Friday, September 30, 2011

The Self-Advocate/Parent Dialogues, Day Ten: Paula C. Durbin-Westby

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.

-The Editors

----

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 here: www.shiftjournal.com/2010/10/28/from-the-pro-neurodiversity-trenches

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.

Thursday, September 29, 2011

The Self-Advocate/Parent Dialogues, Day Nine: Kristina Chew

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," and self-advocate Amanda Forest Vivian, blogger at I'm Somewhere Else.

You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue.

Today's post is by autism parent Kristina Chew, who blogs at We Go With Him and Care2.com.

-The Editors

----

What A Parent Can Learn From This Dialogue

As I started teaching my first class (8am, Elementary Latin) of the 2011-2012 school year, the thought occurred to me: The freshmen students in the first few rows are just a few years older than my now-14-year-old son Charlie. And then I thought, in just a few years, he'll be the same age as them. And then, one day -- he'll be older than them.

These are thoughts I've long avoided. While more and more students on the autism spectrum are going on to college, and more and more institutions of higher learning are only starting programs and offering accommodations and services, college is still not a possibility for Charlie. I'm the first to tell you he is one intelligent, observant kid, but academic subjects are not where he excels in school. Charlie started the secondary school program at his county autism center this past September; his curriculum is increasingly vocational and functional and meant to prepare him for that big day when school ends for him at the age of 21. Every day, Charlie's teachers and my husband Jim and I do all we can to prepare him for a job and for life after that day.

When I wrote some years ago about college not being likely for Charlie, some felt that I was being too limited in my hopes for him, too presumptive of what an autistic child can achieve; that I was somehow "writing off" possibilities for Charlie.

Of course, I was only speaking about Charlie's situation. As Melody Latimer reminds us, if you have met one individual on the autism spectrum, you have met one individual. College is a fabulous goal and achievement for many, many students on the spectrum. The skills and possibilities that Charlie's education are preparing him for are equally notable and, for Charlie, require just as much sustained study and patient learning as it takes to prepare for the SAT. While numerous studies make it clear that college graduates enjoy benefits, including higher lifetime earnings, many who start college (at my own college, indeed) do not finish, sometimes finding that other choices better suit their learning styles and abilities.

Ironically, when Charlie was first diagnosed with autism in 1999, my first thought was, I have to admit, "but how will this affect his college prospects!" I'm more than bemused by my reaction. I was raised in an Asian American family in which going to college was a sine qua non and the prospect of raising a child with learning challenges was terrifying. Back in those days, I had no idea what special education was, much less an IEP or inclusion. Raising Charlie has been a whole new education for me; too often I feel that I'm showing up for a test only to realize that the material is something completely different than what I studied.

Learning how to be Charlie's mother has become a life-long education for me, harder than the undergraduate and graduate studies I pursued years ago, and far more challenging than the lessons in ancient Greek grammar I teach my students. In the early days Jim and I relied on behaviorists and doctors. Along the way -- just around the time Charlie was getting taller than me, in 2005 -- we started reading the words of, and, fortuitously, meeting and talking to, more and more individuals on the autism spectrum. Jim and I met Kassiane Sibley in 2005 after Jim invited her to speak at a conference on autism and advocacy he had organized at Fordham University in October of that year. ASAN Vice-President Scott Robertson attended the conference and we later met Ari Ne'eman, too; for some months in 2008 - 2009, I was very fortunate to co-blog with Dora Raymaker at Change.org. We became more and more aware of friends and relatives who are on the spectrum, though undiagnosed.

Through these meetings and the ensuing conversations, some face to face and some via email and Skype, our sense of the neurodiversity of the world around us came better into focus. Jim, who has struggled all his life with severe ADHD, had long felt that he was part of such a country of difference. I don't line things up on the floor in patterns like Charlie, but I share his at times obsessive inclination for order and am quite aware that such is why I have always felt a curious comfort in working my way through the paradigms of ancient Greek verbs in three difference voices (active, middle, and passive) and five different moods (indicative, subjunctive, optative, imperative, infinitive).

Aware of our own struggles to make our way in the world, we have been all the more conscious of how much greater are Charlie's. Yes I would love it if Charlie could open one of the too many books in this house and start reading. I do maintain the ready belief that one day he will, and that mayhap he already can, but just has yet to reveal this ability. Trying to help Charlie in his struggles and challenges has made me a much better teacher of my college students, especially those who themselves struggle not only to focus in class, but to get to class. I have become aware that sometimes the reasons an essay is not done is due to some unexpressed, hard-to-put-into -words reason, just as what Charlie tells us in words is too often not all that he would like to say.

As the parent of a child on the severe end of the autism spectrum, it is necessary for me to be honest and realistic about where Charlie is, academically and in other areas. Charlie will be 21 years old soon, school will end and a whole very unknown world will begin for him and for Jim and me. We would be irresponsible parents not to start preparing now, based on where Charlie is today. There are seniors in my 8am Elementary Latin class too and they face an extremely challenging job market in a sluggish economy. College has prepared them well, but -- just as all the training and education Charlie is now receiving -- it offers no guarantees. Like Charlie, they have a long journey ahead of them, to find their place in the world.

