19. Disability Isn't A Dirty Word: The Realities of Being Disabled and Navigating Discrimination, Erasure, & Ableism

(upbeat music) - Hello and welcome to a chat with Uma, with me, your host, Uma R. Chatterjee. On this podcast, I bring together all of my roles as a neuroscientist, researcher, board certified mental health peer specialist, mental health advocate, community builder, and a survivor with lived experience to bring you honest and unfiltered conversations, exploring our true human experiences in their fullest form. Every week, I'm bringing you conversations bridging the gap on all things neuroscience, psychology, mental health, lived experience, advocacy, psychedelics, and more. This is a space for raw unfiltered truth, to truly explore ourselves for who we are and how we are. I cannot wait to connect with you, answer all of your questions and co-create this with you. Welcome to a chat with Uma. Hello, everyone, and welcome back to another episode of a chat with Uma. And my gosh, what can I say about today's episode? I, frankly, wasn't planning on this episode and this is a last minute decision to release this one this week instead of what I had planned. And that's because time has been a warplately and I somehow realized that we're right about the end of July and July happens to be disability pride month. And as I thought about that, I was overcome with this need to just get on the mic and talk and express and rant about living life as a disabled person and the absolute need for disability justice and disability awareness and disability pride because I don't know how many of you are coming to this episode. Like, what is this and why is she talking about disabilities versus people who are coming to this episode because they already know why. And to all of you, I say that this episode is so important. This is one of many conversations that are so important for this topic because if you have the question of why it's important, then it's important for you to know why. That, it, of itself, shows the necessity of this conversation. And if you're here because you need community and space for already knowing why this is important, then this conversation is also needed for you to have solidarity and support and validation in your experience. Even though, of course, I'm speaking from my own experience, which is one of many with my own disabilities, my own way of navigating the world and big and. I'm also bringing years and years of advocacy and community organizing and speaking about this topic to today's episode. So it's generalizable to a certain degree just from my work with other people and my work organizing in this field. And of course, I'm still talking from just my lived experience that we need to make room for so many other people's experiences. But before I digress too much into the impassion to this of what I want to say, I just have to say that this topic is so relevant to not just people with disabilities, but everyone who participates in society because you probably know people with disabilities. You probably work with or friends with or have family members who are disabled. Whether or not you actively label them as such or they label themselves as such in front of you, that's true. And you know how I know that? Because you're here listening to this and I'm someone who's disabled. So you know me and I know you know other people. And disabilities do not get the attention and respect and space and awareness that they so deeply warrant for so many reasons because as much as we have moved forward with at least awareness about diversity, equity, and inclusion, for whatever reason, while disabilities and disabled people are largely amongst that group, they are wanted for people. They tend to fall by the wayside because we prioritize thinking about other forms of people who are minoritized and excluded, and disenfranchised. Many of the identities with which I also hold and identify being a person of color, being a woman, being queer. Like there are so many parts of the spectrum of people who are minoritized, so many different groups of people, so many different identities, and yet amongst all of them, disabilities, and people who are disabled are just erased. And there's so much to impact in that. A large number of what I think are the factors that contribute to this erasure is just a lack of awareness and a lack of understanding of how disabilities actually look in people and how they impact people's lives. And truly, I mean, truly internalize ableism, which is not at all a knock on people, and a judgment of people or being angry and upset with people, it's more so being upset with and wanting to make change with the system that enables and perpetuates that stigma and bias. So, ooh, I am already noticing how much emotion is coming up talking about this, and I think five minutes in, I have not followed the most cohesive and laid out way of introducing an episode that I've gotten used to, that maybe you're used to if you've listened to this show. And that's okay, I think. I think I'm gonna try to give myself compassion for that because this is just such a loaded topic, and this is such a viscerally impromptu honest, raw episode because I just had to get it out. I just have to get all this out. So, let me take a step back and rain it in and kind of just outline what all we're gonna talk about today. I think I'm gonna approach this by just first starting to talk about my own journey and experience with developing and recognizing disabilities and how that's played out in my life as a person, as someone in the workforce, as a student, as a human wither with that opportunities and accommodations and all of that, and then bring it to the larger context of the societal experiences that people with disabilities have, and just bringing awareness to all of it because there's just isn't enough. So, okay, let's get into this episode all about disabilities, disability justice, disability awareness, the realities of living as a disabled person in the society, and what on earth we can do as disabled people for ourselves and for those around us and for allies, how we can be supported and how we can change one step at a time, this entire experience of having a disability. So, before we get into everything, let's first just operationally define what a disability even is because there are so many ways of conceptualizing disabilities, the experience of having a disability being disabled, and there's so much validity in the ways people comprehend their experience as someone disabled as well as viewing disabilities in a large scale, which we'll get into later, but for the purposes of just getting on a relatively similar page on what on earth we've been talking about 'cause that word gets thrown around so often, we're gonna