Intersectional Accessibility: Navigating Imperfect Systems and Creatively Developing New Inclusive Ones Together Part 1

Announcements
The first 3 modules of my Online Doctoral Capstone Course Foundations of Occupational Science is available now for free for a limited time: https://engage.evolvedlivingnetwork.com/

If you are in the Tacoma Area or are a fan of the Social Justice Sewing Academy and would like to be involved in supporting the adaptation of their workshops to focus on disability justice and to be accessible to people with disabilities in more heavily institutionalized spaces consider joining in our community event virtually or in person with AOTA President Alyson Stover on Monday, October 16 [6-8pm]
 
Get details on how to register here:  https://www.facebook.com/events/706895548119940/?ref=newsfeed
In-person capacity: 60, Live virtual: 150, Recording: Unlimited

Episode Show Notes
This important conversation explores the complexity of making our work as health and human services providers accessible across various contexts including both collaborative clinical work and in academic scholarship. We also explore some of the complexities and nuances around accessing mental health providers and the costs of lack of mental health care literacy and systemic patterns of misdiagnosis and how that intersects with disability and structural sexism etc. Be sure to check out Part 2 as well!

Jennifer Pearlstein, PhD, is a post-doctoral fellow in rehabilitation medicine at the University of Washington and completed her graduate work in clinical science at the University of California, Berkeley. Jen strives to improve the well-being of people with disabilities across her research, clinical work, and advocacy. She has received funding from the National Institute of Mental Health (NIMH) and National Science Foundation (NSF), published work related to disability and mental health and training, and has gained specialized clinical training in evidence-based practices for diverse psychological presentations, including how to support populations experiencing illness or disability.

She also writes about her personal experiences navigating academia with a disability and strives to increase the representation, equity, and inclusion of people with disabilities in academia and in medicine.

Connect with UW's Behavioral Health ECHO Project: (How Josie met Jennifer without expense of a fancy conference)
https://bhinstitute.uw.edu/events/?trumbaEmbed=view%3Devent%26eventid%3D163336444

Accessible Mental Health Support Resources:
https://openpathcollective.org/
As long as there is a financial need, our lifetime membership will allow you to see anyone in our network for the rates listed above. This is our guarantee. A lifetime membership to our nonprofit only costs $65.

Employee Assitance Programs:
https://www.insperity.com/blog/employee-assistance-programs/

Holistic Wellness for BIPOC OTs/Communities
https://otbayarea.com/resources

Support Group for Disabled OTPs

Evolved Living Network Instragram @EvolvedLivingNetwork
Free Occupational Science 101 Guidebook
https://swiy.co/OS101GuidePodcast
OS Empowered OT Facebook Group
https://www.facebook.com/groups/1569824073462362/
Link to Full Podcast Disclaimer
https://docs.google.com/document/d/13DI0RVawzWrsY-Gmj7qOLk5A6tH-V9150xETzAdd6MQ/edit

Transcript

Josie Jarvis: 0:10

Everybody, thank you for joining the Engaging Occupational Science Podcast. I have a guest and I'm really excited to have what I assume to be a very powerful conversation. I got an opportunity to see Dr. Grace Pearlstein, Dr. Pearlstein. Does I say your name accurately, Jennifer?

Jennifer Pearlstein: 0:27

Yeah, it's Jen Perlstein. You

Josie Jarvis: 0:28

got it. Perfect. And do you, how would you prefer to be referred to during this conversation? I try to be consistent. I know what people call me, Jen. Oh, okay. Wonderful. All right. Thank you, Jen. So you guys may be that have been listening to us. Remember the episode that we had with Dr. Tim Dion about projects and how ECHO projects are a very powerful way of sharing information, especially insights that we gained from the academy to field clinicians and under resourced areas. So I got to connect with Jen and Dr. Pearlstein through an echo project put on by the University of Washington to bring visibility to some of the challenges that folks with disabilities can have in accessing services even via telehealth, right? We're used to thinking of telehealth as something that is maybe a very flexible and versatile option. But there's all. different nuances that we often don't think of and consider when it comes to different experiences of disability, especially when looking at the notion and the concept of intersectionality, right? So maybe somebody might have challenges accessing telehealth because of an intellectual disability that makes the task sequencing challenging. And that could be true. Somebody that comes from a very high resourced area that might have access to caregivers and support services that could help support that. And maybe you have somebody with a very similar presentation of an intellectual disability, but are maybe in a more under resourced context, maybe doesn't have command of the English language or doesn't have access to support services as one example. And I wanted to invite Jen, Dr. Perlstein on to share this lens with us, especially as we talk about how we are putting information into the world to help, especially those of us that want to empower and have our scholarships support the lived experience of individuals of a variety of different disability and mental. Health different social marginalization experiences I would love to touch on some of the conversations that we had in relation to the U. S. healthcare system and social service system, but really felt that it was important to invite Jen on to talk about what this means about our scholarship and what we do as clinicians and how we're really challenging academia. To really be more considerate of these intersections. So that being said Jen, do you mind also introducing us a bit to more of the broader context of your work? I didn't really get a chance to I came in a little bit late on the presentation, so I caught that on, so I'm excited to hear your introduction.

