What is Disability Culture?

“People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.” (Brown, 2001)

What is disability culture? In disability studies and disability activism, there are countless definitions and descriptions. It’s art! It’s performance! It’s literature! It’s community! It’s here! It’s online! It’s everywhere! Dr. Steven E. Brown describes the common bonds that bring disabled people together to share in culture and the pride and expression that generates cultural artifacts.

To me, disability culture means that disabled people are creating, being, doing from a place of disability. It is a celebration of disabled brilliance, wisdom, kinship, and innovation. It is the memory of disabled pasts and the promise of disabled futures. Disability culture centers disability identity as social, political, and meaningful – disabled ontologies and epistemologies are valuable!

Disability cultural centers on campuses are sites of reckoning with the ableism, exclusion, and violence that disabled people have faced in education. They present an opportunity for disabled people – including students, staff, faculty, and community members- to engage with the college or university in disabled ways  and explore disability identity without shame or judgment. DCCs are transformative; my experiences with disability culture and community in undergrad and grad school have wholly shaped who I am, my passion, my politics, and how I show up in my disabled bodymind in the world. Disability cultural centers are often limited by institutional systems and policies, but nevertheless offer space for disabled people to exist within – and occasionally, to rebel against – the institution. bell hooks (1994)  wrote, “The classroom remains the most radical space of possibility in academia,” and DCCs embrace this call by educating students and community members on disability culture and allowing all to experiment with disabled ontologies.

I am honored to be starting as the Program Coordinator for the new Disability Cultural Center at the University of Wisconsin-Madison! Disabled students advocated for and won this campus center, and I am looking forward to creating space where they can be whole, complicated, disabled people and we can all strive for anti-ableism and disability justice. I am calling upon my disabled kin, my beloved community, to connect with me and allow us to celebrate you – your scholarly and creative projects, your journey to disability identity, and your fight for disability justice that uplifts all disabled people and acknowledges that systems built on oppression must fall. You can contact me at helen.rottier@wisc.edu, and I am happy to feature you or consult with you.

“Disabled people are increasingly more confident and proud of themselves through the development of disability culture. Disabled people are not victims. Disabled people have chosen to be agents of change.” (Brown, 2002)

Envisioning a Pedagogy of Wholeness: Teaching, Disability Justice, and Care

During a truly brilliant teaching workshop today through CIRTL@UIC, I realized that an introduction to my pedagogy could be a valuable blog post, especially as I grow as an educator and enter the academic job market. I’ve received feedback from faculty that hearing me describe my fledgling pedagogy has given them vocabulary for ideas that are already implementing in their classrooms and even profoundly moved them (humblebrag). I want to share what little I know with current and future educators in the hopes that more people will have the capacity to create classroom spaces safe and inclusive to disabled students, even as we know that education as an institution is inherently and intentionally ableist. (In response to this point, I am reminded that we must simultaneously radically reimagine academia and the education system and make changes within academia that allow for more disabled students and scholars to join our fight.)

If you know me, you know that my work is focused on higher education and transition. I teach some high school students, mostly about how to navigate college, and many undergraduate students. However, I believe that much of my pedagogy could be adapted to educate students of all ages. Likewise, my focus is on disabled students, and especially autistic and neurodivergent students, but these suggestions can benefit students from other backgrounds as well.

I started thinking critically and concretely about my pedagogy last year as a Digital Pedagogy Lab Fellow. DPL 2021 was such an amazing experience that I immediately registered for DPL 2022, and I look forward to more insightful, collaborative work to sharpen our pedagogical lenses. As an introduction, we had to choose six words that described our pedagogy; mine were: disability/justice, epistemology, embodiment, community, care. Several months later, I was part of a teaching statement workshop for graduate students where we used generative knowledge interviewing to identify our pedagogies. GKI is a process wherein others ask questions and summarize your responses to indicate your values, in this case values related to teaching. My group members described my pedagogy as centered on recognizing the wholeness of every student, as well as invoking action and activism, building futures, and driven by my own passion for disability justice and disabled epistemologies. Both exercises were useful, though unsurprising, in understanding what I value as an educator. With these values in mind, I would like to offer some teaching strategies that have worked well for me and my students, strategies which go beyond universal design principles you may already know.

