Intersections: Activism and Advocacy, part 1

“Until we are all free, we are none of us free.”–Emma Lazarus

Last weekend I read a short book by Daniel Hunter called Building a Movement to End the New Jim Crow: An Organizing Guide. This book, which has an accompanying website, is a follow-up to Michelle Alexander’s book The New Jim Crow: Mass Incarceration in the Age of Colorblindness, which is next on my reading list. All of these resources are specifically about the new Jim Crow era––the modern prison industrial system. I don’t want to downplay the significance of this subject: anyone who cares about our modern society and about basic Civil Rights should read these books and learn about why Civil Rights leaders and historians call prisons the New Jim Crow. (And if you haven’t yet, you should definitely watch Ava DuVernay’s new film The 13th.) But the nonviolent, civil-resistance organization ideas in Hunter’s book are applicable to movement organizations of all sorts, and the book left me thinking about the intersections of advocacy and activism. In particular I’m pondering how to apply his organization ideas to my own work in Disability Rights (a movement) while still advocating within the construct of Special Education (a system).

Over the course of (what I hope will be) three blog posts, I would like to summarize the big ideas of Hunter’s organizing guide for people who have not yet had a chance to read it. (Interested readers should, however, go and read the organizing guide. I cannot possibly over-emphasize how important it is to understand how the modern prison industrial complex violates human rights on a daily basis.) And then I want to think out loud about how these ideas overlap with something that may or may not seem overtly political: Special Education advocacy.

I want to be clear from the outset that I am not writing specifically about political parties. Civil Rights movements should cut across political parties; they should be nonpartisan. They often aren’t, of course, so we need to be clear about how we are defining “movement” in this context. Hunter defines movements as “forces of collective energy, channeling deep emotions like anger and love and mobilized by hopes and dreams for large-scale change.” The large-scale change about which he writes is modern-day segregation. But large-scale change is needed in a number of directions. In order to move towards that large-scale change, we need to know how to get there.

Hunter divides his guide into three chapters: (1) the roles people play in movements; (2) how to build strong groups; and (3) how to gather a group’s strengths into successful campaigns. Before I break down some of the major concepts of Hunter’s book, I want to foreground one of his resounding and recurring themes: movements aren’t about convincing through argument; actions move society. It’s extremely likely that people who are willing to read my blog in the first place are either predisposed to not be moved by any of my arguments, or already share the same worldview. I write not to change minds, but to provide support for those such as myself who want to take action. I write to push forward the long game, to encourage forward motion not just in the Disability Rights movement, but in all Civil Rights movements.

In chapter 1, Hunter quickly dispels four myths that seem to permeate movements. Let me briefly summarize both the myths and the realities as he presents them:

  • Myth: “movements are lit like a match.” Reality, movements take an incredible amount of time to build. When we construct histories of movements, our narratives nearly always focus on the flashpoints and ignore the many years of buildup. For most of us, our participation in movements is likely to be part of the build up; very few of us will light the match.
  • Myth: ”movements are built by heroic figurehead leaders.” Reality: movements are built by groups, organizations, and networks working together. Again, when we learn history, we are unlikely to learn about the groups, organizations, and networks, unless our history teachers are particularly conscious of the interplay of those groups. We are more likely to learn about the figureheads, the people who lit the match, such as Mohandas Gandhi, Martin Luther King, Jr., Harvey Milk, or Jim Sinclair (one of the first Autistic activists to openly counter the argument that Autism is something that needs to be cured). Yes, these figurehead leaders did important work. But they all relied on a tide of like-minded friends and allies. They did not do the work alone.
  • Myth: ”Movements require complete internal unity.” Reality: movements move forward because of and despite disagreements. It’s useful to think of disagreements as polishing stones: when we rub up against each other with our dissonant ideas, we have the possibility of mutually clarifying our collective agendas. As Hunter writes: “Successful movements always have internal disagreements and division. Working for unity is great, but so is accepting the reality that ideological purity isn’t a requirement for us to engage in continuing a movement together.” I needed to read this. I needed a reminder not to shame people who share my overall worldview but don’t work towards that worldview in the way that makes the most sense to me. Again, what is important is the work. Always forward.
  • Myth: “Movements succeed if they mobilize large, mass actions.” Reality: Mass actions may give a focal point to a growing movement, but single mass actions can be dismissed and waited out. I needed to hear this, too. Marches, protests, and boycotts are being organized all around me. Because of my own physical disabilities, I probably won’t be able to participate in marches. Rallies cost me days of strength. I can take other actions, but large, mass actions are not available to me and many other people. (Reminder to those who organize mass actions: if your mass actions aren’t accessible to disabled people, then they don’t represent the totality of the movement.) I needed to see, in print, that big, public actions aren’t the only kind of work that matters. I don’t want to dismiss the importance of these actions. But I also want to engage in work that continues a movement forward, past an initial emotional flashpoint. Civil Rights work is always, always a long game.

Hunter also clarifies the four primary roles people play in social change movements: helpers, advocates, organizers, and rebels. All four of these roles have strengths and weaknesses; all four are necessary to movements. Helpers provide direct services, such as giving food or supplies to families in need. In this way, helpers are engaged in direct action, providing resources to people who otherwise would not have access. We need helpers in every movement, but as Hunter points out, helpers need to be careful not to turn into what I’ve heard referred to in the disability rights community as ”helpy helpers,” people who “help” so much that they begin to undermine the agency of the people they are trying to help. Hunter also points out that helpers who are not aware of structural oppression tend to fall into the trap of believing that the people they help need help out of some sort of personal failing. For example: helpers might be willing to donate to families in need of food or shelter, but fail to see and engage with the reasons why these families need food or shelter as part of larger systemic practices. Helpers might be willing to participate in walks sponsored by Autism Speaks, but fail to see that Autism Speaks has a long history of devaluing Autistic people, and that Autistic people actively lead boycotts against Autism Speaks. Helpers might be willing to open doors for wheelchair users, but might not notice the vast number of doors in their community that are not mechanized and therefore limit access. Noble intentions and all that, but helpers who provide aid without thinking critically about the type of “help” they are providing can do real harm. Don’t stop giving. Do start thinking about why people are in need in the first place.

