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Thursday, March 1, 2012

Dialogue is Painful by Lydia Brown

Lydia blogs very eloquently at Autistic Hoya. Given the continued difficulties communicating our realities in a way that is honest and yet respectful of others, this is a very timely post--Kim


Since the Thinking Person’s Guide to Autism hosted the Self-Advocate/Parent Dialogues over a period of two weeks from September to October 2011, there has been a continued and consistent flurry of discussion and responses to the dialogues in the blogosphere. In the last few months, it’s mostly died down, with only occasional articles and posts addressing the complex, interwoven, and intricate relationships between parents and Autistics and Autistic parents.

When Kim Wombles asked me to write a response to the dialogues close to six months ago, I was at first excited and enthusiastic to embark on such a project -- to join a conversation that had been watched with keen interest throughout the autism community.

It took about two days before I realized that I was tackling a series of complex issues that no one article or blog post could truly do justice. So I kept procrastinating. I put the article at the end of a rather long to do list, reassuring myself (and Kim) that I was working on it and would have it done in a timely fashion. Occasionally I would think of ideas or phrases to use in this article, but just as quickly, I would discard those same ideas as too cliche or lacking the right amount of nuance for the feelings and ideas I hoped to convey.

It’s five months after I received that email, and still I fear whether I can adequately address the myriad of underlying issues that have been brought to light through the TPGA-hosted dialogues, and all of the subsequent writings from the autism and Autistic communities since then.

Let me start, then, with a simple declaration.

Dialogue is painful.

That might seem like a pessimistic statement, a defeatist declaration, or a cynical look at the possibilities for the outcomes of these dialogues. But it is a true statement. We have seen this to be true throughout history and across the world. Whether it is the family member of a murder victim engaging in dialogue with the condemned inmate who committed the deed as part of a restorative justice program, or children from Israel and Palestine engaging in dialogue at a peace camp, or survivors of genocide engaging in dialogue with the perpetrators of the crimes against humanity -- dialogue is painful.

To dialogue means to engage in a reciprocal conversation in which all participants are equal (setting aside privilege or familiar footing) and equally welcome and accepted. A true dialogue is an open conversation in which nothing is hidden or withheld, nothing is sugar-coated or skirted, and nothing is off-limits or out-of-bounds. To be put on equal footing means that the participants in a dialogue have to relinquish their need to be cautious in every word. It means, in a sense, that they have to relinquish their privacy.

Dialogues are about people. People have pasts. They have experiences and emotions and ideas. Dialogues must reflect and include all of that -- the best and worst parts. And we all know that it is impossible to talk about sensitive topics, or indeed any topic in which one is personally and emotionally vested, without eliciting passionate emotions. We have to recognize that. Especially when we dialogue about autism -- each of us has a deep and personal connection to autism, whether it is by way of being Autistic, having a family member who is Autistic, or otherwise. Many of us have had painful experiences. Words like anxiety, depression, and indignation resonate with the members of our community very well.

Thus, dialogue is painful.

But it doesn’t stop there. Dialogue has to be painful, because if it’s not painful, then it isn’t -- and won’t be -- succeeding. The problems that we encounter arise when we allow our emotions -- of deep hurt and offense -- to influence our words to each other. It is very easy to speak from anger or hurt, but it is very difficult to speak of anger or hurt.

This is one of the major reasons why our community has seen such vitriol and vicious infighting over the last several years. Each of us has had such intimately painful experiences for an entire amalgam of reasons, and when we hear another person say something that seems to ignore, dismiss, or diminish those very real experiences, we have the natural tendency to retaliate through harsh words. That’s true of all of us, by the way. It is not exclusive to Autistic self-advocates, or to non-Autistic parent advocates, or to Autistic parents of Autistic children.

But let’s not dwell too long on the past. It is wrong to ignore the past and to ignore past experiences. It is equally wrong, however, to languish in it without attempting to move forward. After all, dialogue has a purpose. The purpose of dialogue is to use such open conversation as a means of achieving some goal or outcome -- in this case, I think, to bridge the often mutually alienated Autistic self-advocate and non-Autistic parent advocate communities (and to include Autistic parents of Autistic children, who have often stated their frustrations with the non-Autistic parent community.)

What are the problems, then?

The original dialogue participants and many of the responses to the dialogues touch upon a whole host of them. First and foremost is language. One of the primary purposes for language is to communicate and express ideas, but a major pitfall to interpersonal communication occurs when one person uses language with the intent of expressing one idea, and another person understands that same language with an entirely different nuance. Other pitfalls come when definitions have not been agreed upon before entering dialogue, or when certain language has come to be associated with negative connotations among members of one group but not another.

