We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords.
The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter and blogger at ASParenting, Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate,” self-advocate Amanda Forest Vivian, blogger at I’m Somewhere Else, and autism parent Kristina Chew, who blogs at We Go With Him and Care2.com.
You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue
Our thanks, once more, to everyone who had participated in the Dialogues. We’ll wrap up with a reminder of why we hosted this series in the first place:
Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect — especially when it affects our ability to work towards common goals.
Building constructive conversations and creating real social change isn’t a garden party — it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that’s fine. You don’t have to participate in these dialogues to learn from them.
The final Dialogues post in the series is by Paula Durbin-Westby, and, fittingly, Paula is both a self-advocate and an autism parent. Paula has worked extensively with The Autistic Self-Advocacy Network, and writes at Paula C. Durbin-Westby Autistic Advocacy Blog.
I was happy to see the conversation being broadened by the inclusion of Melody’s Day Six post. At first I, and I think a number of Autistic parents, were watching the dialogue between non-disabled parents, and non-parent Autistic advocates from the vantage point of, say, a fan watching a tennis match. The ball goes back and forth but we are definitely sitting on the sidelines and not part of the action.
I am an Autistic parent. As this dialogue progresses, I feel a bit of pressure to say something to bridge the divide (somehow) between Autistics/people with disabilities and parents. At the outset, let me say that I am not writing in order to heal wounds, provide bridges, or smooth ruffled feelings. I am also not writing in order to antagonize people. As Cath Young responded to posts in Melody’s dialogue, “All activism has controversy and militant overtones to it. Change does not come easily and being meek does not get you what you want.” I do hope that something I write here, as an Autistic parent, will provide a way for Autistics (parents or not) and non-disabled parent advocates to come to a better understanding of each other. Nothing I say from here forward should be construed as claiming that all non-disabled parents or all people with disabilities do any particular thing. But I will need to make generalizations at times; otherwise there wouldn’t be much point in writing this.
I don’t tend to use the word self-advocate for myself, preferring the term disability rights activist, but if I had to make a choice between being on the “side” of “the self-advocates” or being on the side of “the parents,” I would find myself squarely in the camp of the self-advocates. This is because I always experience the world as a person with a disability, in this case autism. I can’t not be a self-advocate.
Here is the difference that propels me over into the self-advocate camp: When I am communicating with self-advocates in the disability community, even though I am a parent and most of them are not parents, we work together as equals. My competence is never questioned, even when I sometimes fail to do things as well as I wanted to, or as well as others in my community were hoping for. On the other hand, when I am communicating with non-disabled parents (and non-disabled people in general, if they know I am Autistic), too often the fact that I am a parent is not only not taken seriously, it is actually ignored or dismissed. I’d like to be wearing my “parent hat” but people keep knocking it off my head. I can’t number the times I have talked about being a parent at a meeting or conference and then listened as the other parents were addressed, or asked to make comments, or thanked, or called by name, leaving me, as a parent, completely out of the equation. The first time it happened, I thought it was a mistake. I have now come to expect it.
An interesting sub-thread in Melody’s Day Six dialogue brought up the issue of whether or not non-disabled parents are being given enough room to speak in these dialogues. At one point, the conversation turned on whether or not Melody was being seen as a parent, or whether, because she is Autistic, her parenthood was being dismissed. Part of the conversation seemed to be a misunderstanding, and the language used did not mean to limit Melody to being “just a self-advocate” (even if at points it did seem to do just that). As Ari said on Day Three, “Disabled people are always around the corner — but never in the room.” Even when we are in the room. It’s a weirdly unsettling feeling. I have had the urge to look at myself to make sure my body is still visible. Maybe I’ve inadvertently placed myself behind a potted plant! But, yes, I’m still there. I’m seen, but not seen as a parent. If it is at the end of the day at a conference, I am positioned as one of “the self-advocates” who helped “the parents” understand more about autism. Because parenting is such a huge part of who I am as a person, I can’t help feeling somewhat diminished by this sort of treatment, whether intended or not.
I also am much more likely to be treated as an overall competent person by other people with disabilities, whereas often I am treated as though I have limited understanding by non-disabled parents. Even when I do have limited understanding, there is a qualitative (and often a quantitative) difference between being always already assumed to be lacking somehow, and what I experience in my own Autistic and disability community — where a lack is something that is not already anticipated or assumed, but is discovered in the course of working together, and addressed (not always effectively, I admit, but that’s better
than the alternative).