use the definition by the American Disabilities Act, the ADA, or the Americans with Disabilities Act. So, to be protected by the ADA, I'm reading this directly from them, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a record of such an impairment or a person who is perceived by others as having such an impairment. And important to note, the ADA does not specifically name all of the impairments that are covered. So, when you hear this definition and you hear the word disabled or disability, you might have an image of a very specific kind of experience or person or condition that you have been taught to think of as a disability, which may or may not be valid, but it is absolutely nice. not all encompassing of what disabilities can look like. And that definition, if you really, really look at it, looking at specifically physical or mental impairments that substantially limit one or more major life activities, there are so many ways that experience can come about for people. Oftentimes, multiple experiences within one person. For me, I have lived with disabilities my whole life. I didn't know that that was the case, and I didn't have the word or the language for it. That seems to be a common thread in my story and my existence for anyone keeping up with me and all the things I've shared about myself so far. And that's for many reasons. Number one, coming again from an immigrant family who had no language for these things either, who had no awareness about this, also general societal awareness or lack thereof, and not being educated on the realities of many parts of the human experience, illnesses, disabilities, suffering, diagnoses, even just ways of being divergent. And therefore, I just grew up with these limitations, grew up, and I perceived them as limitations in the sense of they impaired my way of being able to function in a normative manner, the way I was expected to. This is not a reflection of feeling like I am any less than or that I am less capable. It is just in the very normative, expected way of functioning and being. I did not have the capabilities and resources of doing so, and for me, that has shown up in numerous domains. So I'll start with physical, because that's probably where your mind goes to when you think of the disabilities, if that's kind of new to you. For me, I have basically had chronic pain my whole life as well as chronic fatigue. I've had severe autoimmune diseases for a very long time. And I also now live with cancer, I have for the past four years, and I'm on lifelong cancer treatment. So I just have physical limitations, and I have for a very long time, if not my whole life. And I always perceived that as a child and growing up without any context about this, as just I'm doing something wrong, I'm not good enough, and I need to fix myself and feel shame about the fact that I am not able to do things that other people are able to do, and that it's just me. There's something wrong with me that I need to fix. There's so much internalized ableism from just a physical perspective alone that I grew up with. And it was reflected back to me. I mean, I was made to feel incapable and small less than, like there's something wrong that I'm just a loser by adults in my life, by people in charge at school, by medical professionals who just perceived the totality of what they were seeing of my functioning and assuming that it was a reflection of poor parenting and/or just poor physical activity without questions of why, and just attributing it to the most ableist concepts of laziness and just basically being a lump on a log and the amount that that shaped my perception of myself and feeling like I just need to work harder and be better and there's something fundamentally wrong with me rather than my body doesn't function the way other people's bodies do and I am in excruciating pain all day long and I'm exhausted all day long no matter what I do and all of the side repercussions that came from that of overexercising of horrific, horrific dieting of having a very severe eating disorder for 10 years, bulimia, which I talked about in the past in my mental health episodes and my full story. And not to mention just everything else that comes with ostracization and being constantly made fun of and being belittled mentally and otherwise. I mean, that's, it was horrible and I received no help to be able to accommodate for what was going on let alone actual medical intervention which was maybe extreme compared to other people's scenarios because of many factors in my life and the environment I was in, the lack of access I had, et cetera. But coming back to just the experience of disabilities they can absolutely be amplified by societal factors by a lack of equitable healthcare access and simply by the lack of understanding and awareness of what the hell a disability is and that's just physical. That's a huge part of my life. It continues to be a huge part of my life because I exist as a person who has limitations to my, like, really, really large limitations to my mobility, my stamina physically, my fatigue or rather my energy because I am so fatigued so much. And yes, I do as much as I humanly can with the resources I have to manage this. And there's also more I could do, which is like a feed forward feedback mechanism of having resources having bandwidth, having hope and the amount of strength it takes to continue to move forward and work on these conditions and live the way we can. And so when I say I'm doing the absolute most I can, I'm saying that in that with all the bandwidth and the frankly oftentimes shaded experience I have and the amount I have to heal and grow from all the, just being bullied and being gasslet and being not supported and all the ableism I have to get over myself, I'm install that I'm doing the best I can and I will hopefully continue to keep doing the best I can and hopefully that best will evolve and change over time. Another conversation for another day. Before I move on from the physical stuff, I guess I talked at length about what I grew up with and kind of what shaped me as a disabled person. I also should probably mention the parts that kind of in the context of disabilities and becoming aware as an adult and then the health things that have happened that have really expanded my identity as a physically disabled person and the things that continue to arise because it's not just chronic conditions that they've had. Her birth, it's for the repercussions and another things that have popped up. So I did talk about cancer a little bit but how that really plays out for me is, I've been living with cancer for four years and I long story short have metastatic thyroid cancer and I am not cancer free or in remission. I am cancer suppressed and what that really means is