Jennifer Pearlstein: 3:12

Of course, happy to jump right in. And thank you for the warm introduction. I'm excited to be here and have this conversation with you. So I am a clinical psychologist. So my area of specialization is in mental health treatment, mental health research. And I came about this field originally focused primarily on understanding basic mechanisms of psychopathology. So what are the factors that put someone at risk for developing mental health challenges? What can be protective? And several years into doing this research and clinical training, I realized that there was a gap that I was observing around disability, that we weren't talking about systems of oppression. We weren't talking about some of these stressors that we know can really contribute to mental health presentations and get in the way of access to treatment. So within the last few years, I've done a little bit of a pivot to focus within rehabilitation medicine. Which is the area of medicine that's focused on adjustment to chronic illness, disability. And so my work now specializes in trying to understand the unique stressors and access barriers faced by people with disabilities, and how can we improve our mental health care systems and healthcare systems more broadly, frankly, to increase access and increase mental health and wellbeing. We know, unfortunately that risk for mental health challenges are much higher in people with disabilities for. A host of reasons. And so I'm really passionate about trying to understand what those risk factors are and what we can do as providers to try to improve treatment, improve care and ultimately improve the lives of people with disabilities.

Josie Jarvis: 4:49

Wonderful. Are you finding that this work benefits from coalition building? I'm sure you've probably run into this and the human service sector where for some reason we get I think it's so easy, and it's often unconscious that we can be somewhat self focused about our advocacy lens and oftentimes. Something that's part of how I've learned about this echo series is with the Washington Occupational Therapy Association. We've been rooting a little bit more deeper and a shared cause that you're mentioning here of looking at the mental health needs. Obviously exacerbated by the progressive pandemic. And I'm sure this won't be news to you is like a lot of the people that I really love and motivated me to go into occupational therapy school were essentially under a socially sanctioned quarantine decades before the pandemic hit. And these aren't new experiences, the level of social isolation and detachment from engagement in everyday living. And so when I hear this it's exciting to think that we have more coalition partners to build. And that, those of us that have worked in OT, often in the physical health system, we're like advocating for parity so that those of our clients that need occupational therapy for physical disability reasons should have access through their publicly, available insurance providers. And we're working more. Diligently to advocate for our clients with neurodivergence and mental health differences that if they're having trouble with their activities of daily living, they should get access to covered services. And what I'm hoping to role model for those that listen to the podcast over time is how much more powerful we can be joining forces with our colleagues with shared causes because we're often working in systems that are systemically underfunded. And with clients that really wherever it is that they're accessing services, if we can have a mental health lens and learn how to support each other with that, with our distinct expertise, I feel like when our client receives more, we all win. And so I just wanted to put that out there because sometimes things can devolve of T's can't do mental health or what are you doing working with people with disabilities from a clinical psychology background? You have to go to another 13 years of school before you can even mention that, right? And I think we have to move a little bit beyond that paradigm. That's an old school paradigm that most state legislators have been systematically challenging because the level of gatekeeping, especially in the mental health arena has led to obviously the accessibility of mental health service crisis. If you only have three people eligible to get Medicare reimbursement, that means hundreds of thousands, if not millions of people are being underserved because we're prioritizing gatekeeping over gate opening. So I like to think about things as like, how can we open gates? And let these things flow which. So I, can you add to me like so have you mostly been, I'm curious, like what's been your sort of journey towards clinical psychology and did you go back into academia or have you always been rooted in academia a bit?

Jennifer Pearlstein: 8:07

Yeah. Yeah. And I totally agree with you in terms of trying to reduce those silos, increase those communications and create these coalitions across disciplines because yeah, we all need to partner in this effort and bring a really multidisciplinary lens to these challenges. But to get to your question. So I knew pretty early on that I was interested in clinical psychology. I came from a family with a lot of mental health challenges and at a really young age, I was really curious about how do we improve quality of life? How do we. Improved treatment. How do we help people? And so I pursued psychology in undergrad, was interested in trying to get a graduate degree in clinical psych. All the while though, I was also dealing with my own disability identity. So I developed a form of early onset macular degeneration as a teenager. And so I I. Had this separate interest in understanding disability, the role of disability and identity, the stressors that face people with disabilities, and it was a separate set of interest for me where I had my kind of like academic interest in psychology that was my professional front and it was like my. Personal life and personal advocacy work that was around disability. And it was through my kind of graduate studies. I was up at UC Berkeley and I was doing a primarily research focused, very academic PhD that I was realizing, like how can I marry these interests? How can I bring this together? And so I. I would say that I went into the field expecting to be a academic researcher. And it was through doing more and more work that I realized I'm really interested in both clinical and research related work. I care deeply about working directly with the communities that I'm interested in trying to improve the lives of, and that means doing the clinical service in addition to doing the kind of academic research. I've sort Always been in academia, though my clinical training and kind of training work has involved these very clinical components. So I am currently in a more or less exclusive research position, though it does involve doing a clinical trial. So I am continuing to do clinical research, though I will soon be transitioning into a faculty role that's more clinically

Josie Jarvis: 10:16

focused. Amazing. That's so I might try out with you some of the things I'm putting together for a I'm working on a textbook chapter with a group that is critiquing a textbook chapters is that we put in terms of there are certain ways, and especially like Western culture that we prize the formats that information can be contained in and in academia, there's like many incentives for those that are pursuing careers through scholarship. For looking at things that could be like high status journals and certain like number metrics. I find that sometimes like with disability numbers and ranking can be like, it's a kind of a a bit of a tortured relationships. They help in some ways and they really hurt in other ways. And it's the more you get involved in the like disability justice movement, the more hierarchies are just not fun and good. But there are a lot of hierarchies when it comes to publishing, and we tend to pry like in Western culture we always tend to prioritize the formally published and written word. And what's ironic is. That serves a lot of functional purposes in an academic context. It's awkward when it comes to a field translation context, because most folks that are in the clinical realm, after you leave academia, it's extraordinarily difficult to get journal access. And then on top of that hopefully we're going to get more disabled and neurodivergent and just atypical clinicians in all sorts of contexts, in the decades to come and as we evolve and adapt, making education accessible. But the formal written word happens to be one of the most inaccessible. Types of information to share. And so we get that like gap between insight to impact. And from that, I know I think that there's a metaphor between the conversation that we had regarding accessing services in the medical environment. And accessing information even as clinicians, and especially as clients, because there's a way in which when we're trying to impact the everyday ordinary lives of people with a complex intersectionality of identities, disability experiences, mental health profiles, different ways that, the Western world right now is just traumatizing for most humans, I would imagine, but they deserve We all deserve to know what the information is about the things that we're experiencing and that can help us kind of fact check a little bit about when things are helpful and when they could be harmful, that if we don't get that feedback, we could be moving forward with advice that could be like not accurate, not helpful. And possibly harmful to different communities. I want to give some space to you, Jennifer. I don't know if I have exact question, but maybe give some space to you to respond