A teacher learns the most from her students and all of mine have indeed taught me much about teaching, learning, and being human. So has a great deal of my education in how to help Charlie been deepened thanks to attending to the voices of those on the autism spectrum who have alerted me to ways of thinking and experiencing the sensory, social world that I need to know. I still have much, much more to learn to better support our boy as he walks on the very long road unrolling before him, as we try to keep pace with his ever quickening, distinctive stride.

Wednesday, September 28, 2011

The Self-Advocate/Parent Dialogues, Day Eight: Amanda Forest Vivian

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, and Kassiane of Radical Neurodivergence Speaking, who prefers the term "advocate." Stay tuned for two more autism parent posts: One from a neurotypical perspective, and one from an Autistic perspective.

You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue.

Today's post is by self-advocate Amanda Forest Vivian, blogger at I'm Somewhere Else.

-The Editors

----

This is just a theory, so be gentle. But I think a lot of problems between non-disabled people and disabled people might have to do with the fact that for most born-disabled people, their disability is ego-syntonic (integrated with their self-image).

One!

Ego-dystonic is an psych term for an aspect of a person that doesn’t fit their self-image. For example, if someone lost their legs in an accident, they would probably wake up the next day and see a body that didn’t seem to them like their real body. On the other hand, if someone is born without legs their disability is usually ego-syntonic, so they feel as attached to their body as anyone else.  They don’t feel the same distress that the first person might.

Two!

It’s hard for anyone to put themselves so completely in another person’s shoes that they can relate to not only their day-to-day experiences but what it would be like to be attached to those experiences because they are yours. Also, we don’t live in a society that encourages non-disabled people to understand this.

One symptom of this problem is disability simulations. The conventional disability simulation consists of a person who can walk trying to get around in a wheelchair, or a person who can see wearing a blindfold. These simulations are criticized because they don’t really simulate disability. A person can come away with a feeling like, “It would be horrible to be blind,” because as someone who is used to being sighted, they found blindness to be much more scary, overwhelming, and unnatural than an actual blind person does. An hourlong disability doesn’t resemble a real disability any more than the lack of disability does.

I think you can see the same issue in mainstream fiction, written mostly by non-disabled people, that features disabled characters. Disabled fictional characters often seem to have an acquired disability, a fairly recent one. They remember being non-disabled, and it’s taken as a given that a non-disabled version of them is their “real” self, and they want to be that person again. The most obvious example I can think of is the movie Avatar, in which a guy finds it less ego-dystonic to be a ten-foot-tall blue alien than to be paraplegic.

When I say this is not a realistic portrayal of how most people feel about their disabilities, I’m not trying to claim that being disabled is super fun or that it wouldn’t objectively be easier to be non-disabled (that’s the definition of disability). But I am trying to say that disability feels very different to disabled and non-disabled people.

Obviously many non-disabled people don’t have the same kind of distress reaction to disability that I’m describing, and some disabled people do. But I think it’s a significant enough trend that it amounts to a kind of culture shock.

Three!

Many non-disabled people who are having kids have formed not only a personal self-image that is non-disabled, but a family self-image that doesn’t contain any disabled kids. Then if they have a kid who is disabled, they feel that they lost something.

When you think about it, this means the kid is growing up in a situation where they and their parents are having a massively different experience of the kid’s life. To the parent, certain facts about the kid’s life equal a loss, but from the kid’s perspective nothing has been lost and these are just facts.

This difference in perspective can lead to some practical problems. Kids tend to be shortsighted. If a kid really loves sitting around making moaning noises, probably their entire thought process about this is, “I found something fun to do. Awesome.”

A parent by definition is thinking something more complicated. “I’m glad that my kid has such an easy way to get into a good mood. But, no one in our house can even read a book because this is so loud, and I’m also worried that my kid isn’t putting much time into learning to do new things.”

Or the kid is having trouble learning to read, gets stressed, and decides it would be better to watch movies instead. Whereas the parent knows that learning to read is important, and shouldn’t be given up so quickly just because it seems hard.

There has to be this difference in perspective between parents and kids -- whether or not the kid is disabled -- because it’s normal for parents to be pushing their kids to learn and do new things.  Ideally, as the kid grows up they will come closer to the parent’s perspective, and become an adult who’s motivated to not just go for instant gratification but to attempt new and challenging things.

Four!

The problem is that when a parent is experiencing a kid’s disability as a loss, the gap between the kid’s and the parent’s perspective can get so huge as to be insurmountable. If a kid’s moaning is heartbreaking to the parent because it’s a sign of disability, and the kid thinks moaning is the coolest thing ever, these are two people who have almost nothing in common.

The kid’s behavior feels like an attack to the parent. Doesn’t the kid understand that learning to read would be a way of moving away from this really bad fact of being disabled, which has caused everyone so much sadness? The parent’s behavior feels like an attack to the kid. If the parent is so personally hurt by the kid trying to do something they love, does that mean they don’t care if the kid is happy?

In this situation, there is a built-in distance and I think the distance can get bigger the closer the parent and child are. If the parent is attentive enough that they know every single thing that is challenging or different about the child’s life, and every one of those things cuts like a knife ... well, I don’t exactly know how to put this into words, but for me it’s like the closer my parents get to the details of my experience, the less me there is, if you know what I mean. They start giving off a sadness that isn’t how I feel, but is so bottomless that it has the effect of terrifying and overwhelming my actual feelings, which are not that existential.

