Episode 31: Dr. Neera Jain

#DocsWithDisabilities Episode 31 Neera Jain, PhD, MS, CRC, Disability researcher and scholar university of auckland. Stanford Medicine. University of Michigan Medical School Family Medicine

In this 3-part series, podcast co-hosts Drs. Pete Poullos and Lisa Meeks talk with Dr. Neera Jain about her research on disability in medical education. The discussion begins with Part 1, where Dr. Jain discusses her work, the topic of political disclosure, and who enacts political disclosure. In Part 2, Dr. Jain continues the discussion of her work, and how the “isms” work together to create oppressive systems. In Part 3, the conversation moves from Political Disclosure to Dr. Jain’s theory about the accommodation paradox, and the closely related capability imperative.

Episode 30 Part 1 Transcript

Part 1: Political Disclosure

Description: In this 3-part series we talk with Dr. Neera Jain about her research on disability in medical education. The discussion begins with Part 1, where Dr. Jain discusses her work, the topic of political disclosure, and who enacts political disclosure.

Dr. Neera Jain: Disability Scholar, The University of Auckland, Faculty of Education and Social Work

Introduction

Lisa Meeks: Doctors with disabilities exist in small, but impactful numbers. How do they navigate their journey? What are the challenges?

What are the benefits to patients and to their peers? And What can we learn from their experiences?

Pete Poullos: Join us as we explore the stories of Doctors, PA’s, Nurses, OT’s, PT’s, Pharmacists, Dentists, and other health professions with disabilities. We’ll also be interviewing the researchers and policy makers that drive medicine forward towards real equity and inclusion.

Lisa Meeks: My name is Lisa Meeks

Pete Poullos: and I am Peter Poullos

Lisa Meeks:

and we are thrilled to bring you the Docs with Disabilities podcast. Interview

Dr. Lisa Meeks:

I am so excited about today’s podcast for several reasons. First, it will be the first duly branded podcast and co-hosted podcast with my friend, colleague, and all-around great guy Dr. Peter Poullos. And second, I get to interview one of my all-time favorite people, my absolute dear friend colleague and game changer in medical education Dr. Neera Jain. Pete, why don’t you tell our audience a little bit about Dr. Jain.

Dr. Peter Poullos:

Thanks, Lisa. I met you in person for the first time at the Coalition Symposium in 2019, which as you know was a real milestone in my professional and personal development. Neera gave a talk, and I was so wowed by her presentation skills and honestly just her whole way of being. I remember thinking to myself this person is so cool; I just have to meet her.

Neera Jain is a researcher, a rehabilitation counselor and a passionate advocate for disability inclusion in health science education. She’s also a board member for the coalition for disability access and health science education1. Neera completed her doctorate at the University of Auckland where her thesis was titled, “Negotiating the Capability Imperative2” In her thesis she explores the limits of an accommodations- focused approach to disability inclusion and imagines a transformational alternative that is inclusive by design.

Neera formerly led disability services for two major health science campuses in the United States: Columbia University in New York and the University of California, San Francisco. She also managed a free legal service run by and for disabled people called Auckland Disability Law.

Dr. Lisa Meeks

Absolutely Neera has had so many accomplishments. As many of you know, Dr. Jane was the Co-PI and co-author of the 2018 Association of American Medical Colleges special report on the live experiences of learners and physicians with disabilities3 and she is also my co-editor for the guide4, the time tested and essential resources for disability resource professionals in health science and professional education

Alright Pete, I am so excited and it’s so exciting to have Neera on the show!

Dr. Lisa Meeks:

1 https://www.hsmcoalition.org
2 Jain N. Negotiating the Capability Imperative: Enacting Disability Inclusion in Medical

Education (Doctoral dissertation, ResearchSpace@ Auckland). 3

4 https://www.springerpub.com/equal-access-for-students-with-disabilities-...

Meeks LM, Jain N. 2018 Accessibility, inclusion, and action in medical education: lived experiences of

learners and physicians with disabilities. Available at: https://store.aamc.org/accessibility-inclusion-and-

action-in-medical-education-lived-experiences-of-learners-and-physicians-with-disabilities.html

Neera, as you know I'm a huge fan of your paper on political disclosure5. Can you explain to our audience what political disclosure means? And more deeply as I read it, I found myself wondering if this is something that's unique to this generation of medical students.

Dr. Neera Jain:

Hmmm. Yeah. So, political disclosure, I'll give you a little bit of background of how I came up with it, and where it came from. So, as I was doing the research and talking to medical students, one of the things that really stood out for me was how many of them described these big and small ways in which they were talking about their disability with other people. And it wasn't just in that way that I would call logistical disclosure, which is really to get something that they need to access accommodations, to get some assistance in some way, but they were doing it expressly to change things. And, paired with the ways that they described those moments, where they shared aspects of their disability with other people, was this really strong sense of frustration with the stigma that they knew existed, and the conditions that they were in, the barriers they were facing.

And so, there was this connection between talking about their disability and wanting to change, make change, systemic change, and that it wasn't that they were talking about their disability just for them, but for other people. So, there's something really political about that. It's about challenging power, about challenging ableism, about wanting to make systemic change. And, really focused on that idea of the shifting perceptions of disability in medicine, disempowering stigma, and improving conditions for themselves and other people, including other students and also patients. So, sometimes it was coming up in things that happened in the clinic that they observed with patients, and sometimes it was peers and sometimes it was about their own experience. And then, also thinking about the curriculum. So, another thing that came up often was how limited discussions of disability were in their medical curriculum and recognizing that they had something to add to that curriculum or that those gaps needed to be filled. And so, they would take that opportunity to talk about their own experience or use themselves as an object of learning, which is complex. It's a complex thing.

It's important to talk about, I think one of the reasons that stuck out for me is because so much of the discourse or the discussion in disability support, disability advising is around how little students want to talk about their disabilities, unless they're "activists", or they have visible disabilities and it's obvious. But the students I was talking to, some of them were really activists, had that activist mindset. But a lot of them had non- apparent disabilities, and some of them were not very open about their disabilities or interested necessarily in activism, and yet they would describe these moments where they were taking action.

5. Jain NR. Political disclosure: resisting ableism in medical education. Disability & Society. 2020 Mar

15;35(3):389-412.

