Activism and Self-advocacy in the Autistic Rights Movement – Semiotic Spectrumite

drelena_activistBy Elena Âû Chandler , Badass Contributor

In 1997, in Eugene Oregon, the city council approved a plan to cut down a historic heritage tree in order to make room for a parking lot. On the night before the tree was to be cut down, eleven environmental activists climbed the tree in an effort to save it. Ignoring the fact that a public hearing was scheduled for the next day, city officials sent the police, who used cherry pickers to access the activists and violently attack them with truncheons and pepper spray, endangering their lives in the process. Video of the event shows police cutting the leg off of the pants of one protester, Jim Flynn, in order to spray pepper spray on sensitive parts of his body. In the end, the tree was cut down and it was the activists who were labeled “extremists.” Nevertheless, it was acts of protest such as this that did ultimately lead to a change in logging policy in Oregon and additional protection of old growth.

When activism is portrayed in the media, what is generally shown are acts of enormous courage like “tank man”, standing in front of Chinese tanks in Beijing, grand campaigns in which activists speed along in boats, dwarfed alongside whaling vessels, attempting to paint messages on its hull, people chaining themselves to the gates of military bases knowing that they will be arrested and could face federal charges, or people like Julia “Butterfly” Hill, a “tree-sitter” who spent more than two years in a 55 meter-high redwood to prevent it from being cut down.

This is the public face of activism and as a result, activism has an image problem. Because faced with these kinds of images, activism can seem formidable, making people reticent to get involved or call themselves activists. And certainly activism can look like this, and these are all meaningful and courageous ways of standing up for what you believe in, however activism as a whole is not characterized by these imposing examples, which generally build on a foundation of efforts that, though less dramatic, and that are nonetheless still effective. The scale of the individual act is less significant than working consistently towards change with the goals of the specific activist agenda in mind.

In this article, I will examine the goals of activism in general and autism rights activism specifically. (The focus will be on autistic self-advocacy due to considerations of length, and activism by allies will need to be addressed in a separate article.) I will look at some methods that are useful and some that are less useful. Finally, I will talk about how to get started as an activist in ways that are available to anyone, regardless their experience with activism, abilities or personal challenges.

For reasons of brevity, this will not be an exhaustive examination of activism, but rather an outline of the most critical considerations and a sign post to help those who would like to be involved in the autistic rights movement to a degree that is reasonable for them. And as always I would like to point out that, as one autistic, my views on autism are shaped by my personal experiences, and while I make a consistent concerted effort to listen to and understand needs and experiences that diverge from my own, I cannot claim to speak for anyone other than myself.

 

The goal of activism

Two primary goals of activism as it pertains to a marginalized community like the autistic community are to challenge the dominant social discourse on a matter, and to eliminate systemic injustice and discrimination. Increasing equality and acceptance at a systemic level often means promoting equality and acceptance at an interpersonal level however it is important to draw a distinction here between discrimination at a personal level and discrimination at a systemic level. Challenging and changing those pieces of social infrastructure that disadvantage a marginalized group is the immediate goal. Changing the attitude of every individual in society so that prejudice against the group no longer exists may be a goal, but it is an abstract goal that does not fall within a timeframe that makes sense when planning activist activities.

Institutionalized, social injustice includes the kind of in-grained ableism that makes it difficult or impossible for autistics who could work to get or keep a job or that results in them being subjected to bullying in the workplace. It is the reason why so many bullied autistic children are told that the bullying is their fault, and that this would not happen if they would just make an effort to fit in. It includes general social tolerance when people use the word “autistic” as an insult. (It would exceed the scope of this article to list all of the manifestations of institutionalized ableism and discrimination against autistics.) And while there may always be some people who will treat autistic people as less, what can change and must change is society’s acceptance of that as “just how things are”. There needs to be social push-back against discriminatory behavior from society at large, not just the autistic community.

 

Target audience

Systemic injustice is changed by changing the public and socially-accepted discourse on autism as an identity, and changing that discourse means speaking to a specific target audience through activism. In the case of autistic civil rights, the audience for that activism is two-fold: the autistic community itself, and people who could be described as fence-sitters.

Fence-sitters are people who are unfamiliar with the challenges facing the community. They have not formed an opinion because they are not personally affected by autism. This is the majority of people in our society, and their understanding of autism is largely or entirely shaped by the dominant discourse on autism: a discourse controlled in an almost monolithic manner by non-autistic perceptions, needs and pecuniary interests. The lack of awareness among those in this group creates the inertia that makes changing things difficult or impossible and, as with all activism, this is where activism needs to be focused since this is where there is a potential to cultivate empathy and support and shift the collective public perception of autism.