I often feel like the best way to keep my parents on the same page emotionally as I am is to keep things from them. Actually now that I write this down it sounds really stupid and dangerous, but I guess my reasoning process is that I am always a little worried about myself, and if my parents don’t know much about what’s going on, they are a little worried about me too. That keeps us all the same and we can relate to each other. If they found out some of the things I’m worried about, they would be ten times as worried as I am, and maybe this is true of most parents regardless of anyone’s disability status.  But it is something I think about when people talk about being their kid’s voice.

Five!

When I was a kid, I liked to sneak around my parents’ room and read all their books about kids.  Some of them were about kids in general and some were about kids with autism and learning disabilities.  One had a title that I think was supposed to be encouraging: “How Your Child *IS* Smart.” My parents didn’t really like me reading these books so I had to keep it on the down low, but when I was thirteen I discovered a book about Indigo Children. I couldn’t help but ask them why they had it.

My dad looked at me and said really solemnly, “We’ll try anything to help you.”

Soon after, I had an experience that I remember really well.  Our dog died, and the next day my parents and I went out to dinner. When we got home and were getting out of the car, I got hit with an almost physical guilt about being an only child. Now that the dog was gone, there were no extra parts in the family unit that could distract my parents from what was wrong with me. It seemed so horrible, just them, me, and the Sadness.

As I got older I started to resent what my dad had said about the Indigo Children book. “We’ll try anything to help” -- what was I, a serial murderer? I was just a kid who people didn’t much like having around. This was most viciously obvious when I was at school, and I was the one who had to be there, not my parents  I felt like if anyone had the right to be desperately concerned about the situation, it was me. But I wasn’t as concerned as they were.

I recently asked my dad why he said that, and it turned out that he doesn’t think I am a serial murderer, but was just try to say something positive. A psychologist had actually advised my dad that this was the right thing to say if I asked why my parents had so many books or why I went to so many doctors.  Which is actually where I’m going with whatever section of the post this is.

It might seem like saying “we’ll do anything to help you” or “we tried everything” would make a kid feel like you really adore them, but this can actually make someone feel horrible. If you’ve always been disabled, disability doesn’t really feel like an emergency, nor does it really feel separable from who you are. So it can just feel like, if someone would be desperate enough to try everything you must be sort of a disaster as a human.

Six!

I really love this interview with Norman Kunc, an advocate who has cerebral palsy: www.normemma.com/articles/arstairs.htm  He’s thirty years older than me, but when he talks about how his childhood made him “declare war on his own body,” that couldn’t be more familiar. I don’t have a mobility disability, but autism can also live pretty unmistakably in the body, which is why I used to only want to meet people when I was sitting down.

Kunc came to this big realization when he was in university: “I had the right to be disabled.” This line has stuck in my head, both because I find it incredibly moving and because I know that a lot of people would find it about as bizarre as saying, “I have the right to have a headache.” Wow, great, a headache! Where can I sign up?

But I already am disabled, so it is a right I want. If I don’t have the right to be disabled, it means I have to function like I’m not disabled which I can’t do. Or I have to try to function like I’m not disabled to the greatest extent of my powers, but that isn’t what I want to put all my life force into. I want to be disabled because then I can have a real life.

I feel really nervous when I hear that a kid with autism has “lost the diagnosis” because they stopped having stereotypical traits of autism that people could see. Because to me it means that the kid has done and is continuing to do all this work, but they’ve lost the word that would explain that they’re doing a lot of work. Instead they’re just a normal kid who is really tired and sometimes has to keep this secret stash of movement and feeling because it doesn’t fit the person they’re supposed to be.

Seven!

To get back to the culture shock I was talking about, I think that some non-disabled people don’t understand disabled people having these kinds of feelings, because it’s hard to understand that disability is sort of in us, and not just something that happens. Which to make my way back around to my point is why someone might think it is comforting to tell a disabled kid, “We’ll try anything to help you,” but actually make the kid feel like some kind of natural disaster.

 It also explains why some other “nice things to say to a disabled person” get lost in translation -- for example, “No, you’re so smart!” if a disabled person describes a problem, or the classic, “You’re not really disabled, you just have trouble with [area of impairment].”  Or when I say I’m disabled and the person says, “Aww! Don’t put yourself down!”

My idea isn’t to chew out people who use these phrases because I know it is meant nicely on their end, but I wish they would stop.  I want to be disabled, or at least, since I am disabled, I want to be.

Eight!

Because disability seems so familiar and, well, basically, good to me, sometimes I don’t feel comfortable with efforts to get rid of disabilities. I don’t want to say I am anti-cure, but I wouldn’t want to live there. I know a lot of awesome people with disabilities, and if they didn’t have disabilities their life experiences and personalities would be different. They might still be an awesome person, but not the same particular one.

I don’t suppose a cured kid would be upset about being different from how they would have been, because that version of them never existed.  It’s just as biased for me to want some people to have disabilities as it is to think that no one should have disabilities. I don’t think that it is perverse for me to feel the way I do, though, but I know some non-disabled people think it is perverse.

Nine!

Kassiane’s post had to be posted a day early because I took too long to finish thinking about this. Do you think it’s just an interesting exercise, or might some of these ideas begin to explain a problem you’ve had with someone of a different disability status?