What the students told me, and this rang true for my own experiences working in this field, is that they were also being told by advisors, by faculty, that it's a bad idea to disclose, that they shouldn't disclose, that it can harm their careers, that it could have unintended consequences that could be harmful if they told their peers, and that was really frustrating for them. There is one student in particular who really talked about how she saw that this was a huge problem, she experienced the stigma, she was aware of the stigma, it was frustrating to her. But, when she talked about starting a group at her school, she was told, "Who's going to want to do that? Nobody wants to talk about that, and nobody wants to identify with that." And she said, "Well, am I supposed to feel ashamed about this?" And that's not okay. Or another student who talked about having a lot of difficulty around mental health in the first year of medical school, needing to take a leave and really wanting to talk to their classmates about what was happening for them, and to explain it and to be really open about it and being told, “you should really think about that because that could have really bad consequences for you, from your peers”. And the student said, "I hear you, but this is really important to me." And so, they emailed their entire class, explained what was happening and got so many emails back from their peers who said, thank you for saying this. We need to talk about this and actually I've been experiencing X, Y, and Z.

So, one of the really amazing things about political disclosure that I heard, and I'm sure anyone who's been in this position knows it's similar to that me too phenomenon of when you open the door and you disclose, it comes back to you in positive ways and in ways that you can't imagine in terms of making that space, creating space to talk about what's going on. Why I think it's important to talk about is because there is this maybe paternalistic protective idea of, we need to let students know what the consequences of this might be. There are real consequences, stigma exists. But what I was hearing from students was, “that's not helpful. We know stigma exists. That's actually why we want to talk about this, and until we start resisting that stigma, we're not going to change it. How else is it going to change? What are we waiting for?”

I felt that was really important to talk about, and to name it, and talk about the importance of it and also, talk about how for folks who are working in those administrative advising spaces, we need to be thinking about how we can do this differently. How we can join students in those efforts and make space for it, rather than continuing that dialogue that shuts down, or tempers that action. Because I think it, while it may be true that there is stigma and it might have consequences for people for sharing aspects of their disability, it's giving into that and trying to cloak it and say, okay, we can make things better. And well, at some point in the future, maybe it will be okay to talk about this, but for now keep yourself safe. For some people that might be the right decision and certainly not everyone wants to take this up, but I think we send the wrong message when we talk about and prioritize that protective stigma, fearful orientation.

Dr. Peter Poullos:

Don't you think it's different when you're talking about disclosing to your own community versus disclosing to an unknown community such as a hospital to which you are applying for a job?

Dr. Neera Jain: Yeah
Dr. Peter Poullos: Or a school where you're applying for a position in their class or

residency?

Dr. Neera Jain: Sure.

Dr. Peter Poullos: I struggle with that.

Dr. Neera Jain:

Yeah. And, I think, it's a really challenging space because one of the things that I heard from students was also like, "I really so badly feel this is needed and it's always feels risky because if I take this position, if I'm public, if I write about my experiences, if I start a group, then do I put it on my resume? I think it's an amazing thing I've done in medicine, but if I put it on my resume, then I'm effectively outing myself. If I write about it, it's discoverable. And so, what will that mean for me as a resident or as seeking a job?"

And, again, I think disclosure is always a very personal choice, but I also think if that's going to shut down opportunities in terms of residency and employment, is that a place that you want to work, and what's it going to mean for what you will encounter in those spaces and what you will need to lock away in order to be successful there?

I think that's the kind of critical tension that we're living in right now where we're trying to change the system, and I think we're at a critical point of saying, okay, the system's changing, practices are changing, it's not quite there yet. How do we get to that next level? And, I think, we're between a space of openness, and a space of protection and secrecy, but how do we get to that other place without saying, not going to do that anymore. This is who I am. I definitely think that's a personal choice.

Dr. Lisa Meeks:

You talk about it as a tension, and I wonder... I'm sitting here thinking about all of the students that I've advised over the last decade, and I have led that advisement with, when appropriate and when a student’s not in crisis, with a transparency that I think is important that students do understand the repercussions or the downstream effects-the licensure issues, how individuals may react to a particular piece of information.

When possible, I've protected students' information, in that if someone did not need to know about an accommodation, I didn't tell them about an accommodation. If a student provided me with more documentation than was necessary to fulfill their needs for

accommodation, I gave it back to them because of my fear that even though I work to protect the privacy of the student, that anytime you have something electronically shared, anytime you have something electronically stored, anytime you have information about a student that may be used in litigation, or maybe used for licensure that you're taking a little bit of a risk. But, in the same vein, I'm with you that until we remove the veil nothing will change, but how do you do that when there are all these consequences? I'm wondering if this isn't an issue that has to be addressed simultaneously.

Dr. Neera Jain: Absolutely. Absolutely.

Dr. Lisa Meeks:

A little bit to my point, I also feel like over the course of even just the last decade, I've seen an incredible change in the way students embrace their disability as part of their identity, versus the way you described them kind of cloaking it and I would say almost this motivation to pass as much as possible, and to hide as much as possible, that was there a decade ago that now we see students talking, especially in the mental health arena, we see students openly discussing mental health.

Dr. Neera Jain:

It's hard to say whether it's a generational thing because we don't have a clear history. I think, when I was thinking about that, someone like Kay Redfield Jamison[6] comes to mind and how she talks about the way she politically disclosed, but she did so under a pseudonym, right? Because to talk about her experiences as herself, as a person with bipolar disorder, was risky and yet it was so important to share the information from her lived experience viewpoint.

And, I think, there's certainly, probably still some of that exists. I mean, we saw that academic medicine perspective piece, just I think it was in 2019, that was published anonymously7 by a student with a psychological disability which I think shows that there still is some of that happening. But there's also folks like Justin Bullock[8[ and Rahael Gupta[9], who have written publicly about their experiences with psychological disability or mental health concerns.

6 https://en.wikipedia.org/wiki/Kay_Redfield_Jamison

7 Anonymous. In My Experience: How Educators Can Support a Medical Student With Mental Illness, Academic Medicine: November 2019 - Volume 94 - Issue 11 - p 1638-1639
doi: 10.1097/ACM.0000000000002953

8 Bullock JL. Suicide—rewriting my story. New England Journal of Medicine. 2020 Mar 26;382(13):1196-7. 9 Gupta R. I solemnly share. Jama. 2018 Feb 13;319(6):549-50.

There's change happening. I don't think... I would never say that political disclosure is a new thing because obviously it's something that's been happening for a really, really long time. I'm just putting a name to it. I couldn't find a name already for it, so I gave that name to it. But I'm sure someone will tell me that you're really talking about X, as it is with anything that you try to put a name on it. There's nothing new under the sun as they say here.

