I should just stop telling you I'm going to post because you already know it's all a big lie. Look at it this way - the fact that I keep disappearing should actually make it a nice surprise when I do manage to post...
Annnnd I don't even know where to start with this. All of the business surrounding TPGA and the Dialogues, RRH's post about that terrible movie and the ensuing comments, blogs, articles, discussions, research, FB posts/arguments about Ricky Gervais being such an asshole... all of it, has had my head and heart reeling for weeks.
Mostly because I'm left questioning everything I say, write, or do now, as it relates to Josh, his disability, disabilities in general, or even just basic human decency.
I find myself afraid to write or say anything because I'm sure I'll use the "wrong" words. Or I'll offend people because I'm talking about something I don't actually have first-hand knowledge of. Or I won't be as inclusive as I could be. Or people will be annoyed because they don't see the point in making something a big deal. Or maybe people just don't want to hear any of it.
Is it any wonder most of us do this alone? And when I say "us" I am referring to parents and/or other full-time care-givers of children who have disabilities... or are neuro-diverse to the point of needing extraordinary care; and by "this", I am referring to advocacy. Of any kind.
In the post I wrote about advocacy, I mentioned that being "single" was how most of us would see and engage in our advocacy. The vast majority of the battles we are faced with are very specific to our own child/children. But given what I've seen/read over the last several weeks, I think there's another reason - because there will always be someone, or even groups of people, who don't like what you're doing or how you're doing it.
Even people you would think you should be working with.
And honestly? It's more effective to stand strong on your own than to constantly be torn-down within a group that can't come together enough to be a force.
I've written elsewhere about how powerful our words can be and that as writers, we need to take good care in their use. And I still believe that. However, they can also distract us. In much of what I have read and am still coming across regarding parent advocacy vs self-advocacy, this is the case in spades.
I can tell you that from what I've seen, even the language that I have used so far in this post would offend some people.
I did some searching recently, 'round our friend the Internet, to see what I could find about the language of disability. And I learned a great deal. But I also confirmed my suspicion. While there may be a lot of unhappiness over much of the language that is used by non-disabled people regarding those who are disabled, there is also no consensus on language that would be less offensive or simply more acceptable.
I read an interesting piece here in my travels recently - "ableist" being a word that was thrown around during the infamous Dialogues quite a lot, so I wanted to learn more. And while this piece isn't specifically about that word, it did demonstrate my point rather well, if you read through it then as always, the comments.
While it's clear that most, if not all, of the readers were also offended by the terms "special education" and "special needs", very few of them had anything to offer as alternatives with the exception of one or two, and there were those not on board with what was suggested.
I think the language issue drove itself home for me at one point a week or so ago. TPGA posted a link on FB to a picture from a meeting between parent-advocates and self-advocates. This was the same editor who was the driving force for the Dialogues and their most vehement supporter. The first comment on FB under the picture was from someone who wanted to point out that they didn't like the term "self advocate". This comment was made to the one person who has worked so hard to support that perspective all along... it was sad, really. I just had to shake my head and move on. The comment wasn't about the meeting, or anything that might have been supportive of what had happened. Nope. Language. Once again, the focus was off the story and on the words.
So where does that leave the rest of us?
It's almost enough to make you want to walk away and say fuck it.
Hi. I'm Sarah. My son Josh is autistic. Which means he also has autism. In his case, this also means he is disabled and quite significantly so. He may also be neuro-diverse, but his abilities to function on his own are severely impaired. Call that whatever you like, it doesn't matter to me, or to him. Don't believe me? ASK HIM. If you call him retarded, however, I will punch you in the face. Because that is a nasty, nasty word, don't argue with me about technical, literal definitions. We all know how and why that word is used. So don't.
He goes to school. In a self-contained Special Ed classroom. I don't know what else to call it. It's not a classroom for kids who do not have disabilities. The teachers are trained differently and teach differently. Should we call it "Different Education" ? I suspect not. It does need to be differentiated somehow. If the word "special" is offensive, then please come to some sort of agreement on something else. In the meantime, I'm probably just going to keep calling it Special Ed. I'm sorry.