The fact that this is our target audience is sometimes lost due to the fact that activism generally occurs at the nexus where the oppressed group encounters the oppressors, or those who, wittingly or not, continue to reinforce oppressive policies and perceptions. But while we are actively engaging proponents of damaging treatments, advocates of eugenics, hucksters with “cures” to pedal, autism warrior parents who see autistics as a burden or those with a vested interest in the cottage industry that has sprung up around autism, putting forward our rational and clarifying our experiences as the group being directly affected by this institutionalized discrimination, we are not really trying to change their minds. Occasionally there may be a change of heart, but that is a great deal of energy expended for limited gains. We are actually speaking to the uninitiated who are likely to be empathetic to our cause if we explain our conundrum and more so if our engagement with those who harm the community makes the oppression we face visible to the undecided bystander.

This is the point of non-violent protest, and the dynamic being spoofed in Monty Python when the peasant says “See the violence inherent in the system. Help, help! I’m being oppressed!” It is easy to lose sight of the goal and get lost in attempts to convince those who are actively oppressive that they are wrong, their position unjust, etc. When we lose sight of that, or when we respond to their aggression with aggression, it may meet an emotional need, but it muddies the water in terms of the activism. Public discourse changes when the fence-sitters who are potentially supporters form a stance and support the marginalized community. This, in turn, marginalizes the views of the oppressors. If there is aggression on both sides, this muddies the waters and obfuscates the message received by the undecided, thereby reinforcing the idea that the issue is too complicated to understand and fostering disengagement.

Methodology is therefore important. Our objective should be to show the power differential and the way the public acceptance of the oppressive discourse harms, not the outrageousness of the individual opponent. This can sometimes be difficult because emotions run high. Anger is a necessary component of activism (most of us experience that sense of “I’m mad as hell and not going to take it any more” at times). It is critical that your anger not become your activism, however. To the undecided observer, it reads as fault on both sides or as an emotional response. Critical self-reflection is essential. The higher the contrast in the stance of oppressed community and oppressor, the stronger the message.

 

We are also speaking among ourselves

Activism also means speaking to the community itself and rallying the home team, as it were. This is critical within the autistic community for several reasons.

To begin with, we all carry some degree of internalized ableism. Marginalized communities are still part of the public discourse, and subject to internalizing the messages of that dominant discourse. In order for autistic people to survive at all, we have all had to assimilate and adapt to non-autistic culture to some degree. Deconstructing that ableism requires a process of critical self-reflection and engagement with the community. We are a highly diverse group, not only because each autistic person has their own set of strengths and challenges (if you’ve met one autistic person…) but also because the diagnosis is new enough that people find their way to their diagnosis in very different ways. Some autistics have grown up with a diagnosis, some were diagnosed and the diagnosis buried in the closet of family secrets, some were diagnosed later in life and some are self-diagnosed. We have received varying degrees of support and help, have different paths to self-awareness, and have been on that path for varying lengths of time.

Part of the challenge each and every one of us faces is building or rebuilding self-esteem in the face of a false identity constructed in the crucible of the public misunderstanding of autism. It is a formidable task. We are redefining both our very identity and the ground we stand on in many cases. Building self-esteem after a lifetime of social pressure, punishment and incorrect assertions is very difficult, and it can take a long time for that self-esteem to be strong enough to bear weight. This is a highly individualized process and there are different ways of finding your way home to your real identity and, in consequence, people in the autistic community are in very different places with that identity.

In consequence, some of our activism needs to be directed at our own community; at building each other and ourselves up, and at recovering the human dignity stripped away by a toxic public and medical discourse. The way we treat the community and the way we assert our right to speak is also critical. It is essential that we tolerate opinions and positions that do not match our own. An autistic civil rights movement should lift up all autistics and address their unique needs and experiences. This is critical to supporting other autistics. Their right to an opinion is based on their being autistic; not the perceived orthodoxy of their views.

 

When self-advocacy becomes harmful

If we are doing our activist work properly with adequate self-reflection, our views about ourselves, our community and autism itself should be changing and evolving in all of us, no matter how long we have been actively engaged in the process of reclaiming our identity as autistic, and no matter how long we have been engaged in activism. Silencing or excluding anyone for a view that does not match our own undermines the purpose of our activism, which is human dignity for all autistics. This does not mean that we need to embrace every viewpoint that is put forward. It does mean that we should acknowledge that the view exists and, if held by an autistic person, is likewise an autistic view.

Issues like person-first and identity-first language, cure verses anti-cure, etc., are perceived in different ways within the community. We may even fluctuate in our feelings about these issues within ourselves. These issues need to be actively discussed within the community. People (each of us included) need to be given the space to evolve on these matters. The autistic civil rights movement is a new movement, and there has not yet been nearly enough discussion on many of these matters to call them resolved. And while tolerating heterogeneous autistic perceptions of autism may seem as though it weakens the argument put forth, it is essential to remember that the goal is not a prescriptive definition of autism imposed on all. It is that autistics are being denied the right to self-definition.