that I'm on lifelong treatment to be able to suppress any growth and I'm pretty okay but there's a high, I'm at the highest risk of recurrence and I also, you know, with lifelong treatment comes lifelong effects. There's also lifelong effects in general of the organ, the thyroid gland that I lost as a result of having cancer and having to manage that forever is huge for me and hugely affects and it makes my health very and there are parts and times where it's more manageable and parts and times where it's less which just hugely plays into my overall experience as a person physically and the effects it wields on my overall level of disability. There's also with my autoimmune diseases, I've had them and they've deeply affected me for my whole life. I work to manage them now with the access and resources, no awareness I have with different ways of intervention with medication, with procedures, all of that. One aspect of that is that I have a surgery that I have lived with for many years involving my stomach and because of that, I interface differently with the world in terms of digestion and food, drinking and just my needs as a human and what I'm able to tolerate and handle and how I ingest and take care of myself and that hugely affects my ability to participate physically in things that are differently than others in terms of just purely, yeah, we're gonna go into it like the bathroom and my need for the bathroom, my need to eat and drink at a certain written way and just, the way my body operates in terms of energy and lack of the rub and not being able to do a whole lot about it other than just manage life around it. And I've definitely, I don't want to say I've been guilty of because I don't want to shame myself because I don't want to shame anybody else for it, but I feel guilty, warranted or un-warned, about how much I've worked in the past to mask all of that. And you know what? Right here and now, going to edit myself. What I'm feeling guilty about is just me responding to a fucked up system that doesn't account for people like me. And so the amount of head to mask or I have felt like I had to mask in order to function in this world and be remotely accepted and seen as good enough for capable enough or not too much of a hassle in environments academically and professionally in every other way that impacts our life as people. That's been a huge reality and again, we're just talking physical right now. There's far more to the story. But even just the parts, I want to start with physical because that's probably like the most accessible to someone who's not as familiar with disabilities, who's listening to this. And that frames into how we then talk about everything else going on for me as a disabled person. But yeah, physically there are all the things I grew up with that have been chronic and hugely, you know, in terms of pain, autoimmune diseases. And I could just, I mean, name those in particular. I have fibromyalgia, which is not immune disease and also is the major source of my chronic pain, my very severe chronic pain. I've talked at link about ways I've worked to manage it and treatment said tried in previous episodes, namely my full story, my mental health journey and the psychedelics and ketamine episodes. I'll link them in the show notes, but there's been yeah, the chronic pain. There's been from fibromyalgia plus everything else that goes to fibromyalgia, my goodness. I have a skin autoimmune disease called hydrodynamic, hydrodynamic superativa and basically these skin cysts and it sounds super gross and it is gross, but it's not, not gonna make this a whole HS episode, but it's not topical, it's not from anything like being dirty or anything developing from the top, which a lot of people with HS have shame for, it's actually from internal inflammation. It sits that develop from the inside and hugely correlated to lots of factors, especially exacerbated by stress on top of all the predisposing factors. So at the end of the day, as much as I can manage it, I have flares like often when I'm stressed and also just uncontrollably in general, but especially in time to stress such as right now when I'm about to be across the country and make one of the biggest life changes to exist. That causes so much pain and it also hugely impairs my mobility because of oftentimes being in places that you're constantly feeling it and it impairs being able to walk or move. And it's just horrible and it requires a lot of injections, I've had injections and countless injections and some surgeries to work with that. And yeah, I'm here in functioning and living and that's a huge detriment to my health and something I just accepted live with. And we'll get into not only the parts of the disability that are the actual living with it and the effects physically or mentally or cognitively and overall, but also the repercussions of having to live with it in a society that doesn't account for those types of needs, but getting ahead of myself. So there's HS, I've also been living with polycystic ovarian syndrome for a very long time, I manage it, has shitty effects is what it is. And yeah, living with cancer, no big deal at all. I have other conditions too, but those are some of the biggest ones that come to buy in terms of just day-to-day management and the medical needs I have and the limitations they wield and there's other parts and there's other ways that I'm limited. But hugely, those kind of cover it. And so, now I guess I'll move on to more of the uncomfortable, I mean, this is all uncomfortable. I'm also a completely open book, but maybe more uncomfortable to share in terms of already for me for seeing the amount of added stigma and lack of understanding that I might face for talking about these parts. But nonetheless, they are reality and this is the point of what I do. So, here goes unfiltereduma. So next, getting into the, it's not binary, but if we were talking about the physical side of my disabilities, then this side is, I suppose, the mental. And mental is super all-encompassing. There's psychiatric, there's cognitive, learning, all of that. But maybe more so the unseen, the extremely unseen parts that, yeah, I mean actually a lot of disabilities are invisible, physical as well. But I'm getting in the weeds of definitions here. The mental side with cognitive and psychiatric. And I'll start with psychiatric because it's frankly, I feel like one of the most misunderstood parts of disability. So for me, the way I conceptualize how my psychiatric illnesses, my mental illnesses, are disabilities, and not just me, how I conceptualize, but how my providers and how my case is kind of conceptualized is, that I have many things. And you can hear my mental health episodes to hear the full story on this, but the ones that