Dignity in Disability with Tess Carichner

This episode of The Dignity Lab features an interview with Tess Carichner, a senior honors nursing student at the University of Michigan who is minoring in disability studies and global health. Tess is the founder of Disability Justice @ Michigan and lead editor of the anthology Accessing Disability Culture. Tess discusses her work in disability health equity and disability justice. She shares her personal experiences growing up in an inter-abled family and her perspective on disability as an identity. The conversation covers various aspects of disability, including visible and invisible disabilities, the importance of dignity in healthcare, and the challenges faced by the disability community.

Takeaways

• Disability is a dynamic and diverse concept that includes physical disabilities, neurodivergence, and chronic illnesses.
• Dignity in disability healthcare involves preserving autonomy, self-determination, and recognizing the importance of individuals' needs.
• Diagnostic overshadowing can lead to healthcare providers dismissing concerns of disabled patients, emphasizing the need for comprehensive primary care.
• Visible and invisible disabilities present different challenges in terms of disclosure, accommodations, and societal perceptions.
• Disability justice involves cross-disability solidarity, representation, and challenging ableist systems.
• The anthology Accessing Disability Culture provides a platform for disabled students to share their experiences and create representation.
• Intersectionality is crucial in understanding the compounded effects of multiple axes of oppression on disabled individuals.
• Non-disabled people can contribute to combating ableism by recognizing the humanity of disabled individuals and creating inclusive communities

Exploring what it means to live and lead with dignity at work, in our families, in our communities, and in the world. What is dignity? How can we honor the dignity of others? And how can we repair and reclaim our dignity after harm? Tune in to hear stories about violations of dignity and ways in which we heal, forgive, and make choices about how we show up in a chaotic and fractured world. Hosted by physician and coach Jennifer Griggs.

For more information on the podcast, please visit www.thedignitylab.com.
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For additional free resources, including the periodic table of dignity elements, please visit https://jennifergriggs.com/resources/.

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Transcript

Welcome to The Dignity Lab. My guest today is Tess Carichner. Tess is a senior honors nursing student minoring in disability studies and global health at the University of Michigan. She is the founder of Disability Justice @ Michigan, a community group dedicated to implementing disability health education, promoting disability culture, and increasing representation of disabled people in healthcare professions. 

In our conversation, we talk about the role of dignity in disability justice, visible and invisible disabilities, the importance of prioritizing the needs of people living with disability, Tess’s work as lead editor of Accessing Disability Culture, the University’s first disability culture anthology, what’s breaking her heart, and her life’s next chapter.

And I hope you’ll stay on past the credits to hear our discussion about what constitutes presidential behavior.

Just a note… in this episode, we talk about sexual violence against disabled people.

Jennifer 

Tess Carichner, welcome to the Dignity Lab.

Tess Carichner 

Thank you for having me! I'm very excited!

Jennifer 

Would you be willing to tell us your origin story?

Tess Carichner 

The work that I do is disability health equity and disability justice work mostly through my major, which is nursing, but also through arts, mostly narrative arts. I grew up in an inter-abled family. So I'm very lucky to have been introduced to disability as an identity in a really holistic way. If you aren't close to someone who's disabled or if you don't have a disability yourself, sometimes the first time people come across disability is in a medical setting context or in a negative lens, which I think does a lot of disservice to the disability community and who we are as people. 

My oldest brother has cerebral palsy, you know, we were, instead of having a babysitter when I was little, my mom just brought me to the appointments for orthotics or for physical therapy. Something that's really great where I grew up…there's a lot of disability-led initiatives. So yeah, I grew up in a world that was neutral about disability. Not everybody gets to go to my brother's orthotist as a kid, like he had survived polio. He also had like an intimate connection with disability identity. Not everybody gets that same mentorship and representation and reflection in their healthcare experience. I wanted to go into healthcare and do a good job at disability health and be informed and be a provider who is involved in the community. So that's kind of why I decided to go into nursing and why I wanted to specialize in disability health equity.

Jennifer

Before we go further, can we define “disability”?

Tess:

Disability is dynamic. It can be part of someone's life from birth. Someone can acquire disability. Disability isn't always visible. In my kind of conceptualization of disability, I definitely include things like physical disability, but also neurodivergence. So ADHD, autism, dementia, various developmental kind disabilities. I think that it is safe to say that disability has been conceptualized more broadly in recent years, which is really great because once people are able to label an experience, they're able to connect with others, they're able to access the resources they need to reach their full potential. Disability Justice is cross disability solidarity and organization.[1] [2] So while there are kind of like subgroups of disability community, there is definitely kind of like one big movement as well that benefits from many parts of the whole.