Jennifer Pearlstein: 13:29

to that. Yeah I think this is such a key point and it makes me think of the like nothing with nothing about us without us. idea and disability justice of like we want to include those with disabilities at every step along the way in the process in terms of clinical care and in terms of research. And as you're pointing out, unfortunately, academia is not the most accessible to people with disabilities. It is a system that has a very hidden curriculum and is very much based on status and intellect and there are certain abilities that are prioritized and it's very hard to make it within the system when there's any degree of difference involved and within such a hyper competitive system, it's hard to succeed and so it's hard to have the voices of people with disabilities, but it's also hard to access the products as you're pointing out when it comes to. Textbook chapters or journal articles. Not only is it often written in a way that's wildly inaccessible, often the formats are not accessible like many PDFs are not screen reader accessible for people with vision loss, for example, or with blindness. And there are all sorts of barriers to accessing from a financial lens as well if we bring in that intersectional component it is absurd that a single journal article can be anywhere from 15 to 100 if you're not part of one of these prestigious institutions that's able to partner with a publisher. So I think unfortunately it's really difficult to access the kind of power within these institutions to be a person who's forming policy, forming clinical interventions, forming the research. It's also hard to be a consumer, like the kind of public access to these resources and materials is really difficult. So I think on all fronts, unfortunately, the kind of academic system and structure is one that is pretty inflexible. There is a clear kind of way of achieving that procedure, and it's through high impact journal articles that are written with academic jargon. And that system is not one that is. Accessible which makes it hard, as I said,

Josie Jarvis: 15:31

at all levels, which, and similar to what, so some of this I'm always working on how I can try to emotionally regulate through some of these challenges too, cause it can very quickly get dismal feeling, right? And I don't think that's a new feeling in the disability rights movement. And when I think back to about what our Disability advocate ancestors, what they've had to, address and come through when they had, many less tools available to communicate and things like these challenges that we're noticing today, almost like pale in comparison to some of the things that we've already seen the disability rights movement achieve, especially in the United States. I think sometimes the United States obviously isn't a very hospitable country as well. place, especially recently to many conversations that are progressive around investment in public social health services. However, it is like such a spark of hope in my heart when I think about the efficacy of the disability rights movement and our past generation, we're close enough to touch that. We have many folks that are still have lived experience of ushering in. A whole era of infrastructure that now hundreds of thousands, if not millions, of kids with learning differences and disability experiences now receive some sort of publicly sanctioned services. So we can learn from that about what's possible from bringing visibility to these barriers and imagining new possibilities and using creative problem solving. One of the concepts I'm playing with, and maybe I'll try out with you here, is this idea of epistemic quilting, or mimetic quilting in my chapter we're talking about how there's actually all different ways that information can flow and have impact in a community. And even though we put the formally printed word on higher status on this hierarchy If you think about it, even since I'm going to use this metaphor with the printing press because we often talk about the printing press as this thing that ushered in this new era of democratic access. If you shift your perspective to it's a lot of things are. Often one thing and the opposite at the same time. The printing press also created a mechanism of formalized gatekeeping of knowledge and a way of I don't know. It's just really, you only have certain things that are printed, right? You have the ability of somebody to say yes or no to something, whereas previously to the printing press, Information would flow through a community more organically, and it could be innovated from multiple points of source, and it can travel by, people seeing, doing, and none of those mechanisms ever disappeared. They just became systemically devalued. And right now with the disability rights movement, I think always with the disability rights movement, we have to quilt together these little scraps and pieces that we got. And we often don't have access to the full container. One of the metaphors I'm using, it's like you work really hard on this presentation, like even if you guys that aren't in academia, but you went through school you remember your final presentation, even if it was just your fifth grade project, you put this all in this intense work, you get it done by the D the deadline, and then you just drag it into the delete. That's how I feel sometimes with scholarship that we want to impact people with disabilities lives. It's like we work so hard, we do this diligently, we get it in under the wire, it meets all the standards we look for, and then we just put it behind a paywall where it would not be accessed. And then people are so scared to even talk about it because they think that they're going to violate the copyright of the journal. They don't want it to be shared. And that's another space where like we were just talking about. In clinical practice where we can get scopy and competitive about who does what you're seeing a mirror of that same dynamic in academia where we get competitive about who gets to talk about something. And I genuinely think that actually compromises our science more than it helps it. What do you think, Jennifer?

