Spectrum: Autists and Activism: An Interview with Joe Biel

T.H. Vega

Joe Biel (JoeBiel.net) founded Microcosm Publishing in 1996. His neighbours were unionized, working-class Democrats who helped establish his early interest in leftist politics. However, it was not until his teens when he discovered punk rock, and later with the founding of Microcosm Publishing, that he got involved in radical social justice activism. Microcosm has grown since its founding to be one of the largest distributors of independent publishing and zines in North America. After 15 years of involvement in social movements, engaging with issues like police brutality, globalism, public space, bicycle activism, queer and women’s rights, Joe withdrew from neurotypical activism. When he was 32 he was diagnosed with Asperger’s Syndrome, an autistic spectrum condition, which played a large part in conflicts with other organizers and his feelings of isolation. Joe Biel sat down with Thania Vega to speak about his experience as an autistic person within leftist social movements, and what needs to be done to make these movements more inclusive of autistic people and the issues impacting their lives. The interview took place in November, 2016.

There have been several years of controversy surrounding Joe Biel and Microcosm. Shortly after conducting this interview, it came to our attention that there was an active boycott against Joe Biel and Microcosm Publishing due to a history of conflict and harm between Joe Biel, an ex-partner, and other activists. When we approached Joe Biel about these conflicts he acknowledged this history and told us the multiple steps he had taken to be accountable, which some of his accusers still consider to be insufficient or incomplete. There continue to be some independent zine publishers who will not partner with Microcosm and have spoken out publicly about their experiences. With full knowledge of this, we decided to publish the piece for one main reason: although it is possible for someone on the Autism Spectrum Disorder to engage in abusive behaviour, we believe that our movements fundamentally lack the tools and understanding to accommodate neurodivergence within its spaces. We hope that this article opens the space for activists to consider contradictory needs such as the need around community accountability processes and the need to understand autistic people’s different capacities to assess social situations. We welcome any comments or feedback on this article and our decision to publish it.

Due to the general unfamiliarity with autism, let’s start with you describing your experiences. What was the impact of the diagnosis on your life?

The life of virtually any undiagnosed autistic person can be very lonely. From conversations I have had with other autistic people, I can attest that we find it difficult to understand and relate with neurotypicals, and often feel like they don’t understand us. We don’t look at problems in the same way; we apply a different set of criteria when evaluating solutions. A lot of non-profits centred around autism, such as Autism Speaks, focus solely on supporting parents with autistic children. So there is a general lack of support for autistic people. The resulting isolation can often lead to suicide.

In my case, I slowly came to the realization that I lack the tools to emotionally relate to other people, which is how most other people communicate. When I was a child, this was less noticeable given the relative emotional immaturity of peers my age. But as I aged, I noticed that my peers began to emotionally mature faster than me. By the time I was 32, I had experienced failure in all aspects of my life. My diagnosis felt like a soft pillow, like “oh, now it all makes sense”; it made my entire life less stressful. It still felt like I was living in someone else’s world, living somebody else’s life, but I finally felt a sense of agency. A lot of people I know have expressed that sentiment, that getting your diagnosis whether you’re 12 or 50 is like the point where your life begins.

At first, it was hard for me to think of myself as an autistic person because I didn’t really know what that word meant. Autism can involve experiencing a much larger load of sensory stimulus and interacting with it differently. When we’re sleeping our brain is taking in about four times as much data as a neurotypical person. During the day, it is even wilder because you pick up on things other people wouldn’t notice, or if they did notice, wouldn’t care. We can get easily overwhelmed and respond with meltdowns, which manifest differently in different people. Some people are virtually non-verbal and others merely exhibit various oddities such as lack of patience, a seeming lack of empathy, and frustrations that they can’t often talk through with someone else. In the case of “high functioning” people, their family and friends sometimes have a very hard time accepting the diagnosis and see it as threatening or a condemnation because they don’t want to see this person as disabled; they want to see them as functional. Overall, then, how autism is discovered and approached can really impact someone’s experience with it. A lot of times, if someone is diagnosed at a young age and is coddled too much, or has other kinds of trauma in their early life they will really go into their shell. It’s harder to get out of that maladaptation and learn how to take care of yourself. Although that is not unique to autistic people, it takes a skilled eye to see how autism intersects with those experiences.

