#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.

ASAN Autism Campus Inclusion (ACI) logo

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.

Helen's name badge and color communication badges from ACI

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.

crowd of people wearing professional clothes, shown from the chest down, seated and taking notes
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.

The US Capitol building, topped with a large dome against a cloudy sky

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.

ASAN Autism Campus Inclusion (ACI) logo

AAIDD: Translating Knowledge to Power and Practice

image of Helen, a young white woman with short blonde hair and rainbow glasses. Helen is wearing a white collared shirt, grey dress pants, a conference name tag, rainbow glasses, and silver earrings. She is standing in front of a poster on including disabled people in research.

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

image shows a person wearing an orange and white shirt and dark pants with red nail polish and a gold ring sitting on a grey couch and typing on a laptop the person is pictured from the torso down

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. 

Neurodiversity: It’s Okay to Think Differently!

image of a rainbow infinity symbol representing neurodiversity

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

As a disability studies trainee and proud neurodivergent person, I wanted to share a little about neurodiversity, the movement of acceptance for all ways of thinking, learning, and being.  Neurodiversity recognizes that differences which have historically been pathologized are not inherently harmful or problematic. The neurodiversity movement believes these natural differences in neurotype (how one’s brain functions) should be celebrated, rather than corrected. Though neurodiversity was initially championed by autistic self-advocates, it has grown to include those with intellectual disabilities, ADHD, learning disabilities, mental health conditions, and other disabilities that affect how one thinks and feels in the world. Though the history of the term is unclear, it is most widely attributed to Jim Sinclair, an autistic scientist.

There are also misconceptions and criticisms of neurodiversity, even from those within the neurodivergent community. One common misconception is that individuals who believe in neurodiversity reject all medication, therapy, and other interventions to address their condition. While neurodiversity recognizes the value in different ways of thinking and being, individuals are encouraged to make decisions about treatment, including medications, that work for them. Another misconception is the belief that neurodiversity is only for individuals who are labeled “high-functioning” or have low support needs. The community rejects functioning labels because how well one functions is contingent on how well their needs are being met. Neurodiversity recognizes the dignity of individuals who have different support needs, including those who use assistive technology and live interdependently, contributing to and benefiting from life in community. Neurodiversity also challenges expectations of “normal functioning,” which value certain ways of moving, communicating, living, and working over others. Such expectations are especially pervasive in schools and workplaces, creating a substantial barrier to education and employment for neurodivergent people.

Disabled people, especially those with developmental, learning, and psychiatric disabilities, experience internalized ableism and shame about who we are. Neurodiversity provides the opportunity to celebrate ourselves and our communities. As clinicians, advocates, and professionals, understanding neurodiversity can help you to understand and respect your patients, students, or clients who think differently.