Also, in what I am calling “my disability community,” I can frankly state what limitations I might have that are coming into play in any given situation. With the non-disabled community, if I disclose a limitation, I run the risk of being shunted to the sidelines for everything else as well as the specific limitation I have disclosed. I know parents who are on the spectrum, who are not “out” about it, who tell me privately (after looking around surreptitiously to make sure no one is listening) that they are on the spectrum but are afraid their advocacy for their children will not be taken seriously if they disclose their own disability. There are Autistic parents who do “come out” as Autistic, and are not taken seriously thereafter when they advocate for their child with the schools or with other agencies. Although I might wish that more Autistic parents would disclose their identity status, I understand completely why they choose not to. Rachel’s comment on Day Three captures the dilemma nicely:
“Three years later, I’m still the same person, but suddenly, I’ve become a member of a misunderstood, ignored, stigmatized minority — a minority in which my own assessment of my own experience is no longer given the respect it deserves, but questioned constantly by everyone from researchers to laypeople.”
In addition, if you do a search on “disabled parents” you will find all sorts of horror stories about people having their children taken away from them. If you do a search on “Autistic parents,” you will mostly not find anything, but there are a few links to things about how bad we are. Not conducive to wanting to come out of the closet. (I was also able to find a link to Melody’s AS Parenting site. Yay!)
Some parents here asked for concrete suggestions. My first suggestion is: If you know a person with a disability who is also a parent, and the topic is, at least in part, about parenting, don’t then refer to the person as a self-advocate only. That seems easy enough. Additionally, Find ways to actively engage the person (if they want to be actively engaged — do check first) as a parent, and not just as a provider of information about what it’s like for them to be Autistic so that you can apply the information to your own child..
When I read Zoe’s Day One post in this dialogue, I think “Yes!” She lists quite a few reasons why people with disabilities are disregarded, and I’ve experienced most of them. Then, when I read Robert’s post from Day Five, it at first strikes me as another “we have to present a united front or no one will get anywhere” speech. I have heard this sort of speech from people in positions of power who wield political power and hold the purse strings to various funding sources. The call to present a united front, or a reminder that “the world is watching” generally does not come from relatively disempowered self-advocates. Since the call is not disability-specific, and is sometimes heard in the context of disabilities other than developmental disabilities, it can’t be blamed entirely on people with developmental disabilities’ purported cognitive inability to grasp the importance of banding together in the public eye. I do think Robert is trying, though, especially in his Day Five post, where he suggests that parents can “defer to self-advocating voices more appropriate to the discussion.” This brings me to my second suggestion. For non-disabled parent advocates in Robert’s position, as people who do get chances to be behind the microphone, have books published, and be in the limelight:
Defer to a self-advocate (parent self-advocate or non-parent self advocate) sometimes (even one time is a start!) Invite a person with a developmental disability to do a speaking engagement in your stead (let people know you are suggesting a switch, don’t just spring it on them!) Not only that, but pay the self-advocate the same amount you would make. I can’t emphasize this enough. It sounds kind of radical as I am writing it! Don’t invite the person with a disability to speak for free, or for one-fourth of what you would make. I’ve been asked to speak for free or for expenses only, when I know that professionals and “experts” at the same conference were being paid reasonable speaker’s fees. This adult with a disability probably makes much less than you do, even if you need the money. Pay the person up front. They might not have enough in the bank to be reimbursed after the fact. Buy their plane ticket, or
better yet, invite someone from your own locality. Invite someone who is not a famous self-advocate. Invite someone who is controversial even, who might not tell their version of “how I overcame adversity” because they haven’t (or haven’t yet and perhaps never will, and being asked to do something for free that other people get paid for certainly won’t help with this) overcome adversity or because they have a different agenda or focus. If you quote a self-advocate in a book, give them a part of your royalties. You are building your book’s popularity on the foundation of self-advocate comments (if it’s that sort of book). That will really be putting your money where your mouth is. If you are part of an organization that invites people to speak but does not pay them (small parent
support group, for example), do treat the person as an equal adult. Remember, being treated as an equal does not mean not providing accommodations, when they are needed.
Because my child does not have a significant disability, some may be thinking that therefore I do not, and furthermore, cannot, advocate for your child with a more significant disability. Nothing could be further from the truth. I can, and I do, advocate for your child, as both a parent (even one who has trouble fitting in the “parent camp”) and as a disability rights advocate (self-advocate). I may not advocate for exactly what you want; you don’t advocate for exactly what I want
for my child, either. But at times, we probably both do. Since 2008, I have worked to advocate for Autistic interests, including the interests of children, who will one day be adults. I have focused primarily on the Interagency Autism Coordinating Committee (IACC). In February 2009, I once again (I had been doing this for a number of IACC meetings; sometimes it takes a bit of persistence) advocated for inclusion of a meaningful approach to AAC in the IACC Strategic Plan. Here is part of what I said:
“The Strategic Plan should recommend funding specific research initiatives into emerging promising communications technologies, both for those with no or little expressive language and for those who do have expressive language but cannot always access it reliably.”