Considering the wide-ranging experiences of autism, it can function as an invisible disability, or rather a disability that manifests itself in ways that remain invisible. Can the invisibility of autism provide you with some degree of passing privilege or can invisibility result in its own set of challenges?

Dave Griffiths, a local, disabled, homeless activist explained to me that “privilege is when you assume that power structures will do things for you. A lack of privilege is when you fear that power structures will do things that harm you.” His definition gets to the heart of the matter.

Autism is invisible if you don’t know what to look for.  Conversely, it can be visible but misinterpreted as rudeness or someone being difficult. Autism is also widely misunderstood. There is an idea that we are non-cooperative or confrontational. In this sense, it’s bad if someone perceives us as having passing privilege. Essentially, to an untrained neurotypical, our disability can make us look like we are inconsiderate or indifferent and so it’s hard for neurotypicals to respond empathically. I cannot tell you how many times, when I tell someone that I am autistic, they respond with, “You don’t seem that way to me,” and it’s always because they don’t understand what the diagnosis means.1 So some autistic people stop telling people. They think that if they fly under the radar no one will notice and it won’t bother them. But, again, that doesn’t often work because the alternative is that it just looks like you are self-centred, difficult, and rude and that comes across even worse.

A big part of this lack of privilege is the invisible labour done to fit into neurotypical ways of communicating. I only communicate to exchange information and that’s really hard for neurotypical people to understand. If somebody tells me that their grandmother died, I don’t have an empathic response; that is only information to me. Now, after some training I learned what a neurotypical empathic response is and how to mimic that intellectually. I also have a set of basic rules for conversation, like don’t talk for more than two sentences unless asked to tell a story or explain something that I’m an expert in. I’ve spent years reading about psychology to understand why neurotypical people react the way they do to things that I’ve done. I have a really hard time hearing someone else’s perspective. So I did four years of intellectual understanding of empathy that teaches me the conversational tonal ranges of voice, how to react to somebody to not creep them out, and how to have a conversation. I’ve learned that neurotypical people don’t react to the words you’ve said as much as to how your tone and the words made them feel. Those wounds are mutually hard to get over.

For many autistic people eye contact is incredibly overwhelming; just like a person’s facial expressions and mannerisms. Interactions with neurotypicals invoke fear in me that I’ll continue to suffer the kinds of rejections that I’ve suffered my whole life. It can bring back lifelong trauma of “I’m going to upset this person. I can’t understand why what I did was wrong.” I think neurotypical people don’t have that difficulty. They may willfully refuse to accommodate someone else’s feelings and requests, whereas I have a difficult time understanding what is being requested, which is a huge difference.

I want to move on to talk about your experiences within leftist social movements. You mentioned that “autistic people are often painted by the Left with a didactic brush as sociopaths.” Can you elaborate on that?

Yes, oddly autistic people are often misconstrued to be like sociopaths, even though it is quite the opposite. A sociopath is very good at perceiving and manipulating the emotions of others to do their bidding while autistic people are disabled in these departments. For instance, when I was young, no one explained to me what an appropriate response would be to grieving. People would think I was intentionally withholding; that it was a traditionally male way of engaging with that situation. A lot of times what happens is that a neurotypical person will see our behaviour, interpret it through how it makes them feel, and dictate our motives. Empathic response requires skills that take years for us to learn to understand what someone else is saying and why, what’s an appropriate reaction, how to relate with them, how to be a peer, how to strengthen that bond between you two.