really come to mind and are part of my case are severe, possessive compulsive disorder, OCD, post-traumatic stress disorder, that's treatment resistant, major depressive disorder, generalizing anxiety disorder, panning disorder, and there are other ones. But those are the ones that come together and, yeah, coming together really impede my ability to fully function physically, mentally in most settings. And this ebbs and flows with time, but there's so much that is uncontrollable in terms of flares and just certain scenarios and triggers and things that are just unverseable, uncontrollable, and I just am not able to function properly when they are loud and when they are flaring. So, by that definition and by generally the definition of disability, those are all included. Now, there's a lot of conversation about kind of related to the idea of calling these conditions disabilities by some people in the advocate space and just people who live with these conditions who do not find it helpful to call them disabilities, because there's a sense of hopelessness and lack of treatability that comes by calling it a disability in their perception. And I'm here to say that everyone's opinion and perspective and lived experience and way of navigating living with these things are so valid, an individual and different and equal. And a big and with that validity in everyone's perspective, there is also the perspective in coexistence with what I just said, held by me and held by my providers and also the ADA in terms of validating this perspective that there is also a need for certain people who resonate with the need. And I'm here to say that people who resonate with this, who are impeded still by their illness, who need access to care and who need the flexibility and opportunity to receive said care without consequences. I'm talking about a perfect world here, but in that aspiration in that path to equity and considering everyone's needs, that labeling these things as a disability by virtue of the way they function and the way that these conditions in fringe upon their capability of existing, frankly, that calling it a disability. So, one allows for people to get the protections in theory, again, the protections and accommodations, the healthy kind of accommodations for those of you that you know what I'm talking about, accommodations and protections and accessibility to resources that people with these conditions need in scenarios. And that's where I'm coming from with disabilities. I, fullheartedly, for myself own the term disability in that sense. So, it exists with the idea and truth that there is hope that there is a need for a disability to be able to get access to care. treatment, not a cure, but there is treatment for many of these conditions. And for many people with treatment and with access, they are able to get to a point where they are not disabled by these conditions. However, there are also people who are not able to get to that point. And I am one of those people. I am largely in the camp, I have been put in the camp of treatment resistant, which just means that the traditional first-line treatments don't fully work for me to get me to a point of being subclinical. And I have hope for moving forward with different options. And we talk at length about where I'm at and what I'm pursuing and how I'm existing on this podcast. So stay tuned for more updates on that. But in the way I exist, I have not been able to reap the full benefit of becoming subclinical in many or all of these conditions with the treatments that currently exist right now. And so I am still disabled from these conditions as classified by my providers sometimes to my heartbreak. I'd like to not claim well any disability, but like especially those when so many people are not disabled anymore by these illnesses. And that's just not my reality. So that is a huge part of my identity both internally in the landscape of how I am working to overcome my ableism and see myself and own who I am and how I am. And also, just legally, how I'm classified by documents and by all of the shit that goes into trying to be treated as a human on this planet in the society. So that's long story short, the classification of the psychiatric side of things. And of course, like the way that these conditions play out in terms of not being able to fully face obsessions and the time it takes to do compulsions that I am not in a place many a time to stop and what that means for the time it takes for me to do things and the flares and triggers that exist for my PTSD and being in a reimagining traumatized state many a time and needing to have extra time and capability to come back to presence and function again. Also, just extreme episodes of dysfunction and interests of thoughts and severe severe depression that can come by also like straight up just having panic attacks many a time and there's certain scenarios that are accounted for I'm thinking right now in my very present experience with my work as a graduate student and what that entails. So under the umbrella of disability and accounting for different ways that it inferences upon functioning and day-to-day life there are so many examples. So there's that. And then in terms of cognitive learning kind of not necessarily the psychiatric side but still more unseen still basically my brain and my system not being fun or nice to me joking but not joking. So yeah my cognitive learning disabilities I have a host but one of the main ones that comes to mind is a nonverbal learning disability I have which basically is a visual motor deficit like the spatial lack of spatial capability and I mean so I talk and link about how I got this diagnosis and how this was found actually not even a year ago which but I've lived with it my whole life and it put a lot into perspective of why I struggled so much and so many domains of subjects and engaging with school in certain ways but that was all from psychological assessment I had done and was not expecting to find this part out. I think that's covered in my mental health journey episodes which again will be linked in the bottom for all the details but long story short like my brain does not interpret visual stimuli properly and so I have a really hard time interpreting complex facial features or facial movements or just really like encoding visual understandings of things and so it's really interesting because I don't actually have a impairment in my vision itself like as far as I know I have perfect vision relatively and I don't work losses but it's how my brain perceives visual stimuli and so that largely affects my ability to function spatially as well like I don't really have a sense of space or time or direction and largely misunderstand space and my relationship to people in terms of