The Ideal, the Real, and Disability Advocacy

Twitter Facebook Google+Pinterest Linkedin Reddit

By Finn Gardiner

In this issue, Finn talks about making life fairer for all through his disability advocacy and activism. This article is part of our cover series on four autistic trailblazers who are building, bolder, better lives for themselves and others.

The gap between the ideal and the real is, and always has been, the impetus for my involvement in advocacy, even if I didn’t always describe it that way. From a young age, I have experienced the discontinuity between what is and what ought to be in a profound way, and found it difficult to accept answers like “that’s the way it is” and “life’s not fair” from the adults around me who seemed oddly acquiescent towards systemic injustice and unfairness. Life may not be fair, but I felt a need to make it fairer. I was shamed, though, for wanting to set the world to rights. When I was 14, my parents thought I was going too far when I tried to tell them about the squalid working conditions in Chinese factories. Something similar happened three years earlier, when I tried to warn my mother about the mistreatment of garment workers in Latin America and South Asia after having read articles in Time Magazine about workers’ rights.

It was the autistic self that was unacceptable to my family; no matter what I did, they would turn it into something that had to be fixed for the sake of appearances.

For my parents and many of the other adults around me, my concern for the state of the world was framed in the language of pathology; my idealism was an aspect of my being autistic that deserved ridicule and dismissal. They were turned into contextless “obsessions,” detached entirely from any considered ethical stances that I might have held. Paradoxically, if I had been totally uninterested in other people, it would have been treated as a trait of the same condition, given that autistic people are routinely thought to lack empathy. What I said and believed could be dismissed because it came from someone who was considered intrinsically “disordered,” even if those beliefs reflected consideration for other human beings’ wellbeing. It was the autistic self that was unacceptable to my family; no matter what I did, they would turn it into something that had to be fixed for the sake of appearances.

I believe that my ability to notice the difference between what was and what could be is connected to the ways in which I have been pushed to the margins of society; being queer, black, and disabled in a society that wasn’t created for me has made me acutely aware of this yawning gap. I weave intersectional principles throughout my disability advocacy and activism because of my lived experience. Autism, and disability in general, do not exist apart from a wider social context. Race, gender, social class, immigration status, sexuality, culture, and other experiences affect the ways that autism is both experienced and perceived. For example, Simon Baron-Cohen claims that autistic people have less empathy than non-autistic people. Crossing this with the idea that black people also have less empathy can result in dangerous consequences that may ultimately be fatal. Disabled people are more likely to experience police violence because we are often seen as creatures who are only part-human, if that. A similar phenomenon occurs with racial stereotyping.

Autism, and disability in general, do not exist apart from a wider social context. Race, gender, social class, immigration status, sexuality, culture, and other experiences affect the ways that autism is both experienced and perceived.

Feeling more comfortable with my identity as an activist and moving past the shame entailed accepting myself in all my complexity, rather than seeing myself as a list of pathological traits or disconnected interests. I had to be able to see myself as a full human being before I could fight for my own human rights. Of course, this shift wasn’t about repudiating an autistic identity; it was about understanding that my being autistic was not synonymous with my being broken. In my late teens and early twenties, I started reading articles about neurodiversity and the social model of disability and spent time in autistic advocacy circles online. Writers like Mel Baggs and Jim Sinclair both reminded me that it was all right to exist in the world as autistic and that there was room for me to advocate for the rights of autistic people and other people with disabilities. I could bring the ideal and the real closer to each other without feeling guilty for even noticing that there was a difference between the two.

It’s absolutely OK to be autistic and to have strong values that you hold dear. You deserve to exist just as you are.

By the time I was in my mid- to late twenties, I felt sufficiently comfortable with my autistic self to get involved with more public advocacy, like writing an op-ed against an Autism Speaks fundraiser for my student newspaper, joining my local chapter of the Autistic Self Advocacy Network (ASAN), attending ASAN’s Autism Campus Inclusion (ACI) training, and giving a talk to a class about ableism. It sort of became an avalanche after that; a few years after attending ACI, I started

working with ASAN as a remote staff member collaborating with a team of researchers on gauging attitudes towards the creation of an autism database in Massachusetts, staffing ACI trainings, and writing policy briefs and reports on issues affecting autistic people and other people with disabilities;
conducting presentations and participating in panel discussions about intersectional disability rights in a wide variety of venues, including the United Nations, MIT, the Ruderman Inclusion Summit, the American Association on Intellectual and Developmental Disabilities, and the White House during the Obama administration;
and working on a master’s degree in public policy at the Heller School for Social Policy and Management, which I completed this past May.

I’m glad that I chose to let the shame go and jettison the idea that I had to suppress my ideals to be “healthy.” I don’t think I would be where I am now if I didn’t stick to my ideals and work actively to make social inclusion for people with disabilities a reality. It’s absolutely OK to be autistic and to have strong values that you hold dear. You deserve to exist just as you are. In these turbulent times, we need more people to stand up and fight for inclusion, justice, and equality. We can’t sit around waiting for our heroes to come and fight for us; we have to be our own heroes. Let’s work together to create a kinder, more inclusive world in which to live.

Finn Gardiner is a Tufts University graduate in Boston who concentrated in Sociology, and a community activist who has worked with various groups, primarily regarding LGBT rights and disability advocacy. He brings his experience and passion for fusing creativity with social justice at ASAN as the Boston Community Coordinator.