Most of my organizing experiences have been difficult because I could not read people. The resulting interpersonal misunderstandings and disagreements burned me out. More than in theory, in my heart: these social justice movements are the things that are important to me. I still believe in the politics and struggles of these movements, but I don’t feel like I’m part of the community, largely because of this misunderstanding between the symptoms of autism and the way that mine are exhibited. I was often involved in consensus organizing that was ableist in practice. The presence of a toxic person in a working group can result in a shift of attention away from the work you’re supposed to be doing, and I could see how dealing with my symptoms could be seen as something similar. My inability to recognize someone else’s discomfort created simmering tension. If I didn’t respond appropriately to a woman’s concerns, I would be accused of sexist bias. When I would explain my perception and apologize, there was still an impasse. This was painful because I felt like I was getting in the way and so I would withdraw or watch myself be intentionally excluded from working groups or outside socializing. It’s only in hindsight that I can see why they were rejecting me and why I excluded myself.

I’d joined a bicycle activist group and it would feel like everyone was already friends and only valued ideas from people that they knew. I joined an organization to deal with the FBI’s then-new Joint Terrorism Task Force in Portland and would be routinely teased for my different appearance and lack of social skills. I was part of a labour-rights organization and was roundly criticized and rejected for bringing up when people failed to fulfill their commitments and promises, even when bills were unpaid or the internet was turned off. In a small pedestrian rights group, the group would half-heartedly embrace a project and all I could hear were the affirmative statements, not the lackluster tone and lack of interest. I had been involved in these groups to derive meaning and purpose as well as to socialize with like-minded people. I internalized the resulting withdrawal, even when self-imposed, and it was sharply isolating.

Few of these movements were intersectional in terms of accounting for disabilities. For example, when one of these groups was putting on a benefit event, the only bathroom was down a flight of stairs which resulted in a deep schism between moving the event somewhere else or renting an accessible Porta Potty. The majority reaction was “well, are there people that are coming who can’t climb a flight of stairs?” But obviously people won’t come if they know they can’t go to the bathroom. This kind of thinking produces homogenous groups.

To be fair, I was part of one group that promoted zines and grassroots action that was truly accepting and embracing of everyone in an intersectional way. This is because one founder, Eleanor Whitney, was quite vocal from the beginning about including this as a priority and making everyone—including me—feel like they were part of the group. I was involved for five years and can still have a pleasant conversation when I run into people from that group on the street.

These experiences taught me that movements should be relational at their core. I understand the irony of my suggestion, but I do feel like understanding each other’s individual struggles and the ability to empathically respond at an individual level makes you able to weather any storm. Even now, seven years after my diagnosis, somebody will bring up a negative interaction they had with me and I explain that I’m sorry, that I wasn’t aware, why I couldn’t perceive their feelings or their expression of them, and that I’ve done years of homework to learn how to change this response. While it felt like I was just trying to bulldoze my perspective over theirs, there’s a fuller context of what was happening. But, neurotypicals are more inclined to remember how it felt than what was said. And if you feel like someone is hurting you it’s difficult to respond with empathy. For this reason, people who have had other negative interactions with autistic people in organizing are very apprehensive about the intersection of autism and organizing being discussed openly.

To bring it back to invisibilization and privilege; it’s easy to not include autistic people after experiences where we come across as exerting privilege and stampeding others’ boundaries. But it’s important to understand that autists have a harder time distinguishing between their intentions and the impact of their actions, and understanding that the latter is more meaningful. We learn to expect rejection so we don’t necessarily bond, and socializing is exhausting by nature for us so we don’t always seek it out.

What is your response to accusations that have been made against you regarding abuse and manipulation, rashly taking legal action against independent zines and activists during disputes, and of unilateral decision-making in Microcosm? What are the specific steps you have taken to be accountable and diminish the chance of abusive behavior in the future?

