“I think like within disability spaces, you learn to like give each other more leeway and to be more forgiving. Cause you just don't know where someone's coming from and like learning that patience is really, really nice.” - Caroline on humanization within disability.
“So many disabled people are getting left behind by inaccessible structures and education that they're not getting to the other inaccessible structures and employment.” - Jessica on disability inclusion.
1. What are your relationships with disability and how do you identify with the disability community?
CC: So I have always had a hearing loss and when I was 15, I found out that I also have a progressive vision loss. So my hearing loss is like steady and was never really something that was like an identity characteristic for me… It was just kind of something that...was about me that I didn't really care about but the vision loss really mattered to me and sort of made me think about disability in a new way. I think I really looked for a community at that time to sort of understand what this meant for me. And so I think part of that is looking for how academia responded to it and how people think about disability. And so I got really interested in it, after I was able to accept disability and understand that, like it wasn't the end of the world for me… There really was a really wonderful community out there. I wanted to learn more about it because I realized that I wanted to be able to spend all my time with disabled people. So then I just kind of stumbled upon this research group in Michigan...where they were doing like disability health research. And it just fit in really well with my major. Yeah, so it's just been kind of like the happiest thing that could come out of it.
JC: Yeah, I'd agree with that. I think the research opportunities and more so like the opportunities to do research on disabled people with disabled people has been the best gift, especially being involved in the center. So I'm also disabled. When I was 15, I was diagnosed with any neuromuscular condition and used some mobility aids for a while and I'm now fully ambulatory. And I, yeah, I mean kind of like what Caroline said, like it's not going away. And it took a while for me to realize that and for me to realize [to] not only accept it as a part of my daily life, but also my identity. I am grateful that I came to that point in my growth because it opened a lot of doors to get involved with advocacy, with research, to meet other disabled people. The disability experience is one that I don't think is talked about enough or when it's talked about, it's talked about quietly. So having the opportunity to work in accessible ways with other people with disabilities is just like, it's like chicken soup for your entire being. It's just, it's the best gift. It's something that you don't get a lot in academia. You don't get a lot in medicine going into it. And it's yeah, it's a real gift to, to have the community as well.
JC: Yeah, I'd agree with that. I think the research opportunities and more so like the opportunities to do research on disabled people with disabled people has been the best gift, especially being involved in the center. So I'm also disabled. When I was 15, I was diagnosed with any neuromuscular condition and used some mobility aids for a while and I'm now fully ambulatory. And I, yeah, I mean kind of like what Caroline said, like it's not going away. And it took a while for me to realize that and for me to realize [to] not only accept it as a part of my daily life, but also my identity. I am grateful that I came to that point in my growth because it opened a lot of doors to get involved with advocacy, with research, to meet other disabled people. The disability experience is one that I don't think is talked about enough or when it's talked about, it's talked about quietly. So having the opportunity to work in accessible ways with other people with disabilities is just like, it's like chicken soup for your entire being. It's just, it's the best gift. It's something that you don't get a lot in academia. You don't get a lot in medicine going into it. And it's yeah, it's a real gift to, to have the community as well.
2. Could You talk about Some of the project that the hopkins Disability Center has been focusing on recently?
3. What Role(s) Do you think Non-Disabled Individuals have in amplifying disabled voices as well as creating better frameworks for allowing like disabled individuals to be more so involved in speaking up?
4. How do you think we can better include disabled voices in policy and research and advocacy in general too?
JC: My biggest thing is we can't have people in policy and research, all these things that generally to get a job in it require higher education degrees without focusing on accessibility and education in, you know, high school and middle school. Wherever it is, you have to not only have the resources to make the education accessible for the child, but to empower them when it comes to the time when they are now in charge of their accessibility for their education. They have to go and advocate for themselves to give them not only the information so that they know their rights and they know what they're entitled to and they know how best they learn and what accommodations they need, but also so that they have the confidence to go up against the many people who will tell you, like, ‘Mmm… Do you really?,’ you know. In my experience, accessibility has always been something to fight for and if you haven't gained the skills to fight for it, whether that's through learning on your own, getting information from other people in the disability community, from your parents, whoever, right. It can be really challenging. Or for people who have, later on said disability, if they get diagnosed in college. What are the supports in place for them to, um, for them to understand, you know, not only from an identity standpoint, what does your membership in this community now mean for you? But also from a legal and advocacy standpoint, how do you advocate for yourself? So you can finish your degree and go into policy or research, be a doctor or whatever you want to do. The path is broken, right? So many disabled people are getting left behind by inaccessible structures and education that they're not getting to the other inaccessible structures and employment and so we have to fix that path is my two cents.
