The Self-Advocate/Parent Dialogues, Day Three: Ari Ne’eman

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability, and autism.

Zoe and Rob disconnected spectacularly last month. If you don’t know the backstory, see Rob’s post, and Zoe’s reaction. Neither is satisfied with the way that scenario played out; they are using this space to attempt a do-over.

Today’s post, the third in the series, is from Ari Ne’eman. Ari participated in the discussions surrounding Rob’s and Zoe’s original posts, was instrumental in getting these Dialogues to happen, and suggested the format they ultimately took.

-The Editors


Dear Robert,

First, let me say that I’m glad we’re having this dialogue, and express my gratitude to Shannon and TPGA for setting it up. I hope we can continue it beyond this initial back and forth, as I suspect we’re only just starting to unpack some of these major issues. I think conversations like this tend to always start with an instinct on the part of both sides to shut down and retreat from discussion after the first exchange of very different points of view. While I understand that tendency, I see it as a mistake. Conflict drives conversations about power and privilege; it is quite literally impossible to challenge people’s assumptions about each other without running the risk of offending people. As far as I’m concerned, if we’re uncomfortable, we’re making progress and we shouldn’t stop. How about we give it another week?

We clearly have a lot in common – I’m glad you brought up Augmentative and Alternative Communication, as it is one of the advocacy issues I’ve tried to give particular focus through both ASAN and NCD, in part in recognition of my own privilege and my desire to see others get the opportunities I’ve had. One of the achievements I’m most proud of is getting AAC research priorities incorporated into the Inter-Agency Autism Coordinating Committee’s Strategic Plan for Research, and I continue to feel that every insurance mandate that gets passed that doesn’t include AAC is a tremendous wasted opportunity. I’m sure that on this and school inclusion and plenty of other issues, we could fill a book with all the things we agree about – but I don’t know how productive that would be, given that the problem that we’re having isn’t with what we agree about, it is with what we disagree about. And I have to say that I am tremendously concerned by some of the assumptions you’ve carried into your conversation with Zoe and some of the other self-advocates you’ve spoken to. As I mentioned, there is much we agree on and I’m going to trust in the dialogue we’ve set up together that you’ll see my comments for what they are — constructive criticism and
expressions of concern coming from my community, not attacks on you or any other parent.

You talk about being able to live independently as being a position of privilege – it certainly is in some contexts, but let me ask you: what makes you so sure that the people you’re talking about can? Self-advocacy
doesn’t mean the ability to talk; some of the self-advocacy movement’s most prominent voices are AAC users (a few examples here, here, and
here. Nor does it mean having no cognitive impairment — the term self-advocacy actually originated from people with intellectual disabilities, not Autistic people. I’ll be open about the fact that I have the ability to live independently, albeit with some struggle, but not all self-advocates — or even all the self-advocates you’ve spoken to in these arguments – do.

There is a very odd tendency on the part of many parent advocates to extrapolate the functional challenges of people they don’t know on the basis of their political views. Over the course of the exchanges where you’ve gone back and forth with self-advocates, I’ve watched you talk to people who struggle with everything from independent living to self-injury to communication as if they know nothing about the problems they face on a day to day basis. I am not trying to hold you accountable for not knowing these things about total strangers – but I do think you should hold some responsibility for not caring to find out, or believing that only those who are willing to elaborate upon all of their personal challenges could have the right to disagree with you.

I think the idea that any opinion that we self-advocates have must be solely the result of our personal experiences (and thus can be erased by assuming things about those experiences) can be traced back to a simple reality: while you are right that many parents very much want to see their own disabled children grow into adults who can speak, very few are interested in respecting what disabled adults outside their family have to say. We see this at length in the roles that are carved out for self-advocates at most disability conferences, most of which are overwhelmingly dominated by parents. The kind of self-advocates who are considered popular in the parent community, like Temple Grandin, are the ones who talk first and foremost about their personal stories, and mainly in the context of how they can be useful to parents raising children.

While I recognize and respect the role of disabled speakers who choose to talk about their personal lives, most of us didn’t get involved in the disability rights movement to be a resource for parents, however laudable a goal that may be. We got involved because we have opinions about how this society is approaching disability — opinions that are certainly informed by our experiences, but are not simply the result of them and shouldn’t be discounted by virtue of our background. Jim Sinclair has referred to this as the “self-narrating zoo exhibit” problem, and I’ve felt it myself quite a number of times at disability-related events. People want to hear from us, but only if what we have to say is limited to our “true life story of overcoming adversity.” Once we start to sneak in political opinions, however, the accusations of “inappropriateness” and “disrespect” fly fast and thick.

This is what Zoe is referencing when she talked about parents wanting disabled children to speak and disabled adults to shut up. It is also something that I think is readily evident to anyone who compares how parents and self-advocates get responded to when we talk about disability. If we turn on the television, we can enjoy public service announcements comparing having a child born with our disability to having a child in a fatal car accident or struck by lightning. We see ourselves freely represented as burdens on our families as the groups that represent us make pronouncements about precisely how much of an economic burden we are on society at large. All of this is viewed as legitimate because parenting a child with a disability is hard. I don’t disagree that such an experience is difficult — but respectfully, there is a limit to how much that difficulty should purchase. Some understanding and empathy? Sure. More services and support? Absolutely. Making apologies for the abuse of children? Get real.