Tuesday, September 27, 2011

The Advocate/Parent Dialogues, Day Seven: Kassiane

We held a dialogue series last 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.

Readers let us know that they wanted more, and more perspectives, so we're continuing the series through this week, and original participants Zoe, Rob, and Ari are stepping back and letting other voices have the floor. 

This week's first post was from a representative of both parties: Melody Latimer, director of The Autistic Self-Advocacy Network's Dallas-Ft. Worth chapter, and blogger at ASParenting. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue

For those who note that these Dialogues are a challenging and thorny process, and wonder about the usefulness of participation, consider a comment left on Melody's post by OutOutOut:
"I'm tired of the fighting, too. I really am. Still, I think the only way we're going to 'move forward' is if we get all of these painful issues out in the open, and try to deal with them head-on. As the saying goes, "Peace at any price is no peace at all". We'll never get to a place of true acceptance and camaraderie if we continue to sweep the problems under the rug."
Today's post is from Kassiane of Radical Neurodivergence Speaking, who prefers the term "advocate."

----

Dear Parents,

Believe it or not, I am on your kids' side. I want what is best for your kids too. That's why I do what I do -- so your sons and daughters inherit a world that is less hostile and easier to navigate than the one I grew into. Your individual advocacy on behalf of your children is your job, and to my knowledge no one is saying it isn't. But in terms of general disability rights work? That is the domain of disabled people, and it needs to be recognized as such.

Before you get all mad at me, let me tell you a story:

I spent the first six months or so of 2004 living at a YWCA shelter. Not all parents work for their children's welfare, you see, and I am speaking from personal experience there. I was going to school and working very part time coaching and my parents decided they didn't want me anymore (this after years and years of abuse. Old story, you probably know it).

So the first thing one does when one lives at a Y is try to get the social service safety net going, right? Here's the thing: I can't do that. It is a lot of paperwork, a lot of redundancy, a lot of waiting around in a sensorily terrible environment and then talking to a terse person who just wants you to go away in an even more terrible environment. People from the shelter helped, but basically it was horrible and difficult and awful.

Since I was (and am) disabled in addition to homeless, I also explored the options available for people with disabilities. We had an ARC and a Center for Independent Living (CIL).

Guess what?

I could not get a single solitary service from either of these places. The CIL barely knew what autism was; they dealt mostly in physical disabilities and they were less than helpful in filling out forms or narrowing choices down for housing or anything -- things I desperately need help with. And the ARC?

Oh god, the ARC. Let me tell you what they said: “we usually deal with clients' parents.” I was there because I very suddenly had no parental or other net. But they wouldn't help me, even a little, because my parents were very much not in the picture. They told me that I was too smart for most of their stuff, but they wouldn't help even a little with anything else because they interface with parents rather than clients.

In those six months, I did not fall through the cracks -- I was shoved into the cracks. The paradigm that only parents can advocate for disabled people could very easily have killed me, between undertreated medical issues and a fundamental inability to get done the things that needed doing for basic survival. It was too much. I could not do it alone, and there was no one to turn to for help. Not all parents are good; please please please acknowledge that, even if it's just a quiet whisper.

A lot of autistic and otherwise disabled people are shoved into the cracks by systems like this. It scares the everliving snot out of me that the status quo is that the parents of adults with disabilities are the only gateway to services in many areas. The status is not quo, in the words of Doctor Horrible. I got lucky -- many many other people living my 2004 situation aren't going to even make it to the 2005 situation, much less the 2011.

It is absolutely your job to advocate for your minor child. Please don't take this as me saying it isn't -- I know my parents are screwed up. I know most of you are not. But please, don't let your knee-jerk reaction be to assume that all parents are like you. They aren't. Some are like mine. Please don't erase that by saying that you know no one like that. Please don't diminish it by assuming that if I call out a societal problem or a possibly problematic attitude or behavior that I am unable to separate my upbringing from what you are doing for your children. I know the difference -- I wouldn't be engaging at all if I thought most or even many parents were like mine.

We need to be a louder voice so that this doesn't happen. It'd be extremely helpful if the group with more power -- parents -- acknowledged that this is a problem and that it does happen. The cracks are an unpleasant place to be.

And I do want allies. Your primary responsibility is to your children, obviously. But I know I wouldn't turn down support in other things we do, either. I fight a number of uncomfortable battles so that your children won't have to (at least ideally). It is hard and it sucks and I mostly have to do it alone, for autistics helping autistics are taken exactly as not seriously as an autistic alone most of the time. There are times I would love so much for a supportive set of allies, instead of my choices “be alone” or “hear how you are so lucky that you can even go to school/ride the bus/go dancing/blow your nose and that therefore your issue does not matter.” Crappy dilemma, huh?

Story time, round Two!

Last term, I signed up for a rock climbing class at a community college. I get accommodations through Disability Services, so I requested a meeting with the instructor before the term started. He declined a meeting-which is probably the first bad sign. So I sent him my standard “I have partial complex seizures and this is what it means” sheet. And he was cool with that.

Some context for what happens next: I am pretty athletic. OK, so I used to be a high level gymnast. Climbing a fake rock wall while wearing a harness and a rope that is tethered to someone on the ground is something it is absolutely reasonable to expect I can do. Also, I am left handed, which shouldn't have even been a thing, but it was. Continuing...