CC: ...The importance of disabled mentors just can't be overstated, but how do you have disabled mentors without having people go through the process of academia first? It's kind of impossible... I think a lot of the time too, disability knowledge can be sort of discounted, because as we're saying disability or academia is riddled with like inaccessibility and lack of accommodation. Sometimes disabled people get pushed out and then your knowledge is discounted, if you're not actively part of the process. I don't really know how to create that culture shift, but like starting to believe people who aren't necessarily just in those same positions of power, such as academia. Making sure that the lived experience matters as much as the textbook experience.
JC: I would chime back into like echo that really strongly. Also say I think that like what Caroline was saying, it's important not only to make education accessible to disabled people, but to include disabled voices, to value things like disability studies, to value disability perspectives in healthcare, to understand ableist structures as they have been upheld in things like public health and medicine and work to undo those partially, you know, not only by working to better the knowledge of everyone who's already working in the field, but also fixing the path to let more disabled people get into the field because representation is important. And having people in leadership positions like Bonnie is my first PI research mentor, you know, person ever with a disability and having that has been just like an indescribable experience of feeling supported… She has an incredible career and much of it I aspire to. I'm like, well, you know, there's a very real example of disabled people reaching that point and so it's important.
CC: Absolutely. It really just kind of shocked me how like disability justice isn't a framework for medicine and for public health. I wanted to go into public health or chose that at my major, because I really thought it was going to be this space where I could like learn more about that. Cause to me like healthcare and disabled people just like make sense. It's just totally left out as so many like social movements are…
JC: I would cut in one more time to say, another thing that I think is really important and then I would really like to continue to see increase is intersectionality and like cross solidarity between social movements. Because, I've realized in a lot of my experiences that a lot of the disabled people that I've come into contact with are white and that is obviously not true in the greater US. And so needing to figure out why those disparities are existing or why the cross movement solidarity that could be there, right, isn't necessarily there. Which is like part of what we're trying to do with DISC in terms of understanding the compounding disparities that people face, which have been studied independently by researchers with those identities, but have not been studied in conjunction, you know, as they might occur in the real world.
CC: ...The importance of disabled mentors just can't be overstated, but how do you have disabled mentors without having people go through the process of academia first? It's kind of impossible... I think a lot of the time too, disability knowledge can be sort of discounted, because as we're saying disability or academia is riddled with like inaccessibility and lack of accommodation. Sometimes disabled people get pushed out and then your knowledge is discounted, if you're not actively part of the process. I don't really know how to create that culture shift, but like starting to believe people who aren't necessarily just in those same positions of power, such as academia. Making sure that the lived experience matters as much as the textbook experience.
JC: I would chime back into like echo that really strongly. Also say I think that like what Caroline was saying, it's important not only to make education accessible to disabled people, but to include disabled voices, to value things like disability studies, to value disability perspectives in healthcare, to understand ableist structures as they have been upheld in things like public health and medicine and work to undo those partially, you know, not only by working to better the knowledge of everyone who's already working in the field, but also fixing the path to let more disabled people get into the field because representation is important. And having people in leadership positions like Bonnie is my first PI research mentor, you know, person ever with a disability and having that has been just like an indescribable experience of feeling supported… She has an incredible career and much of it I aspire to. I'm like, well, you know, there's a very real example of disabled people reaching that point and so it's important.