Compare that with the response disabled people get when we respond to what are fundamentally conversations about us. I’d love to start with a different example, but I’m hard pressed to come up with one that’s better than the conversation we’re in right now or the one that sparked this dialogue in the first place. The anger we’ve seen from any type of challenge to the dominant parent narrative about disability is shocking to me and I can’t help but feel that, respectfully, it is far more indicative of “tribalism” than anything I’ve seen from the self-advocacy movement. I don’t want to make this about you though, or the initial dispute you had with Zoe, because this issue is so much larger than that. Whether it’s angry Jerry Lewis fans complaining about those ungracious Jerry’s Orphans, or parents railing against self-advocacy groups advocating for the closure of institutions, disabled people speaking about disability issues often face an almost primal backlash from those who believe themselves to be the “real” voices of the disability community.

Let’s also be honest with ourselves about another matter – nobody has attacked you that I am aware of, and the self-advocacy movement has not made a habit of questioning your parenting skills or those of other parents. This is a conversation that is deeply informed by our personal lives, but really isn’t about telling you what to do with your children. It is about us responding to things that parents and others who talk about disability say about disabled people. Through speaking and advocacy and publishing, you have sought a position of influence in the public conversation on disability, and when people criticize your statements about disability, I think it is disingenuous to say that you are only speaking about your daughter. While part of your writing is certainly a personal memoir, I don’t think you would pretend that your work isn’t also about influencing social perceptions of disability more broadly. As one commentator pointed out, the initial post that started this whole back and forth was one you made about a hypothetical parent whose child had Down syndrome, which is just as different from polymicrogyria as autism is. For that matter, you’re in the process of pioneering a twitter hashtag about how parents of disabled children all around the world have “#moreincommon.”

Don’t get me wrong – I like that you work beyond your child’s particular diagnosis, but it is a bit inconsistent to then suddenly claim that others should not be doing the same. It seems like when making broad statements about disability and disabled people, parents have great freedom to cross over diagnostic categories – but when responding to those statements, the emphasis is suddenly about how our opinions couldn’t possibly be relevant because our lives are different from those of your children. Well, of course they are. So are the lives of those with the exact same diagnosis — people are different, regardless of disability category. This response is very useful as a defense against meaningful conversation, but doesn’t make very much sense. So, let’s set aside this idea that anyone is questioning your parenting style or trying to speak for your daughter. It is a straw-man argument and it hides the real issues we’re trying to talk about.

In my opinion, the real fight here is over who disability happens to — who all the policymaking and conferences and dialogue and various other forms of hubbub are, at the end of the day, about and intended to serve. I’m glad to see you acknowledge that “the crux of the issues we’re writing about isn’t parents, it’s the person with the disability.” I think that, consciously or subconsciously, that acknowledgement does not exist
on the part of many parents or on the part of much of society. I’ll always remember a Washington Post book review I read during my freshman year of college. The writer was reviewing a recently published parent memoir and criticizing the author for not elaborating on her personal life — the words she chose to use cut to the bone:

“Moore knows, twice as well as I do, that precisely because autistic kids don’t much notice or care about the outside world, autism actually “happens” to the sentient human beings around them. The heartbreak, the drastic realignment of expectations, the fury, the terror — even the fleeting moments of elation or amusement or solidarity in the face of insurmountable weirdness — happen to the parents and the siblings.”

Some people would say that this is a lone instance and write it off. Others would say that the writer was using literary license, and that the offending language should be ignored. I think this example is more representative than most parents will give it credit for. In fact, I am less concerned by the accusation that I and others like me are not “sentient human beings” – an attack so risible as not to be worthy of a response – than by the second part of the statement claiming that my disability only really happens to parents and siblings. To me, this accurately describes the everyday dialogue of much of society about disability. As of the day of this writing, I watched the Senator from my home state give an impassioned speech condemning one of his colleagues for referring to the autism community as a ‘lobby’ – this is how he chose to do it, “What’s the lobby here? The lobby here is parents – American citizens, husbands and wives, taxpayers – who advocate for their children before their representatives.” Who’s missing from that description, I wonder?

It reminds me of a story another autistic friend of mine has told about attending a book club discussing The Curious Incident of the Dog in the Night-Time — a book written in the voice of an autistic protagonist. After bringing up that, like the fictional narrator, she was also on the autism spectrum, the librarian got a confused look on his face. After a moment’s hesitation, he quickly responded with, “Oh, so you know someone with autism?” In the world we live in, disabled people are always just around the corner — but never in the room.

When all is said and done, Robert, I think we are both going to lose out from this state of affairs. When you say that your advocacy is first and foremost for your child, I believe you. As Schuyler gets older, you may notice – if you haven’t already – that inclusion and acceptance for disabled adults is even rarer than inclusion and acceptance for disabled children. Some of that relates to the “cuteness” factor that works in favor of children’s issues as compared to those facing adults. Yet, I think a larger component many be that when the public supports children with disabilities, they feel that they are really supporting their parents. And non-disabled parents are far more likely to capture the sympathy of a predominantly non-disabled audience. Though we work to change this, we are today in a world that supports disability funding more for reasons of pity than any real commitment to the idea that disabled people have a right to exist in this world. And that has consequences, not just for culture, but also for public policy.

Earlier this year, a last-minute amendment restored over half a billion in special education funding from the House of Representative’s budget to fund the federal government. As a disability advocate and someone who has personally benefited from IDEA, I’m grateful that the funding was restored. Yet I know that across the country, programs for adults with disabilities — ranging from housing vouchers to Medicaid Home and Community Based Services — are being devastated due to the lack of similar protections. There is a reason for that. I suspect it is one that you will likely get to know all too well in the years to come.

We self-advocates are not a part of the polis of the disability community, as society writ large defines it. The roles that have been written for us are limited to being beneficiaries of others’ advocacy. And that is why – whether you like it or not — the society we live in provides you and other parents with tremendous privilege. Even if you swore off the word from now till the end of time, our culture places you in the position of shepherd and we in the position of sheep. And sheep do not get the opportunity to disagree with the shepherd. Does that seem right to you?