These consistent failures to communicate over shared use of language can and do result in miscommunications. It is evident to me that the failures in our community’s ability to dialogue within itself are the result of gross misunderstandings and misconceptions on all sides of the aisles.

Some Autistic self-advocates fail to adequately recognize in their words that the vast majority of non-Autistic parents care deeply about their Autistic children and genuinely want what is best for them. Similarly, many non-Autistic parents fail to adequately recognize that Autistic adults who are not their children have valuable and important voices in the national conversation about autism. (In fact, it may be that Autistic adults may be the best role models for Autistic children -- but that’s a conversation for another time.)

Yet despite the very valid expressions of discontent, disappointment, frustration, and hurt resulting from the vitriol and infighting within out community, there are occasional instances where we see that cooperation and joint efforts can effect powerful change. This became more evident after the Change.org petition demanding systemic changes in a county in Kentucky after an Autistic child was restrained and confined to a bag intended for sensory integration therapy -- it has over 191,000 signatures to date, and did not merely draw non-Autistic parents of Autistic children together with Autistics and Autistic parents, but also galvanized national attention around the systematic abuse of restraints, seclusion, and aversives in a way that has never really happened before.

So what should we expect when entering dialogue?

Expect to be offended. Expect to cause offense. Expect to misunderstand. Expect to be misunderstood. Expect to recognize privilege that you have. Expect to have your perceptions challenged and questioned. Expect to be upset. Expect to be emotionally involved. If those things aren’t happening, then neither is dialogue.


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4 comments:

Me said...

Wow. I've been going round and round in my head trying to find a way to articulate my thoughts on this topic. I don't need to now, as you have done so, and beautifully.

I really like this,

Dialogues are about people. People have pasts. They have experiences and emotions and ideas. Dialogues must reflect and include all of that -- the best and worst parts. And we all know that it is impossible to talk about sensitive topics, or indeed any topic in which one is personally and emotionally vested, without eliciting passionate emotions. We have to recognize that. Especially when we dialogue about autism -- each of us has a deep and personal connection to autism, whether it is by way of being Autistic, having a family member who is Autistic, or otherwise. Many of us have had painful experiences. Words like anxiety, depression, and indignation resonate with the members of our community very well.

I am glad you took your time to write this. It was worth the wait. Thankyou. I will be sharing.

amanda said...

Wow is right. My name is Amanda Rivera-Begeman, and I made a courageous leap into the blogosphere today by posting for the first time in my blog about my experiences with autism as an autism mom. Of course now after reading this, I am deeply worried that I will have offended someone with my opinions. I think it would be almost impossible not to offend someone, no matter how hard one tries to be respectful in blogging their own experiences and the ideas that arise from them. I think everyone should keep in mind that people who blog or leave comments on people's blogs are just trying to express themselves and want to be heard. I would be saddened if someone was "shut out" at a time they needed support the most, just because his/her thoughts aren't mainstream or well liked. I am totally new to all of this, so I wasn't aware of the problems. It sounds very complicated and maybe I entered at the wrong time??? However, I do believe there can be healthy debates out there without getting nasty. I think that without these exchange of ideas and experiences(especially between autistics), progress in the field will be hindered. I appreciate the warning though, a "thick skin" in this arena is a must:)

Jo Ashline said...

Oh man. This post hit home. I am in the midst of dealing with this situation right now after posting something some found extremely offensive when all I thought I was doing was expressing my joy and frustration at autism.

Well done, well-written, thoughtful, post. Great perspective and really puts it into simple language.

If I've learned anything this past week is that I've got a lot more "learning" to do.

Marsupial Mama said...

I loved this post and couldn't ave said it better than "Me" above me (1st poster).

Also, I think, Amanda, that you have nothing to worry about. Your heart is obviously in the right place, and we've all stepped on toes coming into the conversation a while after it's already started. But you're right, I think a thick skin is definitely required!

Thank you so much for this post. Dialogue is painful. It can be really daunting. And I can't claim to have participated a lot, but I have learned *oh so much* by just lurking in the background!!

And as Jo has rightly said, the main thing that I have learned is that I have *so much* more to learn. And I look forward to it. Because I want to do right by my children and also help the Community in any way I can. I *do* have a deep and very personal investment in this, so in a way, I welcome the pain and the opportunities for learning.

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