Ep. 012 | When Helping Hurts
Today, we chat with returning guest, Yana Ramos, a music therapist, as they share about how actions meant to help autistic people actually exposes them to significant risk of harm and trauma.
LEARN MORE
Inspiration Porn and the Objectification of Disability by Stella Young | TedTalk
Disability Justice at the Intersections by Ned Calonge | Online Article
Thinking Person’s Guide to Autism by Maxfield Sparrow | Online Article
The Autistic OT – @TheAutisiticOT on Facebook & Instagram
Ask Me, I’m Autisitic Facebook Group
TRANSCRIPT
Erica: Welcome, friends! You’re listening to The Feeling is Musical — as presented by the Snohomish County Music Project. My name is Erica Lee, and today we are talking about: When Helping Hurts, with music therapist, Yana Ramos, as the fourth and final episode to our 4-part celebration of Autism Acceptance month.
For those of you who have not yet met Yana, they are a music therapist with Snohomish County Music Project, who practices disability affirming therapy with families and individuals in Everett and surrounding areas. Yana is passionate about amplifying the lived experience of marginalized communities, especially those who are neurodivergent and disabled. During their clinical internship, Yana developed a program for strengthening positive attachment and child-facilitated communication among neurodiverse families. In their free time, Yana enjoys reading, creating, advocating, and cuddling with their service dog, Greta, who is also on the therapy team at the Music Project as quote unquote resident cutie. She really is a cutie.
[Podcast intro music plays]
Hi friends, just a brief message from Yana before we get started.
Yana: Thanks, Erica. I just want to note that in this episode and consequent episodes, I will be using the term autistic - autistic person, autistic folks. I personally use capital A Autistic for myself because autism - being Autistic is an identity for me. It’s not just this thing that was given to me as a diagnosis, or like this label that I want to separate from myself.
Often times you’ll hear like person with autism or stuff like that - ASD - and the - the overwhelming consensus from the autistic community at large is that we choose to claim being autistic as its own uh cultural identity. And that is why I, and the majority of the community, choose to identify in this way. Uh, that also goes for disabled - and some other disabilities choose to identify in this way as well. It is up to individual preference, but for me and - in these episodes - and for a lot of folks, this is how we choose to identify. So… Thank you.
Erica: Welcome back to the final episode, Yana!
Yana: Thank you, thank you.
Erica: It has been a wonderful journey through all things autism and neurodiversity —
Yana: Yeah —
Erica: This month. In our final episode for this particular series, can we start out with - for anybody that’s maybe joining us late to the party —
Yana: Mmm —
Erica: A little fashionably late —
[Yana laughs]
Erica: Uh, can you give us a very brief summary of what is neurodiversity, and what is the double empathy problem?
Yana: Yeah. So neurodiversity by itself just means that there is a diversity among neurologies. From that, uh, the neurodiversity paradigm - and a paradigm is like a framework or a model from which you can work - the neurodiversity paradigm says that, yes all neurologies are different, and no neurology, be it a more typical, dominant one or a divergent, less dominant one, is better than another.
And from that, the neurodiversity movement, which is based on the social model of disability, um says that because we all have different neurologies, and because, per the social model of disability, we recognize that the world is set up in a way that either enables or disables folks more than any type of disability or impairment - like, stairs enable folks who can walk and ramps enable folks who are in wheelchairs. Um, so from all of that, the neurodiversity paradigm says that ways of being that are divergent from the dominant way of being should be affirmed and celebrated, and that like there are ways that we can create spaces that enable folks with those identities to really flourish.