space and how I move through the world like physically and also just in general like I something that's coming to mind for anyone who like is a neuroscience at all is that I could not I mean I was basically like failing neuro anatomy and I could not understand why and I just like could not internalize the the memorization of visual like how all the intricacies of the brain like I couldn't see the things people were pointing out I couldn't see the different arteries and crevices and just I literally just couldn't see it and it wasn't like a again like my vision is bad it's that my brain could not understand my brain couldn't understand my brain like seeing brains it's kind of funny but I just didn't know why and I felt so stupid and felt so like I just wasn't studying enough no matter how hard I tried and same thing with anyone again who's in neuroscience but if you're not this hopefully makes sense too in terms of doing things like immunohoster chemistry and cutting basically cutting brains into slices and then being able to tell where you are in the brain and you have to use like very specific markers in these tiny little brains to figure out where you are and where you're slicing and like it's so difficult if not impossible for me almost to see any of that and interpret where I am and then also my gosh going into like using a microscope to figure out where you are within a slice like maybe I'm talking it and this doesn't make sense but basically I just don't interpret and finally through all the cognitive testing and all of that found that I do not interpret visual motor spatial things like I just don't and that is hugely hard to navigate as like living in the world where you need to be able to see stuff especially my field and so that was labeled nonverbal learning disability and hugely gave me language to comprehend my functioning and once again living in this extreme amount of shame and guilt and working so hard to try to do something that like I pretty much can't by that standard and I have to figure out other ways to function like it was just so much time wasted hating myself and basically running on a hamster wheel trying to get out of the hamster wheel so that's one of them I also have sensory processing disorder so I have a really hard time in terms of being overstimulated oftentimes physically and just different I mean it's kind of wild actually I think I talked about this at length in my mental health episodes too but in all of that cognitive testing like the way I would perform on a test with the luminescent lights on versus off it was like night and day literally just because of sensory processing disorder and how much the overstimulation puts me into freeze mode and my body is not capable of like working or doing and so that's really uncontrollable oftentimes and hugely impacts the way I am able to engage with a world not made for people like me and so once again another disability and it's really just conceptually just my brain working differently and my system working differently than others and it doesn't make me less capable or less worthy or does any of this that I'm talking about but it's just needing to function in different ways and just having limitations in certain aspects and working with that but that's not really possible without the term or understanding of having a disability in the first place rather than just being work harder try harder be better which is a worldly living and the way we talk to ourselves and we don't understand that we just can't we just can't sometimes and I guess this leads me to the concept of ableism and like why I even shared all of that because yeah I could talk all day long about just heavy disabilities and there's so many things I didn't say but really taking that to what that looks like in terms of living in society living in the world having jobs being an education or receiving education trying to do anything where one needs to be treated as a human and to have access to resources and capabilities to be able to do what they need and want to do with the limitations and capabilities they have uniquely. Abelism, I'm sure you've heard that term, you might flinch when you hear it because it's such a negative connotation and to that I just urge you to deal with that feeling and you know, if you flinch hearing it then imagine having to live in the fire of it. But really the operational definitions of Abelism that I find are discrimination in favor of Abel-bodied people and discrimination or prejudice against individuals with disabilities. And it sounds so obvious, but the ways that that show up are so often pervasive and insidious and just not thought about in terms of diversity, equity and inclusion, frankly, because I just outlined to you an example of an end of one of me and some of the disabilities and limitations that I live with. And then translating that to functioning in the world, having limitations on my physical capabilities, on my mobility, on my bandwidth, on my stamina, on my cognitive and mental capabilities on needing specific requirements for access to care and flexibility in the way I work while still being able to do what I commit to do. That requires accommodation for my conditions in many different ways that also requires being accepted fundamentally as a person with all of those parts of myself and not being excluded from opportunities, scenarios and being considered less than or less desirable or less capable because I have needs and I have limitations and I have disabilities. And that sounds really obvious, right? But the reality of people with disabilities is that ableism is rampant and ableism isn't just a frivolous concept that people throw around. It is quite the reality of how our existence is defined. And I think the statistics tell you all of it because one in four people, up to 25% of Americans at least have a disability and guess how many people with disabilities are employed around 20% of one fourth of the population is employed. And what about the 80% that aren't? Many and much of those people could have an occupation, could be contributing and having a livelihood. And the reason that they don't is because they are not number one accommodated for with their unique needs to be able to reasonably do a job and two, more importantly, they are discriminated against because there is this internalized belief that if you have two options, someone who has a disability and someone who hasn't, both who are equally qualified to do the job, let's say, the natural inclination for someone with unchecked ableism is to pick the person who's less needy in their mind. And I'm saying those words by the typical perception of someone who is perpetuating some ableism, not obviously what I actually think, duh, but being perceived as too needy, being