Jennifer Pearlstein: 19:35

I totally agree with you. Yeah, I think it's really unfortunate that there are these kind of priorities on who gets to say what who gets to have a voice in what sphere and I think as you're describing it comes up clinically around who gets to provide what type of care or who gets to encourage what type of care as well as in this like very academic sense of Who gets to publish because it isn't just anybody who gets to publish in these really prestigious academic journals. And so I think there is a lot of gatekeeping around that. And I couldn't help but think as you were describing this idea of the kind of like epistemic quilting and giving the analogy around the printing press, I see the same thing in the context of healthcare. And especially if we think about the transition into telehealth where We would think like telehealth provides all this increased access. And we know that it can also have a lot of access barriers and I think specifically about how in some ways I have been hearing this rhetoric around how some healthcare systems are. Perhaps less inclined to put forth the financial resources to accommodate a physical space because there is the telehealth alternative, and I see that as one of these unfortunate realities where there's this sense of we can just offer telehealth, but telehealth isn't just a solution to not addressing other access barriers and physical spaces. And so I think about the importance of increasing access with all of the new technologies that we're innovating on. Thank you. In a similar way to the example with the printing press where it's yes, it's great to be able to get this information out there. And how do we also do so in a way that is inclusive and that is respecting the ways in which this may not be the most accessible

Josie Jarvis: 21:16

for everyone involved. I definitely I think this is going to be a full shift in orientation. I think almost a lot of this, even on it's going to take multi levels right individual micro and missile types changes and one of the positive sides of going through and navigating coven together, and I am actually grateful. This is my informal scholarship of just looking at some of the historic context that especially our ancestors have navigated together in the occupational therapy world, we tend to see much more like that. Precedent developed of more of a social model of disability and other countries in Australia in particular, the United Kingdom, parts of Canada, and certainly very robustly in the global South. We have more traditions that look at how systems and institutions are designed to systemically exclude and not support like the needs and often human rights. Of people with differences and how they develop disability experiences, marginalized identities and OTS and those countries are open to having conversations about actively confronting and partnering with the communities that we seek to support in shifting conversations about how our institutions are structured and how we're shaping things. The United States has been much. Not as open to that conversation and at times can be, there's definitely a lot of like fragility in that conversation that comes up. And I think that there's an addiction to the perverse incent incentives in the formal medical model or just a sense of defeat, defeatism. That, I think we've almost just felt like it with neoliberalism. It's just too hard. It's too hard. However, I think if we work on our mindset shift with these challenges comes opportunities announced from ADHD is looking back. So the, my hypothesis is that part of why these conversations are a little bit easier UK and I guess UK is the one that would come up, and that tends to be who we have the strongest correlations in the OT world. But if you imagine, if you had to rebuild your healthcare system after World War I and World War II together, health was seen as something that was more ecological and interconnected. And folks didn't have the physical, financial resources to access healthcare on their own. And it was in everybody's even individual self interest to build a public model of human services. I think in the United States, we've been enabled and being in denial that when we go through collective intergenerational trauma that it somehow. The individual identified patient, like the ser the soldier, or the veteran, or the law enforcement officer, or this individual with disabilities. We've yet to really understand in the U. S. that our physical, mental, justice, health is interconnected. And we tend to be not only better served, but better served economically. When we try to understand these these challenges systemically as opposed on the to the individual level. Are you guys having any conversations more in the mental health? Have you noticed that coming up more?

Jennifer Pearlstein: 24:48

I was going to say, there's certainly a parallel in the clinical psychology space where I think there's some more reticence in countries like the United States compared to other parts of the world. And one of the clear divides that I think a lot about and I think is Really relevant based on what you were describing is that distinction between more individualistic versus community focused or collectivistic types of cultures where in the United States. Certainly there is a lot of individual responsibility placed on people for mental health challenges and it's seen as a disease or a diagnosis or something that's wrong with the person as opposed to looking at the broader context where in other parts of the world. It's pretty clear that there are reasons why someone is developing mental health symptoms. So rather than pathologizing the person, we look at the stressors that the person is being faced with, the relationship challenges, the systems of oppression, the financial barriers, the lack of social supports, the other kind of broader infrastructure that may contribute to the development of mental health symptoms. And I think in these cultures where there is more of this community focus. There is more of an understanding that there is a role of some of these other broader systems. And I think there's less of a tendency to do what is often referred to as like over pathologizing, where we're calling something a symptom when. It's not really a symptom, but it's a natural and normal way of responding to systemic oppression or extreme chronic stress or deprivation. And in the United States, we do tend to veer into that pathologizing territory really readily where we call something on. Thank you. As I said, like a diagnosis of disorder. And so I do think that is a similar conversation that's happening in the mental health space. And there are certainly parts of the world and parts of the country that are more progressive on this front of acknowledging that oftentimes our mental health symptoms they're not actually symptoms, right? Like it's actually like a very natural way of responding to trauma and

Josie Jarvis: 26:46

justice, et cetera. And we I think what I like from my experience as a clinician, and I certainly have engaged in service delivery that isn't in alignment with my values from a systemic level. And I want to say that to hopefully inspire sympathy and empathy with other clinicians that are out there that were working in these imperfect systems. And one of the not fun parts about hierarchy is they tend to really systemically responsibility, right? That's part of built into the systemic logic of Most of the systems that are taking place United States because we tend to really prioritize instead of like social systems. It's weird. We tend to just fixate on economic systems. And there's been a really strong There's been a strong campaign and it looks like sorry and I know I'm using big academic words in this conversation, but the good news is I consider this podcast something for the creative commons, right? I want this information to evolve and adapt. So if even if something I ever say on this podcast, just Makes you so angry. Like I don't want, I don't want to invite like harassment of me as an individual human with human rights. But I welcome increased dialogue from this. This is part of that epistemic quilting is I don't know everything we're piecing together. All these different pieces are needed to create a whole that is accurate to what we're trying to accomplish together. Okay. ADHD brain. I'm going to hear it back in. Where am I going with this train? I guess I want it brain. That I think that fixation on pathologizing that sometimes comes at and like it feels it can feel referencing some of my own fragility, maybe that it's Oh no, we're causing this as clinicians. We're the one doing this. And one of the things that's helpful about seeing the broader system is knowing that we're actually incentivized into being deficit focused and pain point based, because that's how our clients that are dependent. Like in many cases, folks with disabilities, it's, it almost feels illegal for them to have their own income because they are put in a place where it's a it's an inhumane choice to choose between your health care and your ability to often you have to be even entrepreneurial anyway. But if you occur assets. to a certain point, you risk not being eligible for public services that you may need to survive day to day to day. And so us as clinicians faced with that reality, often really up the ante and emphasizing the significance of need. Of our client, which is to get access to the needed services for survival for our clients. So I want to frame this with a bit of compassion to clinicians and that if you've been utilizing a pathologizing model to get your clients access to needed support services, you're not wrong for doing that. The system is wrong for making us all do that. That we aren't allowed to see and appreciate and nurture, and it's a broader social issue that we're not humanizing just as humans, people of difference from day one. This isn't all oh bad clinicians bad this. This is just a whole broader like way that our society is set up. This is going to be a generations long fight. We can't change it until we have visibility of it. And likely I, and I'm sure like, and maybe Jennifer, you have insight to this because you're in academia. What's going to be interesting is if we can get to a place with how coverage for strength based services can happen. Because that's the thing is like, insurances don't want to pay for things when they're going well. And that's like the trap we're in. I don't know how we're going to get out of