The first day of class I was trying to translate the belay technique from right handed to left handed. No big deal, except that the instructor seemed completely baffled by the idea and kept trying to make me do it the “right way.” A bit frustrating, but whatever. I was thinking about making the equipment and motion work for me rather than thinking about making my body language relatively normal. Horror of horrors, I flapped.

You would think that every time an autistic flapped a kitten died or something, based on the instructor's reaction. He got in my face yelling about bad energy, I got stuttery (as I do when large loud men are in my face), and I blurted out that I'm autistic.

Then everything hit the fan. It started with “I don't think you are capable of assessing the risk involved in rock climbing. Maybe yoga would be more your speed.” Suddenly this man who was OK with the idea of a student having a seizure in class developed an intense concern about safety.

This has become a big battle, like your IEP battles. It started with “I don't think you can assess the risks inherent in rock climbing; maybe yoga would be more your speed” and progressed to convincing four of my school's deans that I am a safety risk to myself and other students. Why? Because I am autistic. Because the instructor doesn't believe I understand what he says, though I can paraphrase, because I do not look at him and I rock back and forth. My very existence as an autistic adult is apparently dangerous.

Fighting the school's discrimination and bullying is the hardest thing I have ever done. It's me versus pretty literally the entire power structure of the school. This is not my idea of a good time. It is a legal battle and an infrastructure battle and I lose sleep and appetite over it and I hate it. Giving up would be so much easier.

But I don't. I fight this fight so that the next kid doesn't have to. I know several disabled young people who would be stuck with this fight in three to five years if I don't do it now. There are countless others who I don't know who would be stuck with it if I don't do it now. This bullying stops here and now.

And it is hard. And I would love allies, but instead of allies what I get is “you're lucky you can take a class like that at all, my child can't” or “well, maybe you shouldn't do that, anyway. They just are looking out for everyone” or “I understand that you are upset, but isn't fighting it just too much stress?”

This kind of dismissiveness is not helpful. It does not help me. It shuts down changes that will benefit the next generation. It spreads that rift just a little further. It increases the power imbalance ever so slightly.

This is not what I want for me, and it isn't what I want for people like me. As long as advocacy is seen as a limited resource, though, and a battle for who can be heard the most on the most issues, it will be. The disabled community and the parent community have a lot to offer each other besides hostility -- there's enough of that already.

Neurodivergently yours,

Kassiane

Monday, September 26, 2011

The Self-Advocate/Parent Dialogues, Day Six: Melody Latimer

We held a dialogue series last 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, You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue

Readers let us know that they wanted more, and more perspectives, so we're going to continue the series through this week. Original participants Zoe, Rob, and Ari are stepping back and letting other voices have the floor.

Today's post is from Melody Latimer, director of The Autistic Self-Advocacy Network's Dallas-Ft. Worth chapter, and blogger at ASParenting.


-The Editors

----

My favorite Autism “quote” is one we all know too well. “When you know one Autistic person, you know one Autistic person.” Given, there are variations to this, but this is the way I like to phrase it. In my world, before joining the Parent Autism community and the Autistic Neurodiversity community, I knew four people with autism: my brother, myself, and my two children.

It’s true that what divides us creates rifts. Not having each other’s experiences divides us. Not seeing common ground, sometimes, though rarely in my opinion, divides us. Ignoring each other even in the slightest with phrases like, “You’re not like my child.” “That’s not what works for my family.” and “You can’t understand my perspective.”

There are a host of us who do understand your perspective. There are a host of us who have to be in both boats. What I have learned will come as no shock to that host. First, yes, a parent knows their child best, but you know who knows that child even better? The child. As an Autistic adult, I know myself best of all. I know my children quite well, but they are not me. It may come as a shock, but in my family none of us presents the same way. I’m quiet but extroverted. My oldest is quiet and introverted. My youngest is loud and extroverted. There are variations on every diagnostic criteria. There are variations within each Autistic characteristic.

Why am I saying this? Because it’s essential to understanding, for both sides. We are not all like each other. I know we all know that. The issues come when we forget that and apply that and talk amongst ourselves. Just because an Autistic adult is giving advice doesn’t mean they assume they are just like your child. This wasn’t in the conversation, but I understand that it is one of many issues that faces both these communities. We all make comparisons throughout our lives based on our experiences. NTs (Neurotypicals) do it, PWDs (Persons With Disabilities) do it, ASDs (Autism Spectrum Disorders folks) do it. We give advice coming from our unique direction in life. It’s then taking that advice and applying it to your situation. That is not the job of the one giving advice, but of the one receiving advice.

That is not where I’m coming from, though. I rarely take advice except to reassure myself of what I already know. I take my life experience and apply it to my children. This is the Autistic parent way. But what is happening here in this discussion is not about how I raise my kids, how you raise yours, or how the Autistic community thinks they should be raised. That’s a parent’s choice and will always be a parent’s choice. There is no one way to raise a child, and we all know that. Actually, even within families, each child has to be raised differently, even if it’s just subtle variations.