In pragmatic terms and perhaps most importantly, attacking and silencing one another signals that silencing some autistics is fine and it puts a conflicted face forward and does not contribute to swaying the public discourse: that all autistics deserve human dignity and that all autistics have the right to define their own identity.

Heterogeneous discourse can be handled by acknowledging that there is more than one way to view a matter, and that the understanding of complex matters within the community is evolving because we have been denied the right to participate in that discussion and have only recently been able to effectively gather as a community through the development of online communities. If it is an autistic definition, it is valid. This includes controversial topics like autistic people’s view on cure, treatment, whether autism is or is not a disability, whether the disability is medical or social in nature etc. We then need to examine these matters and continue our active discussion within the community; within the community being the watchword here.

 

A reach that exceeds its grasp

Ill-advised attempts to create autistic orthodoxy go hand in hand with claims to authority that exceed one’s grasp. The autistic civil rights movement is founded on the idea that autistic people should set the tone and have final authority in the discourse on autism, as we have traditionally been excluded from that discussion and our experiences at best ignored, at worst invalidated. This being said, with the exception of autobiographical writing, which only makes a truth claim for the individual, activism that seeks to educate requires a degree of study and needs to take into account the diversity of autistic experience. Activist approaches that emphasize differences between autistics, build one partial community at the expense of others, and reinforce a tiered system of human value within the community with claims that separate based on functioning labels, etc. (such as “shiny aspieism”) are damaging to the entire community.

Likewise, while vlogs and blogs are one of the most effective ways we have of getting a message out in a  world, in which the mainstream media caters primarily to non-autistics, it is essential that contributions that claim to educate be well-researched. One of the more harmful forms of activism at the moment are those who come forward to speak for the community at large with poorly informed and poorly researched claims about autism based on anecdotal evidence or mere speculation. It is not only not productive to make a video or publish a book to inform autistics or non-autistics about autism in a factual way based on no other authority than being autistic, it can actually be damaging.

It is therefore worth noting that, while autistics should have the final word on their identity, our innate authority ends at our own experience. We need to be mindful that we are not privileging our personal experience over that of others, and that we leave room for discussion and negotiation, and that ultimately, the experience of all finds a home in the way we talk about autism. This begins when we add the common caveat when talking about autism that we acknowledge that we are speaking form a specific viewpoint and experience, and that we neither wish to nor are attempting to silence the needs and experiences of others.

 

How to get involved in the autistic civil rights movement

Engagement in autism rights activism is a good way to become more aware of the needs and experiences of others. It is a good way to rebuild self-esteem, which has been damaged or completely decimated by incorrect and often harsh criticism in society.

So how does someone go about getting involved in activism? It doesn’t have to involve chaining yourself to metaphoric trees. Activism can look like many things. Here are a few suggestions to help you get started.

  1. Become as informed as possible on the subject of autism and the various views that exist through whatever means are comfortable or viable for you. There are many approaches you can take from reading scholarly work, scientific journals, blogs, personal narratives, or simply active participation in forums and social media discussion of autism. Learn not just to understand yourself but to understand others.
  2. Connect with the autistic community. Learn about the needs, views and concerns of other autistic people.
  3. Write letters to organizations or individuals supporting harmful treatments or views.

 

  1. Help to welcome newly identified or self-identified autistics into the community. Help them connect with others, point them towards resources, make them feel welcome and accepted.
  2. Mentor a family with a newly diagnosed child and help advocate for that child.
  3. Create a welcome package for newly diagnosed autistics that include stim toys, ear muffs, etc. that may help them start to better take care of their divergent needs.
  4. Join an organization that works towards autistic civil rights.
  5. Don’t simply accept views on why something is useful or not, harmful or not, accepted or not: find out why, reflect on this and try to develop a well-formed opinion so that you can not only advance autistic rights, but can provide the reasons for that position.
  6. Be as out about your identity as you can safely do. Safely can mean your safety vis-à-vis others or in terms of where you are psychologically in the process of self-acceptance. Wherever that may be at this given moment is fine. But work to push those boundaries as you can.
  7. Above all, live your life as much as possible with an attitude of self-acceptance. Being an autistic person in a world dominated by another neurotype means swimming against the stream holding a bowling ball in each hand. It takes courage just to go about your day. Being yourself in a world not made for you and exercising as much self-acceptance as you are able to bring in the given moment by refusing to live in shame is a radical act unto itself. This is perhaps the most radical and effective form of activism that there is.

Copyright © Semiotic Spectrumite 2018. All rights reserved.

Source: Activism and Self-advocacy in the Autistic Rights Movement – Semiotic Spectrumite

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