Jennifer Pearlstein: 30:52

it. I am so grateful that you raised this point because I certainly do not want to blame any clinician for this kind of over pathologizing tendency because it is because of our culture and it is because of the systems that we're in. And to give a concrete example around it as a mental health care provider in many of the medical systems that I've been a part of the only way that I can justify services. Whether it's for an insurer or for the specific institution is to demonstrate medical necessity. Medical necessity is demonstrating significant deficit and that is the language that is used, not the language that I would choose. And so I think to your point of needing to provide services that may not be always aligned with values, that's the only way that I can get the patient's access to care. And I want to be able to provide the services that I know are going to be helpful. And so I think unfortunately we are in these systems that use this language that have this framework where we have to speak about things in the form of mental health diagnoses and disorders and symptoms because that's the only way to justify the medical treatment or as you're describing to justify access to social security or justify access to some of these other really important and needed services and so it's certainly not a clinician's fault or responsibility. It is The nature of the systems that we are a part of and I think there is this really tricky balance of like how do we work within these systems and still do this values aligned social justice oriented work and I mean to your point of like how do we do that strengths based medical intervention when that's not the way that the system is designed. I think we do it really creatively, right? Like it requires a little bit of I have to document a little bit differently. I have to construe this a little bit differently. And I think it's both working within the system and continuing to push for that change simultaneously.

Josie Jarvis: 32:45

Being nimble. And I think those of us that work, especially around. The intersection and concerns around ability. I don't feel like there's a way of opting out like I'm certainly likely to go in that direction. Right now I work on call in different nursing facilities in my area. And that's one of the places where I do engage in some activism as a clinician. So When I monitor these policy systems changing and I feel very fortunate especially as a neurodiverse individual and as a woman I got I don't know, I guess I hyperfocused my way into spaces where I, so I've learned nonverbal learning disability, which I just, I'm learning now about this whole new demean of asynchronous development and having it where your brain might develop a lot more quickly than your body. And I definitely had that. I think I've become the OT that I needed and never would have gotten access to. And I'm still getting to know my learning differences to this day. But part of being a auditory processor and verbally dominant, I found a way to get myself into speech and debate and some of these more advanced classes, even though I was a sped kid. And I wasn't really who that space was mostly designed for, like at that time when I was in that too. I'm sure it's much more inclusive now, but it was definitely a space that was really geared toward improving Western philosophy and like hetero cis white men that also weren't great at sports, but could exude verbal dominance. A lot of those that demographic would harass and bully my friends. Especially they would use words to invalidate. their lived experiences, and I have such a great command of words and such an interest in learning about things philosophically that being in that space, I learned how to use words as mechanisms of protection. And I would try to learn the logic of that. And so I guess I'm saying this to show an area where I've now gained some systemic privilege, like being able to utilize these words. And I'm so glad that my neurodivergences, I could take these in an oral context. And I need an auditory context. I've gained a lot from reading. More since, being in academia and like really forcing myself to assimilate to different ways that aren't intuitive for taking an information, but it's very atypical that somebody with my neuro type would get access to those spaces. And when you get access to some of these spaces, you start to see where these policies, these laws, these philosophies that seem fixed. Like most people get taught about them like this is the way it is. It's not subject to debate when you're like Jen and I, and you're able to hack your way through academia to certain point, you start to see where this stuff isn't fixed. It's a fancy word of liminal. It's actually subject to debate conversation and challenge and so as a clinician. Even though we're faced with systemic barriers with access and we have to Be nimble. There are these little micro opportunities where we can be part of the solution. And no matter what, clinicians are going to be an important part as we get opportunities to change the systemic logic. We get to choose if we're going to try to maintain the old system that isn't working or if we're going to be building coalitions. and being open to the possibility that it might shift in a healthier direction. If we can't get there as clinicians, that hope is a little less practical and less grounded. So I'm hoping to model for you in this podcast and to share with you some of the things that I've gained from trying to take on this logic. So lately in SNF, for example I use Medicare policy. That states that occupational therapy services are covered for folks with psychiatric diagnoses. And I use precedence, a federal law that says that we have a spirit of parity. And even though my employer maybe just wants me to use motor based assessments for qualification. And yes, it's a little bit more work for me to add in the geriatric depression screen when I do my intake, but I'm seeing that as a little seed that I plant one at a time of validating that my clients don't just have physical needs. They also have mental health needs because often we're doing this at the same time and just because your paperwork has to paint a pathologized portrait for coverage services. There's no law saying you can't tell the parent and the client that you have to frame. it that way for the system, but that you honor and acknowledge the client's strength and resiliency. You don't have to let the assessments and the things you do for coverage and reimbursement dictate how you show up in your sess with your sessions and how you help neutralize the damage that our system can have on our clients. I've just been taking up a lot of space, Jen, so I want to pass the baton.