CC: Absolutely. It really just kind of shocked me how like disability justice isn't a framework for medicine and for public health. I wanted to go into public health or chose that at my major, because I really thought it was going to be this space where I could like learn more about that. Cause to me like healthcare and disabled people just like make sense. It's just totally left out as so many like social movements are…
JC: I would cut in one more time to say, another thing that I think is really important and then I would really like to continue to see increase is intersectionality and like cross solidarity between social movements. Because, I've realized in a lot of my experiences that a lot of the disabled people that I've come into contact with are white and that is obviously not true in the greater US. And so needing to figure out why those disparities are existing or why the cross movement solidarity that could be there, right, isn't necessarily there. Which is like part of what we're trying to do with DISC in terms of understanding the compounding disparities that people face, which have been studied independently by researchers with those identities, but have not been studied in conjunction, you know, as they might occur in the real world.
5. How do you think disabled individuals are viewed within medicine or clinical research? If you could touch upon your own experiences, that would be great as well.
CC: I think there's a lot of... a pity for disability as one option, another option is just trying to get rid of disability. In a lot of my classes right now, we either don't mention disability at all or we talk about how to get rid of it. So we're always kind of talking about how to meet this future population that is like completely without disabled people, um, which is never going to be possible, always going to be here. So in a clinical setting, like I think there's like two sides of this… When I go to a doctor's appointment, um, you know, gotta like make sure I feel like they're going to take me seriously and that they're going to respect what I have to say and that I come off like I know what I'm talking about, because... there’s a lot of assumptions that come in with it. So like even just getting my initial diagnosis... it was like the very end of the day I could hear the vacuums, like outside of the room. They were closing up shop and the doctor was just like, ‘All right, here's your thing, any questions?’ And I was like so many, but I was like, yeah, I mean, like no I have none right now. They just kind of send you home. So there's not really any like support in my experience for disability. Maybe that requires better like social work, maybe that's not just the doctor's job. I don't think the actual clinical experience really takes into any of the account of the disability justice framework. So there's just the idea of how do we fix this and if we can't fix it, then go home.
JC: Huge echo to that… Something that has been challenging for me, not only like in my personal encounters with healthcare professionals, but also in terms of, you know, aspiring to be one myself is the fact that disability is viewed as a problem to be fixed… I need to fix your, you know, walking, I need to fix your hearing. I need to fix your whatever, versus an identity that impacts every aspect of someone's life that impacts, you know, the way they pursue their education, what job they pick, their family life, you know, how they interact with their significant other, like everything… There's been recent pushes in healthcare to say like, we need to be more patient-centric, we need to understand all of these other parts of people's lives and how they impact the way that they present in clinic or in a hospital encounter or whatever. But I haven't seen that push when it comes to understanding disability identity. And then, you know, the cognitive dissonance of wanting to go into a profession where the goal, the original goal of the profession is to eliminate people like me… It's a big thing to grapple with and it's challenging.
The important thing that I have to tell myself is just that, what I would have given for a doctor who understood what it's like, or especially, high school is awkward enough and then like having all this happen is like, jesus. But you know what I would have given for a doctor to understand the nuance of that and to help you. It’s going to be a challenging situation if you get diagnosed with something that you weren't expecting to get diagnosed with, nevertheless. So just figuring out how to better help people through those encounters and to do it in a way that, you know, can respect their identity. When I got back to being ambulatory, it was kind of like, okay, you're done now. But it's like, it still impacts every minute of my life. And so, you know, I'm not done now. And so figuring out how to have healthcare professionals who can empathize with that personally, I think the first step is like having more people with disabilities go into healthcare, which is a whole other animal in terms of trying to make medical education and then pre-medical education accessible...
There’s a lot of challenges there and a lot of dissonance and I mean a lot of violence. Like disability has long been pathologized and, you know, a goal of medicine has been to eliminate it. So a lot of people with disabilities don't feel safe or don't feel like they're taken seriously when they seek healthcare, especially people who are multiply marginalized or people who are in pain and need doctors to believe them on other patient reported outcomes that can't be sort of like fine nightly tested with like a blood test or something, right. When you need a doctor to believe you, having that relationship with them is so important and so having someone who is concurrent with your identity or having education that educates people on how to be culturally competent with people of your identity is like my hill to die on. But it's very important and would have changed a lot of people's experiences.