just inherently less than, less capable, especially if dare say they disclose said disabilities upfront. That's one of the largest reasons why people end up not getting opportunities and to make it more concrete for me. I mean, I live my life with every opportunity I'm looking for, for like any job, any application just recently navigating the clusterfuck of getting into a PhD program. It's constantly this hypervigilance, this fear of what if they think that I'm too much or I need too much or I'm not good enough or I'm not capable enough because I objectively have to lay out some of my needs and limitations and ways that I work differently. And sometimes it's about being perceived like, yeah, you have disabilities, but you can get the job done equally if not better and having to overcompensate to be able to even be considered fairly, quote unquote, fairly, at least like equally to. And sometimes it's just the objective reality that different people have different amounts of output. They're all still worthy of having a chance to do the job and to participate and to be a part of society as they are. And even if that means a different amount of input or a different, sorry, a different amount of output or a different way of outputting. And in all of those scenarios, there's justice, extreme amount of discrimination and judgment that most of the time goes completely unchecked because there is such a lack of true upliftment of this part of diversity, equity, inclusion. And I know this as someone who has other marginalized identities who is uplifted for other reasons and who oftentimes I'm definitely the person used for showing that, you know, a initiative or a opportunity is looking to be diverse and I am outwardly diverse. So to people who are choosing me or other people for the way I look for my gender, my ethnicities, my race, even any part of my identity in terms of my sexuality, all of it, really, all of those forms of diversity, equity, inclusion require a checking of bias for people who are different and yet in theory can participate or output the same amount as their normative, white, straight, cis, male counterparts, right? So it's checking bias in terms of what we perceive about people based on the way they present or look or their backgrounds. It's not a question of their capability and if it is a question of their capability, it's going deep and realizing and looking to change their inherent bias against why they think someone who looks or presents differently is less capable. And that's all well and good. That is necessary, obviously, as someone who also holds those other identities, but then there's the level of exclusion and true discrimination for people who their identity includes being disabled or their identity is being disabled. And it's not just a question of, oh, they look or seem differently than me and they're probably still capable and I'm just judgmental. Oh, they seem less capable than me because they seem less capable than the standard I have for this position because they have limitations that I have biases about. And rather than questioning said biases and actually creating equity and really, really deeply changing the way the system works, it's just a simple matter of this person is limited and they are less worthy and capable of doing things. Therefore, they're not going to get the position. And do you see the difference between the discrimination of all other forms of identity and disabilities? And I know this as someone who has lived this so openly and just so deeply and in the most painful ways because I have been extremely open about my disabilities because I don't know how to be any different. However, I am very aware of what I share certain parts of my marginalized identities, certain parts of me that are then seen as reasons to include me versus the minute I bring up disabilities and my need for accommodations and it turning around as this is why you should be here. And obviously it's not often said to my face but the sheer ways of just empirically looking at the opportunities I get from when I disclose when I don't disclose or when in the process I disclose my disabilities and just the way I'm being treated. And also frankly straight up the actual accommodations for my disabilities physically, cognitively, mentally. How often times just needing accommodations can become grounds to dismiss people or inadvertently figure out a way to prove that they for any other reason are not supposed to be there or are not performing well because they're not being given the accommodations they need to begin with and then just excluding them and pushing them out. And there is no or almost no accountability for this type of discrimination. It is horrific to live with. It is horrific to talk about. I'm obviously so activated right now because it is something that I think about and live with every single day, the fear of it, everywhere I go. And I know that not just me, but most people with disabilities as much as they can, mask their needs, live in completely inhumane circumstances, navigate inhumanely just cruel amounts of struggle to try to get by in a normative accepted way. Without accommodations, without being seen as too needy or too much or too incapable or too weak or all the horrible things that come with ableism. And they either just are, you know, burnout or they can't do it and are thrown out anyway and just having to live with that amount of struggle and discrimination is already so heavy. But then to be erased from basically erased from the conversation of this movement that we have now of uplifting people with diverse and marginalized identities, and then to say well people just being at the bottom of that is just so, so painful. It's so heartbreaking and I could talk endlessly about all of the statistics and all of the stories I've heard, but you can find that anywhere else. What I want to talk about here right now again is this, the fact that it's just almost completely unknown unless you're living it. Like at least now we're having conversations about other types of very visible outward forms of exclusion and therefore trying to remedy it. And again, it doesn't like those forms are equally important and valid and big and they don't require as much actual checking of our biases and actual changing of our systems and changing of the way we do things because it's just overriding a very important but nonetheless just a bias about the way people look and present and translating that to the fact it's much more logical to translate that to well. It doesn't impact our capabilities and how dare I judge them for it and in fact I should uplift different people to compensate for the past if that be excluded. But for people where there's so much more room to an uneducated ignorant