And I think it's important people get to be the experts of their own lived experience and oftentimes the legal definition of disability is very different from a medical definition, it is from a social definition.

Some people want to be recognized as chronically ill instead. I use disability as an umbrella term in that sense, there's a lot of different positionalities, just as diverse as any other social group.

Jennifer 

Words are so important in making meaning of our own experience. 

What's your relationship with dignity?

Tess Carichner 

In nursing, something that's really important is preserving people's autonomy and their choice even when there are limited options in terms of where someone is with their health status. Dignity, to me, a lot has to do with self-determination and autonomy and just having the support you need to do what you want to do and what is possible for you.

I think it's like being recognized as someone whose needs are just as important as anyone else's. There's a lot of talk, euphemistic phrases for disability language like special needs. Well, everyone has the same needs. It's kind of like the way to get to that need or if that need is prioritized in some people but not others. I think that being recognized as like someone who is deserving of having your needs fulfilled and having your potential be important, I think that is what dignity is to me.

Jennifer 

Would you be willing to talk about the ways big and small that people's dignity is violated?

Tess Carichner 

Dignity in terms of disability health, there are so many avenues where improvement needs to happen. I'm really interested in safety and a lot of people with disabilities are survivors of sexual assault or, filicide is unfortunately a really big problem in the disability community. Some of the people who are designated to be caretakers and to be the people ensuring dignity for disabled people are sometimes also the people who are most likely to perpetuate violence. Just this past summer, my main research project was about intimate partner violence in the Deaf community. There's betrayal, dignity being harmed in a lot of disabled people when not only is violence being perpetuated against them, but it's not really being asked about in medical appointments. People with disabilities are in relationships, romantic and sexual relationships. So it's important to ask about safety, just as it is with anybody else. 

And then I think it can be really frustrating when a lot of disabled people aren't listened to about their concerns with their health. There is a concept called diagnostic overshadowing, which I'm sure you're familiar with as a physician. But sometimes someone with a disability might come in and say, I'm really having this problem with anxiety, like I've been really struggling with this thing and it's just like, it's a part of your disability or someone might feel that they're having more pain than usual, but because they have a physical disability, they're just like, it's normal, when that's not necessarily true. You know, people with disabilities require primary care just like anybody else and, you know, those health concerns deserve to be taken seriously.

I think it's the reality that a lot of people don't expect disabled people to have really full, meaningful lives in the same way that non-disabled people do, which is really a shame. There are so many things happening within the disability community and disability culture that...I feel really lucky to be able to observe as a member of the disability community, but I do know that there is sort of this curtain between what people expect and what people are willing to believe and accept is happening for people. There are a lot of famous disabled people who are married and they will...you know, people will say, I feel so bad for their spouse. A person with disability could be happily married. They can be a doctor, they can be a nurse, they can do what they want to do. And in order to do that, the systems have to be equitable and accessible. What's holding people back isn't necessarily disability. It's generally people's view of disability and their expectations of disability.

Jennifer

Would you tell us a little bit about visible vs. invisible disability?

Tess Carichner 

I'm really interested in the aspect of like, you know, once you can identify with a label or with an experience, what you can connect with other people and learn from the disability community in terms of self-advocacy. And I think there are both privileges and oppressions related with visible disabilities. Oftentimes I think people with visible disabilities don't have the option so much to mask or conceal or decide whether or not they're going to disclose. I definitely know some of the people close to me who have visible disabilities, people will just come up to them and ask really personal questions because people sometimes feel invited to...really the personal experiences of someone's body mind if they can tell there's a difference from their own experience. 

So that's not something that I typically experience, which gives me a lot of peace going about my day. I am able to have a degree of control over my story that I think people with more visible disabilities don't always have. On the other end, though, people with invisible disabilities might have more trouble accessing things like accommodations. Currently, a lot of norms around accommodations are that you have to prove, which to a degree I understand, know, have to, accommodations are for people who need them. Whether that's academic programming or a physical location, I think that accommodations can be kind of an odd sort of, I don't know, like a dance to perform. Especially when you have an invisible disability and to really prove you're suffering. 

Of course, suffering is a part of every human life, but...if the only time you're really being asked about what you need and your disability is at a time where someone's like, really, you proved that you're suffering. I think that is undignified. [3] I think that that is part of why the reason why disability is viewed as such a negative aspect of the human experience. And kind of like I said before, I think that a negative aspect of the human experience is being asked to justify your needs in a way that no one else is really asking to do. 