JC: Huge echo to that… Something that has been challenging for me, not only like in my personal encounters with healthcare professionals, but also in terms of, you know, aspiring to be one myself is the fact that disability is viewed as a problem to be fixed… I need to fix your, you know, walking, I need to fix your hearing. I need to fix your whatever, versus an identity that impacts every aspect of someone's life that impacts, you know, the way they pursue their education, what job they pick, their family life, you know, how they interact with their significant other, like everything… There's been recent pushes in healthcare to say like, we need to be more patient-centric, we need to understand all of these other parts of people's lives and how they impact the way that they present in clinic or in a hospital encounter or whatever. But I haven't seen that push when it comes to understanding disability identity. And then, you know, the cognitive dissonance of wanting to go into a profession where the goal, the original goal of the profession is to eliminate people like me… It's a big thing to grapple with and it's challenging.
The important thing that I have to tell myself is just that, what I would have given for a doctor who understood what it's like, or especially, high school is awkward enough and then like having all this happen is like, jesus. But you know what I would have given for a doctor to understand the nuance of that and to help you. It’s going to be a challenging situation if you get diagnosed with something that you weren't expecting to get diagnosed with, nevertheless. So just figuring out how to better help people through those encounters and to do it in a way that, you know, can respect their identity. When I got back to being ambulatory, it was kind of like, okay, you're done now. But it's like, it still impacts every minute of my life. And so, you know, I'm not done now. And so figuring out how to have healthcare professionals who can empathize with that personally, I think the first step is like having more people with disabilities go into healthcare, which is a whole other animal in terms of trying to make medical education and then pre-medical education accessible...
There’s a lot of challenges there and a lot of dissonance and I mean a lot of violence. Like disability has long been pathologized and, you know, a goal of medicine has been to eliminate it. So a lot of people with disabilities don't feel safe or don't feel like they're taken seriously when they seek healthcare, especially people who are multiply marginalized or people who are in pain and need doctors to believe them on other patient reported outcomes that can't be sort of like fine nightly tested with like a blood test or something, right. When you need a doctor to believe you, having that relationship with them is so important and so having someone who is concurrent with your identity or having education that educates people on how to be culturally competent with people of your identity is like my hill to die on. But it's very important and would have changed a lot of people's experiences.
6. WHAT ROLE(S) DO YOU THINK NON-DISABLED INDIVIDUALS HAVE IN AMPLIFYING DISABLED VOICES AS WELL AS CREATING BETTER FRAMEWORKS FOR ALLOWING LIKE DISABLED INDIVIDUALS TO BE MORE SO INVOLVED IN SPEAKING UP?
CC: I think a start is just sort of recognizing where non-disabled people fit. I think disability is relevant to everyone, whether you have a disabled friend or you just know about disability if you're not disabled. And so just like recognizing that you do have a perspective on disability and just sort of knowing where that fits and it doesn't mean that you can't work in disability... One of our PIs, Nick Reed, he's fantastic… As far as I know, he doesn't identify as disabled. I think a lot of that comes from he’s just willing to give space to disability, but also like he's willing to devote his time here. And yeah, he’s not really making any sweeping claims about disabilities in terms of lived experience, but, you know, he can still do the research and he can still look into patterns and amplify that way without really like claiming that he had all the answers.
JC: Yeah. I would agree with that. And I think Nick is a great example of someone who, to my knowledge is non-disabled, but who puts not only his own time and energy, but institutional power behind putting disability in the conversation. His big thing is age-related hearing loss... That's a great example of even if you're not disabled at the moment, it's a group you can join at any time that you are, you know, a second way from joining at any time. And so would probably serve everyone well to like learn a little bit more about and better understand and get connected with...I mean like a quarter of the US has a disability according to some surveys. And so if it's not, you, it's your significant other, it's your sibling, it's your neighbor, you know? And so having a knowledge of that I think not only is important when it comes to things like if you're in a position of power in education or medicine or, or any other type of industry, right… I think just understanding that it's a part of the human experience and not something that needs to be taboo or not discussed, but is, you know, like you were saying with the conversation of neurodiversity, it's just another part or another diverse part of the human experience. And so can we honor that and can we, you know, make art about that, do research about that, talk about that, let that impact our lives in a way that is not shameful.
