Autistic Self Advocacy Network

**This encore episode was recorded on March 21, 2022 **

Zoe Gross, the Director of Advocacy at the Autistic Self Advocacy Network (ASAN), discusses the mission of the organization, its resources, and the importance of preferred language.

**Show Notes**

• autisticadvocacy.org
• "Crisis in our Communities: Racial Disparities in Community Living": https://autisticadvocacy.org/policy/toolkits/disparities/
• "For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions": https://autisticadvocacy.org/policy/briefs/intervention-ethics/
• "Identity-First Language" by Lydia X.Z. Brown: https://autisticadvocacy.org/about-asan/identity-first-language/
• https://www.facebook.com/AutisticAdvocacy/
• https://twitter.com/autselfadvocacy
• https://autisticadvocacy.tumblr.com/
• https://www.instagram.com/autisticselfadvocacy/

Transcript

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- This is Katrin with Disability Rights New York. Welcome to our podcast, Empire State of Rights: Closed Captioned. We are here to bring you information on the most relevant topics regarding disability rights and advocacy. Today we welcome Zoe Gross, the Director of Advocacy, at the Autistic Self Advocacy Network, ASAN. She's here to discuss the mission of the organization, its resources and the importance of preferred language. Zoe, thank you so much for joining us today.

- Thank you for having me.

- Zoe, before we start, let's talk a little bit about you and your work at ASAN.

- Sure, so my role at ASAN involves coordinating the parts of our work that aren't directly policy-related. So communications, publications, grassroots advocacy events, all of that. Specifically, I do a lot of work on our Easy Read resources, which I know we'll talk about later. And generally, I work on communicating the work that ASAN does to the public.

- Yes, I can't wait to talk about your resources. They're so exciting to me as also a lover of language, and the variety of ways that you are distributing them. But before we get to that, let's talk about the Autistic Self Advocacy Network itself, and its mission, when it started. And how did this organization come into being? Why was it necessary?

- Sure, so ASAN is a policy advocacy organization run by and for autistic adults. Our goal is to make sure that autistic people are calling the shots and policy conversations about autism, whether that's about what kind of services we should get or what kind of research the government should fund around autism. ASAN was created in 2006 and it was responding to an advocacy environment where advocacy around autism was being run by family members, autism people, or by professionals working in autism sphere. But it wasn't connected to the goals and needs of autistic people ourselves. So ASAN was formed to change that.

- We were just having a conversation the other day with another person about the strong family-centered activism that really gets a lot of movement started. So I find that interesting and also it just seems that when we're looking at advocacy oftentimes it starts with family and friends and then that advocacy network grows which it sounds like that's part of this history here.

- Yeah, absolutely. So what we wanted to do and I wasn't part of it when it was founded but starting ASAN was very much about the evolution of autism advocacy from something that was family-centered to something where the voices of autistic people ourselves were being centered and represented.

- That's fantastic and now let's talk about the resources. As I said earlier, I'm very excited about them and the resources on your website they're available and Easy Read or Plain Language format. And so we've talked a little bit about that on the podcast before but for those in the audience who don't know, can you talk to us a little bit about what Easy Read and Plain Language is and why it's so important for policy makers and other organizations that need to have information brought to an audience to make sure that it's in this accessible format?

- Sure, so Easy Read and Plain Language are both cognitively accessible formats to communicate information they're more accessible for people with intellectual disabilities, other kinds of language process and disabilities, English language learners, and anyone who reads at a lower reading level for whatever reason. Plain language we generally shoot for a fourth, fifth grade reading level. It is the format and rules aren't as strict as in Easy Read but we wanna make sure that the sentences are straightforward that any jargon is defined that we avoid confusing sentence structures like passive voice. And generally that everything is as clear as we can make it. Easy Read there are more rules for that format. It is picture assisted. So every line on the page has an icon next to it that illustrates that line. Every sentence is its own paragraph. Every sentence you have only one idea whenever possible. And we wanna make sure there's a lot of white space on the page to make it sort of easier on the eyes and more accessible to people. So no more than five sentences per page.

- Thanks so much for that Zoe, I find that the white space is super important especially as we're accessing things on websites when we have resource that are available and not only is the white space at a minimum but then oftentimes there are popups or there are other ads that get combined with resources and that makes it very difficult to read as well. So I appreciate your explanation of that. And also the work that is being done to make those resources available in Plain Language and Easy Read. And so when we're looking at the other resources that you have the ASAN also has a lot of toolkits which we are also a fan of here. And I'd like to really talk about the "Crisis in our Communities: Racial Disparities in Community Living" toolkit. So this is addressing the barriers of BIPOC people with disabilities experience regarding community living and access. And so let's talk a little bit about those barriers and how does this toolkit not only investigate them, but how do they address the ability to navigate these barriers?