And um, the double empathy problem goes back to the sort of idea that autism, as a diagnosis, is like deficits in all these things, and that one of these things is that autistic people don’t have empathy because they don’t have theory of mind - they don’t have the ability to like understand that other people are thinking different things from what they’re thinking. And really what it comes down to is that the way that we feel, or express, or understand other - the way other people are feeling is simply different. No better or less than other ways of feeling, expressing, understanding how other people are. There just different. And those differences are often pathologized - so they’re often thought of as wrong - needing to be fixed - versus being affirmed, let alone being like celebrated. So…
Erica: Okay. So, listeners, if you are joining us to the party a little bit late, no worries, there is still plenty of goodness to go around —
Yana: Yes. And there are resources —
Erica: Uh, and there are lots of resources. So I would recommend - you can continue listening to this episode, but I also really encourage you to please listen to the rest of the episodes for this series: Being an Autistic Music Therapist, the Neurodiversity Paradigm, and the Double Empathy Problem to help you give greater context for this particular episode.
So, Yana, in in our previous conversation during our conversation about the double empathy problem, you were saying that in order for the community at large to engage with specifically with people with a autistic identity —
Yana: Mmm —
Erica: They require those people with neurodivergent thinking to conform to certain ways of communicating, presenting, engaging —
Yana: Yeah —
Erica: In order to be accepted - or in order to include them —
Yana: Yeah —
Erica: In the quote unquote general conversation. And that causes harm to those people - or it can cause harm - it can escalate from micro to really a large scale trauma or very significant event.
Yana: Yeah.
Erica: Can you tell us more about the types of harm this may cause - what the conversation is in the autistic community around this problem of harm?
Yana: Mmm.
Erica: Or what are people saying about it?
Yana: So the thing about that harm is it can be big - it can be literal physical harm to the point of death - kids have died while being restrained by quote unquote professionals. And it can be insidious in that there are like certain stereotypes that are just sort of accepted - like, going back to the double empathy problem - like autistic people don’t have empathy. Or like we need to train these autistic kids to act in a way that will make them indistinguishable from their peers - while they’re younger - we need to catch them while they’re young, um so that they don’t be autistic, right?
So that paradigm that says we need to train the autism away, or like teach these different behaviors to suppress certain behaviors because we view them as wrong - like stimming or like having to make eye contact… like that we need to make eye contact rather. When kids are subjected to any amount of that - either that specific therapy or even those ideas just being like repeated to them over and over and over, like in school or what -whatever, like - esp - but especially within certain therapies that are sometimes often considered like the gold standard for how to treat autism, studies have shown that those things cause serious traumatic responses.
Adults who have grown up in those types of therapy environments have increased like mental health needs and are shown to have PTSD from those experiences. And even just, um this idea - we touched upon it last episode - this idea of um having to code switch so constantly - that is seen as a good thing, right, to appear more - uh or less autistic, but even within that - that amount of having to do all of that labor for like no acceptance basically, uh that in itself is like micro aggression after micro aggression. So like I said, this harm, right, is big - er like is - is big and is little - I - an example that I have used myself is like, you could have a car - okay, this might get a little graphic, but you could have a car fall on you, or you could be berried like under a thousand toy cars, right. It still —
Erica: Mmm —
Yana: Hurts.
Erica: Mmm.
Yana: Um, just one is more like acute, um and one is just builds and builds and builds. And - so within the community, like people are trying to advocate and educate about therapies that really just work with the neurodivergent like neurology and just work with the strengths and like - yeah there are gonna be things that we can learn to help - just as anyone can learn to work with their own brain, right?
Erica: Mmhmm.
Yana: Um, but that - that - that the goal of that should not be to conform or comply or anything like that. Yeah.
Erica: That’s really interesting. And so that is the core of your particular practice in being disability affirming - that your goal - your large overall goal is to help people with every type of neurology find a way to be authentic in that neurology, and not try to conform or manipulate that - their being to fit another person’s mold necessarily… Is that —
Yana: Yeah —
Erica: Accurate statement?
Yana: Yeah. Yeah.
Erica: And so, what does that look like practically —
Yana: Mmm —
Erica: As - as a clinician. When you’re working with people and their families, what types of things are you aware of when you’re working with them?
