Also Available on Spotify
in this episode, Julian, Alasia, Maggie, and Alex discuss the role self-diagnosis has played for people with disabilities.
We explore the concept and usefulness of self-diagnosis (or self-realization) and how it relates to our collective ability to access quality health services, and accessibility accommodations 9even for us in the arts space).
This episode was recorded before RFK Jr’s erroneous speech on the prevalence of Autism in the US where he attributed growing rates of Autism to “environmental toxins” without any evidence. More relevant than ever, how diagnosis is utilized, as a rhetorical and political tool is just as important to understand as a medical, mental tool.
Music for this podcast is by Carl Trunk from Pop Pop Pop Records.
“it’s a creepy stormy day”
Pop Pop Pop Records
Transcript
[00:00:25.03] – Julian Harper
Welcome to Art is the tool. I’m Julian Harper, the host here, and I am accompanied by my fellow hosts and coworkers.
[00:00:44.15] – Maggie
Hey, I’m Maggie.
[00:00:46.08] – Alasia
I am Alasia. I’m really excited to be here today. It’s been a minute since I’ve been on the podcast, so super hyped.
[00:00:55.18] – Alex
Hello, I’m Alex. I’m also super excited to be here on the podcast.
[00:01:03.17] – Julian Harper
We’re here today to talk a little bit about self-realization, or I think probably more commonly, people say self-diagnosis. What is it? Why is it important? And how it relates to some of the stuff that we do here at Art-Reach, and why it’s blowing, I think, in terms of relevance for individuals with disabilities and just individuals in general.
[00:01:37.10]
To maybe start off, a lot of the impetus was a book that a lot of people read. It’s called Unmasking Autism. It’s by Dr. Devon Price. That goes into a really interesting discussion about diagnosis, and what it is, and what it isn’t, and diagnosis might not necessarily be a way of you getting access to the things that you need.
[00:02:08.15]
Self-realization or self-discovery, in terms of an identity like autism or a reality of thinking and being, could be helpful outside of the frame of medical diagnosis. But how does that work, and what does that mean? I think that was an interesting starting point as it relates to some of our programs and why we don’t rely on diagnosis as a parameter in the stuff that we do. With that being said, what is it, and why are people engaged with it? Give a little bit of background here.
[00:02:52.15]
In my understanding of self-realization, I like to think of all diagnosis starts at the point of you put together ideas of symptoms and things that are happening, and then you bring them to someone. To me, diagnosis always starts with self-realization or self-diagnosis.
[00:03:14.08]
A lot of the current discussion wave around self-diagnosis is around, one, questioning the framework by which traditional diagnosis happens, whether that be the DSM and the history of psychiatric care, and the violences that have happened, and the way that they also hold their own biases in the way that, for instance, in particular, autism, how it’s been studied, specifically in boys. The diagnostic criteria emphasizes stuff that is… It’s literally built to diagnose little white boys.
[00:04:05.15]
I think self-diagnosis is about, one, a critique of how contemporary diagnosis happens, and two, also a realization of how diagnosis functions, maybe both as a point of potential access, but also as a point of regulation and of determining who is a part of a population that gets certain rights and who doesn’t. For instance, people with a formal autism diagnosis can’t emigrate to certain countries. Fun fact.
[00:04:54.17]
The book, Unmasking Autism, is talking a lot about those institutional and those larger reasons why someone might or might not want to approach diagnosis. Those are some first thoughts about it. I’m interested to hear other people and how they’ve come to it and thought about it.
[00:05:24.18] – Alex
This is Alex. I guess I forgot to mention this in my intro as well. I’m also self-realized, self-diagnosed neurodivergent myself, which is something that I came to realize just a few years ago, but also mostly through the work that we do at Art-Reach. Being around other people who do have official diagnosis as neurodivergent, other people who are self-realized, it really became obvious at a certain point. Like, “I’m like this, too.”
[00:06:00.05]
In the book, Unmasking Autism, it also just points out so many helpful things about exactly like you said, Julian, how the DSM-5 is still the diagnostic criteria that is used. Today, women or people assigned female at birth, people who are not straight white men, are so less likely to receive a diagnosis because they don’t fit into that very stereotypical 7-year-old boy that you were talking about.
[00:06:38.04]
I think, especially in the age of TikTok and stuff, people have been sharing their own neurodivergent traits. I feel like that’s been really helpful for people to feel more comfortable self-diagnosing or self-realizing themselves. That was definitely helpful in my own little journey.
[00:07:02.23] – Alasia
This is Alasia. I would like to echo what Alex is saying about having that self-realization moment, having those moments through the work that we do, through social media. I myself do identify as neurodivergent and haven’t had a formal diagnosis.
[00:07:28.14]
However, something that has been affirming as of late, and I’ve had to stop myself and be like, “Why is this so affirming?” But recently, my therapist bringing up a potential neurodivergent diagnosis and saying, “You have a lot of traits and the way you speak and the things that you’re saying, the way that you navigate your life, makes me think that you may be neurodivergent.”