No, what’s going on here is about advocating. Who has the right to advocate? Whose voice should be heard the loudest? Whose voice is being heard? Parent voices undeniably are being heard the loudest. As an Autistic parent, I’m aware of this in a way most people aren’t. When I put my “parent hat” on, as long as I say nothing about my own Autism, I am heard. I’m heard loud and far and can affect real change. When I put my “Autistic hat” on, it’s no longer about the change. I’m supposed to be a puppet on parade, telling my life story, how I got to where I am. My life story isn’t going to tell you what will work for your child. My life story is about me, and me alone. My brother’s life story isn’t even the same. The way each of us was raised, our experiences, our lives are different.

Then there is the idea of having a “parent hat” and an “Autistic hat”. I am not just a parent. I am not just Autistic. I am an Autistic parent. There is no difference. In the same, advocacy, parent advocacy, self-advocacy, policy advocacy, they are the same. When I go into my children’s school to advocate for their rights, I’m advocating for my rights, I’m advocating for their rights and I’m advocating for the rights of those who will come after them. There is no divide. I am letting my wants known, I’m letting my children’s needs known, and while I’m at it, I explain how this helps my population. The changes I ask for are not changes for just my little family. What I do, what I ask for, affects each and every family that comes after me.

Same with self-advocating. Making myself known as an Autistic adult, explaining why I don’t want to see a cure for Autism, explaining how life was for me, is for each of my children, I am not advocating for myself, not really. I’m advocating, whether to other families, to an audience or in a one-on-one conversation, for the entire population. I don’t make a divide between those who bang their heads, smear their poop, and can’t talk. What helps one, helps all. Effective communication, emotional and sensory awareness, and support.

I get upset seeing both sides argue, even when I’m the one arguing. Because in the end, we should all want the same for our population. Happiness and control over our lives. What that means for each of us is different. The path we chose to get there is different because our lives are different.

So how can each side help the other? Parents, when you are called on to advocate publicly, privately, in your communities or in your own home, invoke that self-advocate you know. You know what we believe in, if you are listening. You know we have a life of experience you don’t. Use it. If you want our voices to be heard in the conversation, then give our voices a platform. We aren’t given that platform by the media, by society and sometimes not even within our own communities. As Zoe said, you are in the place of privilege. Use that privilege to give us a platform. If you don’t, no one else will.

Self-advocates, be willing to stand with the parents. They are our only hope to be heard. We know we’re not seen as equals in the conversation. We know we’re used to show, but not practice inclusion. We know the tokenism that occurs. It’s not the parents’ fault, for the most part. It’s an upward battle, but the only way we are going to get to the top, have our voices heard, is to be lifted up because we are the silent minority.

Saturday, September 24, 2011

The Self-Advocate/Parent Dialogues: Intermission

We are going to continue the Dialogues, at least through next week. (The entire series can be found at thinkingautismguide.blogspot.com/search/label/dialogue.) We've heard from readers that they'd like to see Dialogues posts from perspectives including self-advocates parenting children with disabilities, late-diagnosed self-advocates, and parents of children with autism. And, as commenter, advocate, and parent Cheri wrote in regards to the Day Five post from Robert Rummel-Hudson:
"I imagine that engaging in this dialogue may have been uncomfortable, and I commend every one of you for agreeing to do it. This final post leaves me wanting -- hoping -- for more. I don't know about anyone else, but I'm not sensing any closure here."
We don't have closure. We need to continue the conversation. How? Self-advocate Rachel Cohen-Rottenberg also commented on the Day Five post, with insights as to how she has synthesized and recommends approaching the Dialogues overall (she is not addressing a specific post or commentary):
"One of the things might help further dialogue is for all sides to remember that we are all exhausted, hurt, angered, frustrated, and stressed by the requirements of advocacy. Being stressed makes it very difficult to listen, but it makes it all the more necessary, too.

"Nondisabled parents, I think, need to be more mindful that what they do for their children is what we adult autistics have to do every single day of our lives: stand up, get dismissed, stand up, run headlong into ignorance, stand up, explain the situation in minute detail, get ignored, stand up, get a few crumbs, stand up, get the support of those who have been there, stand up, get dismissed, over and over and over. Parents who have been through this know that it's hell; what they sometimes forget is that, our ability to articulate our thoughts notwithstanding, it's hell for us, too. I may have a talent for words, but it did me no good when I advocated for critical educational accommodations with all the eloquence at my disposal, only to be told that if I somehow became less disabled, I should let them know. And all the blog posts in the world do me no good at all when I attempt to find services that simply do not exist.

"By the same token, I think that sometimes, we adult autistics who have had horrendous experiences at the hands of our parents and at the hands of the larger world, forget that while parents have the privilege of being nondisabled, they get chewed up by the educational system, by the legal system, and by the medical system on a daily basis, and find that they have nothing like the privilege given to parents of nondisabled children. Parents of disabled kids have to fight for things that other parents take completely for granted. They are marginalized within their own communities, and they live with a tremendous amount of fear.

"It's not their fault that they have privilege that we do not. It's not their fault that they didn't realize they had that privilege. It's not their fault that they're getting up to speed on how to handle that privilege and not unintentionally abuse it. And it's not their fault that they feel lost about how to fight the very fact of privilege at all. They are new to this, just as we were once new to this. They are learning, just as we are learning.