Yana: It’s f - it’s funny to me - like, I’ve tried to sit down with myself and like think about how do you put your practice into words, right, and for me, like - for me it just really comes down to respect and curiosity - and like acknowledging that, yes, I have an experience that could be similar to someone else’s, and obviously we have a lot of experiences that are not the same, and what does that mean for me? It means that I - I’m always learning from whoever I’m spending time with in the therapy space. Like - like I go into doing therapy with, you know, big, overarching goals like you said, but I also - I approach therapy with this sense of like curiosity, and almost like - I don’t know, I feel like the word wonder is appropriate. Like, I love to know what other people bring into a space - like that excites me - like really just getting to know someone and forming that relationship. And not in the like - oh, like you’re different, let’s tok - tokenize you, or like, exoticize you, or what have you - but I’m truly like - it’s an honor to - to work with anyone that I - that I do work with.
So whatever someone is doing in like - musically, let’s just say [chuckles] because that’s what we do - um, if someone comes over and is playing on the piano, right, I first will observe and like get to know how they interact with the instrument. And then I will ask if I can join them, either on the same instrument or a different instrument. And I’ve had moments where - I’ve had moments where people have said no, and I’ve had moments where people have said yes. And then within that, I just - I try not to take up a lot of space in their music - it’s not about - it’s not about me - or like - I will support the music they’re making, like maybe providing an ostinato - like a - a steady, consistent like accompaniment underneath. Or not - depending, you know. But I will not um necessarily get them to play in a certain way, or like play like me, or lik - for me, I almost feel that the music component of music therapy is almost secondary - for me - to the being in relation part of therapy - of being - of doing that?
Erica: You said you don’t ask the client to play like you.
Yana: Yeah.
Erica: I see that as both disability affirming and trauma-informed.
Yana: Totally.
Erica: Because like - the - the other side of the coin to trauma-informed is not -isn’t just being aware of a person’s trauma, but it is preventative —
Yana: Mmm —
Erica: Against trauma and harm —
Yana: Mmhmm - mmhmm —
Erica: Do you see a lot of ways that trauma-informed care, in affirmation of a person’s disability - any type of identity really —
Yana: Yeah —
Erica: Walk hand in hand together?
Yana: Absolutely, yeah. I think that this idea of - like Colby said, there’s no bad in therapy, right?
Erica: Mmm, mmhmm.
Yana: And, when - especially because we bring all of who we are, like Vee said, into therapy - there is no bad in therapy , you know. And I think, sometimes people can be used to therapies looking a certain way - like, why aren’t you like shaking when you’ve been asked to shake or whatever - like shake your egg - and for me, it goes like beyond the surface of like shake or no shake —
Erica: Mmm —
Yana: Uh, it’s like…well, why? Like what’s going on - like is it a sensory thing? Is it a - something else? Like is there trauma surrounding being told to do anything? You know, like, what is it that’s making this response happen - and… uh… and how do I - how do I, as someone who is holding this space for - for that expression - how do I affirm the person in all the ways that they - that they are?
Erica: In all of our conversation about neurology and engagement - community engagement and the ways that uh people are expected to engage —
Yana: Mmm —
Erica: Um, I was thinking of - there’s a couple of movies that come to mind —
Yana: Mmm —
Erica: That have neurodivergent people represented as characters.
Yana: Mmm.
Erica: Um, the one that I am most familiar with off the top of my head is Forrest Gump.
Yana: Mmm.
Erica: And - have you seen Forrest Gump?
Yana: Yeah.
Erica: Okay. Those types of - well, first of all - back up a little bit. My personal belief is that Hollywood does not do a good enough job putting actual representation into actual movies.
Yana: Yes! [Snaps in the background]
Erica: So that is the backdrop for this conversation —
Yana: Mmm —
Erica: Okay?
Yana: Mmhmm.
Erica: That they don’t have enough people of color playing people of color. They don’t have enough fat people playing fat people. They don’t have enough uh neurodiverg - neurodivergent - just disabled people - they don’t have enough disabled people playing disabled people.
