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 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.” 

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