But I would say times are changing. I think about when I was at UCSF, when I started at UCSF and someone told me a story that really, I've held onto about how the movement for openness around the LGBTQI space had shifted at UCSF. And, when I came there, I was really moved by how present and open, well-developed, the community, the research, the openness and discussions that were happening on that campus were so different from what I saw in other spaces. And somebody I spoke to told me, "When this work started, we used to meet off campus. We couldn't talk about this in the classroom. We couldn't talk about it. We couldn't meet in these spaces safely. And now, we're in a completely different space."

And not, to say that disability and LGBTQI spaces, rainbow, queer spaces are the same. The movements are different, but I think there's something to be learned or to consider about that. That I hope that we're moving from a space where we have to use pseudonyms and that it's a danger to your ability to practice in the profession, to a space where we can be open, and celebrate, and really get beyond that idea that this is a liability in the profession. I don't think that we're there yet. I definitely think that liability mindset, it's not just around disclosure. I mean, that is an undercurrent of what I heard. At all times, political disclosure and resistance was happening, but it was always a risk. And, I don't want to just say we can all talk about it and it's not a problem anymore, but I do think critically to shifting into the space we want to get into is trying to move past a protectionist and fear-based space. But, I think, you raise a really good point, which is that in this moment there are risks, those risks exist.

Dr. Peter Poullos:

It may be possible to know one's own space, and not understand the space as to what you might be moving in the future. The heterogeneity is, I mean, it's broad.

Dr. Lisa Meeks:

I think that's a really good point and to your point, the decisions that you make as a 24- year-old medical student, you might not fully understand the repercussions on residency selection or on practice and limitations in practice.

Dr. Peter Poullos:

Well, I feel like such a hypocrite when I'm telling students to only disclose if it's a core part of their identity, or if it's absolutely important that they go to a place that's going to accommodate them. But, if their application maybe isn't strong and they're not going to have a choice of where to go, that they may not want to disclose, but I just... It makes me feel icky saying it.

Dr. Neera Jain:

Yeah. I know that feeling because I've had those conversations as well, and I always have this feeling like I'm throwing up a little bit in my mouth because I don't want to tell people those things and I don't want that to be the world that we're operating in. Even talking to students about here's the kind of prep work you should do before you apply to medicine, because you're going to need to come armed with information. That's a problem. We shouldn't have to tell students that, and I don't want to tell students that but we're not there yet, right? And so, I guess there's, as you said Lisa, there's like two levels on which to think about this and I also think... I don't know, I wonder how much, and this is this idea of reality-based thinking, it limits where we can go if we're always working against the worst-case scenario and...

Dr. Lisa Meeks:

You speak about Kay, right? Kay also had a privilege in her space and that her Chair supported her, knew about her mental illness, was 100% behind her, it was a safe place. And then, Pete, you brought up “don't disclose unless you know that you're going to a place that will support you or has supported you”. I refuse to answer questions about what schools are good schools to go to or bad schools to go to...these good schools, bad schools are usually informed by a person or a small group of people who are making it a good space or a bad space, right? That students will only go to those places or we'll seek out only those places, and then those become "the good schools" and the other schools become "the bad schools".

And every space should be open and receptive to improving and changing and growing. And every student should, by definition, have the same access, right? If we're all following the law, and we're all providing equal access, every student should be able to go into any medical school and have access. They should be looking at medical schools for reasons that extend beyond whether they will be accommodated or not. The question of whether I will get accommodations or not, should never be a question because one is legally required, and two people should be doing this to create space for equal access at a basic civil rights, social justice platform.

Jake Feeman:

That concludes part one of our interview with Dr. Neera Jain. Thank you to our guest, Dr. Jain, for her thoughtfulness and knowledge in discussing this important topic. And thank you to you, our audience, for listening or reading along. / We hope you will join us for part two, available now, as we continue our conversation surrounding political disclosure and how to push back against intersecting systems of oppression as we normalize discussions around disability in medicine.

This podcast is a production of the University of Michigan Medical School Department

of Family Medicine - M-Disability initiative in partnership with the Stanford Medicine-

Stanford Medical Abilities Coalition. The opinions on this podcast do not necessarily

reflect those of the University of Michigan Medical School or Stanford Medicine. It is

released under creative commons, attribution non-commercial, non-derivative license.

This podcast was produced by Dr. Lisa Meeks, Dr. Peter Poullos and Jake Feeman.

MUSIC CITATIONS:

“Aspire” by Scott Holmes “Donnalee” by Blue Dot Sessions “Positive and Fun” by Scott Holmes “Gambrel” by Blue Dot Sessions

Resources and Readings:

Jain, N.R. (2020). Negotiating the capability imperative: Enacting disability inclusion in medical education. (Doctoral thesis, University of Auckland). Available: http://hdl.handle.net/2292/53629

DisCrit (Disability Studies/Critical Race Theory)

Annamma, S. A., Connor, D., & Ferri, B. (2013). Dis/ability critical race studies (DisCrit): theorizing at the intersections of race and dis/ability. Race Ethnicity and Education, 16(1), 1–31. http://doi.org/10.1080/13613324.2012.730511

intersectionality:

Bailey, M., & Mobley, I. A. (2019). Work in the intersections: A black feminist disability framework. Gender & Society, 33(1), 19-40. doi:10.1177/0891243218801523

Crip Futurity

Kafer, A. (2013). Feminist, queer, crip. Bloomington, IN: Indiana University Press. Crip Theory

McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York, NY: NYU Press.

Ableism

Campbell, F. K. (2009). Contours of ableism. London, UK: Routlege.
Dolmage, J.T. (2017). Academic Ableism. Ann Arbor, MI: University of Michigan Press.

"location of trouble" and other useful discussion of access to universities

Titchkosky, T. (2011). The question of access: Disability, space, meaning. Toronto, ON: University of Toronto Press.

Disability Justice:

Sins Invalid (2019) Skin, Tooth, and Bone: The Basis of our Movement is People Available: https://www.sinsinvalid.org/disability-justice-primer

Mia Mingus - access intimacy

https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-mis... https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interde... and-disability-just

Episode 30, Part 2 Transcript

Introduction: In part 2 of this 3-part interview Dr. Jain discusses the danger of a single story, and the concepts, scholars and theories that inform her work. We also discuss what it means to be anti-ableist and imagining a world where all bodies are considered valuable.

Lisa Meeks:

Doctors with disabilities exist in small, but impactful numbers. How do they navigate their journey? What are the challenges?

What are the benefits to patients and to their peers? And What can we learn from their experiences? 

Pete Poullos:

Join us as we explore the stories of Doctors, PA’s, Nurses, OT’s, PT’s, Pharmacists, Dentists, and other health professions with disabilities.

We’ll also be interviewing the researchers and policy makers that drive medicine forward towards real equity and inclusion.

