Sometimes we disagree with our friends. If they're little disagreements, we let it slide, decide it's not worth mentioning, and we move on. It's there, in the back of our minds, but it's not important enough to bring it up. Time passes, we move on, it's all good. Other times, though, we watch our friends go further along this path we disagree with, or describe sentiments that we don't really agree with, and we shake our heads, we weigh the importance of speaking out or letting it go again, and if we don't speak out, we feel ourselves grow increasingly out of step with our friends, so that we're not sure we even agree on the most fundamental of principles.
If we're lucky, we deal with it, our feelings, all that messy stuff before it explodes out of us and the friendships are lost, demolished by our feelings, our hurt, our anger that just spew everywhere. In that way, we can focus on the issues and not on emotions, since the emotions aren't yet in the way.
I'm going to try to do that here, to do that now, to do that with friends that I, unfortunately, find myself disagreeing with, and in such a way that, at least states my case and why I disagree with certain actions.
It's Autism Awareness month. We've got mixed feelings about it. Some people on the spectrum hate it; others embrace it. Parents, well, they're all over the place, too, especially depending on what they think caused it.
It's getting increasingly hard to write about autism, even really positive pieces, without getting slammed by someone because the phrasing struck someone wrong. It's getting harder to communicate experiences and perceptions without getting abused for it.
I deal with it enough on my own posts that I've about decided (and psychological research into confirmation bias backs this up) that folks walk on over to my blog, read my posts and see what they expect to see. It doesn't really mystify me any more, but it still occasionally annoys me. However, I've now read, what are overall, really positive pieces by family members regarding autism and seen friends slam both these pieces.
I wrote last week on one of the posts, calling mine Not Where I Once Was. The mother who wrote the piece talked about her initial desire to fix her son, and rather than calling him her autistic son, she used person first language; for these things, she took heat. I talked about the learning curve parents go through, but maybe I didn't talk enough about it. Maybe I didn't make clear that if folks want to give that mother heat for her desire to fix her child, despite her evolution over time, as her understanding of autism and of her son grew, that her acceptance, her appreciation, her desire to honor her son for who he was, could have mirrored my own evolution.
I am not where I once, nor the person I once was. I have grown and I have learned. I use person first language interchangeably with autistic as a descriptor. It says nothing about how I see autism or the person, but if you'd like to see that as somehow reflective, that's okay. You've already come to this blog with your own biases and blinders, and I write this with my own on. I know they are there, even if I don't always know what they are. I try to take that into account, and I attempt to be sensitive to others. I also accept that some people will walk away mad. And that's okay. My children are on the spectrum. I have a greater appreciation for what that means with each passing day; my children, my husband and I, and our extended family learn more about what autism means and doesn't mean with every breath. It seems to me that other mom has learned, too, but that appears to have been missed, or not thought important.
Another commonality that, if we're going to hold that mom up, you should hold me up, too. My bright boy was undeniably difficult as a young child. He didn't sleep. He had rages. He hit me. He pulled on me. If you woke him up, he'd crawl to the nearest wall and bang his head; he'd scream for hours. He wasn't completely potty trained, even at seven. After his stroke at nine, he had to relearn that, as well. I cannot stress enough for you, that just as I am not where I once was, neither is he. I can completely relate to any mom in that kind of situation wanting to fix it. Any person who thinks that kind of situation doesn't need to be mitigated, to be helped needs to deal with it first hand for years and tell me you wouldn't want to help your child speak, wouldn't want to help your child learn emotional regulation, wouldn't want to help your child learn to use the toilet, learn to sleep, learn, grow, develop? In this sense, if you want to slam someone for wanting to fix that situation, then you need to slam me, too. I didn't go all woo-ey, but I read everything I could get my hands on to help understand what was going on so that I could help my son grow and develop and learn. I did my best to do everything I could that was safe, that was reasonable, that respected his personhood, to help him because that's my job.
I've found in another post, this time by a sister, additional areas of commonality. It is a positive piece by a loving sister. She shares guardianship of her brother, who has autism. In it, she writes that he is "not a cure that didn’t happen or a diagnosis…he’s a human being, who gets up every day and goes about his bitness." She made the unfortunate mistake, though, of writing, "I have lived my entire life with autism." Some of my friends, whom I respect and admire, had a problem with this. The sister doesn't have autism, true enough, so yes, the internal experience of living with autism has not been done by her; it's been done by her brother. That's fair to note. I want to know, though, if she'd said she'd lived her entire life immersed in the world of autism if that would have raised the ire, as well. If she'd said, I've lived my entire life with an autistic brother, would that have been okay? Is there anything she could have said that wouldn't have set someone off?
I had a post a couple weeks ago on Autisable, and an autistic commentator wrote, in essence, that nobody without autism should be talking about it. And I thought, okay, I give up. There are more people out there to piss off than I was anticipating. Okay. I expect a fair amount of what I write to irritate some, and I write them with that awareness in mind. And I'm okay with that. The people that are getting pissed at those posts I pretty much meant to piss off, and that's good. I didn't anticipate getting heat for pieces that most rational people would go, well, that's nice, who wouldn't think acceptance, appreciation and accommodation are good things? I suspect that the mother and the sister whose posts I've linked to also never thought that their loving tributes to their autistic family members would draw hostility. I imagine they've both dealt with worse adversity and will adjust, just as most of us do. Some of us, when we take criticism, will reflect on it, consider the source and then either dismiss it (either appropriately or not) or accept it and adjust our behaviors. Some things, we'll decide are things we can agree to disagree with. Some not.
I weigh what I write, I take it seriously. I consider my children and their feelings. I actually consider the feelings of the people I'm writing about as well; I try hard to remember their humanity, to not see them as enemies even if we disagree on everything. I don't think I always succeed at getting the right balance, and I try to own my mistakes. I try to be compassionate even when woo-fighting. I accept that I'm flawed and I know so little about the world and how it works. I think this works most of the time to help me correct my course when I've realized it's off. I acknowledge that snarkiness too often is at the forefront.
When we choose to single out a particular phrase or passage and view it in isolation rather than looking at the context, when we choose to attack and take umbrage rather than stop for a moment and reflect, well, we risk being wrong. We risk causing another person harm. And when we hurt someone and we don't acknowledge it, that's not us at our finest moment.
That's okay. I respect that everyone sees the world differently, that we're all pretty much trying to do the best we can to get through the day, and that differences are to be respected. Doesn't mean we give bad behavior and certainly not criminal behavior a pass, but it means we hold in our minds the idea that regardless of actions there is a person behind them.
I disagree with how some of my friends saw and chose to handle these two people's posts. And that's okay that we disagree. Because I respect their opinions, their voices, and what they have to contribute to the world and to my personal life, I think that to not communicate how I disagree would be wrong.
If this mother and this sister deserve condemnation for their posts, then I am sure I deserve it as well, as do we all. Sometimes our blinders and our confirmation biases really, really get in the way.