[00:07:59.21]
It’s not something I had brought up to her before, so it was very affirming to be like, “Okay, yes. A medical professional is backing up something that I’ve thought about myself.” But then at the same time, I think It’s really hard to not feel so affirmed when you were faced with a medical professional being like, “No, you’re right. The things that you have been feeling and thinking to think about yourself are true,” and to have somebody who has that authority to say that it’s true, unfortunately, is still more validating than I want to admit that it is.
[00:08:43.15]
But I think that, as Alex said, there is a lot to be said about the emergence of people sharing their symptoms on TikTok. For me, if you’re not on TikTok, seeing them on Instagram Reels. But I’m also very interested in the various stigmas around self-diagnosis, self-realization, in addition to the stigma of having a diagnosis because that exists as well. It’s really interesting where it almost feels like it’s almost like a situation where no matter what you do, it’s like there is some stigma, whether it’s because you do have a formal diagnosis or whether you don’t have a formal diagnosis.
[00:09:40.01]
That’s what’s been on my mind. That’s what I’m thinking about, especially as we talk about the medical model in relation to self-realization, self-diagnosis, because it does depend on things that exist within the medical model, having a psychiatrist be the final lawmaker of what’s going on inside of you.
[00:10:07.23]
I’m wondering, when we talk about the social model then, how does that stigma come into play in the social model versus in the medical model? Because I think it exists in various models. It’s weird to want to find community on the basis of something that, for so long, has had to be an official documentation that is given to you by your doctor.
[00:10:40.06] – Julian Harper
I feel like there’s the pressure that people feel that imagines that the accommodations of the help, that the resources available to people are always scarce. I feel like that is at the heart of a particular anxiety that’s like, “You are claiming this thing, and you haven’t gone through the long, expensive, arduous, humiliating process of going through multiple appointments for someone to write on a piece of paper so that I can get access to this thing that I need? You are not this thing because I work really hard to get someone to write this down and to make that available to me.”
[00:11:30.18]
That’s hard because you have empathy for that because it’s like… But it’s almost like a larger… You brought up the medical model. There’s a larger system that believes in individuals that they’re the point of solving the issue, which is also at the locus of the problem.
[00:11:53.12]
Self diagnosis or self-realization is also a way of acknowledging a lot of breaks in that system, acknowledging a lack of access as maybe the first point and barrier, especially financially. I think in the Unmasking Autism book, it talked about the number of visits that families with Black children that they want to get diagnosed and how many more visits it takes to get a diagnosis. There’s these administrative things.
[00:12:34.17]
I also think that there’s something interesting about how the medical model is so easy to turn into policy. It’s a philosophy that imagines that care is something like oil that can be extracted and that can be exhausted, and then that it can also be valued at a specific price instead of the truth, in which it is a commodity that can go up forever because people need it to live.
[00:13:10.19]
But I also feel like, maybe on the flip side, there is a space where people don’t necessarily take the time to understand people with higher, maybe more expensive needs, maybe more community needs, and that the language around that where people who, in fact, maybe do need more resources, feel a little bit alienated by people who are taking up a lot of time and energy in a space that someone else has spent a lot of other extra time and energy in. That’s also really tough and really hard. I feel like that’s a pretty good background as to why self-diagnosis is becoming very popular.
[00:14:00.06] – Alex
It’s frustrating, too, because you mentioned how medical model is found so much in policies about requiring documentation for someone to prove their disability in order to receive an accommodation. It’s really funny because a lot of the ADA, or the part of the ADA that we focus on the most often, which is places of public accommodation, services, the ADA goes so far to really hit home the point that people don’t have to prove their disability to you if they’re requesting those types of services from places that aren’t places of public accommodation.
[00:14:49.19]
But then when we go and look at employment under the ADA, then it’s suddenly okay to request documentation to get an accommodation at work. I feel like most of the time when people are looking for an official diagnosis, it’s because they do need an accommodation at their job, and then the law tells them that it’s okay for employers to ask for that.
[00:15:19.08]
But it is frustrating, too, because you also mentioned, Julian, how expensive the diagnostic process can be. I know, at least, when it comes to receiving an autism diagnosis, I know that for most people, I think even regardless of whether or not you have insurance, there’s very long waiting lists to even get an appointment for that type of diagnosis. It’s such a long process.
[00:15:52.12]
Then on top of that, it can cost upwards of thousands of dollars just to get that piece of paper that says that you are diagnosed with autism. The entire process of receiving that medical diagnosis in itself becomes a barrier for people that only need it to break down a barrier at work, or at the hospital, or whatever they need it for. It’s always been very frustrating to me, that weird dichotomy within the law itself that is dictating when it’s okay versus when it’s not okay to ask for someone for proof.
[00:16:34.08] – Julian Harper
It’s funny, too, that for critics of self-realization, the processes that would make it less prevalent are simplifying and easing the process of diagnosis, biocertification, this process of having to prove yourself through these medical processes.