Lisa Meeks:

My name is Lisa Meeks

Pete Poullos:

and I am Peter Poullos

Lisa Meeks:

and we are thrilled to bring you the Docs with Disabilities podcast.

Jake Feeman

Hi everyone and welcome back to the Docs with Disabilities podcast. This is part two of our conversation with Dr. Neera Jain about political disclosure and the culture surrounding disclosing disabilities in medicine. In part one, Dr. Neera Jain shared some of her research surrounding political disclosure and prompted conversation about the culture and challenges behind medical students not sharing their disabilities, and how that culture is thankfully beginning to change. If you have not listened yet to part one, we highly encourage you to do so. We continue now with a discussion about why students chose to disclose, including certain common attributes of those students that relate to wider systemic issues, stories, and movements. We hope you enjoy.

Dr. Peter Poullos

Who are these individuals, you mentioned in your article about this, the personal or individual attributes of people who decide to politically disclose? Can you explain some of those to us?

Dr. Neera Jain

Yeah, I mean, I think what I said before about there really being variety in those students is important. I think the prototypical student who politically discloses would be really difficult to describe because they are quite different, but there are some kind of commonalities. Some of them were the students who saw themselves as kind of activists in other spaces, they had a strong sense of justice. And so, this was another space in which they could enact that.

But I think one of the things that was most important for the students, most common between the students who enacted political disclosure was that they connected their experiences to a bigger problem. So, they weren't just seeing what they experienced as a student with a disability as about them, or even attributing it to their disability, but seeing it as a systemic issue, a shared issue. Often, they learned the movement towards getting political about their disability was in those sharing moments, someone else disclosed to them and they thought, "Oh, I'm not the only one experiencing this. Huh. Okay. I was thinking about this as a me thing, but it's an us thing. Actually, if it's an us thing, then that's a system thing." 

A number of the students I spoke to were black or people of color who really were conscious of racism in medicine and were starting to link those things together. They might not have seen disability as a political issue, but they would very clearly see racism as a political issue. And when they looked across that and met other students of color who were disabled as well, and kind of started sharing experiences, there was a lot of power there in thinking about that co-constitutive force of racism and ableism and how those things work together. So that was definitely an aspect of the students who I spoke to and thinking about that idea of I'm here for a reason, I'm here in medicine for a reason. If I can't be open about and use... I'm here in, and I'm going to be in a powerful position. I came here to help my community. If I can't be all of myself, how am I going to really do what I aim to do when I came here? So those kinds of things I think were driving forces for people. I think that idea of moving beyond the individual to seeing this experience is not about just me, it's a reflection of a system was I think what most propelled students into those spaces.

Dr. Peter Poullos

Well at the end of your thesis, you talk about the danger, the danger of a single story. Can you explain that danger and how it relates to this topic?

Dr. Neera Jain

Yeah. So, I included that because a student did talk to me about that, which is from Chimamanda Adichie's very famous Ted Talk[1]. She talks about the danger of a single story and how, when we have really limited stories about a thing, Also, and I'm not sure if Chimamanda Adichie talks about this, but to me what else sticks out about that is the idea of, I don't know if you've heard of the phrase rep sweats?[2] That when there is very limited representation of identity or positionality, that every representation counts so much. So anytime there's a representation, that's like, whoa, what's this going to do for us? Or how's this representation going to harm us? And so, when you have limited and singular stories, they're doing a heck of a lot of work to represent an experience. And we want a lot of stories in order to have that kind of nuanced and layered understanding that represents all kinds of experiences, all kinds of variations on a theme. So, through research, you try to get more than a single story in order to piece together a better understanding, a more nuanced understanding through multiple stories. But at least in the research tradition I come from, we're not talking about trying to represent reality. The idea is that reality is always partial. It's always situated. It's always contextual. So, this research that I'm doing is also a collective story that is bound by time, locale, the people who spoke to me. So, it has limits to it. We can't say this is a universal story, it would be dangerous to say that.

Dr. Peter Poullos

Yeah, you know, it just resonated with me so much because I've been giving this talk to the second-year medical students about to enter their clerkship about my experience as a physician, without a disability, and then with a disability. It dawned on me, I don't remember in what year it clicked in my mind, or even if it was the first time I gave it, but I always wanted to tell the students that my story is only one story and it is not a typical story. They should not necessarily hold anyone to a specific standard that I create. Emphasize to them that what I want them to take away from my story is that it is really hard to have a disability.

There is a minority tax that comes along with being that person, with being the one who's an activist. You mentioned in your paper also that it shouldn't be the responsibility of marginalized people to be their own advocates, but it often does fall on us. One other thing, you talked about intersectionality there briefly, and people who share multiple identities, I think part of the way that I've been talking about disability at Stanford, in my outreach to non-disability organizations, for example, say I go to the neurology faculty meeting, I'm just talking to them about my group and about disability. I try to emphasize all of the overlap between ableism and all of the other “isms[3]”. Feeling like if it's not compelling enough that our students and faculty and employees are suffering from ableism, perhaps I can relate it to you and your own life and inspire somebody perhaps with one of these intersecting identities to comment beyond our team also. Even if they don't identify as having a disability. How do you think ableism interacts with all of these other isms? 

Dr. Neera Jain

Yeah, well, I would say, I used that term earlier, co-constitutive, which is a term that Subini Annamma[4] uses. Who's actually at Stanford now. She's an amazing scholar in disability and critical race theory. She's created a theory with some other folks called DisCrit[5] that brings together disability and critical race theory. And they talk about how these systems of oppression work together and hold each other up. So, we should be thinking about ableism, racism, hetero-sexism and colonization as systems of oppression that work together. And if we look historically, we can see how ableism has been employed to justify denied citizenship to women, to people of color, to black and indigenous folks, to justify things like institutionalization and slavery by saying that these people are not able; their IQ, their embodiment, makes them not fully human. When we think about trans rights and LGBTQI rights, and how people have been figured as deviant and their bodies as deviant, that is a form of ableism. So, these systems don't operate separately, they operate together. Folks who occupy the intersections then experience a new and complicated... it's not enough to say, "Okay, we understand how sexism works and we understand how ableism works. And so disabled women experience ableism and sexism simultaneously." It's actually this more complicated interactional effect that happens at those intersections.