way, fester about people's disabilities outwardly internally disclosing and then translate that immediately to their capabilities and their worthiness of accommodating for those needs. It's disgusting and of course there's legislation that exists and there's centers and all of the eyes are dotted and teaser crossed in terms of technically having rights but here's the thing that does not get translated to actual practice and it's so easy to get away with not practicing it because of the pervasive stigma that number one exists around this space number two. The lack of awareness of the issue to begin with even be held accountable number three, the lack of resources that most people who are disabled don't have they don't have the resources to be able to fight it or to move forward because they're already struggling and completely unresourced and also not to add the amount of added cost and burden that people with disabilities often have to have to maintain their conditions and fucking live like that's a whole other conversation for another day. And then also because it's so easy with everything I just said those first three reasons to just hide behind some sort of unfair and illogical but seemingly logical reason of they are not performing a certain way or they lapse in a certain manner because they didn't get the accommodations they needed in the first place but we don't have to talk about that because they simply just didn't need the arbitrary standard that oftentimes you know is not the same standard held for people who are. So people who are seemingly able and capable quote unquote so it is so much and it is it feels so in terms of insurmountable sometimes because it feels like screaming into a void and I know there are so many amazing people doing incredible work advocating and raising awareness amongst having to live in this marginalized fucked up situation to begin with and already being exhausted like I felt like I had to do this episode but I also was like my eyes are burning and it feels so heavy to talk through this and about this because it seems so unactionable to fix because it seems like such an insurmountable issue because it's just it feels so hopeless when there's been such a conversation about inclusion and upliftment and diversity for so many years now and where the fuck is it for disabled people and we great we have disabled or disability pride month and that's huge and actually this is the first time I've ever really seen it being publicly talked about and uplifted by anyone and that that's what inspires me to join another conversation and feel like I'm not alone and actually speak about my experience and speak about this reality but at the same time what are we doing and and when I say we I mean we as an entire society and not the people who are disabled because we do enough and they do enough it's everybody else and what are we gonna learn to really truly accept people who are different and who have different needs and I mean like God not that this should be a consideration but we don't choose this we don't choose this and the fact that we function and we do as much as we do in this world despite the lack of support we have despite the amount we struggle on a minute by minute basis like that is just the if anything else the biggest marker of well unnecessary but nonetheless resilience that people have nobody should need to be resilient to be able to get the same amount of opportunity and consideration and basic human rights is anybody else but nonetheless even if that's that shouldn't be necessary the fact that people are and they are getting by in this world this way disabled people the amount of resilience that shows like how is that not being seen or rewarded it's because it's so invisible and it's so suppressed and shut down and it's just so much easier and so much more frankly of a posturing situation to be able to talk about other ways that inclusion is happening that work it's frankly just like leasier in terms of they you know the more outward versions of inclusion and seeing that people who look different or around this again is extremely extremely valid and I am someone who also has those identities and that is a huge part of this conversation 100% it's just getting so much more attention and is easier in a sense than this other part of exclusion that is not really being addressed and like the only people that really talk about it really truly are the people who are experiencing disability themselves are people who are caregivers I mean where are the allies where the allies that can actually be good difference and people who are actively going out and helping these people helping us get opportunities giving us opportunities and including this as criteria for part of how they're actually planning on and executing on and being accountable to standards of exclusion and upliftment and change and change and my gosh if we're going to talk about diversity of thought and diversity of life experience where the fuck is this part where the fuck is this part I know for a absolute fact that my work and the things that I have been awarded for and uplifted for so far are hugely contributed to by my life experience is someone who is disabled in so many different ways my research question of what the research that's taken me all around the world to present that's you know the stuff about comorbid OCD and PTSD in the context of psychedelic system therapy that comes from being someone who has comorbid OCD and PTSD and who lives with those disabilities and who is treatment resistant and because of that me as a scientist I took that lived experience and turned it into a research question that I'm answering and I'm passionate about and I'm receiving all these stupid in the sense of like what is this doing for the world but like accolades and awards and funding and all this stuff like but that cut where is the upliftment of the fact that like I belong here because of who I am and we belong here because of who we are and not in spite of it I talk about all the time that's one of my phrases I guess because I'm so passionate about it of us as humans especially marginalized humans especially disabled people belonging here belonging where we are belonging in these spaces not in spite of who we are but because of who we are and I can say that all day long but in practice I've been fucking forcing ourselves in by just the perfect combination of creating its story that's empowering enough to override the biases that people have and showing and proving unnecessarily that we're beyond capable even though we have limitations and that we're needy because we need to get certain needs met but not too needy like I'm not like where is the actual justice in all of this And I know it's possible and I know there's so much