- Sure, so crisis in our community focuses on six areas where systemic racism has created inequalities that kind of compounded build on each other to impact disabled people of color's access to community living. The areas are emergency management, employment, community supports like HCBS, the criminal legal system, housing and healthcare. And one of the big takeaways from this toolkit is how different systemic inequalities interact with each other to create even bigger inequalities that have huge impacts on people's lives. So one example is that people of color with disabilities are more likely to live in areas that are heavily affected by disasters like flooding but both people of color and people with disabilities are more likely to live in poverty. So people at the intersection of those groups are less likely to have enough money to rebuild or relocate after a national disaster. And that's especially true for anyone who's on benefits like SSI because of the asset limit. So all of these inequalities, the fact that people are more likely to live in areas that are impacted by disasters, the poverty the asset limit to SSI, all interact to present huge barriers to successful community living when something like a natural disaster happens. Another example is interactions with the criminal legal system. So disabled people, especially black disabled people, are essentially being pushed towards prison starting in school because of the school to prison pipeline. And again, the inequalities stack up so disabled students of color are less likely to get appropriate diagnosis in sports. They're more likely to have police called on them in school or be arrested in school. Students of color are also more likely to live in areas that are heavily policed and to be targeted by police or violence or harassment or arrest. And then once arrested people of color, face racism in the criminal legal system that makes them more likely to end up in jail or prison. And then coming out of prison, having been in prison makes it harder to access employment. So these barriers stack up and you can see that the injustice, someone who's facing is a very own child in school is really limiting the opportunities they get for the rest of their lives. But one of the cool things about the crisis in our communities toolkit is that we also present from solutions to be systemic problems, solutions like regulations to end the school to prison pipeline or ending the SSI asset limit that I spoke about earlier in each area where we investigate barriers, we present some policy solutions that would help remediate the barriers.

- As we talk about these barriers especially around intersectionality and the compounding issues that go along with them. We often talk about the fact that people with disabilities and certainly people with intersectional similarities around barriers are not at the table when policy is being made or specifically around emergency preparedness, thinking about how are we looking at people with disabilities in a natural disaster, and how they're going to be have information relayed to them how are services going to be provided to them in the event of a natural disaster? So of course feeling the first step is having people with disabilities at the table when policy is being made or planning is being made, feels like it's certainly a step one to affecting change as well. And so as we talk about the resources and certainly I could go on and on about all of them because they are truly so wonderful and so thorough in each area. Let's talk about for "Who's benefit: Evidence, Ethics and Effectiveness of Autism Interventions." So we're talking about the ethics and purpose of autism interventions as well as the significance of including autistic people's perspectives and preference for autism service. Talk to us a little bit about this resource and why it's so important especially we're talking about the word preferences and why this resource is speaking to that specifically.

- Sure, so ASAN is opposed to applied behavioral analysis or ABA which is currently the most popular intervention for autism out there and is most on autistic children and for whose benefit unpacks why ABA is unethical and why it's not evidence based. So we review the lack of robust evidence for ABA. We talk about the dehumanizing behaviors view of autistic people, the idea that why we do something isn't as important as the ability to make us act differently. And then we talk about ABA's disturbing history of ableism versus like physical punishments and its connection to conversion therapy in its origins. But we wanna go further than that and make sure that people understand that we're not saying just because the service is not ABA doesn't make it automatically good. So the toolkit for whose benefit lays out red flags that are never acceptable in any therapy no matter whether it's ABA or not. For example, just considering something to be bad because it's a trait of autism focusing on social skills regardless of what the autistic person needs to learn or wants to learn, teaching autistic people to action on autistic instead of focusing on our quality of life. And an example of that would be trying to stop someone from stimming being the repetitive behaviors that are a trait of autism. And we also lay out guidelines for ethical therapies like being trauma informed, culturally competent, prioritizing access to communication and working with the person receiving the therapy or service towards the goals that they have for their life.

- I think the cultural competence part for me was-- it's such a great toolkit as far as strategies especially for someone who is new to the subject matter or maybe new to someone in their family and what it is that they can expect and what they can look out for. It's an invaluable resource and we'll be putting these resource links in the description of the podcast, because certainly we want to share them as much as we can for you. And so it seems like the next logical toolkit to talk about is the what about identity first language? And I feel like this is a conversation that I have at least on a weekly basis, if not daily, around words and how we are either speaking about disability or writing about disability, especially in terms of journalism. We're talking about person-first language versus identity-first language and why self advocates and their allies prefer certain terms such as autistic or autistic person or autistic in individual. And how can the public do a better job of understanding and learning about preferred language? I certainly feel like the conversations that I've had I've had different answers from different people. Talk to us about your experience as well as this toolkit, this piece of information about language and preferred language for advocates. And why is it so important to be clear on that?