[00:16:57.13]
We work within the arts, and so we’re not necessarily engaged with that so directly. But from, especially, you guys have talked about speaking to front of house staff, and you see the process of biocertification all the time. When someone says, “You don’t look disabled to me, so I will not give you access to this program that you are allowed to have access to.” That is a process of biocertification in the most perverse sense.
[00:17:32.03] – Alex
We see that all the time in art spaces that we work in, like you said, with front-of-house staff. I feel like no matter what conversation we might be having on the podcast, it always comes back to training and just education for people. But it’s really people haven’t received training. They don’t know any better, and then they’re falling back on their own internal biases to decide for themselves what a person is or is not capable of.
[00:18:09.20]
There just isn’t a lot of trust in people with disabilities to know what is best for them, which is something that we just, unfortunately, see so often. That leads to situations where only people that have visible physical disabilities are being offered to use the elevator, and people who “don’t look disabled” are turned away from being able to use the elevator or the accessible restroom.
[00:18:43.11]
I feel like we’ve mentioned Ney quite a few. Our coworker, Ney, who uses a service animal, I feel like they come up on the podcast a lot as well. But I was traveling with them at a conference last week, and almost every single place we went, a person at the restaurant, a person at the train station was telling them what they can and can’t do with their service animal, when in fact, they know themselves best, they know their service animal best, and they shouldn’t have to prove that or justify that to someone who has never met them before.
[00:19:22.00]
That definitely comes back to at the heart of what we do. We try to remove that forced disclosure and try to educate the arts organizations that we’re partnering with, that that is a constant thing that people with disabilities are facing everywhere they go on a daily basis. Why not do what we can to remove that for them.
[00:19:50.02] – Julian Harper
Yeah. I think you pointed at something that is also maybe a large part of why self-realization would be a thing, and that’s expertise. You brought up, Ney… Ney knows service animals and the law around service animals very, very well, much better than anyone who’s ever coming up to them. More importantly, they understand their own disability and conditions, and experience.
[00:20:22.14]
In the book, it talks about self-realization, especially in terms of mental health diagnosis because of its very, very particular lineage, especially in its political and economic history. It’s very interesting learning about… This is another book, Decarcerating Disability, which talks about a very similar lineage between prisons and institutions, and the psychiatric world and industry was a huge, huge part of that, and that the poor house was not just a synonym for prison. It was where they put individuals with disabilities and the poor together in a place.
[00:21:05.16]
I think in the Unmasking Autism book, I think early on, it talks about diagnosis as a tool of political control, how political distance are given certain diagnosis. Even now, we’re still in a place where we’re seeing the moral model attached also to the medical model, especially in an age of anti-trans and that world where queer individuals were diagnosed to the DSM, and that has been suddenly transitioning from queerness itself to gender dysphoria. But even then, it’s a messy history.
[00:21:49.01]
I feel like in a lot of the spaces, we’re talking a lot about medical or social model of disability. But I think in a lot of ways, we aren’t necessarily talking about how it actually functions politically. That is as a way of deciphering who is allowed to work and engage in the political economy. It often isn’t as easy as saying that one should be proud of X when someone knows or has had an experience of diagnosis as a way of saying, you can’t work, or as a way of proving something about them, that they are lazy or that they are incapable of something.
[00:22:35.07]
I think the larger hope is that self-diagnosis or self-realization is a way of imagining the locus of expertise in the person, regardless that their experience and body is unique to them, which should give them expertise over their bodies.
[00:22:59.03] – Alex
Yeah. There’s so many things. Something you just said, just sparked another thought in terms of when it comes to providing diagnosis or providing an official diagnosis to the government. For whatever reason, a lot of people need to do that in order to receive social security benefits. But then if they are doing that, that comes with so many other prejudices. People with disabilities who receive social security literally can’t get married, or they will lose their social security benefits.
[00:23:37.03]
They also can’t have… I think the most money that they’re allowed to have in all of their assets is $10,000 in savings. They’re not allowed to have any more than that. It’s this weird thing where they need those social security benefits, and they need the diagnosis in order to get those benefits. But then having the benefits in the first place creates all these other burdens on the person. That makes me angry.
[00:24:10.02] – Julian Harper
Totally. It’s truly forced poverty. I think that might also be part of the frustration maybe that individuals feel who have gone through that process, who are doing their best to maintain their SSI or SSDI benefits and are like, I have to prove this amount of work, but I also know that I can’t go above these particular assets. I have to always be vigilant because I am always… These benefits are also always under attack, and that I’m always used as a political tool to visualize a metaphor for waste.
[00:24:54.16] – Alasia
Well, I’m thinking of it in layman’s terms, it’s like, you got to pay your dues. You got to pay your dues if you want a diagnosis. You have to go through all of the BS to get that diagnosis, to eventually get those benefits or that accommodation. If you do self-diagnose, if you do engage with self-realization, then the way to prove that you really have it, that you’re serious about it, is if you put in the work to go after that diagnosis. That seems to be the vibe, so to say.