I got married 15 years ago, before I was diagnosed and learned how to understand or respond appropriately to ​emotions and nonverbal communication being expressed to me. As a result, I crossed a lot of boundaries and hurt my ex’s feelings deeply. I came to understand that intentions were not what mattered as much as impact. Before I understood the emotional needs of others, I was repeatedly insensitive and callous towards their feelings, hurting people who felt close to me in deep, fundamental ways which fits the definition of abuse and misogynist behaviour. But I took no pleasure in this. I was confused each time that it happened and ultimately it hurt me too; I cared about these people and wanted emotional proximity with them but had no understanding of how to achieve that. Still, my actions​ hurt them. I emotionally abused people that I care about and for that I am sorry.

Taking responsibility for the impact of my actions was the first step towards moving on. I focused on learning how to prevent it from continuing. I checked myself into therapy. Slowly, my therapist could get through to me that there isn’t one truth, but rather each person has a different perspective on the same event and has different emotional responses to it. I learned that my reality does not preclude other people from having different perspectives. I also learned that I was inflexible in my assessment of every situation. I wasn’t having conversations, I was sharing information and solving problems. I similarly lacked the ability to recognize nonverbal forms of communication, like hesitation, sarcasm, body language, tone, or facial expressions. No matter how much I tried, I could only understand someone if they explained what they meant verbatim.

As far as specific steps that I have taken to be accountable, I followed the requests that my ex-wife sent me in 2008 to avoid contact. She also requested I seek therapy, which I attended for six years with a feminist social worker. Together we focused on issues of my family history, control, abuse, and manipulation. It was here that I got diagnosed. Therapy helped me to understand how it would be painful, confusing, and difficult to date a previously undiagnosed autistic person. I continued the pursuit of other therapy goals and grew a lot through this process and I am thankful for that. I have also publicly acknowledged issues of abusing power through manipulation. I made a public statement about this on June 2009 and made another post on medium.com,2 which was an addendum to my 2016 book Good Trouble: Building a Successful Life and Business with Autism.

She also requested that I show demonstrable changes in my behaviour. Following my counselling, which resulted in getting my diagnosis in 2009, I engaged in years of Cognitive-Behavioural therapy learning work, which is where autists learn to intellectually mimic neurotypical/emotional behavior. And I participated in a mediation process in 2008 and an accountability process in 2010 with limited success, I believe, largely because the Left has not adequately determined how to conduct mediation or accountability that reach their intended goals. However, having been in a healthy relationship for over eight years, I believe, is a demonstrable sign of change in my ability to engage in non-harmful relationships.

In addition to my marriage, my behaviour also severely impacted my relationship with my co-workers. When Microcosm was a collective, from 2006-2012, sometimes disagreements grew tense. I had more years of experience than anyone else and people frequently deferred to me. I was always in favor of efficiency and following specific written policies, which I can see came across like dismissing people’s concerns.

I have taken legal action exactly once in my life after Microcosm became heavily indebted in my absence, and the collective management allegedly failed to pay their half of $38,000 of debt. Still, I regret it. They are good people and we should all support them. I was hurt because these were people that I had worked with for years and trusted with hundreds of thousands of dollars’ worth of inventory and equipment and hurtful rumors were flung around.

The community’s response and understanding of these issues has been completely heartbreaking. I think the issue is that we are told that we have to choose sides. We don’t. The only side is intersectional, restorative justice.

What, then, can social movements do to be more inclusive and accommodating of neurodivergence?

One of the ways neurotypical people can accommodate autists is by understanding how we comfort ourselves. A lot of neurotypical people would comfort themselves by relating with their friend which helps them to feel understood. Whereas for autists, we use some kind of hand flapping or stimming to feel more comfortable, which is the repetitive motion of opening and closing our hands repeatedly. Care providers and parents often try to extinguish or reduce autistic stims, especially through behaviour therapies, which can be a harmful form of neurotypical bodily regulation and autistic assimilation. When I was little I had all these blankets and I could comfort myself with feeling the texture with my fingertips. Now, I am very particular about my clothes because otherwise it’s distracting enough that it that totally overwhelms my senses and I can’t have a conversation. If you saw somebody who couldn’t focus and was constantly rearranging what they are wearing, would you know how to respond?