1. Start by trusting students. Our students are whole people with whole, complicated lives. Trust that they are prioritizing the class appropriately and do not demand their excuses or explanations. This should be obvious, but there are still horror stories about professors requiring proof of hospitalization or the death of a loved one. When a student discloses that they are struggling with external (to school) challenges, we can and should respond with kindness and when they do not disclose, we can reach out with general well wishes and ask how we can help them succeed in the course. Some students may need or want more accountability from their instructor. Trust them also to ask for that support when they begin to trust you. If you are an instructor that students trust to care, they will be more willing to get necessary support. And students talk! If you are a caring instructor, students will tell their friends, tell their classmates, and maybe tell RateMyProfessor.com (Is that still something students do?).
2. Default to high expectations, high support for every student. This is advice I usually give to counter the low expectations instructors place upon students who disclose their disability status, but it should be true for every student. High expectations means we intend to challenge this student and expect them to succeed and grow through these challenges. High support means we offer the most help we can offer (within our capacity). This may look like reviewing drafts of assignments and offering feedback, talking through new concepts multiple times, or sending frequent reminders at the beginning of (and maybe throughout) the semester. As we learn who our students are and what they need, we can adjust the level of support we are providing to them. Some students may need more or less support than others and that’s okay! Some students may need more support at different times in the semester and that’s okay!
3. Grades are an (un)necessary evil. Our institutions and departments probably require us to submit some kind of grade for each student, and may even ask us to “prove” that students obtained that grade (so you cannot give all As and invest in actual learning, unfortunately). Join the educators calling for ungrading, and in the meantime, try subtractive grading and generously interpreting rubrics. Other people have explained subtractive grading better than I can, but simply, imagine every student as starting with full points and subtract points for missing or inaccurate content. (This is easier with some subjects and assessments than others.) Do not compare students’ assignments against one another! And generously interpreting rubrics means taking time to look for evidence that the student is learning and demonstrating knowledge, even when it is subtle. In online discussion boards for the class I TA, we ask students to respond to a classmate and “include a question or connection.” I’ve learned to look for what students interpret as a connection, rather than what I think a connection should always, rigidly be. (Giving clear and explicit instructions and expectations is also key!)
4. Be flexible! Collective access (one of the ten principles of disability justice from Sins Invalid) is all about exploring and experimenting with what circumstances will allow everyone to participate equitably, and requires flexibility to make changes when something we did not anticipate occurs. Building flexibility into your course is one of the best gifts you can give your self and your students. Maybe you allow students to drop an assignment or two (or five) in the week of their choosing. Maybe you have a clear and generous extension or late work policy. Maybe you decide to cancel a whole week of content and assessments when you and your students feel overwhelmed (by school and work, by the ongoing pandemic, by the state of the world, whatever).
5. Finally, infuse action and activism into your course. How do your course and the assignments therein prepare students for life outside the academy? How can you use your course to make the world a better place? Some instructors assign writing letters to representatives about an issue related to course content or the students’ interests and values. Others assign a reflection on a community event focused on a specific topic. Getting students involved and allowing them to demonstrate what they already know and value is engaging and comes back to recognizing students as whole people.

These are early thoughts from a young educator who has been a disabled student for most of her life and cares deeply about increasing access to education and knowledge production. I am indebted to so many teachers, professors, and mentors in my life who have demonstrated how to be a compassionate educator. I would love to hear your thoughts in comments or via email at hrotti2@uic.edu.

Museums for All! Curating an Accessible Experience

Thanks to MCA for inspiring this blog post and for your work towards accessible experiences for diverse patrons!

On Sunday, June 27, 2021 my partner and I attended the Sensory-Friendly Morning at the Museum of Contemporary Art in Chicago. The event was designed to allow neurodivergent patrons to experience art in an accessible environment, away from the crowds that typically occupy the busy museum, with dimmed lights, lowered audio exhibits, and other considerations to make the space and event accessible. I was thrilled by the opportunity to visit the museum and see the Chicago Comics exhibit curated for the MCA. This blog post will highlight accessibility features that museums can implement for everyday and special events, as well as tips for neurodivergent patrons to prepare for a museum visit.