And we should understand that these systems operate together, and they work together. So, I think taking it to that place as well, to say that it's not just that it's like racism, but actually it is interlocked with racism. It is interlocked with sexism, it's interlocked with anti LGBTQI concerns, those work together. I think recognizing that is really important to thinking about cross movement organizing. So, if you look at the work in disability justice that groups like Sins invalid[6] are doing, that is what it's all about. Folks like Mia Mingus[7], Alice Wong[8], when they work in disability justice, it's like, we can't actually look at these things separately because they work together, and our fights are connected. Because disability is an intersectional category, when we talk about disability rights, we should always be talking about indigenous rights and anti-racism and women's rights. All of those things are always operating together.

I think that's really an important thing that I don't think has fully caught on in justice spaces. There's a lot of good historical reasons for that, bad historical reasons for that is probably a better way of saying it. Because ableism has been employed as a tool of racism, then folks who are trying to work against racism often will distance themselves from disability because that's dangerous. That's been used to hold us back. We're not disabled by our race, but by doing that, they are re-employing ableism as a system. So, it's complicated.

Dr. Peter Poullos

You know, I just recently learned the term anti-racism and anti-racist, and I learned a new term yesterday also, which is anti-ableism[9].

Dr. Neera Jain

Yeah.

Dr. Peter Poullos

So, what does it mean to be anti-ableist, and how can we teach people how to practice anti-ableism?

Dr. Neera Jain

Yeah, well, I think it might be helpful to start by talking... When I talk about ableism, what am I talking about? Because I think different people use it in different ways. So, I use the definition of a scholar, she's from Australia, but now she's in Scotland, Fiona Kumari Campbell[10] who's one of the leading scholars in ableism. She talks about ableism as a system. So, she says that it's a network of beliefs, processes and practices that produce a corporeal standard. So, a kind of body and mind that are projected as perfect species, typical, and therefore fully human. So, it's a system that creates an ideal body and mind, and then social structures are arranged around that body and mind.

Then I also work with Robert McRuer’s[11] work around Crip theory[12]. Alison Kafer[13] is another scholar that works in that space. Robert McRuer talks about ableism as the condition of compulsory able-bodiedness. I think what's important from what he says is that this corporeal standard, this bodily mind standard that is held up as normal, as fully human, is also unachievable by anyone.

So, if we think about relating it again to other systems of oppression, if we think about something like hegemonic masculinity, so ideas of men and what it means to be a man that actually there's very few men who actually embody that kind of prototypical manly man. It creates this unreachable standard that is harmful. And yet, because it's so omnipresent and structured into the way we think and the way we do things, we are constantly compelled to try to reach it. Therefore, it becomes this dominant trope that we are relocating as the ideal body at all times.

That's not to say that, well, if people just stopped enacting this and stopped reaching for the standard that we could get rid of it. I think that puts too much onus on individuals. Actually, people who've talked about this for a long time, people like Judith Butler[14] say, yes, people can resist it and people can fail either on purpose or because it's unreachable, they fail and so that kind of challenges that standard. But actually, we really need to be thinking about the systems and structures that uphold that standard and start to think about dismantling them. Rather than saying, "We as individuals are responsible and therefore, we need to resist." And I guess that links back to that idea of political disclosure and saying, "Wow, it's amazing that these students are resisting and that they are saying no to this idea that they need to hide their disabilities, and we should celebrate that. But actually, they shouldn't carry all of that weight." And we shouldn't just say, "Wow, amazing, cool. They're doing it." We should be saying, "Wow, (a) they feel the need to resist this, so we should understand there's a problem that needs to be resisted." But also, we should think about what's upholding that resistance and how do we get rid of it?

I guess that speaks also, Lisa, to what you were saying about the two levels, working on it on two levels. Yeah. We resist it from below, but also any kind of resistance from below suggests that we need to change structures from the top. So that's a long-winded way of setting up that being anti-ableist is about recognizing that there is a system at work that's creates this kind of ideal body. And also, that then creates disability in the sense that people who don't meet the standard, there's this invisible dividing line that creates disability. That says, "These bodies are disabled. These bodies are good, these bodies are devalued, and these bodies are privileged." So, being anti-ableist is thinking about how do we dismantle that?

Jake Feeman:

In this concluding segment, Dr. Jain furthers her discussion surrounding Crip theory, Crip futurity, and how we must begin talking about disabled people as essential in order to create a better and more inclusive world.

Dr. Neera Jain:

So, scholars of ableism, people who work in Crip theory space, talk about blurring the binary. So, thinking about how we have a system that sets up a hierarchy of abled and disabled, and how do we work towards a world in which we see that all bodies are good, all bodies are valuable, and all bodies are expected. Normal variation in humans includes disability. So how can we create a world in which we have more space and more flexibility to move away from privileging a prototypical body and mind, and thinking about what do we gain and how might we operate in a way that acknowledges that all bodies are valuable? Humans are valuable, and humans come in all different shapes and sizes and ways of moving through the world, and how can we recognize that and work differently 

For me, it's really important to say that the work that I build, what I'm saying on, is the work of disabled people, right? I think it's important to say that I'm a non-disabled person, or temporarily non-disabled person.

Dr. Peter Poullos

I liked how you said that. In your writing, yeah.

Dr. Neera Jain

At this very moment, I am not a disabled person. I have learned a lot, most of what I talk about is built from the scholarship of disabled people. I think why my work is maybe different is because that is the work that I'm building it off of. For me, I think what we were talking about earlier in terms of that tension between the world we live in and the world we want to get to, that's really the tension I was living in while I was doing this research. It took some people telling me, "Look, how do we get there if we keep just talking about the world that we're in?" When I found work like that of Alison Kafer, who talks about Crip futurity, she's talking about how do we imagine a future in which disabled people are considered essential, they're considered valuable? They're considered just an essential part of the world. If we keep imagining a future without disability or we situate a future in the world that we live in now, we're never going to get there. It closes off possibility. And that kind of mindset, and really delving into disability scholarship, is where this work comes from. I am indebted to those scholars who are visionary and who are doing this work. And I'm just taking it to medical education and saying, "Hey, let's think about this," but I can't claim it as my own.

Jake Feeman:

That concludes part two of our interview with Dr. Neera Jain. Thank you to our guest, Dr. Jain, for her thoughtfulness and expertise around this important topic. And thank you to you, our audience, for listening or reading along. / We hope you will join us for the third and final part, available now, as we conclude our conversation surrounding political disclosure by discussing the accommodations paradox and how we can create a better and more inclusive world for disabled people.

This podcast is a production of the University of Michigan Medical School Department of Family Medicine - M-Disability initiative in partnership with the Stanford Medicine-Stanford Medical Abilities Coalition. The opinions on this podcast do not necessarily reflect those of the University of Michigan Medical School or Stanford Medicine. It is released under creative commons, attribution non-commercial, non-derivative license. This podcast was produced by Dr. Lisa Meeks, Dr. Peter Poullos and Jake Feeman.