Advocates work within existing systems to ensure that people in need get the resources they are due under the law. Advocates have a specialized skill set, typically in one area of law or another, such as elder law, or civil rights law, or special education law. Advocates are also necessary for overall movements. But the drawback of being an advocate is that one can be so enmeshed in existing laws that one fails to see how the laws themselves are oppressive. This particular section hit home for me. I am trained as a Special Education advocate; I am not an attorney, but I work within the laws that pertain to Special Education. I am trained to help parents secure the best possible accommodations and education placements for their children within the confines of the law. When I was going through my training last year, I was often uneasy. As we studied small bits of the law, it would strike me that the law itself is unjust, or that lawmakers clearly did not consult with disabled people before passing the law, or that what parents are most often encouraged to do for their disabled children under the law is opposed to what actually disabled people urge us to do as a matter of agency and Civil Rights.

An example: the gold standard for “therapy” in autism circles is ABA (Applied Behavioral Analysis). Schools are required by law to provide “research-based practices” in their teaching and interventions. In education and legal circles right now, ABA is considered research-based practice. When parents have their children evaluated, assessors who diagnose autism nearly always immediately recommend an intensive program (up to 40 hours per week!) of ABA “therapy.” Schools regularly deny parents access to the number of ABA hours that have been suggested to the parents because ABA is expensive. Many, many parents seek out advocates to try to secure the number of ABA hours they think their children need, or seek compensatory damages in order to get their children into private schools that are ABA-based so that their children will have ABA-enriched lives. (There’s a case about this issue in front of the Supreme Court right now, in fact: see Endrew F. v Douglas County School District.) As part of my advocacy training, we talked about how to get the ABA hours that evaluators think children need. We did not, however, discuss the voluminous commentary provided by Autistic adults who have actually gone through ABA “therapy” and who have developed PTSD because of ABA therapies (See, for example, this crucial essay by Sparrow Rose Jones.) This was and continues to be a conflict for me. I have two Autistic children who I would never place in ABA therapy because I do not believe in compliance training. My advocate training teaches me to fight for more of this “research-based” therapy; my Disability Rights activism background encourages me to (figuratively?) burn ABA to the ground. I’m not sure yet how to reconcile this, but now I understand why I was so uncomfortable during my training. I came to advocacy as an organizer and a rebel, not from the legal background of an advocate. I came to advocacy for the Disability movement, and in order to live with myself, I need to always have the movement in the front of my mind.

Organizers, another crucial role in movement development, do what their name suggests: they bring together individuals and groups and help those groups create pressure on oppressive systems. Organizers see a need, find the people who can help with the need, bring them together, and formulate plans to address the need. I have also found myself in an organizer position, most recently last year when I co-founded TENT: Twice Exceptional Network of Texas. Clearly, movements need organizers, but organizers, too, have their drawbacks; the most significant problem for organizers is their frequent inability to step back and let the people for whom they have advocated take leadership roles in the organization. Organizers often started out as allies in a movement. A good example would be parents who care deeply about their autistic children, and put together an organization to advocate for their children. Or, for example, grandparents, such as Bob and Suzanne Wright, who founded Autism Speaks on behalf of their grandson. These children, however, grow up. These children have minds of their own, lives of their own. What is the good of advocating for our children if we do not teach them to advocate for themselves and then step aside and let them do it? What is the good of advocating for an oppressed group if we do not listen to the actual people who are oppressed? Case in point: Autism Speaks has been roundly criticized for silencing #ActuallyAutistic people within the organization. For many years, the board of Autism Speaks lacked even a single Autistic member. It is crucial for organizers to keep the movement in mind, to remember that they got started out of the wish to end a particular kind of oppression. Preventing the people for whom they advocate from taking leadership roles in the actual organization is just another kind of oppression.

Finally, there are the Rebels, the people who are willing to put themselves on the front lines, the people who will engage in marches, sit-ins, protests, and other acts of civil disobedience. Rebels are the most public face of movements. And rebels, who are always willing to act, often become impatient with the organizers, advocates, and helpers for working within already-compromised systems. But rebels need the other roles, if only to bail them out of jail and provide safe spaces for them to continue to do their work.

When we think of movements, we often associate the movements with the rebels who became famous or infamous because of their visibly bold acts. And maybe we think of the organizers. We are, however, rarely aware of all of the diversity of roles people played in working toward a specific social change. The upshot of this chapter is this: before we jump into a movement, it behooves us to identify what role we are each best suited to play. And then we should play it, contributing what we can to what others are doing, recognizing that what we each have to offer is valuable and necessary, and having as our primary goal the empowerment of the people we fight for. These steps, and the internal work they require, are the beginning of a process that can sustain a long-term movement. I’ll discuss Hunter’s next steps–forming strong groups and mounting strong campaigns–in later posts.


*I wish to thank Andrew Dell’Antonio, William Cheng, Stephanie Jensen-Moulton, and Dani Alexis Ryskamp for their rich feedback on earlier drafts of this post.



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