OARacle Newsletter

Without disability advocacy, the autistic community would not be thriving today. Autistic children would not be able to attend school, “autism” would be too stigmatized to mention, institutions and asylums would be the norm, and conversations about autism in the workplace would be virtually unheard of.

The foundational, trailblazing advocacy efforts of early disabled activists such as Judith Singer and Judith Heumann pushed disability into the spotlight with the passage of the Americans With Disabilities Act (1990), Section 504 of the Rehabilitation Act (1973), and the Individuals with Disabilities in Education Act (1990). Their efforts gave rise to disability advocacy and, in turn, created a platform for the disability community to advocate for their needs.

Spilled Water

My advocacy career began abruptly and without warning in February 2022 when I spilled water on my laptop. That ruined laptop, a $1,000 loan repayment, and a part-time job that paid $20 an hour forced me to find alternate sources of income.

I turned to LinkedIn and quickly realized there was a huge community of disabled self-advocates, many of whom were autistic. My priorities quickly shifted away from “how can I repay the $1,000 loan?” to “how can I establish myself as a disability advocate?” I had always known I wanted to work in the disability space, particularly in advocacy, but for the longest time, I did not know how to get my foot in the door. I saw LinkedIn as the perfect opportunity to establish myself as an advocate, which could lead to paid opportunities, from public speaking to consulting, both of which I currently do. I also saw potential for my advocacy work to lead to a full-time opportunity as I connected with more and more people within the disability space.

Advocacy 101

Take initiative: If you want to advocate for yourself and others, it is critical to take the initiative, as opportunities will not just fall at your feet, at least not early on when you are a relative unknown within the advocacy field. I started asking my newly formed connections for advocacy opportunities, including public speaking gigs and writing.

Be persistent: Predictably, there were not many opportunities available early on for someone new, but that did not deter me. In advocacy, patience is not a virtue. You must persist. I kept asking if any opportunities were available. Some of the specific questions I asked were, “Do you know of any public speaking opportunities coming up?” and “Is there any current volunteer work, like blogging, speaking, or creating social media posts, that I could do for your organization?” Those questions highlighted the skills I could offer.

There is often a fine line between asking enough and asking too often. If you ask weekly for new opportunities, potential employers may see it as annoying or desperate. Asking too often could turn people away from you. My strategy has been to connect more and ask less. For example, if I connect with 20 to 30 people, I only have to ask each of them about opportunities every few months. In contrast, if I have only five or six connections, I could end up asking each of them 20 times in three months. I try to make no more than two requests every three to four months. I continued my conversations with my newly formed connections, developing close friendships with a few, which later proved essential in providing my first opportunities.

Share your story: Another way I met people was through sharing bits and pieces of my own story. It was scary at first, because I was worried about being judged, critiqued, rejected, or being told I was lying, being overdramatic, or making everything up. I was afraid of my experiences being invalidated and disproven by the stakeholders involved, from parents to peers to educators.

I was able to overcome my fears by thinking of all the good that could come out of my story, imagining how validated and understood other autistic people might feel when they read about my experiences. Sharing my lived experience was a way in which I could be vulnerable, tell my story in a way that resonated with people, and get my perspectives, insights, ideas, and passion for disability reform out to the public.

Lessons Learned

Throughout my advocacy career, I have learned many important lessons that have helped my interpersonal connections, shaped my worldview, and supported my growth and development as an autistic advocate.

Listen without judgment: This is among the most important lessons, as it takes immense courage for someone to share their story, especially with a stranger. By disclosing and sharing, they indicate that they are willing to trust you. There is a lot we can learn through listening while withholding judgment. I have met many amazing self-advocates who are supportive of applied behavior analysis (ABA), even if I didn’t have the best experience. Rather than invalidating their experience based on my own, I learned about the positives of ABA and began thinking of ways in which we can incorporate those positive aspects into all ABA practices.

Likewise, I have met many self-advocates who used language I felt uncomfortable with, such as referring to autism as a “superpower,” but rather than disputing or negating their experience, I reserved judgments and opinions and gave them my full respect and attention. Listening unjudgmentally is important as it can lead to much more productive conversations that allow everyone to come away feeling heard, respected, and validated.

Recognize the importance of intersectionality: It is important to reserve assumptions about autistic people and recognize that every autistic person is different, living within their own unique contexts, environments, and intersections.

Many in the autistic community are members of other marginalized groups (LGBTQIA+, BIPOC, among others), and their autistic experience, in tandem with their other marginalized identities, gives them a different lived experience from people who do not share those identities. An Asian autistic, for example, will have a different experience than a white autistic and might encounter additional stressors such as racism and trying to live up to the “model minority” myth. For that reason, supports that help one person might not be useful or may even be offensive to another based on culture, heritage, or background.

Go in with an open mind and be open to changing your opinion: Open-mindedness is one of the most important attributes of an advocate. Many of us are passionate about the work we do and might go into advocacy with many preconceived notions. The ability to see past our own preferences and understand other perspectives is a critical skill when it comes to working alongside others with different lived experiences.

Advocacy Matters

Autism advocacy is very important. Because of the tireless work of tens of thousands of autistic advocates throughout the decades, beginning with the groundwork set by Judy Heumann and Judy Singer, autistic people can attend school, find meaningful employment, and live a life of independence and self-fulfillment.

For all of these remarkable achievements, however, there is still much more to be done. Many classrooms are inaccessible to autistic people, and many teachers are uninformed about best practices when teaching them. Although autistic people are more likely to gain meaningful employment today, the unemployment rate is still around 85%, and many workplaces lack foundational knowledge in autism and disability. Housing options are still hard for autistic people to find. Many autistic people struggle with co-occurring disorders like anxiety and depression, which greatly impacts their quality of life.

The reason I, and so many other autistic people, advocate is to reduce or eliminate these barriers and challenges to ensure the next generation of autistic scholars and employees find society and life easier to navigate than we did.

Ben VanHook is OAR’s community support coordinator.