[3] Isms: From Oxford Language, a distinctive practice, system, or philosophy, typically a political ideology or an artistic movement.

[9] Anti-Ableism: strategies, theories, actions, and practices that challenge and counter ableism, inequalities, prejudices, and discrimination based on developmental, emotional, physical, or psychiatric (dis)ability.

Episode 30, Part 3 Transcript

Description: In this final portion of our 3-part conversation with Dr. Jain, the conversation moves from Political Disclosure to Dr. Jain’s theory about the accommodation paradox, and the closely related capability imperative. 

Introduction

Lisa Meeks:

Doctors with disabilities exist in small, but impactful numbers. How do they navigate their journey? What are the challenges?

What are the benefits to patients and to their peers? And What can we learn from their experiences?

Pete Poullos:

Join us as we explore the stories of Doctors, PA’s, Nurses, OT’s, PT’s, Pharmacists, Dentists, and other health professions with disabilities.

We’ll also be interviewing the researchers and policy makers that drive medicine forward towards real equity and inclusion.

Lisa Meeks:

My name is Lisa Meeks

Pete Poullos:

and I am Peter Poullos

Lisa Meeks:

and we are thrilled to bring you the Docs with Disabilities podcast.

Jake Feeman:

Hi everyone, and welcome back to the Docs with Disabilities podcast. This is the third and final part of our conversation with Dr. Neera Jain about political disclosure and the culture surrounding disclosing disabilities in medicine. In part one, Dr. Jain shared some of her research surrounding political disclosure, and in part two, she discussed how systems of oppression overlap within the medical field and how that has affected disabled students. If you have not yet listened or followed along to part one or part two, we highly encourage you to do so. We continue now with a discussion of the accommodation’s paradox. We hope you enjoy.   

Dr. Peter Poullos

Let's talk about the accommodation’s paradox.

Dr. Neera Jain

One of the big findings when I was doing the research and trying to figure out what is happening here? How is inclusion happening? There was this paradox that students were encountering in the process of requesting accommodation. So, at the schools that I studied, all of the inclusive efforts were oriented around better access to accommodations, improving policy, improving practice around that. And yet, there was this persisting issue around it. And it really comes down to this idea of the accommodation paradox, which is that in order to access accommodations, essentially you need to claim disability, and you need to claim inability. And to do that, you need to do so in a context where a kind of hyper-ableism exists, that I call the capability imperative.

And so, in this context where students are constantly given this message that you need to be able to do all things, that you need to be a superhuman, that you need to have no needs, that you need to fit the system that exists, that requires this kind of hyper-ability. We are then asking students to say, I can't meet that standard. And it creates a risk because when... depending on how students know the accommodation system, what might be possible, how safe they feel talking to people in their context about accommodations, their historical experience with accommodations, and that frames what they think is possible. And so, to reveal that you need something, risks the possibility that nothing can be done, and that what you are telling someone is going to be used against you.

So, we ask students to tell us what they need, to tell us what the barriers are. But because of the way that the culture of medicine operates, and also how disability is understood in those settings, as an individual inability rather than a social issue, or a cultural issue, or... when I say cultural issue or social issue, I mean that the barriers are created through the system rather than located and as a problem of the person. And when we think about what accommodations are doing, yes, they're changing a system the way a system works, but they are in response to an individual. So, although they're changing the system, the policy, the practice, they are responsive to an individual and therefore, the problem becomes located in that person, even though the response is within the system. 

And so, the paradox of accommodations is that they're a tool to change the system, but really, they're so much triggered by an individual, and located around that individual, that they become…at least... this is what I heard from students, and saw through the way students talked about negotiating these spaces, was thinking about, what will it mean to ask for an accommodation? When a student asks for an accommodation, there was already a whole process that they had gone through, of thinking about what will it mean if I ask for this? What are the risks? What are the benefits? And I think it's really important to think about it that way, because there's a discourse, I don't hear it as often anymore, but it's still an undercurrent of conversations around accommodations, which is, do they really need it? Are students asking for too much? Are they, I don't know, working the system? And what I heard from students... And again, this is a contextual, temporal project. But what I heard from students is, I don't ask for more than I need. In fact, more often than not, I ask for less than I need. Sometimes, there were a couple of students that talked about, If I ask for more, maybe I'll get what I need, and that was strategic as well. And there's also a weird thing around... when we're working with folks whose documentation is a neuropsych evaluation, how does the evaluator say what they need? And how does that affect what they can ask for and what's considered possible within a school? There's a whole lot of complexity there. 

Thinking about this paradox is really important in the sense that that first step of asking, a student is already taking a risk when they do that, and it's always located in this space of imagined possibility. And so, on the side of administrators and faculty who are involved in this process, they're also negotiating this paradox and negotiating this capability imperative in the sense that they're saying, “what's it going to mean if I make this change? Is this kind of change possible? What will it mean for medicine? What will it mean for licensure? What will it mean for residency? What will it mean for students who follow?” And actually, what I heard from students is, they're also thinking about all of those things. They’re also thinking about not just themselves, but the students who follow. If I'm a difficult student, what's it going to mean for students like me who follow? Which is another really important thing that I heard, particularly from students who had visible, readily apparent disabilities. Your physical disabilities, your sensory disabilities. Because those students often came into medicine with their disabilities apparent, with their disabilities out in front and discussed through admissions. And they talked about knowing that they were forging new pathways, and that their experience was important for the students like them who followed. And so, they were negotiating what they asked for in relation to, what's it going to mean if I ask for everything that makes this an ideal situation, that makes me an undesirable student, “what does that mean for my relationship with the school? What does it mean if I don't match, and I need some real help to get a residency?” So, this kind of individualized process really creates that person as a risk taker, as a problem

There's a disability studies scholar who looks at higher education and disability in academia as a space. And she talks about... She's Tanya Titchkosky[1] in University of Toronto. And she talks about it as the location of trouble. What is considered the location of trouble? Is it the disabled person? Or is it a system that has been designed in this very restrictive way? And so, we need to recognize that while accommodations are seen as this primary tool of inclusion, they are very limited because of this paradox, because they're so individualized.

Dr. Lisa Meeks

How you've presented this makes complete sense. And at the same time, I sit back, and I think, I want to do all of these things. And, but I operate in a system of laws that require me to individualize a student. So, while I can work towards universal design, and I can work towards creating a system that looks at the benefit of adjusting for all learners, I am still bound by the requirements of the law that protect students with disabilities. So, it's similar to the situation where... I may have a student who wants to disclose but is tempered by the consequences that are in the system or coming up in the system. It's this weird balance of push and pull. And I know, in the last decade, we've pushed together a lot. Yet, I'm still having conversations on a weekly basis with schools who are—for the very first time doing something that we did a decade ago. How do you exercise, or rid this accommodations paradox in a system where you're legally bound to assess students for individualized accommodations?