"Do I wish we'd all gotten there yesterday? Yes, of course. There is a lot of suffering going on, and it's hard to work this process in the face of that. But we have to work it. The larger society has left us the crumbs after the feast, and it only helps those who couldn't care less about us to keep fighting with one another over the crumbs. We need to get together and loudly proclaim that we have the right to be at the table and to eat to our heart's content."
Some articles and posts I'd recommend reading before the next Dialogue entry:
Continuing the Dialogues is important, no matter how hard it gets or what fractures appear. As TPGA editor, self-advocate, and autism parent Carol Greenburg says:
"The thing about conflict resolution is that it requires conflict, which is messy, no matter how sensitively it's handled. Just because it's inevitable doesn't mean it's not annoying. In fact, in my experience, speaking as an individual unable to fully represent any community of any kind, the more annoying the task, the more important it is." 
This has been, and will continue to be, an imperfect process. It will continue to be hard work. It will also require a lot of tolerance for the mess and the imperfection, and eyes on the larger prizes of dialogue and constructive conversations. -SR

Friday, September 23, 2011

The Self-Advocate/Parent Dialogues, Day Five: Robert Rummel-Hudson

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.

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. 
Robert Rummel-Hudson has the floor again today.

All the participants -- writers and commenters -- have our gratitude. Not every exchange has led to greater understanding, but many did, and that could not have happened without you.

-The Editors

---- 

The world is watching us.

The world is watching as many parent-advocates and disability self-advocates fail to hear each other, fail to validate each other's very real work and very powerful experiences, fail to recognize the life pieces we share, fail to build on those commonalities.

The world is watching as some of our communities become tribes, as healthy debate on issues like vaccines, cures, inclusion, cochlear implants, privilege, and language turn into fights.  The world is watching as we feed on each other.

The world is watching, but the world isn't seeing our commonalities. And much of the world is more than happy to deny us a place at the table of human dignity. To the world, we probably look happy enough fighting over the scraps from that table. We're certainly busy doing so.

Building communities is hard work. It's hard because our commonalities are deteriorated by the things that divide us, certainly, but they are also eroded by the thing that we all really do have in common: our humanity. Our human failures, our egos, our fear of the unknown, our inability to view the world from another perspective. We're not characters in a movie. We don't represent specific archetypes that never change or grow. Like everyone else, parent-advocates and disability self-advocates are evolving. But evolution is slow, it's uneven and probably not much fun to watch.

For me, that evolutionary process began in earnest in 2003, when Schuyler was diagnosed, and it has continued in fits and starts ever since. I'm hopeful that in the past few weeks, my eyes have been opened by my interactions with people like Zoe and Ari and others like ThAutcast's Landon Bryce.  When Mr. Bryce suggested earlier in the week that I'm clueless about autism, that statement was in fact one hundred percent accurate. I will own up to that without hesitation. And Mr. Bryce wasn't being dismissive; indeed, he went on to put together an essay that spoke to the heart of my own issues.  It was a much appreciated gesture. If I want to work as an advocate for a larger social change, I need to do so with a broader understanding than just that of a parent-advocate.

Parent-advocates are well served by broadening our understanding, because Zoe is right. We do receive a disproportionate share of "authority" on disability issues, as assigned by the media and society at large. I don't think it's always inappropriate, to be honest, but the fact remains that our voices are being heard in a great number of places where a self-advocate's voice would better serve the cause. And not just for their life experiences, but for their passions and their opinions and most of all their right and absolute ability to guide policy-making.

It seems to me that there are at least two ways to affect positive change in this imbalance. The first seems obvious, albeit complicated in its implementation. Persons with disabilities, particularly adults, deserve a much higher profile and a much greater degree of authority when disability issues are being discussed and when policy is being made. That goes beyond the autism community, too. It is imperative that persons with communication obstacles be heard, and on their own terms.

The second approach to improving the quality of disability dialogue can happen immediately.  When parents are called upon to advocate, when we are put in front of a microphone or when our books are published, when we find ourselves representing this thing that we hopefully refer to as a "disability community," we can quite simply do so in a more inclusive and informed way. And when we have the opportunity to do so, we can defer to self-advocating voices more appropriate to the discussion.

One thing is certain, in a world where so few things are. Parent-advocates will continue to advocate, imperfectly or otherwise. You know that. Parent-advocates do not find it easy to back down, and that's a trait that has largely served us and our kids very well. We just need to advocate in a smarter and more inclusive way, and we need to better understand the world of adults with disabilities. Not just because it's fair, and not just because it makes us better advocates, but also because it is going to make us better parents.

This week, the world is watching this dialogue. I honestly don't know if that world sees the end of hope for a larger and more effective advocacy movement, or the new possibilities that might come from further and better dialogue. I have serious doubts, but I also have hope. And as a rule, I usually put my money on hope.

Thursday, September 22, 2011

The Self-Advocate/Parent Dialogues, Day Four: Zoe

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.

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.
Zoe has the floor again today.

-The Editors

----
Dear Robert,

In your letter on Tuesday, you were adamant that parents have a place in the disability rights movement. I want to begin by letting you know that we are in vehement agreement on this point: in terms of advocating for the rights of disabled people, I absolutely think that non-disabled parents and relatives have an important role to play.

As commenters this week have been pointing out, this role is a complicated one. Among parents, advocacy is occurring on two levels: parents advocating for their children individually, and parents becoming involved in disability rights generally. Because you refer to yourself as a disability advocate as well as an advocate for Schuyler, I can see that you consider both types of advocacy to be central to your work.