I am not disabled myself. Does that make me "ableist"? Am I privileged? I don't honestly know. I know I want and need to take care of Josh to the best of my abilities. I also know that I have no desire nor intent to offend anyone else who is disabled in the process, but I suspect I will if language is going to muck us up. If you have a preference for something? Tell me. But don't insult and belittle me and my parenting skills in the process.
Do I advocate for Josh? Yes. Why? Because he's a child and his disability prevents him from having an effective, cognisant voice of his own. Can he self-advocate? Sure, but only to the extent that he can tell you what he wants to eat, which episode of Blue's Clues he wants to watch, or that he will not, under any circumstances, put on a new pair of shoes. He cannot and will not tell you why the cuts you want to make to the district's Special Education budget are dangerous and misguided. He is not going to stand up at a school board meeting where you were only given 2 minutes to talk - and speak for 9, against those cuts, where the Gen Ed parents all hated you because then money would have to be cut from THEIR kids' programs. He cannot and will not tell you that you had better get the staff you need in place in his classroom to make sure that he doesn't keep getting bitten...
or you're going to have a serious problem.
He cannot explain why you should not have kicked him out of the IMAX theater on his school field trip just because he needed his iPad on. He can't write you the letter that got you to examine your policies and make some changes so that doesn't happen to anyone else.
So I do it.
Do I know what it's like to be Josh? Can I really speak from his perspective? No. I don't think I've ever thought of myself of speaking from his perspective, actually, I speak on his behalf and in support of what I know is important for him. Does that mean I can't really advocate for him? Should I not be speaking for him since I can't possibly understand exactly how Josh feels and thinks about things? Should I not be offended by the dehumanization of disabled people be it in the movies or a comedian's "jokes" because I myself am not disabled? You're kidding, right? Honestly, the fact that these even come up as arguments astounds me.
If it makes you (and by "you" I am referring to those that make these arguments, none of whom are likely reading my blog... ) feel better, as someone who has been sexually assaulted twice in my life, I do know what it's like to be dehumanized. Might not be in the same way, but dehumanized nonetheless. So can I be offended now? Am I part of the club? Can I speak out against stupid-ass movie makers and comedians without getting told to shut-up because I'm not actually disabled? Do I get a pass on that one?
Think I'm being ridiculous and extreme? I'm making a point in response to what seems to be a prevailing attitude.
Honestly, I don't care. Like I said, I'm not trying to offend anyone. But I will do what is right and in my son's best interests.
It would be great to be able to do it en masse. But if I have to go it alone because you have a problem with my not being disabled and you don't like the language I use? if you're too focused on those things to figure out how to move forward with me? I will.
I have friends on FB who don't understand why I would make a big deal about the Ricky Gervais business. They say, he's going to keep doing what he wants no matter what you do or say, so why bother calling attention to it? I'll tell you why. It's exactly that attitude I'm trying to change. Someone in the business of entertainment will ONLY continue doing something as long as he's still making money and selling tickets to shows, getting gigs, and good press. If that person starts to lose jobs, money, interviews, starts getting bad press because of something he or she is doing? I promise you that behavior will stop. The only way to make those things happen is to get the word out about why his "jokes" are unacceptable and dangerous. The more of us writing about it, talking about it, making a big damn deal out of it, the more likely it is that the press will get in on it and then the ball is rolling. Complacency gets you nowhere. Nobody making an issue out of it tells Ricky Gervais that his constant jokes about "mongs" (short for "mongoloids" or people with Down Syndrome) are ok. Am I just one small voice? Yup. But I'll keep speaking out about things like this because it's the right thing to do and, it's important for Josh. Notice I said for Josh, not to Josh. He doesn't understand enough to care. But he is still vulnerable.
So, I am going to put on my big-girl panties in my own non-disabled, parent-centric, offended by shit that's offensive, fuck-with-my-son-and-I'll-rip-your-face-off way, and I will keep it up.
Because I'm Toad's mom. That's my job.
And I'm ok with that. I don't need anyone else to be.