Dr. Neera Jain

So, one thing that I would say is that the way the law is structured, and the need for accommodations is a floor. It doesn't mean you can't do more than accommodations, and law says that. And what came to mind when you were talking was a conversation I had recently with someone who was talking about how the number of accommodation requests, or usages, decreased when an exam moved online. So, when it was an online exam, and all of a sudden students had the flexibility to orient their space as they prefer it, that works for them. All of a sudden, all of these students did not need a whole bunch of accommodations. And to me, that signals that so much of accommodations is based on rigidity of systems, right? So, moving towards universal design. And I think it's important to think about universal design as building flexibility into the way things work. And I think that's for all students, right? So, part of the vision that I have is a much more flexible educational training process that then the location of trouble, so to speak, isn't disabled students, but there's the system that has more space for all kinds of people. 

So, I think it's important to think about, who do we want in medicine? Who do we need in medicine? And how has the medical education, and professional structure been retrofitted to fit all kinds of people in? If we think about where medicine started, it was for white men of a certain socioeconomic space. We weren't thinking about women. We weren't thinking about people of color, indigenous people, relational ways of being in the world. We were thinking about this independent, highly individual person. And if we think about things... I think about here in New Zealand, the real push for Māori and Pasifika students to be in the medical profession. So indigenous New Zealanders, Pasifika New Zealanders. And when we think about a Māori worldview, a way of being in the world that is highly relational, that is very embedded in your community, your family, and what is required to attend medical school is to pull yourself out of that system, to get through medical school, and then become a doctor.

I question how the system allows those students to be all of themselves and to maintain those highly important, that relational way of being in the world, while they're training to be doctors. How do we bring that into the way you do medicine? If we're asking you to put that aside for a few years so you can focus on your medical training? How do you become a doctor that is enacting and incorporating that? And I think the parallel in terms of disability is highly similar.

We think about what we want out of physicians, disabled physicians, we want disabled physicians, all kinds of disabled physicians who bring that lived way of knowing and being into the world, into their medicine. Right? And it shouldn't be like, you're a doctor and you're a disabled person, those are two separate things. I would love to see people feel like those identities are fully brought together and enrich and expand each other. And I think when we think about the way that training works now, I don't know that it works that way. I don't know if you would say that's happening, or is encouraged, we want disabled people to flourish in medicine, and not to feel like in order to flourish in medicine, you need to get that disability under control and keep it in a box, and only take it out when you're working with a disabled patient. I want it to be fully a part of how someone is in the world, and does medicine, and learns about medicine, and goes through medical school.

And what I hear from people is that it is being asked to be repressed in that process. So, I don't know that this is answering the question of how do we get there? but I think it's about thinking about how do we allow people to be all of themselves. And so, if I was talking to a school that wanted to take this approach, I would say, I don't have all the answers for you, first of all. I don't know what this looks like. I don't think anyone does because we haven't done it before. But what we need to do is start from a space of saying, “we want disabled people in medicine. We want all kinds of disabled people in medicine. We need them. They're valuable. They're valuable to this space.” Who else do we want and need to be in medicine? We need all kinds of people.

So, designing from that space, I think is what's really necessary. And I think the first step is what we were talking about earlier, is how do you become anti-ableist? You become anti-ableist I believe first by noticing, how do we see this? I taught a class for medical students here in New Zealand in disability studies this year. And my main goal was for them to start noticing disability. And start noticing how they notice disability. And to start becoming uncomfortable with the status quo. And start identifying other ways to think about disability. And what they told me at the end of that class was, I can't unsee this. I can't stop seeing disability everywhere. And I can't stop seeing how the barriers are everywhere. And how that's problematic. And how that's limiting. And I think that's a starting place, that kind of consciousness raising, I think is really important. Start learning, how have I internalized ableism? I'm not without internalized ableism. I'm constantly working on noticing, and shifting, and resisting that. Because it's a force that is so dominant in society. And so, I think you start by building, raising consciousness. Starting to notice, and starting to say, "Hey, are there things that we can change right now?" But I think in order to really get to that ideal place, there's a lot of system change that needs to happen, and it's not just in medical education. You have to think, medical education is informed by a larger system. And that's often what I heard as resistance to... Even as you say, Lisa, that kind of basic inclusion stuff now. Well, what about residency? We could do things here, but then how are they going to get through residency? Well, this is what's required if you go into medical practice. You need to be able to see this many patients in a day. Well, okay. Maybe. Maybe not. We also do accommodations in those spaces too. And also, we change by pushing those things. One of the students I spoke to had moved into residency in the time of the projects. I talked to them multiple times and they were doing that work of changing that residency program while they were there. I wish they didn't have to do that, but they were changing it. And that resident’s program will never be the same after that student moves through it. And so, I think we limit possibility by saying, well, that's how it is. That's how it is there. This is what it's like now. We can push against that, and resist that, and start building the spaces that we want now. 

But I also think we do need to think beyond medical school. Because even as I think about things like wellness and how all of what we're talking about is very much connected and embedded in this idea of wellness. And individual responsibility for wellness as a tool of ableism. But also thinking about, okay, so structurally, how do we change? How does ableism create a system that doesn't work for any doctor? For any patients? And so, if we start to think about it that way, there's a real case for saying, okay, what about the system isn't working, and what is necessary to change in order to create a more effective, a more humanistic, a more useful medical care system. And when we privilege the things that are the way we know them now, the limitations that we know now, we lock those things in place, and we say it's not possible. And it's big, and it's hard, and it's going to take a lot of work. But I think if we don't talk about that bold end goal, we don't get the friction. Something my supervisor always would tell me is, you need to create the friction. You need to create the dissatisfaction with the status quo. And we get that by saying, "Hey, this is what we want. Why aren't we there yet?" And how can we get the friction that gets things moving that creates sparks that ignite change? And I don't think there's easy answers, but I think we start with a big, bold vision. And we, we start to think about what can we do in ourselves? What can we do in the everyday? What can we do in the places that we are to try to agitate towards that space that we want to be in?

Dr. Peter Poullos:

I was just thinking during this conversation, you wouldn't hire somebody to be your basketball coach who had never played basketball. Or your football coach to be somebody who had never played football. Why do we even consider non-disabled people becoming doctors? Perhaps we should only accept disabled students to medical school. Then people will be clamoring to disclose. There will be a massive competition to see who can not only disclose, but to disclose the most disabilities possible to get their spot in medical school. Things will change.