JC: Yeah. I would agree with that. And I think Nick is a great example of someone who, to my knowledge is non-disabled, but who puts not only his own time and energy, but institutional power behind putting disability in the conversation. His big thing is age-related hearing loss... That's a great example of even if you're not disabled at the moment, it's a group you can join at any time that you are, you know, a second way from joining at any time. And so would probably serve everyone well to like learn a little bit more about and better understand and get connected with...I mean like a quarter of the US has a disability according to some surveys. And so if it's not, you, it's your significant other, it's your sibling, it's your neighbor, you know? And so having a knowledge of that I think not only is important when it comes to things like if you're in a position of power in education or medicine or, or any other type of industry, right… I think just understanding that it's a part of the human experience and not something that needs to be taboo or not discussed, but is, you know, like you were saying with the conversation of neurodiversity, it's just another part or another diverse part of the human experience. And so can we honor that and can we, you know, make art about that, do research about that, talk about that, let that impact our lives in a way that is not shameful.
7. Could you talk more about how you moved past that shame and accepted disability as part of your daily life and identity?
CC: I think it's an everyday kind of process. Like, I don't think I'm totally over it. But I think the narrative of people saying, like overcome your disability , you're successful once you've overcome your disability, even the idea of being successful in spite of your disability. It’s just really prevalent, really common and not something that I've like fully gone out of my head, even though I know, like logically and based on all the advocacy that other people have done that that's not how it works. Like everything I do, I do with my disability. The process of learning these things... it's hard and it's long. So like when there are these opportunities to do things that specifically honor or represent disability, it's so exciting and so like such a relief... I think moving past the idea of shame is really difficult, because it's, it's always going to be there in the outside world… This is so true for all like marginalized groups, you need a community to return back to, and make sure that they're the home base for you that's looking out for you and reminding you that you're valuable.
JC: I would, like most turns I'm taking in this conversation, echo Caroline's thoughts… I will caveat this with the experience of someone who was born with a disability and grew up always with a disability will be very different from mine. Because I was already... a 15 year old by the time that I was diagnosed and had my own thoughts about the world and had a lot of sort of internalized ableism that I had to reckon with and say it’s not that you're not trying hard enough or you're not working hard enough or whatever. It's that, you know, there's something going on and you need to learn how to live in a different way. I think like Caroline said, it's, it's an ongoing process, it's an iterative process. It's one that is aided by having other disabled people around you, who you can talk to about these issues, but it's also one that's hindered by when you have really ableist encounters and when you kind of, when you face marginalization and discrimination for your identity. I think, you know, as hard as people like Bonnie and all of us are trying to change the world that is unfortunately still a reality in a lot of different scenarios. So for me, it's just been, how do I make sure that those thoughts don't show up in my head, right? How do I make sure that I am not the one perpetuating those thoughts that, you know, if it is other people I have ways of staying well, of staying true to myself. But yeah, I mean, it's an ongoing process and if you ask us in 10 years, I'm sure we'll say something different.
JC: I would, like most turns I'm taking in this conversation, echo Caroline's thoughts… I will caveat this with the experience of someone who was born with a disability and grew up always with a disability will be very different from mine. Because I was already... a 15 year old by the time that I was diagnosed and had my own thoughts about the world and had a lot of sort of internalized ableism that I had to reckon with and say it’s not that you're not trying hard enough or you're not working hard enough or whatever. It's that, you know, there's something going on and you need to learn how to live in a different way. I think like Caroline said, it's, it's an ongoing process, it's an iterative process. It's one that is aided by having other disabled people around you, who you can talk to about these issues, but it's also one that's hindered by when you have really ableist encounters and when you kind of, when you face marginalization and discrimination for your identity. I think, you know, as hard as people like Bonnie and all of us are trying to change the world that is unfortunately still a reality in a lot of different scenarios. So for me, it's just been, how do I make sure that those thoughts don't show up in my head, right? How do I make sure that I am not the one perpetuating those thoughts that, you know, if it is other people I have ways of staying well, of staying true to myself. But yeah, I mean, it's an ongoing process and if you ask us in 10 years, I'm sure we'll say something different.
