Disability Culture at U of M

Disability Culture @ U-M was one of the first organizations to inspire this blog. Prior to attending some of the meetings of Disability Culture @ U-M, I had no clue that there was a culture associated with disability. Now, rounding out the summer, I finally have the opportunity to interview and discuss with Ashley Wiseman about Disability Culture @ U-M. Check out our interview on the Milk and Doorbells Youtube Channel!

Questions

What is Disability Culture @ U-M and what does the group mean to you?

We are a group of staff, faculty, and students who initially came together over a shared interest in starting a Disability Cultural Center at the University of Michigan. This would be similar to other identity-affirming units on campus, such as Trotter or the Spectrum Center, with a focus on intersectional disability communities. Basically, we see a need for spaces where disability can be understood as another marker of diversity, identity, and valuable perspectives. Currently, the main unit for disabled people (this is my preferred terminology, although others prefer "people with disabilities") is focused on providing classroom accommodations for students. But there's so much more to the disability experience, and we need a place where we – all of us, not just students – can connect, build community, and work toward an understanding of inclusion that goes beyond accommodations.

By saying "disability culture," I think we are – or at least, I am – trying to reflect that disability is a complex, multifaceted way of life rather. Certainly, there is no one disability culture. No culture or identity group is monolithic or static, and all cultures are amorphous with blurred boundaries, multiple intersections, subgroups, variations, and movement. Yet, in the midst of all this complexity, there are enough shared experiences to distinguish the disability community.

For me, this group has been life-changing. We've been able to combine our voices to advocate, we help each other learn and grow, and I've become close friends with people in the group. Even though we don't all have the same disabilities, I feel understood and like I don't have to worry about disability stigma. I can authentically express my needs. This is something Mia Mungus calls "access intimacy," which she describes as "that elusive, hard to describe the feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a pure access "level." It's beautiful.

How does Disability Culture @ U-M define disability differently than most?

It depends on what you mean by most! :-) In general, most people define disability as something "wrong" with the body. Disability is considered an unfortunate problem in the individual that one should try to overcome. I don't know that I would be able to give a specific definition, especially because my views are constantly evolving as I learn more from others in the community, but I take my cues from disabled scholars and activists that came long before me. They realized that disability is far more complicated than "something wrong with the body." In fact, it is natural to have variations in human body-minds – a term many activists use to point out that the body and mind are not separate but intertwined. It's okay that we can't all do the same things. Instead of there being something wrong with individuals, the problem is with society's beliefs, attitudes, institutions, and our built environments that were made for only certain kinds of people. This understanding of disability is called the "social model."

Another principle that has greatly influenced my definition is "disability justice," which understands disability as one of multiple forms of oppression that all interlock and reinforce each other. Disability is often subtly or explicitly invoked to marginalize lots of groups. For example, bogus "race science" was used to justify colonialism by saying that white people were the most mentally "able." Patriarchy thrives on the idea that women are physically weak and irrationally emotional and that LGBTQ people can be "corrected" through conversion "therapy." All of these perceived deficits are rooted in the body. Classism is supported by underlying and often unconscious beliefs that poor people are lazy, less intelligent, and so on and that these traits are at least somewhat biologically inherited.

Disability justice is often used interchangeably with disability rights, but they are quite different. The disability justice movement has its roots in disabled, queer communities of color and calls for more systemic changes than the disability rights movement, which is largely aimed toward legislative changes that primarily benefit white disabled communities.

What does it mean for disability to be ‘culturally constructed?