[00:25:51.14]
But yeah, all of this, I feel like it’s just coming back to, okay, time to pay your dues and prove that you are deserving of XYZ. Then, as you said, even when you get XYZ, it could be bad to get XYZ because you have all these restrictions put on your life legally or that are financially binding. It seems like a lot of work to get a diagnosis that could still further complicate your life.
[00:26:32.06]
In some ways, it’s like, “Yay, I got the diagnosis.” In other ways, it’s like, “Oh, great. Now that I have this diagnosis, I have to deal with all of these other barriers, and I’m just creating more work for myself to continuously prove that I really need these accommodations,” which, as I’m sure you all know, for people who are neurodiverse emergent, or at least in my experience, that is so difficult.
[00:27:05.10]
It’s almost tailored to make the exact person who needs this diagnosis or needs these accommodations to jump through hoops that are specifically made to be difficult for the way that they navigate the world or their brain works.
[00:27:26.13] – Julian Harper
Are you saying that they make it difficult for people to access the benefits that they need, possibly intentionally?
[00:27:41.06] – Alasia
No, Julian. No, because they care about us. Come on. They care. They put the care in health care.
[00:27:48.01] – Julian Harper
They’ve got all the flags they love.
[00:27:52.22] – Alasia
It’s such a funny little system. It’s like any other system that exists in this country where we’re like, “The system is working.” Are the masses learning about self-realization from TikTok? Is that rebelling? I feel like that’s full circle to where we started, where it’s like, “Is self-realization, is self-diagnosis the defense against this very formal world of diagnosis?”
[00:28:34.21]
I don’t know if necessarily the people who are engaging with it on TikTok, especially younger folks, if it’s coming from a place of, let’s rebel against the medical model, let’s rebel against the difficulties, or if it’s coming from… I see it as coming from an even more human tender place of like, “Oh, finding community. I found something that clicks and something that makes sense to me.” Even if I don’t take what I’ve gotten from TikTok and go to a doctor and get that diagnosis, who even cares?
[00:29:12.21]
Maybe part of it is just about finding that community and sometimes getting those trickle-down coping mechanisms, trickle-down information. You’re like, regardless of whether or not this was created “for me,” based on whether or not I have this diagnosis, it still helps.
[00:29:35.23]
I color code my personal calendar, using the red light, green light, yellow light system because that is helpful for me to keep track of, okay, I have a lot of high energy things that are maybe anxiety inducing or cause me stress in some way. Then I try to put in a lot more green things that are restorative or recharging, and then my yellows are neutral. But visually balancing my calendar is something that I found on a site that was talking about neurodivergent and autism and ADHD, and I’m just reading these sources in hopes that I’m like, “Let me try out some of these things, and maybe they’ll work.”
[00:30:27.02]
I feel like there are so many different reasons that one might seek self-diagnosis or might engage with self-realization, whether it is the baseline of I just want to understand what’s going on in my head a little bit better, and I find comfort in reading Reddit posts and seeing TikToks from people who are similarly navigating the world the way that I am, and they’re able to share information that has helped them, and maybe that helps me.
[00:31:03.05]
Then there’s like, “Okay, am I going to take that now and go to this authority figure in Psych Land who, maybe if I need it, can then give me access to medication that I need?” That’s the next step that I see where I’m like, okay, maybe it gets to the point where you’re like, “I do want this,” or “I’m interested in seeking out this access service, medication, tool, whatever that can only be granted by the powers that be because they have the special piece of paper that says they went to school, that says that they have the authority to give you drugs.”
[00:31:44.21]
I’m like, there are some ways where I’m like… Sometimes it’s like, okay, I got to bring this up to these formal institutions that you go into it, or at least I go into it, and I’m like, “Oh, I’m a black. I am a woman.” There’s all these other things that we talked about before. But yeah, I feel like there’s such a range, there’s a spectrum when it comes to self-realization and what one hopes to get out of that.
[00:32:18.12]
For me, when it has just been looking for coping mechanisms or tools that I can use or just finding community being like, okay, I’m not alone in this. I’m like, “Oh, good. Other people struggle with these same things and have to do these specific weird little things to get themselves through the day as well. Great. Awesome.” It almost feels like with self-diagnosis, there is a cap before you get into that space where there’s comfort, and then there’s the difficulty that comes after, then you might get back into comfort.
[00:32:59.11] – Alex
Yeah. You said something a few moments ago, too, that… So far, we’ve just talked about people who are seeking formal diagnosis because they need it for something, because they need to prove it to someone else, like Alasia just said. But we haven’t talked yet about, really, the people that are seeking diagnosis because they need to prove it to themselves.
[00:33:23.16] – Alasia
Yes. Like, what if it’s for me?
