after programs?
Ask for participants to share their access needs with the facilitator, in whatever format works best for your program. This could be privately via chat, email, or Google form ahead of time, either from participants directly or their teachers if you are doing a school program, or shared at the beginning of a meeting. Recently, I had an experience in which the organizers of a meeting asked everyone to share access needs (if they choose to) when they introduced themselves and shared pronouns. The benefit of asking everyone in the group is there are some who might have invisible access needs, and it normalizes access (in the way asking for everyone’s pronouns does) and can help participants feel like they aren’t alone in having access needs. Of course some aren’t comfortable with disclosing disability access needs with a group, especially in their workplace, because it may make them vulnerable to bias and discrimination. So, options to communicate that privately or opt-out are important.
I do want to note that I felt comfortable sharing my access needs in the moment I described above because I trusted the organization and colleagues present, since they have demonstrated their commitment to equity and accessibility over time; this won’t work if your organization is going to turn around and use those access needs against a worker or program participant, and is most effective when your values are clearly stated and you have a track record of equity and accessibility work.
Especially if a program is long, or spans multiple days, it’s important to check back in on those access needs. For many disabled people, access needs or functioning levels fluctuate throughout the day or week. As a program facilitator, you can create a check-in system (e.g., thumbs up/down, a poll, etc.) to gauge ongoing access needs quickly, and then check-in with specific participants/teachers/caregivers to see what, if any, adjustments facilitators can make to support those access needs.
Finally, after programs, include opportunities to provide feedback about accessibility either informally or in conjunction with program evaluation. Use this data to reflect on the program and make adjustments, and to inform future programs.
How facilitators can ensure participants are making meaning from the content?
I referenced a study published in Autism, a peer-reviewed journal, called Autistic peer-to-peer information transfer is highly effective (Catherine Crompton et. Al, 2020). The researchers essentially set up a game of telephone between 3 groups – non-autistic people communicating w/ non-autistic people, non-autistic people communicating with autistic people, and autistic people communicating with autistic people. The researchers found that “Autistic people shared information with other autistic people as well as non-autistic people did with other non-autistic people. However, in the mixed groups of autistic and non-autistic people, much less information was shared.” The results from the study show that autistic people’s communication difficulties are “apparent only when interacting with non-autistic people.” Information is lost when non-autistic people are communicating with autistic people, and that affects meaning-making in museums, too.
As museum educators, we primarily aim for participants to make meaning from our programs and museum experiences; it is a core tenet of our work. So the question is, especially when non-autistic museum educators work with autistic audiences, how comfortable are you with that loss of information and meaning? To preserve the transfer of information and meaning-making in museum programs, you need neurodivergent staff informing, developing, and facilitating museum experiences. I strongly advocate for employing autistic people in museums, especially in education and programming, for many reasons, but especially because our different ways of communicating can increase meaning-making when working with autistic audiences. It’s estimated that 90% of autistic people are underemployed; that is, we have so much to contribute, and need pathways to accessible opportunities to work in our communities. How can you involve autistic people in museum programming, including efforts to make your hiring practices equitable and your workplace accessible, to broaden opportunities for neurodivergent museum professionals and increase meaning-making among your audience?
How institutions can apply virtual programs as ‘third space’ for social connection
Museums have the opportunity to operate as “third spaces,” or what Elaine Gurian referred to as “gathering locations.” Museums are places where people can connect with others, whether as part of a social group or by making meaning from objects and content that connect us to the human experience.
Museums, take note of the following information and consider this a call to make a real difference in your community. For many people with developmental and intellectual disabilities, there is a significant drop-off in services after leaving school. In particular, 1 in 4 autistic people report feeling “socially isolated,” meaning that they rarely or never see or talk to friends and aren’t invited to social activities. If you’re a non-disabled person who’s felt isolated during the pandemic, this is the reality for many disabled people all the time, pandemic or not.
I’ve seen a few museum programs that had great success in creating social opportunities for autistic people, that go a step beyond the accessibility of sensory-friendly hours and blossom into co-creative, inclusive experiences that have lasting impacts on participants’ social development or created lasting friendships. (Don’t worry…these programs can be organized around whatever content or educational goals touted in your museum’s mission. In case you were concerned about that.)