Yana: Yeah, totally.
Erica: LGBTQ playing LGBTQ - like —
Yana: Yeah.
Erica: The - these people - we are real, and we don’t need you to put us in - put other people in makeup and costumes and etc —
Yana: Yeah, tweet that! —
Erica: To become us. A chameleon is never as good as the original.
Yana: Whoa! Whoa!
Erica: This is my soap box.
Yana: A chamel - wow. Wow wow.
Erica: So - but… in your lived experience as an autistic person —
Yana: Mmhmm —
Erica: How do you feel about this type of representation, where - kinda put aside for a second that Tom Hanks —
Yana: Uh huh —
Erica: While a fabulous actor - but is not neurodivergent - like put that on a - on a side box for a minute - how do you feel about those types of movies, or that type of representation —
Yana: Mmm —
Erica: Is it adding to the negative aspects of the narrative around autism? IS it shedding light on autism? Um, what are your thoughts?
Yana:I… have many thoughts. [Laughs]
Erica: Well this is what we’re here for.
Yana: [Laughing] Um. Yeah, so, it’s funny because, you know, there can be good in like representation, right. But it’s not real representation as you said.
Erica: Yeah.
Yana: And these - these stories are often crafted around stereotypes —
Erica: Mmhmm —
Yana: And crafted around like negative - um negative ideas - outdated ideas - just ideas that appeal to the dominant masses that further other anybody really. Like —
Erica: To the - to the commercial aspect s of it —
Yana: Yeah. Yeah, yeah —
Erica: Yeah?
Yana: Yeah. And - and - so like, - if - like, there are movies, right, where there are like people with any diagnosis, like, whatever the diagnosis is, they’re given these like extra special like super powers - or not real - like they can’t fly [chuckles]
[Erica chuckles]
Yana: But - or they can - or they can, right. They’re just extra special, like - because - because why? Because they’re not worth it if they’re just regular disabled people.
Erica: Mmm.
Yana: Because, obviously, like - 1: that’s not - that’s not exotic enough - that’s not uplifting enough, right. We always need this narrative of… they overcame their disability by blah, right. And that’s - that’s - that’s harmful.
Erica: Yeah.
Yana: Like, people think it’s helpful to perpetuate these stories of like - oh, like look at this… like sweet - I don’t know, dad who took his autistic kid to prom.- like there’s an article that was like - this dad took his autistic daughter to prom, but when you actually like examine the article, we don’t even - 1: we don’t have any quotes from her.
Erica: Mmm.
Yana: 2: the dad’s like, yeah I wanted her to have the experience that I didn’t have. So like, why is he actually doing it? And 3: like, there were mentions in the article like - oh yeah, like she doesn’t have typical interests or like she doesn’t dress a certain way, or like whatever - like, they just further like - like perpet - perpetuating these ideas of like poor, different, less than, little disabled people.
Erica: Mmm.
Yana: Like isn’t it fantastic theat that they got this experience? And - and like —
Erica: It’s erasure.
Yana: It totally is. Yeah.
Erica: It’s going back to our second episode about social justice —
Yana: Yeah —
Erica: And Vee was on and talking about - oh we’re minimizing - or people are minimizing and erasing identities.
Yana: Yeah.
Erica: Yes.
Yana: Yeah. - so like, those - those myths of, either overcoming or like hiding, dismissing, or like, being so inspirational like oh my goodness look at you! You did it! Those myths are brought sometimes, even unintentionally, sometimes brought back into spaces where like the focus is like to help, right?
Erica: Yeah.
Yana: Like, these helping professions. And, to put aside for a second all of the - all of the erasure and stuff - if that can even be put aside, right - there’s this idea of therapy - just in general, I think, of sometimes, people think you go to therapy when there’s something wrong with you, right?
Erica: Mmm. Uh huh.