[00:33:25.13] – Alex
Yeah. That’s something, too, that I think when it comes to self-realization, I feel like this is maybe mentioned in Unmasking Autism, too. The imposter syndrome is so real when it comes with that, too, because I know I went through it. I still experience it. I’m like, “Wait, am I?” I don’t know. Because we’ve been taught by society that if we don’t fit that stereotypical criteria, we’re taught to question whether or not we’re right. You have all these people who feel that they might be neurodivergent who can’t even trust themselves to know if that’s actually true.
[00:34:04.18]
Then they, like you said in the beginning, too, Alasia, it was actually affirming to hear that from your therapist. That sucks. It’s great to get that affirmation. But there are so many people that feel that they have to be validated by a medical professional in order to be themselves, I guess.
[00:34:28.07] – Maggie
Yeah. Something that you said earlier, too, Alasia, about it being or feeling a little bit at this moment, it’s very generation to generation, what the attitude is, that’s definitely something that also doesn’t stop at self realization for neurodivergence. I’ve experienced that in the medical sense, insofar as being assigned female at birth and having a chronic headache disorder. My first neurologist was like, “Hey, diva, girls just get headaches sometimes. Take some Excedrin.” Then 3 months later, I came back and was like, “I’m still having debilitating 2-week long migraine’s queen. Can I get a little more help?”
[00:35:13.12]
Even then, I feel like as I was starting to then realize, okay, so this is going to be mostly me self-managing, finding resources and community online. But even talking with folks across generations in my own life, there are folks in my family who were like, “Oh, well, don’t go down the thought spiral about what might be happening. Because even though this is a brand-new thing unsettling for you at a very particular time, it might just be stress.” In fact, reader, listener, 2 years later, it’s not. I’ve had many scans of my brain. There’s stuff going on in there.
[00:35:57.20]
I feel like it took me a really long time in trying to navigate the system. Also, it took me so long to break up with my first neurologist because I was like, “Oh, well, I am just a girl. I might just be.” The imposter syndrome of it all. Even though it’s something that I’ve been experiencing for years now, it’s very interesting.
[00:36:52.17]
This is, again, a pop psychology book that I read, I bought for five dollars the last time I was in New York City, but the title looked interesting. As a person who identifies as introverted, dare I say, shy until you get to know me, I prefer to walk through a place I don’t know and not be perceived at all. I picked up a book called Talking to Strangers: What We Should Know About the People We Don’t Know. It’s by Malcolm Gladwell. He used to be a columnist, I think, for the New Yorker. One of those.
[00:37:35.08]
It’s basically a book about truth default theory, which is a theory that was… I have the Wikipedia. Some guy named Timothy Levine, who is Chair of Communication Studies at the University of Alabama. He’s also had research funded by the FBI, unfortunately. But a lot of this theory basically is something that Timothy Levine primarily has used in work around policing and interrogation. It’s his thought that humans as a society default to truth for many reasons.
[00:38:20.03]
If someone comes up to you on the street, and they say, “Oh, I need to get to 14th and Chestnut. How do I get there?” And you say, “Take two lefts and a right,” you’re going to take that at face value, believe them and hope you get there. But because Timothy Levine was interested in researching about why people lie, why people are being deceptive, particularly, obviously, in a crime scene sense, it’s that, generally, as a society, we default to truth because it’s better for society if we all believe the truth from each other all the time.
[00:39:12.03]
If we were all constantly looking at each other and second-guessing and being like, “Are you sure that that’s how I get to 14th in Chestnut?” Then things would crumble, we wouldn’t function very well. As we’ve been talking about moments when you’ve at a site and have had people be like, Oh, are you really disabled enough to need that accommodation?” Or like, “Oh, is that service animal really allowed to be in here?” I’ve been thinking a lot about the idea of, well, if truth to fault theory is the thing, what if it’s not actually? Clearly, it’s not, especially the disability community.
[00:39:57.03] – Alasia
It’s not for some people.
[00:39:58.02] – Maggie
It’s not for many people.
[00:40:00.20] – Alasia
It’s like, you are not trusted. As I think Alex, you had said that before. It is so front of… That happens in museums. People just do not trust when somebody’s like, I have a disability.
[00:40:17.05] – Maggie
Especially in the medical model, I know Julia and you and I have had many conversations about the patient is something to be worked around. The patient is not a collaborator in their own care. I’m literally using your words there. That patient is like… When I go to the doctor and I say, “I’ve had a migraine for 2 weeks,” they say, “Oh, have you really? Actually, have you? How bad is your pain? Can you rate it on a scale of 1 to 10?” Let’s do some tests. Even when the tests are done, and they’re looking at it, they’re like, “You’re so young.” It’s, well, I don’t…
[00:40:50.07] – Alasia
Well, you have to be 35 to tell the truth.
[00:40:53.20] – Julian Harper
How could it happen if you’re young, even though you have all the symptoms for it?