Jennifer Pearlstein: 38:22

You are totally good. And I still appreciate your self disclosure around how you have found like your own learning differences to also be superpowers. Because I think that to me is one of the I think like models of disability justice. That's so powerful is that many of us would say as much as society would say that my disability is a weakness. My disability is a source of strength. And I share a kind of similar journey where I'm also like hyper verbal and it is totally because of my visual lacking for lack of a better way of describing it where I, I can't read print materials. So I listen to everything. I listened to articles, I listened to books and I do so very fast, which often makes me talk very fast. And it's one of those areas where I acknowledge not only my privilege, but how. I may not be the most accessible person, right? Like I, I know that my language can be verbose. It can be using a lot of like sophisticated vocabulary and it can be really fast. And I know that is not necessarily going to be the most inclusive for a lot of people. And so I, I say this to model that like. I know that despite being somebody who is a disability advocate and very disability justice minded. I have gaps and how I present and how I show up and that's true of all of us and I think as much as we can say within an individual like my difference is also a source of a superpower. That's also true at the collective which is why I think we need to bring together conversations with people up. All disability types, all different forms of intersecting identities, because like the way that I'm going to best comprehend information is going to be very different than anybody, everybody else. And so that's where I think something like universal design is so important, where we have the same information presented in different ways so that those of us who are hyper verbal are able. They have this like very verbal oral auditory way of processing, but that there are alternatives for those who are not engaging at that level, and there's not that there's a better or worse. It's that there's difference and we need to really honor and embrace those

Josie Jarvis: 40:20

differences. I think that's one of the things for if we do have some academics, and maybe we're in a similar camp where I'm hoping that as my life progresses, I'm always going to be somebody that's like a hybrid academic clinician, like I want that grounded applied clinical relationship. I never want to lose that as much as possible. And systemically, that's easy sometimes to We're so used to putting things on oh, the ivory tower and I definitely feel like cultures of elitism absolutely exist in I would say probably every sector of academia. I'm sure you can find that at a community college in a trade school context, I actually just learned about a term I hadn't really engaged with, but I've certainly identified of like adultism. I have you heard of that. Okay,

Jennifer Pearlstein: 41:06

a little bit, but I maybe you can clarify

Josie Jarvis: 41:09

for everybody open to and actually like one of my things that I was hoping and my time awareness isn't great too. So let me know when you need to transition to the closing and stuff like that. Okay, what was I looping back to? Okay, so adultism that I learned about just yesterday is that in Western culture and certainly in the United States that we have developmental patterns of just a family system. Maybe, I imagine it might come a little bit from the biblical model of a nuclear family and more of a patriarchal model where you have a tier where heteronormativity and Yeah the man is the head of the household, but like the adults are essentially like in charge of the children and the children with that age discrepancy. There isn't there's a power imbalance where human rights aren't enjoyed and received equitably within the family system. And having this sort of model of where adults are inherent inherently over children to the point that bodily autonomy is compromised. Decision making is compromised. Like one of the models was that like children. will apologize for mistakes and things of not accommodating the needs of an adult, but adults aren't as culturally accountable for apologizing, acknowledging the mistakes. And I bet we've all had that experience in our own development. But certainly is very intrinsic to the structures of the academy and I would say even K through 12 education is the adult is always the superior perspective and we always default to believing and empowering the adult. Over the child, and it can prime you to be not as visible and aware of where you could be in an abusive power dynamic later in life. So anyway, I want to say that the ivory tower is a real thing and academic hierarchies are a real thing. And I think most of us probably have. Some trauma, whether we've processed it or not calling my own self that I'm always trying to process some of my trauma from past stuff because it's good. It's healthy for you. We're all different things. But sometimes people don't realize that school environments can be places that we've Develop patterns of dysregulated nervous systems, and it's not just folks with disability experiences. I think even neurotypical folks, educational environments are brutal. They're not really great for mental health. And sorry, this is a tech record, but I was wanting to say that like sometimes though, just like clinicians are a different thing from the broader medical model and the broader systems that we're part of that make it impossible to often provide ethical care. It's the same things happening in academia. A lot of folks that are in academia, even though they had that professor title or they have a doctorate, it means something different in the United States. Most academics are on near survival wages, often making less money than even public education teachers. And as hard as it is to access articles on the clinician facing side Early and mid stage academics at their front end tier are vulnerable to predatory journals that also if I want to publish an open access journal to be in alignment with my values, that often costs as much as at least 5, just to publish the thing. And that's a huge systemic barrier and academics need our allyship too. We have to connect, create coalitions and connections up the continuum because we do have allies. We have supporters, like this conversation is priming but we need to not be in competition. We got to support each other and acknowledge that almost nobody is I think just about everybody in the U. S. is experiencing some sort of oppression at some point in their everyday life. What do you think, Jennifer?

Jennifer Pearlstein: 45:10

Yeah I think the point that you raise about these power differentials is so key because it is embedded in all of our systems that whether we're talking about a medical system, an academic system, a K 12 system, a family system, All of these systems have these differences in power. And of course, we know that those differences in power are going to make it really hard to access when we are in that underprivileged or underpowered identity. And when we take this intersectional lens, we know that people who have been historically marginalized, whether we're talking about people with disabilities or those with marginalized races, genders, et cetera, that that is going to lead to a lot of mistrust in the system. And I think something that I feel really sensitive about is that when someone comes into my clinical office, comes into my teaching office, whichever kind of institution I'm a part of. There are a lot of aspects of a person's background that may make it really hard to engage with me as a provider as an instructor as a mentor and I think it's important that we honor that mistrust comes from really valid places. Because when there has been a repeated pattern of not being listened to not being collaborated with. Being preyed upon like it does lead to these, not only differences in power, but also differences in ability to like trust or engage. And so I think it is important for all of us to be sensitive to what, what may get in the way, not just in terms of the kind of practical physical access barriers, but some of those attitudinal barriers that those from these marginalized identities are coming in with when presenting to any of us.