8. WHAT ARE SOME THING YOU'VE LEARNED OR YOU JUST HOPE TO SHARE THAT HASN'T COME UP IN THIS CONVERSATION YET THAT YOU'VE LEARNED IN YOUR ROLE AS AN ADVOCATE FOR DISABLED INDIVIDUALS AND YOURSELF?
JC: I mean, so during COVID, it's been a big learning experience and it, what it's really been is like a big realization of how many things that a lot of disabled people were once told were unreasonable are now suddenly achievable now that they are meeting the needs of a lot of abled people who are, you know, stuck at home or, or away from work or things because of the pandemic… that lit a fire in me as an advocate, right? It's like, this is something we've been asking for forever, right? Like the ability to zoom into class, right. Or the ability to have a lecture recording and watch it later, or all these different educational things or work accommodations that people have been like advocates have been fighting for actively for years and years and years. And in like the span of one week… we're all suddenly accomplished. And the fact that the disabled experience, which has been like continuously...continuously devalued is now the norm for everyone... Like universities are charging the same tuition employers are paying the same amount, like the same exact conditions that people were told were unreasonable or were not up to par with the conditions that abled people could do pre-pandemic are now being treated as equal. And it was just kind of this huge stomach punch…
It worries me if we're going to get back to a normal, that recenters ableism in that way. If we cannot learn from the pandemic and especially learn from disability advocates who have been saying, ‘Hey, we need this for years’ who have said during the pandemic, ‘Hey, it's nice that we got this, but it's not... a win for disability advocates that we got this.’ It was the realization that now that it's convenient for everyone, now we can have it. And I think that has been something that has stuck with me and something that I am nervous about seeing a return to normal. And because I have the sinking feeling that in some spaces, it will go back to a normal that is not accessible for many.
CC: ...Sometimes I've realized that some people just aren't going to get it, no matter how hard you try. Because I get really excited when I learn new things about disability and I want to share them with my friends. And like with people who are just really unwilling to learn from it, which can be really frustrating. And it's hard to be in that position. Of course, sometimes you do need people to believe you. But on the more positive side of this I think it's just learning more patience with people. In disability.. You realize there’s truly always a reason why someone could be doing something that’s confusing. As people are wearing masks and things like every time I go somewhere and... they ask a question like [I ask] ‘Can you repeat that?’ And a lot of the time people are like, ‘Why aren't you paying attention?’ And like, are you just texting or whatever? And the answer is like, no, I just can't hear you.
I think like within disability spaces, you learn to like give each other more leeway and to be more forgiving. Cause you just don't know where someone's coming from and like learning that patience is really, really nice. Cause I think that’s really just a more human way to approach things. So, and yeah, I think like I was just saying we've had more of that now. And I think we could have done with even more of that. Like with our classes being like at least hear optional, like a pass fail, like why is that not always the case? You just don't know what's going on, whether it's disability related or not. Just more accessibility is just better.
JC: ...I don't know if you've seen the, um, the Netflix documentary Crip camp, um, but it is largely centered around disability rights movement.. Or 504, just like landmark legislation for people with disabilities. I watched it when it came out and felt this like deep sense of shame for not having known the enormous amount of history about my community. I think that's partially because disability is really taboo. So, you know, a lot of people aren't talking about the history of it or the state of the community today. It's also because, you know, when you get diagnosed or something or when you get into the disability community, it's really hard to find the disability community and a lot of places and no one has like a starter guide for you, right? No one is, like, ‘Hey, these are the things you need to learn about. This is how you advocate for yourself.’ It's a very self learning process. For people who are in the middle of things like higher education, it can be a really survivalist process of, OK, these are the things I need to do to get what I need to get my degree right. There's little space for exploring things like the disability rights movement and disability art, like all sorts of things that make a community and a culture what they are. I wish that was brought up, like I should learn that in school, why didn't I like American history class, right? Like, it's pretty foreign and it frustrates me, because there is a rich history of disability advocates and policy and things, and people aren't seeing that represented, because we're not talking about it. And so I feel like it needs to be. Also, most of the people who I've talked to who have watched that movie are disabled, like we need to be able to figure out how to make this more mainstream.