work being done and I'm just expressing like the reality of where we are right now so that more people can be called to it because there are people doing it but we need far more people. We need people in power. We need people like you, like allies who are advocating for this, who are seeing this, who are raising awareness for this and who are actually asking for a difference to be made because we have seen the power of that for other forms of minoritized experiences for marginalized experiences. We have seen the power of demanding better, of creating better, of holding systems and people accountable to better and then it happening. But in order for that to happen, for disabled people, we need to undo the ableism and the suppression that is existed for those people and then we need to, we need to hold people accountable and by we, I mean allies, allies need to come to terms with all the ways they have been seeing disabled people as less than and as incapable and perpetuating these systems and once they see that, they need to then demand an advocate for better and do better when they are in positions of power. And so that's why I'm talking about this and I'm just adding one more voice to the many voices who have talked about this for a long time, who share their own experiences of their own disabilities of their own exclusion of their own, the struggles, the horrific struggles and the biases that they have faced and have to overcome or just live with because there is no overcoming them in the systems a lot of times. There is literally so much more I could say this could be an eight hour long episode and I still wouldn't have said enough and I'm not going to try to because once again, I am not the only person speaking on this. I am just adding my experience and my voice and my perception to this as someone with disabilities as a disabled person living in this world with other minoritized marginalized identities that I can compare to and in terms of all of the ways that people with disabilities can navigate this world, given what we do have and what is possible and just us speaking up, I have so much more than I'll be sharing in other episodes, particularly I have gotten a million and a half questions and requests for mentorship and sharing about my journey as a non-traditional student and a really a non-traditional human but navigating professionally, disclosure and how I live with my illnesses and my disabilities and how I navigate systems to be able to exist in them and that's a whole other conversation that I promise is coming and I also have amazing people coming on soon. Stay tuned for episodes of other disabled people and their reflections and experiences. One of the first ones that's coming up, I'll just tell you right now, is the amazing Kimberly Quinlan who is a, we probably almost everyone here knows her as your anxiety toolkit talking about all things, OCD, anxiety, self-compassion in her work. Also though, we have a huge part of our episode talking about disability justice and chronic illness and navigating that in the society and change. That's definitely coming in the next few weeks but so many more episodes to again, another whole episode will be coming on my experience navigating the system as a non-traditional student and a non-traditional person and a worker and disclosure and accommodations and resources and all of those things. But really, the point of this episode is to break free further of my own internalized fear, bias, stigma that I'm still overcoming every single day against myself after being conditioned for a lifetime of self-heat and lack of understanding and judgment of myself and this is an exercise of self-compassion and taking up space and yes, I have given talks, I have organized publicly done conference things about living with disabilities but it's usually in service fully of other people and talking through resources and while that's so important that's coming here too, this is a whole new radical exercise of just being open and honest about just glimpses and parts of my experience and there was so much more we could get into. I mean, my story talks, other episodes talks at length about how I literally failed out of school with the 1.83 GPA because of undiagnosed severe OCD and PTSD and physical illnesses that rendered me incapable of functioning. Just one of many, many ways disabilities have colored my life and how I have to consider moving forward with those things. There's so much more to say but thank you for holding space for me and my experience of just reconciling the idea of living with a disability in this world at this time and just beginning on this podcast to raise more awareness from the lens of disability justice and true diversity, equity and inclusion and by no means is this perfect or this advocacy perfect for me and I will not try to expect that of myself or at least enforce that expectation within myself but I, this is just me in a raw way expressing and trying and hopefully the real true goal is for you to if you're listening and you have disabilities but you have not explored your relationship with them and your reality of what you've navigated to have a safe space to start doing so by listening to this and reflecting on your own experience and beginning to give yourself compassion and advocating for yourself and then if you're an ally to start learning about what on earth this part of inclusion and upliftment and true true equality, this is in terms of disability justice and to start checking your own biases and supporting people in your life that I know exists because one in four people are disabled so you, you have to know people if you're not one yourself and just starting this conversation to create a safe space for all of us to move forward in an imperfect but community driven way from a place of true honesty, compassion and love for ourselves and each other so thank you so much for sticking with me on this episode and if you feel empowered, if you feel like this is a message you want to share, then please take this episode and send it to everyone that you think will resonate with this, anyone who needs to hear this, anyone who might relate to this and please share this on social media and help us grow this show in this community and a safe space and the way we communicate with each other and if you could take just five seconds right now if you love this show to subscribe and leave a rating and review so that you can get new episodes as they come out and you can support this show and me and being able to continue doing this as a completely one-man show, it would mean the world to me and just thank you for sticking around, can't wait to see you next week with another episode of Child with Uma sending you so much love and care as you navigate your week.