[00:40:58.10] – Maggie
No, for real. Exactly. Also, I don’t know, but it also ties back into something that we were talking about earlier in that diagnosis in that way, can very much be tied to real administrative social violence. Also, again, this is not the book. I’m going to be so real. The book actually isn’t that great. The book uses… It lays out the idea of what truth default theory is. Then the rest of the book is basically just going through different scenarios and case studies, particularly of, they talk about the Sandra Bland case, and they talk about the Brock Turner case. There was some big scandal in the ’90s where some CIA operative was actually a Cuban spy or something and had been for years.
[00:42:11.15] – Julian Harper
No, I’ve read this book.
[00:42:15.03] – Maggie
Well, then why don’t you talk about it? You’re better at it.
[00:42:19.03] – Julian Harper
No. I think you are speaking about it very well. It also talked about… I think they talked about Bernie Madoff, too.
[00:42:28.15] – Maggie
Yes. They sure did.
[00:42:29.10] – Julian Harper
Yeah. I think one of the cases they make that’s like, these scammers or these things that happen, they’re not geniuses. We just assume that they’re telling the truth, which is interesting. There could be a larger thing, like how our criminal system is not good at solving cases and crimes.
[00:42:51.05] – Maggie
Because that’s not what it’s about.
[00:42:52.04] – Julian Harper
But I’m with you, though.
[00:42:59.16] – Maggie
Okay, heard it. Great.
[00:43:01.04] – Julian Harper
Because what you’re saying is that this is an interesting theory, but it brings up the way in which we, in fact, treat disability oppositely because of the way that our medical system is set up, where it’s all about proving yourself. It’s all about a… We’ve talked about just how your doctor is maybe closer to a priest than anything that you are showing your sins. What did you eat? How much did you exercise?
[00:43:42.06] – Maggie
Do you drink coffee?
[00:43:43.07] – Julian Harper
How closely are you doing your regimen, your pills? How often are you seeing someone? Are you seeing this person? Are you getting this referral for this person? Are you doing all those things? I think how it relates to our conversation is, a lot of this originate in the mental health and psychiatric space. But I think the larger thing is that we’re talking…
[00:44:08.23]
I think a lot of self-realization comes from this understanding that the amount of people who fit into the model of the healthy person is so small. That it isn’t just this idea of the healthy body is truly mythological. That if you go through the DSM, seeing all the ways in one could quote deviate from the perfect body, it’s astronomical. One would be hard-pressed not to diagnose oneself if one went through the entire DSM, which calls into question what this process does and who it’s for and how it functions.
[00:45:10.16]
That even, like you’re saying, in the medical space, there’s not… There is still this dynamic where your doctor isn’t just engaging with the objectivity of science. It’s also engaging with the moral and policy understanding. Even really recently, there was a conversation, I have a kidney disease, and the way in which your stage of kidney disease was rated would be different depending on your race.
[00:46:03.09]
There’s race science that exists within diagnosis all the time. I think a lot of self-realization is about, this mythological healthy body, I can’t keep up with it. Like you were saying, that there’s all of these tools and things that one might not understand in the medical space as accommodation because maybe they can’t be quantified and sold so easily, but they are maybe life-changing in the way that they provide a more comfortable and livable life.
[00:46:55.03]
I think that is a lot of it, too, is that I feel like there are a lot of people who are in between. In between, there’s some people who… Working through the benefits of the government is so crucial that they don’t have the privilege or the option to forego that.
[00:47:27.21]
That isn’t antagonistic to people who recognize that they are thinking different, and you’re feeling differently. They feel like they found a group of people that think and feel similarly and ways in which they’ve made their lives better and the people who imagine themselves outside of that space in a non-disabled space.
[00:48:00.07]
I think there’s just a larger and larger amount of people in between there. I feel that’s where a lot of this growth in self-diagnosis. I do feel there is maybe a little bit of legitimate anxiety with TikTok.
[00:48:18.21] – Maggie
No, for real.
[00:48:19.23] – Julian Harper
The way that… I think the real worrying thing is the way that normal things become pathologized. That rather than working only in one way where the things that are different come together, and you find community, and you find ways to make your life better. The things that are completely normal and banal and mundane are being turned into-
[00:48:51.21] – Alex
Yes.
[00:48:52.02] – Maggie
You’re talking about gut health now.
[00:48:52.11] – Julian Harper
Are being transferred into pathologies, which is-
[00:48:56.13] – Maggie
Have you checked on your microbiome and your gut lately?
[00:48:59.00] – Julian Harper
Is so terrifying and so funny. I think that’s where a lot of anxiety comes from, from people in professional space and where there’s so much misinformation that we have to work through.
[00:49:21.23] – Alex
[crosstalk 00:49:22] to there are so many people that have emotional support animals that believe themselves that this is a service animal. When in fact, when they try to bring their animal places, it’s just harming the people that actually do have legitimate service animals. I feel in the same vein. There’s people that maybe are not actually neurodivergent who are convincing themselves that they are because of one little video that they saw on TikTok.