Yana: And that already sets therapists up in this position of power to fix.
Erica: Mmm.
Yana: And, so like, you know, this has been addressed on this podcast before, as you said, but just this idea of - especially disabled people - especially neurodivergent people - in many ways, we are the focus of the therapy.
Erica: Yeah.
Yana: And - Vee even mentioned this idea of - like, therapists with diagnoses, we’re not - like because we either don’t feel that it’s safe, or we don’t feel that we can activate those identities as therapists, because we’re just - just as existing as a human - uh, like a disabled human or a neurodivergent human, or what have you - we’re not allowed to activate those identities - just like beyond our role as therapists, right. So like… it’s just this cycle of erasure and fixing and pathologizing, fixing and erasure and… yeah.
Erica: Mmhmm… This is such a good conversation. I don’t really wanna draw it to a close, but we cannot have a 24 hour podcast. Can you imagine if we just sat here —?
Yana: I actually can [laughs]
Erica: You can imagine us constantly —
Yana: [Laughing] Yeah, I —
Erica: Greta would have to join us for more conversation.
Yana: Greta’s my - Greta’s my dog - my guide dog, bee tee dubs.
Erica: Anyways. Despite our inability to talk for 24 hours —
[Yana chuckles]
Erica: We are planning to have another episode where we talk to Yana specifically about disability justice, and so all of these themes from the month of April will be in that episode also. There’s also lots of resources available —
Yana: Mmhmm —
Erica: For learning more about disability and learning more about what it means to have a disabled identity, and ways of listening to disabled voices specifically. Yana, do you have any - like 1 or 2 resources that you could share on air, and then I can link a whole host of resources in the episode notes and on our website and so forth?
Yana: Yeah. So, as far as not dismissing or erasing autistic voices - especially those voices that don’t use speech to communicate, there is an anthology Called Typed Words, Loud Voices. As far as - like Erica mentioned disability justice, and I think we may have touched upon that in a previous episode - but um, there’s a good overview to that, um if you wanna get like a head start of like what I’ll be talking about in that podcast, there’s a presentation given by Lydia X. Z. Brown, who is a disability justice advocate and activist. Um, in addition to that, I will link some profiles of some disabled and neurodivergent advocates um so that you can give them a follow - like social media profiles - and they create and share really good content from, you know, other voices in the community.
Erica: That would be great. And I will put those - their social media links and handles on our website specifically. Um, so if you want that information, go to our website. Also, we’ll do another link - we have linked this previously, but I’ll link it again, to the Body Keeps the Score which is a really good —
Yana: Mmhmm —
Erica: book about the ways that your body holds trauma, and the history, etc, etc. If you have not read or listened to that book yet, I would really strongly recommend that book. I believe that every single one of our interns that comes through uh Snohomish County Music Project is near required to read that book —
Yana: Yup yup —
Erica: If not full on mandated to read the book
[Yana and Erica laugh]
Erica: Um, and most of our staff has read that book also. So, our website - if you would like to find out more - our website is S as in Sam - C as in Cat -Music Project dot org (scmusicproject.org). You can also follow us on social media @scMusicProject.
Next week, we will start a whole month long series for the month of May on mental health - I’m really looking forward to this upcoming month. Thank you, Yana, so much for sharing all of your experience and all of your knowledge, and just for being with us for the whole month of April.
Yana: Yeah, thank you for having me.
Erica: Oh and also thank you to Greta —
[Yana laughs]
Erica: Who’s been patiently taking naps during every episode recording. Thank you, listeners, for listening. Please share this podcast with your friends, with your network - anybody that might find it interesting, or find the information valuable - this podcast is not for us to hear ourselves talk, but it is to create a bigger community that has common knowledge and understandings —
Yana: Mmm —
Erica: So that we can cooperatively support each other in our growth and development.
Yana: Yeah.
Erica: And we will talk to you next time.
Yana: Bye!
[Podcast outro music plays]