I love to reference Lois Silverman’s The Social Work of Museums, in which she writes that museums are “at their very core…institutions of social service.” I believe that if museums see themselves as social institutions, they’re well-poised to develop a relationship with autistic people; it’s a perfect fit between my community’s needs and your inherent purpose. If museums truly want to be inclusive of neurodivergent audiences, they will promote mutually-beneficial opportunities for learning and development. This means not only creating accessible and inclusive “third place” programs that offer social opportunities, but also including neurodivergent people in program design and implementation.
[This is about where I jump off from what I covered in my portion of the CCAC panel. No, I don’t have an off switch.]
We, the people, made museums; and we, the autistic people, are part of the “public” audiences museums aim to serve. Again, Silverman writes, “as a social creation, the at-risk experience implicates everyone, for we are all interconnected and interdependent” and thus museums must “recognize the need to address two major systems for change: people at risk and the social conditions that create and contribute to such risk.” The lack of services and social opportunities for disabled adults is a social condition that contributes to health and safety risks, including feelings of isolation, depression and anxiety, and suicide. Wherever your museum is, I assure you, part of your community is at risk. That risk of course extends beyond the effects of ableism and includes systemic racism, sexism, homophobia, transphobia, and so much more hurt, on personal and institutional levels. And if you have the power to lessen that hurt, if you have access to a third-space and a platform to share it on, I honestly don’t understand why you wouldn’t. It’s just not logical to me in any way.
If you thought the pandemic cancelled the “third place,” think again. There are of course typical virtual program opportunities, like tours or facilitated object lessons. There are also novel ways museums can engage autistic audiences virtually – for example, I really enjoyed participating in Animal Crossing New Horizons (ACNH) livestreams by the Field Museum and Monterrey Bay Aquarium. Of course, autistic people have diverse interests, but Animal Crossing has a strong autistic following. Anecdotally, and I’m a little ashamed to say it, but the only virtual museum programming I’ve attended as a participant since the beginning of the pandemic has been these livestreams. Most museums’ ACNH livestreams were one-off streams or part of a short series, but part of the reason videogame streaming is so popular is that it creates third-space communities online. I’ll be speaking more about how museums can use ACNH as a case example for creating content and programming that appeals to autistic adults at MCN Virtual 2020, along with some awesome co-presenters who will talk more about how museums created resonant ACNH content and the museology of the in-game museum.
This is just one example, but you can swap out ACNH for just about anything. I bet you have autistic people in your community whose special interests relate to your collection. As one of my favorite mutual on Twitter wrote, “Collecting IS autistic culture. Collections are part of the autistic experience…at the heart of museum collections, is an impulse to collate and organise…” Here, at their core, museums have more in common with autistic people than we’ve really considered. Seriously, check that thread out, and this one, too. I honestly can’t stop thinking about Badger’s idea that museum collections are at least in part the result of “an unacknowledged autistic cultural impact.” (God, what a dream PhD research question!) We, autistic people, made museums, too.
I’d love to see virtual programs for autistic people that are organized around collecting – what we collect, how we display and arrange our collections, and what our collections say about our identities and experiences. This topic is rich for show and tell, multi-modal discussion, and meaning-making. I know they say if you’ve met one person with autism you’ve met one person with autism, but – at least in my experience – but, anecdotally, I’ve haven’t yet met an autistic person who wasn’t thrilled to show off or talk about their collections. (Of course, all out experiences are different – and it’s okay if this doesn’t describe yours! There is still a place for you in museums. At least, that’s the world I’d like to see.)
Well, we’re a little off track from where I went with this in the panel discussion, but my point is this: keep the sensory hours, yes; and broaden your conception of what programming for autistic people looks like.
Thank you for reading! If you are here because of the CCAC panel talk, thanks for participating in that, too. I really liked working with CCAC, and appreciated the care with which they approached and met access needs for both panelists and the audience.
Again, I am so grateful for the opportunity to share these ideas with colleagues from around the country and I enjoyed listening to the other speakers talk about their experiences and museums. We are so lucky to have such insightful and passionate accessibility & inclusion advocates in the field of museum education and in the culture sector.