Jennifer 

What are ways you've reclaimed your dignity?

Tess Carichner 

I've always known I'd wanted to work in disability health and growing up really well supported by the disability community. I knew that I wanted to continue having that relationship and being connected to disability culture. So pretty much from the get-go, I founded this community group called Disability Justice @ Michigan. It's mostly neurodivergent, disabled healthcare worker students who want to alter curriculum and want to kind of change the story of disability, who want to make sure there's representation of people with lived experience in those caregiving roles. 

So I think that was one way to kind of carry my dignity with me like into college. I also started working in the Digital Accessible Futures Lab, which is like a disability-led lab. While healthcare does a lot of really amazing work in disability, there's also sometimes like savior complexes and there's also like, you cannot deny that like a lot of American history in healthcare and just international healthcare history and policy has very eugenic roots. 

So I think that part of preserving my dignity and reclaiming my dignity as someone who's really passionate about disability health is kind of balancing between being in a very medicalized setting, because I believe healthcare is super important, but also recognizing that the view of disability in a solely medical model is not how the disability community gets to thrive and flourish. I think creating representation for disability narrative, getting together and watching disability history documentaries, hosting book clubs about disability health and just disability culture are life-giving experiences for me.

There's so many avenues of preserving and reclaiming dignity. I think this is probably true with any marginalized group, but there is such an effort in the disability community, across disability solidarity, to make sure that others are included. Because if you've been excluded before for...maybe you can't access something without accommodations and instead of getting accommodations made you're just left in the dust. Including other people and relating that experience, which can sometimes be an invisible experience, is very exciting. When it's community based there's a lot of collective joy in it.

Jennifer: I’d love to hear more about how you came to create the anthology, Accessing Disability Culture.

Tess Carichner 

My freshman year, I read this amazing book put together by the Autistic Self-Advocacy Network. It's called Loud Hands, Autistic People Speaking[4] . 

If you aren't kind of born into a family that really talks about stuff like this or if you don't find mentorship early on, you can really not realize there are people just like you who are meeting down the hall. 

Or I realized I had a friend who had to apply for accommodations, and she really didn't know how to do that, which is fine. If it's the first time you're doing that, it's not something they teach you to do in school. But knowing people she can talk to, that was really helpful for her. Even just knowing someone who has the same diagnosis as you and figuring out where do they find community. So I asked my lab, the Digital Accessible Futures Lab, if they would be interested in making an anthology, but students at the university. And we wanted to keep it really open because, like I said, the disability community is really diverse. 

Also, a lot of people are coming to realize their disability identity around early 20s. A lot of people might be getting learning disability accommodations for the first time. Or people might be having like their first chronic illness flares in college. So we kept it really open and I wanted to keep it visual art, but also writing and poetry or long form narrative fiction, stuff like that. And we just kind of put it into the hands of the students and see what people returned. And it was amazing. I met so many amazing people who were in med school, who were at Stamps you know our art school, people who were getting their PhDs all the way to freshmen who were you know just saw this kind of posted on a wall outside their dorm and it came together to be this really beautiful like documentation, not only of like proof that we're here and proof that we're doing okay, but also proof that, you know, things could be better. It's super exciting. 

So it is something that is completely digital right now, although we're looking into creating a physical version of the collection. I really, originally this was for students so that they can be seen and to...find representation reading the stories of disabled students who came before them. But I think there's also a lot to learn if you aren't familiar with disability culture and you want to know or you have a friend who has told you that you know they're finding it difficult to find people or organizations that reflect their experiences and it's like this will now always be there, if not just like a testament to our existence, but also kind of resistance to institutional ableism and kind of a snapshot of like, how are things right now? Where are we? What are we up to?

The University of Michigan Initiative for Disability Studies, UMInDS, helped fund the project through a grant, so we were able to pay each student $100 for their contribution, which is also really important. You're asking someone about a personal experience and like they're providing art and providing a really rich documentation of something that a lot of people don't even notice. 

Jennifer (55:48.276)

It sounds like you're making good trouble.

Tess Carichner (55:55.009)

Thank you! That's such a compliment.

Jennifer (31:40.682)

What do you think your next chapter is going to be?