As a parent, you are familiar with your child’s needs. Your description of the role of a shepherd as a guide and protector is a moving depiction of the way you relate to Schuyler as a parent -- and, I think, the way parents relate to their children generally. I admire your efforts to guide and protect Schuyler, and I have no wish to tell you what to do on that front.

When it comes to broader disability rights advocacy, however, working cooperatively with disabled people becomes part of your role. The shepherd analogy is touching when describing parental care, but it is less appropriate as a model for a relationship between political allies. The problem is not only with this imperfect metaphor, but with the attitude towards disabled activists that the metaphor reveals: clearly, you cannot approach disabled adults as you would approach your child. This means not assuming that you know our needs as well as you know hers, not claiming to represent us in the same way that you represent her. This means seeking to work together with us, instead of working “on our behalf” without our input.

I have some concerns from you letter that I’d like to address. You say that you are committed to listening to self-advocates. When I said that some parents are hostile towards the political participation of disabled adults, you told me I was wrong. Yet certain parts of your letter on Tuesday read like a list of reasons why what I think doesn’t count. That feels hostile to me.

You say that I don’t understand the scope of the disability community because I live independently, which you seem to have extrapolated -- incorrectly -- from the fact that I write a blog. It’s true that I have gotten pretty good at blogging; I consider it an accomplishment to be proud of. However, you won’t find “posting writing on the internet” on any list of vital Activities of Daily Living. For the record, many of the tasks you will find on such a list give me a lot more trouble than writing a blog does.

You say that my ability “to even have this conversation” means that I am too “high-functioning” to advocate for disabled people as a group. I would like to point out that you have essentially created an impossible standard: anyone who can express disagreement with what you say isn’t disabled enough to have an opinion on the subject in the first place. I think you’ll understand when I say that this isn’t the way I expect a committed listener-to-self-advocates to respond when I express my ideas.

You also seem to want disabled self-advocates to be incredibly circumspect when we have disagreements with you. You express hurt and anger when we state our opinions in plain language. You ask us to “delay judgment” when we read an offensive remark from a parent, to “look past our emotions and our offense to find commonalities” -- in other words, you ask us not to get angry, but to be polite. You’ve written that parents need to be “strong, entitled, and impolite” when they advocate for their children, but you seem to think that disabled people should be docile and deferential when we advocate for ourselves. Why shouldn’t we approach advocacy with the same empowered attitude that you encourage parents to take? If you want disabled people to ask nicely before you are willing to engage with us as allies, are you sure you’re thinking of us as your equals?

Now let’s talk about parents in the disability rights movement. As I said at the beginning of this letter, I am not at all interested in excluding non-disabled people from this struggle. I believe that parents and non-disabled relatives have an important role to play here. But it is not the only role. As Ari wrote yesterday, many people view issues pertaining to intellectual and developmental disability as parents’ issues, not the issues of the disabled people in question. In the public eye, you take up the whole picture. I’m not saying you should get out of the picture, but I am asking you to move over a bit and let us in.

In response to the first letter I wrote, some parents asked me what I think respectful parent advocacy looks like. I think that it might look something like PFLAG.

PFLAG (Parents and Friends of Lesbians and Gays) is an organization made up of straight, cisgender (non-trans) folks who are working to be allies to the LGBT community. As the name indicates, many of them are parents or relatives of queer or transgender people. PFLAG serves two purposes -- it is a place for parents to go for education and support after their children come out, and it is a place for parents to organize themselves as allies to the queer and trans community. I think both of these purposes have applications relating to disability.

Many PFLAG parents have younger children, perhaps 12 or 13, who have just come out of the closet and are too young to get married or hold a full-time job. This doesn’t stop PFLAG from listing equal employment and marriage equality among its goals -- just as adult queer and trans activists work to stop bullying in schools, although they themselves are no longer students. PFLAG plays a crucial role in the LGBT movement – but it is not the entire movement, nor does it set the movement’s agenda. To me, this is a good model of parent allies working together with people from a minority group to address the issues that this group faces. I would love to see a similar collaboration within our community.

What I like so much about the PFLAG model is that it acknowledges that the LGBT rights movement is about queer and trans people. What we need right now is a disability rights movement that truly acknowledges disabled people as the central stakeholders. We could really use your help to achieve this. You can acknowledge your privilege and make some room for us in conversations about disability. You can use the platform you have been given to help us get our voices heard.

We are all working towards creating a better world for disabled people of all ages. Robert, and other parents reading this, believe me when I say that self-advocates desperately want your children to get the services they need and to be included and safe in school. We are working towards those ends. We also want to tackle the issues that we face now as adults -- not only so that we can benefit, but so that your children’s transitions to adulthood will be easier than ours. You know what your children need; we know what we need, and what they might need in the future. I truly believe that our movement will be most effective if we work together.

This means that we will have to do the opposite of retreating into our respective “tribes”: we will have to make a conscious effort to continue engaging with each other. If we do this, there will probably be a lot of conversations like these, which make many of us frustrated and uncomfortable. But I think there will also be progress. I think we will get to that better world faster.

I think it’s worth it.

What do you think?

Sincerely,

Zoe

Wednesday, September 21, 2011

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?

Sincerely,

Ari