I was talking to somebody this morning who believes that they had dated an autistic person and her big question was “Well, how do I know?” My response was, “The real question is, Can I trust this person? Is it safe to be offering of myself to this person?” A person who lacks empathy will lie to you without reason and they will lie to you endlessly. In contrast, an autistic person will have a very different perspective from you, but will regret hurting your feelings. It may take a little while for you to make us understand that you’ve had your feelings hurt and why, and it will require patience.

One thing that we’re really good at, maybe all too good at, is following clear and actionable instructions like “don’t ask me about this” or “it makes me feel this way when you do this.” Autists may not mean to intentionally harm somebody, it’s more like we just don’t know. We learn by failing and we learn by doing it better, gradually, every time that we fail. Having somebody to help us through that failure is important even though it can be extremely exhausting for both parties as it may feel like we learn very slowly or that we are being obstinate.

Furthermore, when there is mutual withdrawal and breakdown it is important to recognize that the neurotypical person’s feelings are hurt, but so are the feelings of the autistic person, even though this manifests differently. That’s a hard thing to understand because of the way that neurotypicals empathize with each other, but a certain level of mutual accommodation is necessary to repair relationships and rebuild trust.

As a racialized person, I constantly have to explain racism to people to the point of exhaustion, at which point I direct them to do the labour of educating themselves. But, as I speak with you I realize that at times I may have been dealing with someone who genuinely wanted to understand but was having a hard time. I wonder whether my reaction at the time was coming from a position of neurotypical privilege. What is your response to this dilemma?

I’ve run into that wall myself, where I’m like “this information is all available on Google. There’s no reason that you need me to explain it to you.” But I also see the other side. I feel like I’m a somewhat politically sophisticated person, but when I ask someone a question to understand their perspective better I’ll be met with “you’re asking me to do free labour” or “this is not my responsibility.” I get it. At the same time, I also hope that they point me to some sort of platform or article because I want to know. Sure, there are plenty of people out there simply trying to push your buttons, and a lot of times that’s how it comes across when you interact with an autistic person because it feels like we’re being the devil’s advocate. But we don’t really needle for needles’ sake. This speaks to a broader problem on the Left of failing to reach out to those who are not familiar with all the lingo. It can be exhausting to have to spell out something that’s rudimentary to you to somebody who doesn’t get it. But, even when I am really fed up, I try to tell myself “they are never going to get it if I don’t spell it out because they are never going to research it on their own.” If it’s a complex topic I will send them resources because I would rather assist in the handling of this data than leaving it to internet trolls, you know? In summary, I would ask leftists to embrace their inner expert and use their accumulated knowledge and not leave it up to chance. Just like I would appreciate it if people who were college educated owned up to this privilege, I feel like owning up to neurotypical privilege is having the awareness to check yourself and consider the context and impact of your actions.

From your perspective, what is the current state of autism-related social movements? What are some of the most pressing issues affecting autists today?

In broad strokes, autistic people lack a unified social movement; public understanding, even among radicals, is decades behind, and, perhaps most concerning, is that autism is often labelled as “an excuse to be an asshole.”

Mainstream autism organizations aren’t really concerned about autistic people, rather they are concerned with the parents of autistic people, or the “trauma” of knowing that your child may not be the smartest, best, highest-performing human in their class. For parents with a certain level of privilege, sure, that’s a concern. But for most autistic people, our experience is way more traumatic than that; it’s a constant, ongoing, everyday struggle to exist. There are many local, independent support, meetup, and social groups but they primarily focus on children and developing social skills rather than building demands and power. There are autists interested in building a movement. One example is an organization like the Icarus Project for Autists that challenges the idea that autism needs to be “cured,” and instead focuses on the value that we contribute to society and how to embrace that. Through writing my book and a number of smaller follow-up articles, I also came to mentor six young autists. While most of their questions are about dating or social norms, they value having someone who understands. Even though we have a hard time understanding other people’s feelings, talking about our shared experiences and feelings can have a huge, immediate impact. Imagine having hundreds of people who understand and watch your back every day of the week.