Tess Carichner (31:52.064)

I want to continue with narrative medicine and ways of communicating the humanity of people who are involved in the healthcare system, whether that's people who are working or people who are working behind the scenes, people who are receiving care. So I want to continue that on and go to grad school and become like a primary care provider. There's a lot of really unfortunate data. It's like recently in the past five years been published about people with disabilities trying to go in and get care and being turned away, being told that like, don't know enough about your condition, we weren't taught about that know, your appointment would take too long or whatever and like I want to be a provider who's very prepared and ready and also like excited like I'm excited to hear about your life and your experience with disability culture and I think that inherently when you're disabled and living in a very ableist world like the ways that people create joy and create access and work towards collective liberation. 

There are so many large institutional things to be upset by, but there's also a lot of small wins and a lot of really determined people who I think are making big waves.

Jennifer

What is breaking your heart?

Tess Carichner 

I've been doing a lot of kind of like learning and research related to like sexual violence. 

There's just a lot of the horrible things that people do to each other and kind of the lack of humanity that, not recognizing your own humanity and others in your own, leads to a lot of really terrible things in the world. And then things like natural disasters, war, sexual violence, like all of those things impact people with disabilities even more because even before that violence occurs there's already like an uneven playing field.  I think that that is very hard to watch as like, healthcare is sometimes used as a weapon against people instead of for good 

Jennifer 

Could you talk for a moment about people who live with multiple and overlapping axes of oppression?

Tess Carichner 

A lot of oppressions, I think, are coming from the same root of white supremacy. And oftentimes, when people have one oppression against them, there are multiple things like disability and income, disability and educational attainment, disability and even just getting to make your own decisions about what you do with your time. People who are institutionalized often don't even get the choice of that. All of these things have, I think, tremendous degree of overlap. I think that referring to people with that lived experience is really important. I'm definitely interested in studying and learning about it, but just understanding what it's like for me as a white disabled person as opposed to somebody who is indigenous and disabled and how that really compounds like a relationship with the healthcare system, because not only is there historical violence against people with disabilities, there's a lot of historical violence against indigenous people. I think that one thing I really love about the Disability Justice Movement, which is a reaction to the Disability Rights Movement, is that it is led by like queer, trans, people of color, and it really prioritizes leadership of those most oppressed, and yeah, there are things that without the lived experience and understanding, I think it's really hard to truly account for those things alone. And so then to add on class oppression and racial oppression and American exceptionalism and topics like that can seem like, my gosh, can't do all of that at once. It's like, well, that creates a new sort of marginalization within the disability community if we don't.

Jennifer

Is there something you think that non-disabled people should take away from our conversation?

Tess Carichner

I think in whatever position you are in, you can use your skills to combat ableism wherever you are. And combating ableism, combating any sort of oppression, is inherently recognizing the humanity of other people in your community.

And whether you see it or not, disabled people are in your community. If they're not in your community, you're not in an inclusive community, and you can change that and that can be part of dignity. I really do believe like everybody has a gift or like a passion or a tool that can be used to be really helpful to establish a more anti-ableist future.

Jennifer 

Tess Carichner, thank you so much for being on the Dignity Lab today.

Tess Carichner 

Thank you so much.

Outro

Easter Egg

Jennifer 

Talking about white supremacy makes me think about Donald Trump and the way he mocks people with disabilities and people who've been injured in war and says they're losers. And that my hypothesis is he's terrified of his own death and his own frailty.

Tess Carichner 

I mean, ageism and ableism are best friends. There's a lot of like marketing and a lot of business around like staying young, but there's this one kind of line that I've heard a lot of disability justice and disability rights advocates use to kind of convince non-disabled people to get invested in disability now is because if you live long enough, you will become disabled and that is just like a part of life. Your hair will turn gray. It's also probably likely that you'll experience disability. And I think that when disability is, you know, affiliated with weakness or moral failure or just kind of not being able to like, pick yourself up by your bootstraps. That is what happens. So yeah, think, I mean, it was very interesting in the beginning of the Biden presidency, like a long time ago, my dad and both my brothers have stutters. So it was really interesting to see people talking about his stutter as being like a problem or like a lack of professionalism. And then to see Donald Trump, mimicking the disabled journalist who asked him a question. It really sends a message about, who is presentable, who is professional, who's presidential., I think disability can 100 % be presidential, but hate and mocking and ableism and othering a fourth of the population, or othering a fifth of the population, that is not presidential to me.

is it possible that the automatic transcription didn't pickup on the end of this sentence?

or perhaps I just didn't finish the whole thought here! totally possible as well!

Pull quote

@vclinton@med.umich.edu 
For resources, this book
Bascom, J. (Ed.). (2012). Loud Hands: Autistic People, Speaking. Washington, DC: The Autistic Press