- Sure, so first you just wanna make sure to give credit for the resource on our website. If you go ASAN's web you can find a piece unpacking identity-first language and that was written by Lydia X.Z. Brown, who's a fantastic autism advocate and disability justice advocate. And for many autistic people we prefer identity-first language because we find that saying person with autism, it's an attempt to sort of distance autism from personhood. And we find that the panic around saying autism to be more stigmatizing than if we just came out and said, autistic person, just like if I said, "I'm a person with Jewishness", you might have this thought, "Well, what's wrong with being Jewish? Why are you saying it like that?" I would just say, "I'm Jewish person." And that wouldn't give you that same thought of like "is Jewish just scary? Why are you distancing yourself from it?" So in the same way, I would just say, "I'm an autistic person." There's no need to kind of set us apart from it with language. But I do wanna say that for many disability communities and in particular people with intellectual disabilities person-first language is very important. The chapters of safe self advocates becoming empowered are often called people-first. So like people-first in Nebraska or people-first in Boone county, and that's because for people with intellectual disabilities, that person-first language is so critical. And it really, for that community, it makes people feel that their personhood is being acknowledged and not only their disability. So for each disability community, their preference language is really important. And one community can't sort of prescribe the language that all people with disabilities use. So if you don't know someone's preference in terms of how to refer to their disability, it's completely fine to ask. And it's fine to say, should I describe you as an autistic person? Do you prefer person with autism or if someone has multiple disabilities, do you prefer to be called a disabled person or a person with disability? And yeah what we do in our writing where we're just talking about disability generally is we use both disabled and with a disability interchangeably, just to honor the preferences of all those communities that have different approaches to how they prefer the language or disability.

- That's right, and so adding both is certainly addressing both. And also it's such good information to say you can always ask the person that you are talking to or interviewing. And certainly it's not only okay but you should be asking. And so as we move more into language let's talk about the terms neurodivergent or neurodiverse. And so when we talk about preferred language and how these two terms specifically seem to be everywhere now. I feel like that's something that's in just about every article that I'm reading at least during the week or sometimes daily. Let's talk about those two terms specifically and how they're being included in the autistic community.

- Sure, so these are two terms that are getting common. They do have different meanings from each other. So neurodivergent refers to someone with a neurological disability like autism and the-- to sort of unpack the word it has neuro. So your neurology and then divergent. So your neurology diverges from what's considered "normal." Neurodiverse refers to a group of people with different kinds of neurologies. So you can't say that one person is neurodiverse, just like I wouldn't say one person has diverse sexual orientations because they probably only have one sexual orientation. You would say in this group there are diverse sexual orientations meaning different people have orientations. So you would say this group is neurodiverse or you can speak about neurodiversity which is just like diversity itself the idea that there are different kinds of brains. And this is a good thing about our society and about humanity, that different kinds of brains exist. And that there is beauty in that and that all of us deserve rights and acceptance.

- Thank you so much for breaking it down for us. It is interesting in the ways those both those terms are used for individual labeling as opposed to for a group or a group of people. So thank you so much for breaking down the language. It is one of the key points of all of your information and resources that is so attractive and so interesting as I looked at your resources. I couldn't believe not only the volume of resources but how A) easy to read they are, how the information is so specific and so tangible and accessible and not just accessible as far as reading it or getting it on the web. But it certainly, it speaks directly to questions that people have about language, about how they can find resources and really the history of and why all of these things are so important. So thank you so, so much for all of these resources and certainly for coming on and talking about this let's talk to our audience how can they learn more about ASAN and its resources?

- Sure, so you can find all about us at our website autisticadvocacy.org. You can also find us on Twitter @autselfadvocacy. That's A-U-T self advocacy. On Facebook as the Autistic Self Advocacy network, on Tumblr autisticadvocacy.tumblr.com, and on Instagram as @autisticselfadvocacy.

- Thank you so much. And we will list all of those handles in the description as well as links to the resources. Is there anything else that you'd like to share with the audience before or we sign off or do you have any advice to those who are beginning their self advocacy journey?

- Sure, so when you're starting to come into autism advocacy and self advocacy, a guiding principle for autistic advocacy is that autism is a disability. And that may seems obvious because we're here on Disability Rights New York's podcast talking about autism and disability rights but you'll sometimes hear people asking things like "is autism a disorder or is it just a difference?" And it's neither, it's a disability. And disability is not a bad thing. A lot of our rights as autism people are disability rights, like our rights under ADA or IDEA or our right to receive community support. So, you know, I would really encourage people new to autistic identity, to embrace disability pride and the whole disability community that's out there waiting for you.

- Thank you so much, Zoe. It was a pleasure talking to you today. I hope we get to talk again soon. If there's any events that you have coming up or any new resources that come out, please reach out to us. We would love to talk to you again.

- Fantastic, it was great talking to you.

- [Narration] Empire State of Rights: Closed Captioned has been brought to you by Disability Rights New York, your source for disability rights and advocacy. If you enjoyed our program make sure to subscribe, like and share this post. If there is a subject you would like us to discuss please email podcast@drny.org or comment below. Tune in next Wednesday where we'll bring you more information on disability rights in the state of New York. The closed captioned and ASL version of this podcast is available on our YouTube channel. To listen to more Empire State of Rights: Closed Captioned follow us on apple podcasts and Spotify.