The next step needs to be building an intersectional movement where we tackle broader issues affecting multiple communities. One of the most pressing issues is police violence. Five or 10 years ago, even if there was a news story about autism, it would not be national news—it would be a buried local story. Even with the vast reduction in investigative reporting, I find stories about police violence against autists every week; heartbreaking stories like a mom who spray-painted on her garage “dear police, my son is autistic, do not murder him.” I don’t think those incidences of violence are heightened or new, we just have much better documentation of them now. It seems that at least half of the victims of police violence, if not more, are mentally or emotionally disabled. I’ve had many negative interactions with police where my motives are misinterpreted so reading about these stories has helped me realize that these are part of a much bigger, sinister pattern. There’s absolutely no shortage of stories where a person is known by police to be autistic and the situation still somehow escalates to lethal force, despite being completely preventable.

I think a lot of the conflicts between police and autistic people emerge out of police being trained to perceive certain emotional expressions as dangerous. And we’re very hard to read, generally speaking, especially if we aren’t cognitively retrained about how to pass. And so, of course, interactions with the police often end very badly. Even if you disclose your diagnosis, the police might not believe you. One cop explained it to me as “we are lied to every single day, so we expect in every interaction that the subject is lying to us.” He saw the limitations of that but also thought it was inevitable that, after a certain amount of time in the field, much of the response to a tense situation becomes instinctive; your training cuts into muscle memory and creates an instinct. As you might imagine, these “instinctive” reactions get compounded with the broader criminalization of poor people, people of colour, and queer and trans people. For instance, there is the case of Kayden Clarke, a transgender autist in Mesa, Arizona who became YouTube famous for showing how his service dog helped him through meltdowns. The police, called to his apartment to check on him, claimed that they felt threatened and responded with lethal force. Kayden’s story is heartbreaking because he’s the kind of person who was changing the world and creating public awareness through much internal struggle.

Although autistic organizations such as the Madison House Autism Foundation organize around the issue of first responders, our organizing efforts are thwarted by the social isolation that individuals face, as well as our general lack of access to economic security and other support systems. We are thus hardly in a position where we can speak for ourselves. Instead, we are constantly represented by parents, clinicians, experts, psychologists, and teachers. Everyone speaks to our potential except for us. “Nothing about us without us” is our slogan. However, we are easily cast as the unfortunate casualties of violence in “unavoidable” circumstances and the situation isn’t explored to prevent it in the future.

I would conclude by asking people to challenge the trend of creating a bubble around people’s identity politics and drawing a line in the sand as it harms the neurodiverse. Neurotypicals: before you act try to take the emotions out of a situation, think and read critically to understand others’ perspectives. Everyone needs to take advantage of teaching opportunities to create awareness and balance our seemingly contradictory needs and goals with those of other people. We are told that there is no room for autists in the world so we need to build it.

Notes

1 Joe Biel invites readers to watch this video to learn about other harmful stereotypes about autistic people: StimNation, “S#!T Ignorant People Say To Autistics,” YouTube, last modified February 18, 2012, https://www.youtube.com/watch?v=5fTBM_3sdwE.
2 “On the resiliency of the cockroach: Joe Biel’s Autism & The Re: Spectrum of Human Emotions,” last modified Jul 17, 2016, https://medium.com/@joebiel/on-the-resiliency-of-the-cockroach-aspergers-the-re-spectrum-of-human-emotions-f219102c1c45