Efforts are happening, but it's not and obviously not enough, given a lot of the experiences that I and other disabled people have had. There just needs to be more widespread education and just like an early education. I feel like it could do a lot in terms of mitigating biases, if you talk about that in like middle school or something, when people are kind of coming to themselves and exploring their self concept. I feel like that would be important and would have been important for me to have those tools and that knowledge before I got diagnosed.
CC: Definitely one of other thing that I want to add and I want to get Jess’s opinion on this, I don't know if this is like your experience too. But I feel like at least when I first was starting to understand disability for me, for myself, it started out very much within my very specific condition. People would compare the exact like genome... It was very specific of like we're going to talk about just a very tiny slice of the community. So it took me a while to, really branch out into the disability community as a whole where, like everyone with it with a disability is welcome and included. I think it's harder to break into that, also you have a lot more learning to do. I can't assume that I know anything about a person with like a developmental disability. But I think part of that is also how medicine separates people, and so like when I'm getting my appointment, I go to the clinic and you're not sitting around anyone else like who has any other disability unless they also have an eye condition. So you're really not encouraged to be a disability community as a whole. It's something that's really formed out of like out of resistance, and it's not something that I think is always viewed as like a natural thing, but there are these like truly cross disability experiences that just are really valuable.
JC: Yeah, my opinion is I totally agree… It's hard to have disability community because there is such diversity contained within the disability community and also oftentimes it's challenging to make something accessible for everyone because different access needs can conflict. Someone could be really high contrast. Someone could be like dim light or something because it's irritating to them… Another difficulty has been the fact that disability is kept confidential by employers or educators or whoever. And so you can't, you know, be like, ‘Hey, can you give me a list of everyone who is disabled so I can invite them to a meeting?’ Like you, you can't do something like that… because it is someone's medical information and there are people who are not comfortable identifying or who would not want that information out there. It does make a huge challenge when you're trying to build community and solidarity, when it's like, ‘I wonder, like, who do we think [has a disability]?’ Because, you know, twenty five percent of the population is disabled and so the likelihood is someone in the room that has a disability. But how do you figure that out in a way that is sensitive to everyone's identities and needs is a challenge in terms of building advocacy coalitions and things.
I will say the positive thing and Caroline mentioned this before with patients, being within a disability community that does include people across this across the disability spectrum is just like the ultimate exercise in care about other people and in empathy and in trying to understand the experiences of other people. I think that is like a skill that I have honed by being in disability spaces. It means that when I go into a disability space, no matter what I need, I know I can find it because I know other people there have been, you know, have their senses honed to understand other people's experiences, even when they're different from their own. So I think that's a really beautiful thing and a thing I really appreciate about the community that you don't find in others sometimes.
It worries me if we're going to get back to a normal, that recenters ableism in that way. If we cannot learn from the pandemic and especially learn from disability advocates who have been saying, ‘Hey, we need this for years’ who have said during the pandemic, ‘Hey, it's nice that we got this, but it's not... a win for disability advocates that we got this.’ It was the realization that now that it's convenient for everyone, now we can have it. And I think that has been something that has stuck with me and something that I am nervous about seeing a return to normal. And because I have the sinking feeling that in some spaces, it will go back to a normal that is not accessible for many.
CC: ...Sometimes I've realized that some people just aren't going to get it, no matter how hard you try. Because I get really excited when I learn new things about disability and I want to share them with my friends. And like with people who are just really unwilling to learn from it, which can be really frustrating. And it's hard to be in that position. Of course, sometimes you do need people to believe you. But on the more positive side of this I think it's just learning more patience with people. In disability.. You realize there’s truly always a reason why someone could be doing something that’s confusing. As people are wearing masks and things like every time I go somewhere and... they ask a question like [I ask] ‘Can you repeat that?’ And a lot of the time people are like, ‘Why aren't you paying attention?’ And like, are you just texting or whatever? And the answer is like, no, I just can't hear you.
I think like within disability spaces, you learn to like give each other more leeway and to be more forgiving. Cause you just don't know where someone's coming from and like learning that patience is really, really nice. Cause I think that’s really just a more human way to approach things. So, and yeah, I think like I was just saying we've had more of that now. And I think we could have done with even more of that. Like with our classes being like at least hear optional, like a pass fail, like why is that not always the case? You just don't know what's going on, whether it's disability related or not. Just more accessibility is just better.