Josie Jarvis: 46:51

And I really something I was seeing as you're saying is like there's some really amazing conversations I'm sure this is also coming up in your world to about some of the stigmas that cluster B and folks with personality disorders intersect with when they access services, and that tends to be a, so I haven't quite had that experience exactly, but I sympathize with it because when I was experiencing very acute grief, the day I found out that my cousin Libby had passed away and I was concerned about the amount of ADHD stimulant medications I was on, I made this mistake almost. And I said, I feel that the amount of Ritalin that I'm on, I feel like it's triggering hypomanias because I was studying, this was in my undergrad days before I had, some of the privilege and context I have as a therapist now, but I brought that up with my psychiatrist. At my time, I didn't know that psychiatrists didn't have as robust training. Around some of these diagnoses and things. So I got misdiagnosed with by, I guess when I looked at the record, she diagnosed me with bipolar one. I can't believe that. But I did get diagnosed with bipolar two. And I now have a better understanding of where my neurodivergence has come from, and I continue to understand it but that was, bipolar has a lot of cultural stigma around it, and a lot of really valid concerns for personal and bodily safety. What that created for me was this inherent distrust of my emotional experience. experience. It prompted me to think that everything that I was feeling was likely overinflated and not accurate to my external reality, which made me gaslight myself. Like I just have now this really emotionally abusive relationship to myself because I was trying to ended up figuring out like five or six years later that I never met DSM criteria for that. And I was having normal human grief. And Was not having the same effect of stimulant medication for my ADHD and I still don't know if I fully have ADHD because it doesn't sorry I'm making this about me, but I'm just saying I understand what it feels like a little bit to get a pathologized diagnosis and have that change and like really distort your sense of self and I have a lot of like compassion for folks that get diagnosed with in particular, borderline personality disorder has a rough shot. Is that something that you would feel confident speaking to a little bit? Some of the stigma that comes up around those? Yeah.

Jennifer Pearlstein: 49:26

Yeah. And it's interesting. My, my background, I initially got into the field specializing in bipolar disorder. I have spent several years working in specific bipolar disorder clinics. And then through my graduate training began to specialize in borderline doing work around dialectical behavioral therapy. So it's funny to me because I'm like. Yeah, those are areas that are very much like within my wheelhouse of specialization and it's hard because they are areas that are so stigmatized and to your point, unfortunately, once the diagnostic label has been smacked on someone's chart, it can carry not only a lot of stigma, but it can also lead to a lot of cascading consequences where it is common, unfortunately, that someone presents to the ER with a medical concern and it gets blamed on they're bipolar symptoms or gets blamed on something like borderline of Oh, you're exaggerating. It's all in your head. There's a lot of this invalidation and gaslighting that ends up happening. And again it's not something where I want to point my finger at any given specific provider. It's unfortunate that these diagnoses. carry a lot of stigma. And there is often a kind of lack of thorough assessment when a lot of these diagnostic labels are placed on someone. And again, it's a systemic problem, right? If the only way for someone to receive services is to have a diagnostic label put on the chart, then that label gets put on the chart. But when that label is on the chart, it biases clinicians, it biases care and it can present with a lot of challenges. And I think it is tremendously important to work with a provider that you trust around. What would it mean if I had a bipolar diagnosis? What would it mean if I have a borderline diagnosis? What does that say about me, but also like how do I support myself? How do I communicate about this? Not just to friends and family, but how do I communicate about this to medical providers? Because some providers may not be particularly well educated and what this diagnosis really means. And I think one of the things that I get really on a soapbox about so you might have to cut me off here. When it comes to these diagnoses, they're not set in stone. Many people will go in and out of diagnoses over the course of a lifetime. And that's not generally the public perception of mental illness. Like the public perception is you are someone who has bipolar, you are someone who has borderline and. It can be transitory. There can be days that you meet diagnostic symptoms and days that you don't, there can be periods when you're in an episode and there's really significant symptoms. And there can be periods of months, years, decades, where really there's nothing there that would distinguish you in terms of a symptomatic experience. And so I think what's really tricky is that. We take these labels to mean so much when I would argue they mean so little. And of course, they're important. I don't mean to minimize that, but the reality is that it isn't as a sentence of what your fate is going to look like. And that's important for us to hold onto as individuals who may receive these diagnoses, as well as important for us to hold on to as clinicians or academics or what have you, where. This label is not defining, it is not all encompassing, and there's so much heterogeneity within a specific presentation diagnosis, not only between people but within the same person over time,