My comments can hardly be construed as being limited to “high-functioning” people or to those who can speak. At the end of this IACC meeting, there was a discussion about including a presentation on AAC at a future IACC meeting. Although the IACC had been in existence since 2007, it took until May 2009 to have a presentation about communication, which is one of the overarching difficulties for people on the autism spectrum, as well as with other developmental and intellectual disabilities. You can find my AAC comments in the IACC archives, and also, perhaps more easily, at these links: paulacdurbinwestbyautisticblog.blogspot.com/2009/11/iacc-comments-february-4-2009.html and paulacdurbinwestbyautisticblog.blogspot.com/2009/11/may-4-2009-augmentative-and-alternative.html
I also have advocated in my home state of Virginia for people with disabilities that are more significant than mine. Virginia was contemplating slashing the budget and taking huge cuts from waivers, at the same time funding the rebuilding of institutions. Although this has nothing to do with me or my family directly, I spent time opposing these measures. A couple of blog posts related to that advocacy for your children, more than for me or my child: paulacdurbinwestbyautisticblog.blogspot.com/2010/01/virginia-budget-hearings-at-general.html and paulacdurbinwestbyautisticblog.blogspot.com/2010/03/charlottesville-daily-progress-budget.html.
Another person who advocates for your child, like it or not, is Kassiane. Suggestion:
Don’t dismiss the efforts of people with disabilities to advocate for your child. Listen to Kassiane. Listen to her truth. Whether or not she can communicate/type/speak “better” or “more,” than your child, you as a parent don’t want her to be homeless, or without health care access. You don’t want your child excluded from a class, whether a rock-climbing class or perhaps a general education class in elementary school. And, you as a parent don’t want to have to do it alone (as Kassiane all too often does) because that means that one day your child will be doing it all alone, too, not to mention that you need more allies along the way.
I was happy to see that Kassiane’s comments, which did provoke some discomfort, also encouraged a lot of supportive comments and even some concrete offers of assistance.
As a parent, I can so relate to wanting to protect a child, to ensure that accommodations are provided, that the child learns and grows. As parents, whether disabled or not, most of us would go to any length to care for our children (I am reminded of Kassiane’s caveat about abusive parenting so am not saying all).
My child is not neurologically typical, although I don’t like to write about him in detail publicly so won’t say more about him. I advocate for him when I need to, which is not as often as some other parents do, but which is necessary at times. In this respect, I can relate to other parent advocates, both with and without disabilities.
On the other hand, I can not relate to wanting to “normalize” a child. That’s something that I think is not possible or desirable. It’s a bit harder for me to place myself in the “parent camp” at times when the discussion turns on cures and normalization, because I don’t want to cure or “fix” my child and many parents (again, not all) do. Using Amanda’s terminology on Day Eight, our family fits into an ego-syntonic mold. If my son were to sneak around my room seeing what I read, it would be things like Women from
Another Planet? or ASAN’s recent Navigating College. I don’t have a lot of actual parenting books of any sort. Like Melody said, “I rarely take advice except to reassure myself of what I already know.”
Kristina’s post from Day Nine is instructive. The mother of a son who has a more significant disability in many respects than anyone who is posting here, Kristina has been open to actively learning from Autistics. Her husband Jim has recruited Autistic speakers, including some of the people who have contributed to this dialogue. To me, this seems a much more fruitful way to go about interacting than to set up a “self-advocate/parent divide.”
Finally, Autistic parent advocates have much to offer you and your child. Because of our parenting style — as Melody says “I take my life experience and apply it to my children. This is the Autistic parent way.” — we can be more tolerant of differences, in our own children and in yours, too. We might provide a model for thinking differently about parenting, children, parents, and children with disabilities. Here is something I wrote, my favorite thing I have ever written, although it is short. It’s the essence of what I do as an Autistic parent in an ego-syntonic home (aside from the food, clothing, housing, education, emotional
support, and shuttle-to-playdate things) to reduce the divide in this world between people with disabilities and people without, by promoting acceptance of
all people with disabilities, one kid at a time. Here’s the teaser: “Mommy, the (LEGO) Power Miners hire people with
disabilities. In fact, they are all autistic!” To read more, click
Thank you to Thinking Person’s Guide to Autism for holding these dialogues. Thank you also to people on both sides of the “divide” for being courageous in telling your truths and courteous in how you have responded to each other. It’s not always easy (it never is, actually!) to open ourselves to really listening to points of view that initially seems radically divergent from our own. I was going to close by saying that I think people have done a great job of remaining respectful and listening to each other, but that seems too prescriptive. Some people are probably not doing a great job of it and I just have not seen or noticed it. What has bothered some people has not bothered others, and vice versa, as several people have noted. The important thing is that the
dialogues are being held, and hopefully people will have learned things from each other.