Tips for Everyday Accessibility

1. Designate one or more spaces in the museum as a quiet/sensory recovery space for patrons who may need a break from the crowds, lights, and noise. Consult with neurodivergent people to ensure this space is actually accessible- we may be able to hear an appliance or see a flickering light that others cannot detect. The MCA had a designated quiet space, but also had a patio and several spaces to sit and wait for the rest of your group to finish looking at an exhibit if you needed a break. In most places, you could also sit and contemplate the art nearby!
2. Create a social story or other resource to set expectations for visitors. A social story helps neurodivergent patrons know what to expect when they visit and reduces anxiety about new or unknown experiences. Use plain language and outline important rules, such as a reminder not to touch the art in the museum. You can view MCA’s social story as an example.
3. Create clear wayfinding processes such as maps or physical markers. There were arrows on the floor at MCA to promote social distancing, but I actually found them useful as an accessibility tool to remove ambiguity about how I should move through the space. Staff also gave clear directions, including how to move through the museum using elevators if needed, when we arrived.
4. Train staff to treat all guests with respect. You can’t tell if someone has a disability that impacts their ability to navigate through the museum. Treating all guests with competence and dignity helps create an accessible and welcoming museum experience.

Even with everyday accessibility measures in place, crowded museums can be challenging for some neurodivergent patrons. Reduced capacity, increased accessibility events allow people who are usually excluded to experience arts and culture at your museum.

Tips for Event Accessibility

1. Hold reduced capacity events during or outside of regular museum hours. Hold events regularly- Sensory-Friendly Morning takes place quarterly at MCA- and invite local disability organizations to attend.
2. Dim lights and lower audio on exhibits with music or narration.
3. If possible, make increased accessibility events free, by donation, or reduced cost to alleviate financial inaccessibility. Ensure the registration and ticketing process is clear and accessible as well!

Finally, neurodivergent patrons can implement the following strategies to improve their museum experience!

Tips for Neurodivergent People Visiting Museums

1. Bring (and use) sunglasses, headphones, fidgets, and other sensory accessibility aids that will make you more comfortable. Bonus: plan out a script in case you are approached, such as, “I am wearing sunglasses to improve my experience because I don’t like bright lights.”
2. Plan ahead. You can usually look up maps and information about various exhibits online, and I like to plan my route through the museum starting with what I am most eager to see, when I will have the most energy.
3. Attend with someone who knows how best to support you. I went to the MCA with my partner, who knew what signs may indicate I was tired, hungry, or needed a break. He was flexible about letting me go ahead and take breaks while he explored the exhibits and leaving when I was out of spoons.
4. Advocate for yourself! If needed, you can disclose to museum staff that you are disabled and may need additional directions, support, or access to a quiet space to take a break. You deserve to experience arts, science, and culture in a safe and accessible way!

Everyone should have access to museums, to experience the world around us and learn new things. Thank you to MCA for developing the Sensory-Friendly Morning. I hope the event inspires other museums in Chicago and around the world to embrace everyday access and develop events for disabled patrons.

Our Existence Is Resistance: Autistic Academics in an Anti-Autistic Academy

Check out my new essay for Anti-Ableist Composition. Huge thanks to curator Cody Jackson for giving me space to share this piece based on my presentation at the 2020 SDS@OSU@Zoom conference!

Slow and Steady: Resisting Toxic Productivity and Productivity Porn

Why do we write like we’re running out of time?

Amid the COVID-19 pandemic, when many professionals and academics are working from home, I want to address the phenomenon of toxic productivity and productivity porn. Toxic productivity is the culture of endless labor that pervades workplaces and academia. Productivity porn is the social media spectacle we create to prove our fitness in a system that demands we never stop working and more importantly, never stop producing; when you brag about the number of hours you’ve worked, the words you’ve written, or your publication stats, that’s productivity porn. Toxic productivity is embedded in academic attitudes and policies, especially time-to-degree and tenure clock policies that continue to decrease while expectations- of journal articles, conference presentations, monographs, and other producible labor- increase.