[00:49:55.21] – Julian Harper
I feel like that, too. They’re engaging with this language and feeling Oh, I can take claim of this. Now I’m going to talk in the language of discrimination. Is it discrimination? I’m going to go to this place, not understanding that discrimination is a legal apparatus, and you have to understand so much as its own beast and animal. That is an interesting, maybe a full circle part of the… I don’t think…
[00:50:22.15]
We do not personally believe in over utilization as a problem. We don’t believe that people are overutilizing services, health, arts, otherwise. We want our definition and knowledge of disability to be as wide as physically possible. But it is hard when there’s a lot of… When the information that is really easily available might not lead people to the access that they need.
[00:50:58.09]
That can be hard and difficult to be like, “Hey, it sounds like this really appeals to you and that you want to be a part of this space and community. This is not how you’re going to get access to that thing.” That’s okay. But being a part of any community is not necessarily about being the loudest.
[00:51:26.17]
I think maybe there’s a little bit, too, of learning and coming together. Because I think a lot of it, too, is that those spaces are not… As much as it feels like you’re going back and forth between people, you’re not. That’s really tough, too. But I think I definitely… One my least favorite phrases or words is overutilized. Because it’s its own philosophy that has…
[00:52:07.20] – Maggie
Especially in the arts space.
[00:52:08.19] – Julian Harper
[crosstalk 00:52:10]. No, no, no. All I was going to say, it’s a philosophy that has fundamentally ruined American health care forever.
[00:52:20.05] – Maggie
So real. When it comes to the work that we do, I don’t know. There have been times where there has been concerns about a program being taken advantage of or ‘overutilized.’ I’m truly just at a loss at that point. Especially in art spaces, it’s like, you’re going to… We’re going to really over… I’m trying to be very…
[00:53:06.23] – Alex
There’s no happy medium because when we go to arts organizations, the first thing they’re usually frustrated about is that their access programs are being underutilized, that no one’s coming. Then ultimately, the decision is like, “Well, no one’s coming, so we’re just never going to do it again,” which is obviously not the solution.
[00:53:25.23] – Alasia
Yeah, they’re so funny. They’re like, “Why doesn’t the disability community that we’ve never tried to earn the trust of when I come to our programs?” Then it’s like, you know what? Screw them. They don’t deserve programs anymore because they didn’t show up to the first one.
[00:53:40.06] – Maggie
We both connected in the worst possible way.
[00:53:41.21] – Alasia
Yeah. Guys, come on.
[00:53:44.04] – Alex
Or at Art-Reach, we have a program that offers people with disabilities and people who have low income and receive state benefits to access cultural sites at a very deeply discounted cost. Alasia and I face organizations that have anxieties about too many people coming at a low cost, which is like, wow.
[00:54:12.02] – Alasia
They’re like, we can’t have all of these disabled people who would benefit from the removal of this financial barrier, come enjoy the arts. It’s just too many of them. To which I so eloquently say, guys, it’s not that deep. It’s not that deep. I know that it’s deep for you, maybe because capitalism, blah, blah, blah, your bottom line, blah, blah, blah. But it’s not that deep.
[00:54:45.11] – Maggie
It’s how deep that exclusion goes, because then it’s like, oh, what’s the first step? It’s like, oh, we’re not going to have any information about it on our website. You have to call us. You can’t just…
[00:54:55.19] – Alasia
It’s a secret.
[00:54:57.20] – Maggie
Yeah. You can’t get your ticket in the way that anybody else can. Then, when you do call, you have to…
[00:55:02.20] – Alex
You can’t just show up because again, you have to force your disclosure. You have to disclose in order to get anything.
[00:55:12.14] – Alasia
Then, God forbid, you don’t look disabled enough because this is something that Alex and I have to deal with sometimes when talking to partners. They’re like, “But what if this person looks so able-bodied? What then?” We’re like, “What do you mean what then?” Give them their ticket. What do you mean what then?
[00:55:32.17] – Maggie
It’s none of your business, actually.
[00:55:34.17] – Alasia
Yeah. I’m like, stop being so nosy.
[00:55:36.21] – Julian Harper
I was about to be rude.
[00:55:41.00] – Alasia
Be rude. [crosstalk 00:55:42]
[00:55:42.19] – Julian Harper
I was like, is this your bad? It’s funny in an episode we’re talking about self diagnosis to be like, “Are you a doctor?”
[00:55:55.22] – Maggie
Oh, would you like to look at my-
[00:55:59.08] – Julian Harper
But it is definitely like, your job isn’t to do that, right? Your job is to sit here and admit people into the facility.
[00:56:11.13] – Alasia
Well, as somebody whose job it was to do that, it turns out it is your job to say, “Hey, I noticed you have a dry, closed umbrella. You are not allowed to have that here,” even though it’s being used as a cane, clearly.” It means having to, real example, go and be like, “Hi, sir, we’re being watched on the cameras right now, but I am supposed to ask you or to tell you that you can’t have your umbrella. However, I see that you might be using it as something you need to use.”