Dr. Neera Jain:

You're making me think of something a student said to me, which was... We were talking about technical standards and we were talking about who decided that these are the things that you have to have to be a doctor? How are they limited? And that students said, well, why isn't experience of being a patient, a significant experience of being a patient, why isn't that a technical standard? And I think that speaks to exactly what you're saying. Why would we want people who haven't had any experience of this kind of care? I don't know. It would be a, certainly a provocation that would be worth exploring further.

Dr. Peter Poullos:

Thank you.

Dr. Neera Jain:

Yeah.And imagine, what would a medical school look like that was made... That had only disabled students? How would you design it?

Dr. Peter Poullos:

It would be so collaborative and collective. I'd be like, I can't do surgery so maybe someone could do my surgeries for me, but I'm a good listener and I'm great with my eyes. So, I can do more of that stuff. And then people would gravitate to what they're good at and help their colleagues who weren't as good recognizing that everybody has some area in which they are not the best. It's what you're talking about, this blurring, the binary thing that able-bodiedness is a spectrum. It's helped me deal with my injury, thinking about things like that. In that some things that everyone can do, like putting on their shoes in the morning is very ordinary. But being a doctor and being able to help people is not.

Dr. Neera Jain:

Yeah. And I think that idea of interdependence and relationality or thinking of a doctor, not as an individual, independent unit. There's research that talks about how that is a really outdated concept. And yet, we treat that as... In terms of evaluating, and assessing, and licensing people as if they are a unit in and of themselves who works in a vacuum. And if we shifted, and that's one of the... When I outlined some principles that might be useful to undoing that capability imperative. One of them that I think is essential, is understanding physicians as interdependent, and where can they have the most value? How do people work together? And I don't know if you've come across Mia Mingus's work, she talks about something called access intimacy[2].

she talks about access intimacy as... It's an intangible feeling when you... It's almost like you don't need to ask for what you need when people... You have that relationship where It's not a burden to ask for what you need. And also, it's not all on you. So, I think Dr. Peter Poullos, when you talked in your interview with Lisa about... You talked about the straw and your colleague who you felt just got it. And I think it's that feeling of someone who just gets it, is that kind of access intimacy. Where it's like, "This is safe. This is something that isn't burdensome, that isn't all on the disabled person." It's a kind of a space in which it feels you have that intimacy. It feels okay to ask for what you need because actually everybody has needs. It's not just about disabled people needing things, but we all need things. So being able to ask for help is part of access intimacy that's not just about disability.

So, I guess I, when I think about interdependence and the kind of space that we want to move into, it would really acknowledge that, yeah, we all have things we're better at, things that we're not as good at. So, if we work in a way that leverages people's strengths and recognize that within a team we together, we are powerful and have all the things that we need. But no one of us can do this alone. Then we start to think about how do you learn medicine differently? How do you do medicine differently? I think that's also, important to thinking about how do we transform medical education, is by really working towards that interdependent way of working, and thinking, and doing.

Dr. Lisa Meeks:

You see why I love Neera Jain. I literally for hours, learn, and grow, and learn, and get into a space where I am uncomfortable. Where I'm saying I've got to do more. I've got to read more. I have to learn more. I have to listen more.

Dr. Peter Poullos:

Oh, I'm so glad that I wasn't the only one having those thoughts. I'm glad that I'm not the only... not a disability scholar, but I'm trying. But man, there's an ocean of material to learn.

Dr. Neera Jain:

Yeah. I mean-

Dr. Peter Poullos:

Being a disabled person does not make you an expert in disability, anything.

Dr. Neera Jain:

Well, I think I've done a lot of reading over the last four years and I'm doing more reading. While I have studied a lot in this area, there's still more that I'm still learning all the time. I'm constantly uncomfortable and uncertain. So, I join you in that space.

Jake Feeman:

To our guests, Dr. Jain, thank you thank you so much for sharing your research findings with our team, and for bringing an awareness of these topics to medical education. We are grateful for your knowledge and thoughtfulness around political disclosure and the need for a disabled-inclusive future. Thank you also to our audience for listening or reading along to this series. We hope you will subscribe to our podcast and join us next time for our interview with Dr. Rana Awdish, author of the book, In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope. 

This podcast is a production of the University of Michigan Medical School Department of Family Medicine - M-Disability initiative in partnership with the Stanford Medicine-Stanford Medical Abilities Coalition. The opinions on this podcast do not necessarily reflect those of the University of Michigan Medical School or Stanford Medicine. It is released under creative commons, attribution non-commercial, non-derivative license. This podcast was produced by Dr. Lisa Meeks, Dr. Peter Poullos and Jake Feeman.

MUSIC CITATIONS: 

“Aspire” by Scott Holmes

“Donnalee” by Blue Dot Sessions

“Positive and Fun” by Scott Holmes

“Gambrel” by Blue Dot Sessions

Resources and Readings:

Jain, N.R. (2020). Negotiating the capability imperative: Enacting disability inclusion in medical education. (Doctoral thesis, University of Auckland). Available: http://hdl.handle.net/2292/53629

DisCrit (Disability Studies/Critical Race Theory)

Annamma, S. A., Connor, D., & Ferri, B. (2013). Dis/ability critical race studies (DisCrit): theorizing at the intersections of race and dis/ability. Race Ethnicity and Education, 16(1), 1–31. http://doi.org/10.1080/13613324.2012.730511

There is a fair bit of interesting work in this space, but here's one more paper on intersectionality:

Bailey, M., & Mobley, I. A. (2019). Work in the intersections: A black feminist disability framework. Gender & Society, 33(1), 19-40. doi:10.1177/0891243218801523

Crip Futurity

Kafer, A. (2013). Feminist, queer, crip. Bloomington, IN: Indiana University Press.

Crip Theory

McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York, NY: NYU Press.

Ableism

Campbell, F. K. (2009). Contours of ableism. London, UK: Routlege.

Dolmage, J.T. (2017). Academic Ableism. Ann Arbor, MI: University of Michigan Press.

"location of trouble" and other useful discussion of access to universities

Titchkosky, T. (2011). The question of access: Disability, space, meaning. Toronto, ON: University of Toronto Press.

Disability Justice:

Sins Invalid (2019) Skin, Tooth, and Bone: The Basis of our Movement is People Available: https://www.sinsinvalid.org/disability-justice-primer

Mia Mingus - access intimacy

https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/

https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/