Like most academic policies, the students and scholars most impacted are the most marginalized: people of color, poor students and contingent faculty, people with caregiving responsibilities, and disabled/chronically ill people. Disabled/chronically ill scholars are particularly vulnerable to “failing” toxic productivity requirements due to increased time spent in waiting rooms and doctor’s offices, working with personal care attendants and therapists, resting, recovering, and contending with academic ableism. Crip time, the notion that disability exists around, against, and out of time, reveals the ways time fails disabled bodies and disabled bodies fail time. In her article Six Ways of Looking At Crip Time, Ellen Samuels addresses crip time as non-normative time in the context of work, writing, and rest. Even while writing this post, I experienced lapses in productivity due to pain, brain fog, and anxiety around the impact of COVID-19 on the disability community.

I’ve heard from numerous students, both disabled and nondisabled, that they have felt pressure to increase their productivity during the self-isolation and social distancing in response to COVID-19. Some professors and advisors view this time as free for reading, writing, and research, despite the chaos and uncertainty. The move to work from home has also increased productivity porn among those who want evidence that they can continue to work, even under dire circumstances. I too have been guilty of (over)sharing about work and labor to maintain a sense of normalcy and to celebrate work victories. Yet productivity porn rarely makes anyone feel better; rather, it perpetuates the cycle of endless labor that leaves so many critical scholars- and their knowledge- behind.

Rather than continue to produce, academics and other professionals can use this time to experiment with the slow professor movement, theorized by Maggie Berg and Barbara Seeber. Slow professoring is meant to resist toxic productivity and the demands of the institution, especially on women of color and other marginalized faculty who are asked to perform emotional labor as mentors and role models in addition to intellectual labor. Slow professoring is a strategy to reclaim one’s work and time and avoid burnout. In Towards A Crip-Of-Color Critique, Jina B. Kim explains that slow professoring is “a refusal to equate productivity and work with one’s life’s worth.” Travis Chi Wing Lau expands Kim’s argument in Disability and the University, arguing that crip slow scholarship is critical to the future of an equitable academe. Crip slow scholarship is a disability justice imperative.

How can you practice crip/slow scholarship in your own work? How can you take time to breathe, to rest, to care and make your working hours more effective and deliberate? I’m trying to listen to my bodymind while I’m working and stop when I feel myself getting overwhelmed. I’m turning off my computer in the evenings and trying (and failing) to stop checking email constantly. I encourage you to try to slow your work pace and work more consciously, with regard for your well-being and care for others during this difficult time.

#ACI2019 Views From Under the Table: Autistic Space, Access Intimacy, and Participation

In June I was thrilled to attend the Autistic Self Advocacy Network (ASAN) Autism Campus Inclusion (ACI) program, and I’ll be sharing my reflections in a series of blog posts. This post is about access intimacy and existing in autistic space.

Autistic space is, simply, space that allows for and centers autistic existence, and is shaped by specific expectations rather than unspoken NT social norms. Autistic space is radical, liberatory, and nonjudgmental. It resists the default to NT needs and preferences that alienate autistics and complicate social interactions. It is a place to be as we are. From the earliest days, autistic space has been central to the formation of autistic community. Early community leaders likened the feeling to meeting people from the same planet, speaking the same language, and feeling normal for the first time.

ACI was my first experience in autistic space, or even with more than two other autistic people aside from my student group, in which I am still cultivating autistic space. I was excited and nervous and felt like an imposter, but hoped that being in autistic space would affirm (or deny) my autistic identity. Surely, in a group of other autistic people, in autistic space, I would get a sense of whether I belonged.

The staff explained and modeled autistic space from the onset. It was awkward at first, but we quickly settled into what autistic space meant for each of us. Some stimmed more openly and freely, some of us texted rather than talking, no one made judgments about samefood or comfort items or quirks, and we all made use of the color communication badges. As the week went on, I felt more comfortable in the space and experienced relief at not constantly masking or explaining my needs. In fact, we would often begin explanations- for why we needed or preferred something a certain way- only to be met with a chorus of understanding.