JC: ...I don't know if you've seen the, um, the Netflix documentary Crip camp, um, but it is largely centered around disability rights movement.. Or 504, just like landmark legislation for people with disabilities. I watched it when it came out and felt this like deep sense of shame for not having known the enormous amount of history about my community. I think that's partially because disability is really taboo. So, you know, a lot of people aren't talking about the history of it or the state of the community today. It's also because, you know, when you get diagnosed or something or when you get into the disability community, it's really hard to find the disability community and a lot of places and no one has like a starter guide for you, right? No one is, like, ‘Hey, these are the things you need to learn about. This is how you advocate for yourself.’ It's a very self learning process. For people who are in the middle of things like higher education, it can be a really survivalist process of, OK, these are the things I need to do to get what I need to get my degree right. There's little space for exploring things like the disability rights movement and disability art, like all sorts of things that make a community and a culture what they are. I wish that was brought up, like I should learn that in school, why didn't I like American history class, right? Like, it's pretty foreign and it frustrates me, because there is a rich history of disability advocates and policy and things, and people aren't seeing that represented, because we're not talking about it. And so I feel like it needs to be. Also, most of the people who I've talked to who have watched that movie are disabled, like we need to be able to figure out how to make this more mainstream.
Efforts are happening, but it's not and obviously not enough, given a lot of the experiences that I and other disabled people have had. There just needs to be more widespread education and just like an early education. I feel like it could do a lot in terms of mitigating biases, if you talk about that in like middle school or something, when people are kind of coming to themselves and exploring their self concept. I feel like that would be important and would have been important for me to have those tools and that knowledge before I got diagnosed.
CC: Definitely one of other thing that I want to add and I want to get Jess’s opinion on this, I don't know if this is like your experience too. But I feel like at least when I first was starting to understand disability for me, for myself, it started out very much within my very specific condition. People would compare the exact like genome... It was very specific of like we're going to talk about just a very tiny slice of the community. So it took me a while to, really branch out into the disability community as a whole where, like everyone with it with a disability is welcome and included. I think it's harder to break into that, also you have a lot more learning to do. I can't assume that I know anything about a person with like a developmental disability. But I think part of that is also how medicine separates people, and so like when I'm getting my appointment, I go to the clinic and you're not sitting around anyone else like who has any other disability unless they also have an eye condition. So you're really not encouraged to be a disability community as a whole. It's something that's really formed out of like out of resistance, and it's not something that I think is always viewed as like a natural thing, but there are these like truly cross disability experiences that just are really valuable.
JC: Yeah, my opinion is I totally agree… It's hard to have disability community because there is such diversity contained within the disability community and also oftentimes it's challenging to make something accessible for everyone because different access needs can conflict. Someone could be really high contrast. Someone could be like dim light or something because it's irritating to them… Another difficulty has been the fact that disability is kept confidential by employers or educators or whoever. And so you can't, you know, be like, ‘Hey, can you give me a list of everyone who is disabled so I can invite them to a meeting?’ Like you, you can't do something like that… because it is someone's medical information and there are people who are not comfortable identifying or who would not want that information out there. It does make a huge challenge when you're trying to build community and solidarity, when it's like, ‘I wonder, like, who do we think [has a disability]?’ Because, you know, twenty five percent of the population is disabled and so the likelihood is someone in the room that has a disability. But how do you figure that out in a way that is sensitive to everyone's identities and needs is a challenge in terms of building advocacy coalitions and things.
I will say the positive thing and Caroline mentioned this before with patients, being within a disability community that does include people across this across the disability spectrum is just like the ultimate exercise in care about other people and in empathy and in trying to understand the experiences of other people. I think that is like a skill that I have honed by being in disability spaces. It means that when I go into a disability space, no matter what I need, I know I can find it because I know other people there have been, you know, have their senses honed to understand other people's experiences, even when they're different from their own. So I think that's a really beautiful thing and a thing I really appreciate about the community that you don't find in others sometimes.