Josie Jarvis: 52:37

and I think to and I. Don't have as much in depth training in things like on the DSM that I'm certain that you've had access to, for example in OT education, but like a lot of what I understand too, is a lot of these things are the clustering of certain symptoms. It's it's different than in the medical model where. A lot of the pathologies that we work with that have a more physiological origin, we actually have I guess it's easier to understand the pancreas than it is to understand neuroscience to a certain level, because there's a lot of variations and something I'm an advocate for on this podcast because my underground background was in field biology, which has served me so much. And that's how I relate to OT is I think a field biology, whereas like clinical psychology, at least where it's. Started is more lab biology kind of focus and trying to understand things at that level. And I'm excited that a lot of the disciplines are going in that direction now and that we're collaborating in the field. So this is not something that I want I wanna honor the historic context of occupational therapy and occupational science that have really put OT and OS have withstood some of the stigma and got ahead of it and has been pushing for qualitative inquiry and for holistic things. I think that is a badge of pride that we should wear. That we've always had that seed of activism and acknowledgment of unseen injustices in a Western community, and I want to honor that and invite that it's a good thing if the other fields are like inspired by us and are also moving in that direction. This isn't an area that we really want to gatekeep if we want to serve our clients. And I think we all know all of us in the human services, even if you're a flubotomist or part of the sanitation staff at a local hospital. We're all burnt out. We all have too much work to do. There's more than enough to go around, right? Let's find each other's zones of genius and strengths and fuel and support because our clients need more of us and not less of most things. And when we compete, We advocate in many ways for our own future elimination because that's why we feel so anxious and let that anything can cut us out at any time because we're cutthroat instead of building aligned coalitions to say no, you need to actually pay for all of us and have less profit margin. That's the choice. That's the right choice to make in recovering from a collective pandemic. So part of where I love what you were saying and that symptoms, right? Isn't the same as this like fixed thing. And hopefully all of you are noticing that we're discovering a ton about neurodivergence just right now in live time. It's moving very quickly. And even me framing how I brought up my experience about getting diagnosed with bipolar one and bipolar two. I do want to frame that for those that are in the audience that maybe have bipolar. I have so many loved ones and folks in my life that are brilliant with bipolar one and bipolar two. So I don't want to frame that getting put with that label. I don't like it's not dehumanizing or bad to live with bipolar. At the same time it's so important to have accuracy about what's being experienced, and I think this maybe comes full circle. When I was the client, I would have appreciated if the context around My concerns had mattered in that moment. Okay, hi, I just found out that my closest family member passed away. I'm feeling somewhat emotional. Last time you increased my Ritalin dose to this level, which had a stimulatory effect that didn't. Can you consider that detail in context with these other factors? And at the time, I was also experiencing stalking on my campus. And so a lot of my dysregulation and especially since I don't pick up on social skills and threats. Accurately, a lot of my dysregulation wasn't due to an internal chemical imbalance with my brain that wasn't accurately processing the external world. If anything, I was actually having very protective emotional impulses that So it's not that I, if I had bipolar, it would have been helpful to know about that. And I would want to know about it as early as possible so I can get the right treatment. What I want to bring up as something that hopefully can help humanize, and maybe you've had a similar experience, especially as a neurodivergent woman, this is very common. We tend to get diagnosed with Borderline and bipolar at a higher incidence without recognizing some of the nuances that folks with neurodivergence emotionally regulate differently and have a challenging time processing emotions. That misdiagnosis was a barrier by years of me getting tracked towards the right supports. If I could go back and do it again, I certainly would have not just worked with a psychiatrist because that's a different type of training and One of the ways the medical model has hurt me individually. And again, thank you for letting me, this is my. podcast. It's okay for me to take up space here, but my intention in sharing this is to hopefully humanize for those that are listening and to use my own story too, so that I'm not, violating HIPAA, but hopefully to humanize this, if you can connect and say, Oh, she's a human. Even we have usually been traumatized by these systems that we work in ourselves. Like we can get it where are disabled. And there's also a great term called sanism that I encourage people to look up around concerns around mental health diagnosis in particular. But I bring this up because that stalled, I misdiagnosis led to me not understanding how to support my own needs for years and my family. Was in our culture, put medications at a higher standard than talk therapy was stigmatized because it's more subjective. But really, it's what I needed. And I highly encourage people that if you're only getting medication based support. Thank you so much. It can be really under encouraged to also use those more social supports, those community based supports, and I hope I can role model for you that it just feels better when you have a diverse team around you and lots of different perspectives. Okay, again, I've been taking a lot of space so I'd love to trade with you, Jen.

Jennifer Pearlstein: 59:09

Oh, you are totally fine. I think what points you've raised here are so critical around how in the realm of mental health, there isn't a blood test. There isn't a clear way to know what a diagnosis is for somebody. And this presents with all sorts of challenges because as you pointed out, when a provider offers a mental health diagnosis, it's based on a cluster of symptoms. And if a provider is very thoughtful and skillful. They'll recognize those symptoms and context, but that's often hard to do. Again, like there are all sorts of systemic challenges. We only have so much time for appointments. We're not able to get enough background yada. But in the context of your experience, it's if you look at medication changes and you look at lifestyle stressors, stalking and grief. And if you look at all these pieces together it's pretty clear that the symptom isn't related to an underlying psychopathology, but the symptom is related to some of these other lifestyle factors and circumstances. And what's really hard is that. Oftentimes providers aren't in the position of having the time and the space or the training to recognize all of that broader context. And because there isn't a simple blood draw it means that it is on providers to do that really thorough assessment and it is hard to get that type of care and it can be so So detrimental if the wrong diagnosis is provided, because not only the stigma, but as you pointed out, it can lead you on the wrong course for treatment. And so what's really tricky is when it comes to these mental health presentations. I'm all about diagnostic clarity because it's so critical to have that clear picture, all the while acknowledging that. Diagnoses can change over time and those symptoms may be coming about for circumstances or reasons that aren't known to the provider. Some common examples would be things like medical challenges, whether it's hypothyroidism, hyperthyroidism, like there are a lot of medical phenomena that can lead to psychiatric or mental health related symptoms. And sometimes I don't have that information when I'm working with somebody, right? And so it's really hard to get that clarity. And so I guess my kind of Long ramble around this is to say like we as patients and as clients need to work collaboratively with our providers but also have a healthy degree of skepticism around like what, where is this diagnosis coming from. And it's hard because again with the power differential like we expect that our doctors are going to be right that if they give us a label like that must be capital T truth and yeah. Unfortunately, especially in the realm of mental health. There's so much gray area. And I think like providers we need to have that humility. And as those seeking care, like we, I don't know, there's like a lack of kind of awareness around how, unfortunately it isn't as clear cut as, figuring out that someone has high blood pressure, for example.