The feeling of access intimacy- this familiar, unspoken understanding- has been theorized by Mia Mingus. Access intimacy is what happens when someone “gets” your access needs without explanation or challenge or shame; it is indescribable but utterly recognizable. We can develop access intimacy with people we are close to or people who are like us and have similar, or even conflicting, needs. Access intimacy is a source of support and strength in our collective and interdependent disability experience.

Even when ACI was focused on learning, lecturing, and preparing to meet our advocacy goals, the rules of autistic space held true. People were allowed to come and go as needed, and everyone participated to their level of comfort and while meeting their needs. As an academic, I have experience with seemingly endless days of conferencing, even though they are often inaccessible and result in burnout and fatigue. I was going strong and inadvertently masking through sessions for most of the week, but on Thursday, I reached my limit. I was exhausted, but didn’t want to miss an exciting presentation on disability justice. The solution? Listen to the presentation from underneath the conference table. Under the table I could still hear the presentation, but wasn’t worried about looking engaged or contributing to the discussion. It was dark under the tablecloth and quieter than seated at the table, and in autistic space, no one questioned why I was under the table- they simply checked in to see if I needed anything.

No one *likes* sitting in large presentations for 12+ hours each day.

When unconventional participation is allowed and encouraged, participants can engage in more meaningful ways and get more out of their experiences without exhausting themselves. It is a step towards making our spaces more accessible and inclusive and caring for participants as people, separate from their labor and attendance and engagement. Building rest into our academic and professional events introduces a radical shift to academic and professional culture, which is dominated by the absence of rest in the presence of constant labor.

How can we reimagine conferencing to be inclusive and accessible to people with disabilities? How can we dream towards an academic culture of access intimacy and equitable, restful, and meaningful participation?

#ACI2019: Making Advocacy Accessible

In June I was thrilled to attend the Autistic Self Advocacy Network (ASAN) Autism Campus Inclusion (ACI) program, and I’ll be sharing my reflections in a series of blog posts. This post is about the inaccessible world of legislative advocacy, and the ways that disabled activists are fighting for change. 

ACI brings autistic students to Washington DC to learn about creating and coordinating student advocacy efforts on campus. The program culminates in Hill Day, when students meet with their representatives’ offices and advocate for disability policies. Students entered the program with varying degrees of policy knowledge and advocacy experience. During the week, ASAN Director of Public Policy Sam Crane and Associate Director of Advocacy and Development Reid Caplan led an incredible crash course in disability policy and legislative advocacy. While I’ve learned these skills and policies in other settings, it was invigorating to work alongside other autistic students and activists. We shared in our frustrations and fears surrounding advocacy, our dreams for disability futures, and our excitement and apprehension building towards the end of the week.

Legislative advocacy is hard, and not inherently accessible. Understanding bills, laws, and policies is important, but the lack of easy read and plain language resources excludes people with intellectual and cognitive disabilities. Advocacy is also restricted to by class and education barriers, which are intertwined with disability. Traditional advocacy requires advocates to travel to Washington DC or to local and state offices in person, during business hours, to share their concerns verbally, and to adhere to certain, (often unspoken) rules of professionalism. Multimodal, asynchronous advocacy using mail, telephone, and online communication makes space for more advocate voices, but fails to account for the burden of information. Advocacy work requires advocates to know and employ information and strategies that we are rarely taught or taught informally by working with other advocates. Programs like LEND, ACI, and Partners in Policymaking are focused on equipping advocates with these strategies. Still, these programs reach a finite number of advocates, often run for a limited time period, and realistically cannot fully prepare advocates for the ever-changing political landscape. I’ve been fortunate to participate in LEND, ACI, and graduate level disability policy courses and I still feel nervous and sometimes unprepared when trying to advocate for myself and my community. Standing up for your rights is nerve-wracking and utterly essential, especially for autistic communities, who are mistakenly thought to be incapable of advocacy.  