Culture is the source of our assumptions and beliefs. It teaches us what to consider "normal" through our education systems, traditions, media, language, the expectations we have for ourselves and others, and so much more. In most dominant cultures throughout the world, certain body-minds are considered abnormal, incapable, and dispensable. They are stigmatized, segregated from mainstream society, and their contributions devalued or prevented. For example, just about everyone in the United States has used a curb cut, that ramp at the corner of sidewalks used to cross streets. Those exist because, back when wheelchair users literally couldn't cross the street, disability activists carved them with chisels and hammers in the middle of the night as an act of protest and demanded that curb cuts be legally mandated. Now, they are a part of everyday life and they benefit more people than only wheelchair users. Yet, the US public education system doesn't teach about disability rights or disability justice movements, despite how these movements influenced everyday life and continue to do so. This both reflects and perpetuates the cultural minimization of disability experiences. If this history was taught to everyone, it would have a huge influence on how we think about disability and disabled people.

Language is another good example. Our words are infused with history, beliefs, and assumptions. Consider common English phrases such as "the blind leading the blind" or "look me in the eye and tell me the truth." The meaning of the first example – that neither party knows what they're doing – depends on a culturally constructed, shared understanding that blind people can't navigate spaces, even though they do so all the time. If the space is unfamiliar and inaccessible (i.e., no braille signage or audible wayfinding) it can be more difficult, sure. But this says less about blind people's capabilities and more about whether anyone considered blind people's needs when they built the building. The second phrase is also riddled with cultural assumptions and expectations about eye contact behavior. In dominant Western culture, eye contact means respect and, by extension, honesty. In East Asian cultures, avoiding eye contact shows respect. For autistic people, eye contact can feel incredibly intimate or overwhelming, so in autistic culture there is often a shared understanding that eye contact behavior says very little about your relationship. There's nothing inherently right or wrong about using eye contact to communicate, but the meaning we ascribe to it, how we interpret it, and how we label people whose communication differs – all of this is culturally constructed.

Saying disability is culturally constructed doesn't deny the differences in our bodies. But, how those differences are perceived and experienced depends a great deal on culture.

Why is Disability Culture @ U-M important in the framework of higher education?

I believe that disability cultural groups, or those with a similar approach, can help shift campus culture toward more complex, inclusive understandings of what disability is. Disabled people need the opportunity to come together, support one another, learn about each other's experiences, and advocate for our needs. We are powerful on our own, but when we don't know each other, that power is dispersed and it becomes difficult to get our message across. Groups like DCUM help disabled people organize and communicate. They also help us find the validation and emotional support we need to keep going.

As a disabled person and someone who works in higher education, I know a lot of higher education administrators want to help, whether they experience disability themselves or not. They want the campus to be a welcoming, inclusive place. This requires listening to disabled people themselves, and groups like DCUM help administrators connect with, listen to, and advocate alongside disabled people.

What is ableism? How does ableism influence disability culture?

There is a lot of incredible scholarship on both of these questions, so I will just briefly summarize my own understanding and views. In its simplest definition, ableism is the oppression of disabled people. It is a history of systemic stigmatization, exclusion, violence, discrimination, and disenfranchisement of people with certain body-minds at all levels of a given society or culture.

But ableism informs and reinforces other forms of oppression, so is it only the oppression of disabled people? Talila "TL" Lewis has this working definition of ableism: "A system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, misogyny, colonialism, imperialism, and capitalism. This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s language, appearance, religion, and/or their ability to satisfactorily [re]produce, excel, and "behave." You do not have to be disabled to experience ableism." This most closely aligns with my understanding of what ableism is.

Ableism influences the extent to which disability culture is valued within a given dominant culture. Even in a utopia that is free from ableism, fully integrated, and accessible, I think disabled people would still have distinct histories, experiences, perspectives, norms, etc. But, absent ableism, these would be valued rather than marginalized.

Why is it important to differentiate between Disability Service Offices (DSOs) and Disability Culture Centers (DCCs) on college campuses?

It's important to remember that DSOs are primarily compliance units. They exist to make sure the institution is compliant with the Americans with Disabilities Act (ADA) and provides reasonable accommodations to students who need them. Some DSOs go above and beyond this mandate, and it varies widely across institutions. But, they are not charged with building community or addressing systemic ableism as a DSO would be. A DSO is to disabled people as the Title IX unit is to women; a DCC is to disabled people as the women's center is to women.

