Listening and Learning
I made the decision to run a piece from a regular contributor on Monday. I have to be honest, I wasn’t prepared for how some people reacted to it. I’m sorry, but that’s my truth. This is because I read the piece and interpreted it one way (as many other people did, who left comments) and some people in the self-advocate community read it completely differently. I understand why. It doesn’t change that I read it and still read it in a way that is not literal, but more metaphorically. However, I absolutely don’t dismiss there are people who do read it literally and I appreciate that more than I did three days ago. Some people read it as if the writer was saying, “I don’t care where you are coming from, you should not be offended by anything I say!” and I read it was “Wouldn’t it be nice if we were all not offended when discussing these issues!” The writer included himself in that description and I thought the same about me, “wouldn’t it be nice if I weren’t offended by what some people say.” I’m not being glib when I say this; but I have literally tried to put this into practice the last three days.
I could back away, stay where I feel comfortable, but in the end, I don’t think that is the right thing to do. So I take responsibility for running the piece and also for shutting down comments. It’s important that I say I still stand by the writer, Rob and I stand by the piece in how I and others interpreted it. I will say, I wasn’t prepared to address the issues as if the piece was literal, and I very much see and understand that now. I wasn’t prepared and I’m so sorry about that. I panicked and I didn’t want people to get hurt (more) and so I shut comments down, which I realize is ironic. I stand by that decision too. I think I wasn’t clear where to intervene in the comments and when not to, because I’m human. I’m leaving the piece up because taking it down would be trying to erase that it happened and I won’t do that, even though that request has been made.
When I shut down the comments I wrote that I would welcome discussions privately and a few people reached out to me and I thank those people. I can’t say I’ve agreed with everything that was said, but I can tell you that I have learned and my mind has opened, which I see as a good thing. Both for our community and for me personally. The discussions were civil, pleasant even, and I couldn’t help but long for that for everyone is our community. For the chance to really be heard (this was not a one-way street, I also felt like people listened to me). I thank the people who reached out to me respectfully. I thank you for the dialogue and your collective promises to help me understand things from your perspective again in the future, which I am sure to need some day.
I’d also like to say that someone who has been conversing with me helped me understand that while my pain in parenting children with differences is mine to have and they respected it, their pain is from the basis of being the person who is the target of constant marginalization — their pain is greater. And I get it. I get it because my children also suffer that and will in the future when they become their own advocates. Their pain isn’t mine but it does have a certain level of importance over mine. I get that in a way I didn’t a few days ago.
Where do we go from here?
It think it would be a disservice to the disability community to just let this post be it and so I’d like to make an offer. In an effort to make this space a place where people can learn, I’d like to make an open invitation for essays from people who identify as self-advocates. I’d like to make it a regular series and not just a shot this month because this happened. I like it to be once or twice or more times a month if there are enough essays and especially if some people would like to contribute regularly. If you think you might like to share your experiences with orignal essays around 600 words, I would welcome a discussion with you to see if it might be a good fit, so please email me at julia AT supportforspecialneeds DOT com. I’m still open to private emails regarding any of this situation.
In the meantime, I’d like to link to a blog of a very articulate self-advocate, Rachel Cohen-Rottenberg. In our discussions, we’ve not agreed with everything, but in our communications, I’ve found her to be respectful and kind, and passionate about the issues that impact her every single day. I’m linking because if you’d like to learn more about what she faces in the world of being a self-advocate, her blog is a great place to start.
Thank you again for your patience as I navigated how to handle this situation and I thank you for the extra time I needed in order to figure out the best way to proceed. Even in that, I am sure to make mistakes. Just know that I am still listening and learning.
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It was an oversight to leave a link out, so this is edited to add the link to the original post: No Offense
Edited (again) to add an omission, there were people without disabilities who did not like the piece as well and I did not note that.
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Just beautiful, Julia! I applaud you for taking this discussion to the next level and really living out the point Rob was trying to make in his last post. This is the way to walk your talk. 🙂 I have high hopes for all that can happen in bringing people together for these kinds of truly difficult conversations and I am totally not surprised that you are working to make that happen.
Thanks Dawn, for your kind words.
So, just to clarify, by self-advocates you mean anyone who identifies as having any disability?
Yes, although I am not sure if every adult with a disability would call themselves that. It was a term that I have seen used in discussions like this before.
I am a parent of an adult child who had a PDD-NOS diagnosis and I have a disability. (Whether I am a self-advocate is not clear to me. I do not have autism. I do advocate for myself when necessary. My daughter, at this point, is capable of advocating for herself and I generally do not speak for her.)
I have never started any comment with those words because, before these discussions, I never felt like my “tribe” was particularly important. I’m sad that I felt I had to start that way. But statements here seem too often to be measured and those allegiance apparently are considered key to the measurement.
All of which brings me to what puzzles me here.
When did pain become a contest? When did we start having to measure whose pain was more important or more significant or more anything?
Julia,
Thank you so much for you thoughtful examination and for listening to what people communicated in their comments. It’s difficult sometimes to truly interpret what someone is trying to communicate, especially with the written word; we don’t have the benefit of voice tone and body language.
I hope people will keep in mind that we all interpret communication through our own lenses of life experience and personality. And maybe we need to think a bit about the intent of the communicator and not just assume.
That is so true Sandra, much can be misconstrued…
What a lovely expression Ellen. I feel the same way about measuring pain. I have felt so guilty for praying for our poor dog who was just diagnosed with cancer, when I have children who could use prayers…there are so many worse off. There always will be someone worse off than you, but we can’t negate our own pain, despite where it comes from. I appreciate your compassion and empathy.
There is a clear line that some self-advocates draw about pain and I’ve been told that because they are the one experience the marginalization and not a parent of a person who does, they suffer more. More pain.
Well done Julia. I can certainly understand how someone reading through an article might not see things that cause others offence. After all, that which offends us depends upon our own point of view.
I think that it’s a good move to allow self-advocates to speak here. Despite our differences we’re all striving for similar goals – “a happy life for ourselves and our children”.
We could all learn so much from each other if we could learn how to avoid the language triggers which offend.
Gavin,
Thanks for your comment. I have only had 1 self-advocate (possibly) take me up on the offer to (maybe) contribute to our community by way of articles.
We can’t learn more about the issues they have unless they also come into our spaces when offered and that makes me sad and it also makes me think not many minds will be opened to each other, on either “side.”
Julia,
Too few people will take responsibility for their own actions, even when something unintended comes about. I personally did not read the post before all of the hub bub, but I commend you for your actions — all of them. If one person found something worthwhile in the post, then you made a difference, even if 10,000 others disagree. You have shown a lot of poise in your responses and actions, much more than I believe I would/could have. In my eyes you have only grown in appreciation. You offer me so much with this blog. And now, I feel like I know you even better and respect you even more. Knowing people like you exist allows me more faith in this world and I say “Thank You!” With all my heart…thank you.
Thank you MaMere for your kind note. I’m sorry it took me this long to respond. I had wish the same number of people read this that read the offending post and that more self-advocates that had issues with the article had offered to writer here but so far, only one offer.