How do we continue to equip advocates, and how do those of us who have participated in advocacy training share what we learn? How can we adapt the advocacy process to be more accessible? How can we create space for messy advocacy and interdependent organizing? ASAN imagines advocacy access through educating young leaders, creating easy read and plain language resources, and establishing a new proxy calling system that allows individuals to submit a script for an advocacy phone call to their representative(s). Grassroots advocacy organizations are centering access in their calls to action. Disabled activists emphasize the importance of self-care and the validity of crip activism and doing what you can.  Together, organizations and individuals are striving to remove the barriers and move forward towards accessible disability advocacy.

How do we move forward? How can advocacy training become part of education curricula, especially special education? How can advocacy training be integrated into patient education and the battery of therapies that disabled people endure from childhood? How do we create systems and structures that promote advocacy because they want to be held accountable?

Advocacy is hard. Keeping us out of it will be harder.

AUCD Emerging Leaders Map

I’m incredibly grateful to be honored on the AUCD Emerging Leaders Map for 2019. The theme for this year’s nominations was “Centering People with Disabilities/Disabled People,” which I strive to do in my work on autistic and disabled student experiences. Check it out here!

AAIDD: Translating Knowledge to Power and Practice

This blog post was originally submitted to and published on the Illinois LEND Blog.

The American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting was held in late June in St. Paul, MN. There was a significant Illinois LEND presence at the meeting, with multiple LEND alums presenting at the conference. Notably, IL LEND faculty member Meghan Burke received the AAIDD Early Career Award.

The conference theme was Knowledge Translation: Power in Research, Policy, and Practice. Knowledge translation is the act, intention, and processes by which information moves from academia to communities, from researchers to citizens, leaders, and professionals. LEND is a form of interdisciplinary knowledge translation, where research and clinical trainees work in collaboration to inform one another’s practice.

In the context of disability research and policy, knowledge translation becomes an essential access tool. For our work to be meaningful, it should be accessible and actionable to the disability community. How can your work be translated to disability communities?

Research

1. Explore and answer questions that the disability community is asking.

2. Ensure your research design, especially the informed consent process, is accessible for participants with varied communication skills, technology and language access, and levels of understanding.

3. Create opportunities for disabled collaborators as both participants and members/consultants of the research team.

4. Create and distribute open access, plain language summaries of your findings. Meet with community leaders to discuss ways that research can inform change.

Clinical Practice

1. Keep up with current research, especially research that meaningfully incorporates disabled people’s perspectives.

2. Work carefully with patients and clients to ensure that they understand and consent to exams, evaluations, and treatment plans.

3. Challenge ableist ideas and assumptions within your school, clinic, practice, or firm.

Policy/Advocacy

1. Uplift the voices of disabled self-advocates and their policy priorities.

2. Volunteer to ensure that polling places, town halls, and other forums for civic engagement are accessible.

3. Write letters or call or email or visit your representatives. Support disabled people in writing, calling, and visiting as well.

Above all, allow disabled individuals and communities to inform your work, center their perspectives, and continue to fight for a more equitable and accessible world. Knowledge is power.

10 Steps to Applying For Grad School

This post was originally presented as a guest lecture to the UIC Women in Science and Engineering organization.

1. Join a research lab in a field of interest. It is never too early to get involved in research. 
2. Establish relationships with professors and talk to them about your goals and desire to go to grad school. They have good advice, and can write your letters of recommendation. 
3. Study for and take the GRE, if it might be required by programs. Do this at least one month before application deadlines, and earlier if you might want to retake it. 
4. Choose programs based on your interests and preferences. Contact professors in these programs and talk to current grad students. 
5. Select the schools you want to apply to, but be flexible- you might find out about other programs as you are applying. 
6. Pay attention to the application requirements and deadlines for each program.  
7. Write your personal statement AND have it read by your friends, family, professors, and advisors. This is your first impression to an admissions committee- make it strong. 
8. Fill out your applications- this means entering all of your information, attaching statements and transcripts, paying fees, and following up with your letter writers to ensure they submit their letters. 
9. As you hear back from programs, take note of whether you were accepted and what funding is available for the program. 
10. Select a school! You may have a clear front-runner, but you can talk to professors and current students to learn more about each program.