How has the COVID-19 pandemic impacted your disability activism?

The pandemic has had a huge impact on my activism. I'm a wheelchair user and I hire personal care assistants (PCAs) to help me with my daily needs. I also have decreased lung capacity and would be at risk of critical illness if I became infected. My personal care requires a lot of close contacts, so when the pandemic reached Michigan, I was terrified. Most of my staff lived in communal housing and were either unable or unwilling to practice social distancing. So, I had to reduce my team from 8 to 2 people and rely on my partner, friends, and family. Remember, at this time the CDC was advising against wearing masks. Hospitals were rationing ventilators based on disability. We knew Covid was highly contagious but did not have a lot of the information we have now. I've never felt so vulnerable and in crisis. I had to drop a lot of responsibilities in order to focus on my own care and, frankly, survival. It felt like I had less capacity when I was most needed.

And yet, this was also a period of intense disability justice activism, on campus and more broadly. The pandemic exposed multiple ways that our world is ableist, racist, classist, etc. Working-class disabled people around the world have had far fewer opportunities to protect themselves. And because people of color are disproportionately working-class, this meant disabled people of color were especially at risk. Disabled people, and especially working disabled people of color, are also more likely to be incarcerated and/or living in congregated communities that were disproportionately impacted. And to be clear, when I say "disabled people" I'm speaking in my own terms, but a lot of people with health conditions that put them at risk to Covid-19 don't necessarily identify as having a disability (e.g., people with asthma, cancer, diabetes, and high blood pressure).

Within the activist spaces that I am part of, including DCUM, we quickly shifted our focus to checking in on and supporting one another. Our meetings became weekly instead of biweekly and we mostly just processed together and validated each other. Our activism centered on sharing information, drafting letters and petitions calling for a fall reopening plan that considered the safety needs of the most marginalized, and supporting campus labor movements among employees who were scared about being exposed to the virus, whether they were disabled or not. A lot of people were also worried about infecting immunocompromised or otherwise at-risk loved ones that they lived with or cared for.

On the flip side, some disabled people all of a sudden had access to resources and opportunities they'd been requesting for years. For example, videoconferencing or streaming events can be more accessible for people who face transportation barriers or who have conditions that make it difficult to leave home sometimes, such as chronic illness or social anxieties. But it's complicated because sometimes we don't all have the same access needs. For example, some folks with ADHD find online learning easier to concentrate whereas others find it more difficult. Some D/deaf and hard of hearing folks had increased access to captioning and ASL in the virtual environment but have difficulty lipreading when people are wearing face coverings. So, my activism has focused on 1) safety for those most vulnerable, 2) making sure the "new" ways of doing things during the pandemic were as accessible as possible and Type 3) laying the groundwork to maintain the things that improved access now that they have become more common. While it may feel like things are back to normal, for a lot of disabled people and/or people who are at risk this fall is looking pretty scary. Are we going to lose our access gains? Will we be able to prioritize our health and safety or be forced to return to "normal"? This is a big priority for the disabled people on campus I work with right now.

Bio of Ashley Wiseman

Ashley Wiseman is a social justice educator at the University of Michigan whose work centers on developing undergraduate students' intercultural leadership skills. She is the Associate Director of the U-M Global Scholars Program (GSP) and holds a lecturer position, instructing leadership courses each term. Additionally, Ashley is dedicated to advancing intersectional disability justice on campus. She is a power wheelchair user with a service dog sidekick, a golden retriever named Reason. She co-chairs Disability Culture at U-M and serves on the Council for Disability Concerns Advisory Group. She was an active member of the award-winning Student Inclusion, Diversity, Equity, and Accessibility (IDEA) Board and received a National Center for Institutional Diversity (NCID) grant to help develop the Mapping Disability Knowledge Community, an online database of people working toward disability inclusion at the University of Michigan. Ashley appreciates good video games, bad jokes, and great coffee.