[00:56:49.23]
It’s literally a mobility. You might be using it in this way, to which he’s like, “I am. Thank you for getting that. Please, can I keep my umbrella?” To then have to tell management, “Hey, I’m going to let this man keep his umbrella, which is clearly being used as a mobility device.” He’s using it as a cane. He’s not going to go and hit all of the Picasso’s out of anger or something. Then at the end of the day, I’m like, it’s not my job to tell somebody that they can’t use something that… I think part of it is the legitimacy of using something else that isn’t a cane as a cane.
[00:57:28.00] – Maggie
It’s giving cop. [crosstalk 00:57:28]
[00:57:29.11] – Alasia
No, Exactly. I’m like, why am I policing? Don’t make me police. Don’t make me go after. When I am on the job being told in my little radio, hey, I see somebody who… It looks like they’re breaking a rule, and that rule is that they have a mobility device or something that you might not see as being a legitimate enough mobility device, but still is. Then I’m like, “What are we doing here, guys?” This is a cultural site. We’re meant to look at the art and allow people to look at the art, hopefully without hassle.
[00:58:07.12] – Maggie
Like, oh, the person is looking too close to the wall text. That is like nine point font.
[00:58:12.02] – Alasia
Yeah. I’m like, sorry that it’s hard to read. I’m sorry that somebody might have low vision, and it’s literally difficult to read the text that you chose to put there. It made it tiny.
[00:58:24.00] – Julian Harper
I think we’re getting into the more subtle ways that policy becomes discriminatory or discrimination becomes policy, some of that coming from wanting to create or preserve a culture that subtly dictates how and who gets to see and look at something, from the infrastructure to… You’re talking about the apparatus of, you’re getting checked in.
[00:59:16.06]
Many places, you’ve got to pass through your security gate, your security guard, your front desk person, or your gallery attendant/security person, or even like chairs. I always think about the visual arts and how there’s… When a gallery doesn’t have a chair, it tells me that they don’t want me to look for very long, and they want me to keep it moving. But I know, as a visual artist, one of the biggest complaints with audiences is how little they spend on looking at art.
[00:59:59.10] – Maggie
After paying whatever price they paid to get in.
[01:00:03.17] – Julian Harper
It’s also just about subtly encouraging a particular kind of viewer. A while ago, we talked about theaters in a similar way and how the space is. We’re talking about our program where we are trying to work with these arts organizations and making sure that we’re trying to create a program that lowers the price for admissions for people. I think a funny thing, too, is that we were getting at the cycle of inaccessibility. I think I need to create a diagram of the lack of a particular accommodation. It’s not funded because no one uses it. No one uses it because it’s poor, the service itself is poor.
[01:01:21.10]
You know the snake, the Ouroboros snake-
[01:01:24.05] – Alasia
It’s eating itself.
[01:01:25.11] – Julian Harper
It’s definitely circular logic. But it is actually so extremely common in spaces for disabled individuals. I think a lot of this discussion is that, that I think self-diagnosis is a lot about trying to get out of that cycle, I was like, “Oh, I need this, so I have to do this. I have to do this, but I need this first.” How does one engage in there?
[01:02:10.16]
I’m not saying that self-realization works outside of that system because, of course, it has to work within that system. But rather that for some people, it’s been a productive path forward. What we can do institutionally is say our job is not to please, it’s not to force biocertifications, it’s not to become another apparatus in which you have to come and give us a doctor’s note that says that you have X thing, which means that you have to do an astronomical amount of work to get something that is honestly not as concrete and magical as one might expect, as again, as someone who has spent a lot of time in the medical space. It’s not cut and dry. Diagnosis is not this process where check and X a lot of the time.
[01:03:14.03] – Maggie
I’m going on 2 years still rocking with got to get more tests done.
[01:03:21.04] – Alasia
We paint such a pretty picture of go to doctor, doctor has answers, and it’s like, go to doctor, get test.
[01:03:31.09] – Maggie
Go to doctor. Shrug.
[01:03:33.01] – Alasia
Get test.
[01:03:35.08] – Julian Harper
Go to doctor.
[01:03:36.07] – Alasia
Doctor says,
[01:03:36.21] – Julian Harper
Ask doctor question, second time. Ask doctor question, third time.
[01:03:41.21] – Alasia
Right. Doctor doubts you.
[01:03:44.21] – Maggie
Then doctor asks you the question, and you go, “Ah, yes”.
[01:03:48.09] – Julian Harper
Doctor gives answer, knew from first meeting, but did not tell you. I think we’re at a good ending point. Really appreciate this conversation. It’s really great. Hope that listeners, readers, tune in once again. This has been Art is the tool. Thank you so much. Bye.
[01:04:20.09]
The music for this podcast was written and performed by Carl Trump from Pop, Pop, Pop Records. You can check out this song, It’s a Creepy, Stormy Day, and others from Pop, Pop, Pop Records on Bandy.
