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Monday
Oct312011

The Road Less Traveled... Probably Because it's a Damn Minefield. 

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.

It's overwhelming.

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.

Sigh.

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.

Almost...

 

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.

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Reader Comments (20)

I love this....you wrote it so well.

October 31, 2011 | Unregistered Commenterchristine Zorn

What a passionate post and what a great mom you are to Josh and, a voice for so many others who live in
silence.

October 31, 2011 | Unregistered CommenterOpinionsToGo

Josh is my grandson, Sarah is my daughter. They are courageous human beings, and I am very proud of both of them.

October 31, 2011 | Unregistered CommenterDr David Low

@Christine and Joanne - thank you, ladies, as always, for reading and your comments are much appreciated.

@Dad - .... ! Hi :) Thank YOU very much for being here and for saying that, it means a lot.

October 31, 2011 | Registered CommenterSarah

Regrettably, I'm not to great at the whole current events thing to know what the Ricky Gervais issue is, or the movie you spoke of.

As far as people taking issue with the words used by one person to describe a situation at the risk of offending someone else, I say, screw them.

I found a quote online I really liked. I have no way to identify if it is really a quote by the person given credit for said quote, but I think the message matters so much more than the ability to validate it.

"it's now very common to hear people say "I'm rather offended by that." As if that gives them certain rights; Its It's actually nothing more.... it's simply a whine. It's no more than a whine, "I find that offensive," it has no meaning, it has no purpose, it has it has no reason to be respected as a phrase. "I am offended by that". "well so fucking what?" --Steven Fry

I'm sure there is a way to take the same message and make it more succinct. however, I have not yet done that. I thought this was fitting to the whole situation.

"you are offended? that's nice. Go ahead and whine"

October 31, 2011 | Unregistered CommenterTequila

@TJ - if you mouse over the blue words in my post they link to the things I've referenced, so you can read the Ricky Gervais article, and the movie is the one that RRH wrote about in his post that started the whole Dialogue business - it's linked in my first post of that series if you want to read it (the movie was "Change Up", I believe).

And it's not people being offended I take issue with, everyone is entitled to their feelings. What I don't like is being made to feel as though I have no business doing what I'm doing, and people getting mired in language and assumption instead of actually giving some useful feedback so that we can move forward.

October 31, 2011 | Registered CommenterSarah

After these events of late, and subsequent responses, I have myself felt .... scared?....with my words and voice on my blog. Intimidated? Paralyzed? After being told I "dehumanize" my child and other like him because of my language and my desire to advocate in the way I, his parent, think is appropriate for him.... I would guess that is why I am having a fairly significant case of writer's block. So I am going to re-read and re-read this post and gird my loins, go forth and have some more balls. And do my damn job and talk about it.

It isn't a damn minefield... it is a FUCKING minefield. (get it right, sister *wink wink nudge nudge*)

November 1, 2011 | Unregistered CommenterPia

When my daughter was initially diagnosed, in 1987,[and forgive any words that may cause offense...I use the words that I'm familiar with in order to express myself, I've not enough time in a day to research every aspect of being non-offensive due to obligations that require my full attention, meaning, my 26 year old daughter who is severely autistic], I had a handful of friends. Shortly after Winky's behavior began to escalate in regard to aggressiveness and frequency of melt-downs or physical outbursts, I found myself completely alone. This was when the prevalence rating of autism was 1 out of 10,000 - so little was known, even less available. I had rather 'go it alone' than waste valuable time matching wits with those who are too easily offended. Every situation is unique and individual, what works for one may or may not for another, thus, spectrum disorder. Like you, I've had to ensure the well being of my daughter, I advocate for her, I care for her every need often times 24/7, I protect her as she is unable to protect herself, I am more often than not, her voice as she is mainly non-verbal, I interpret and process more complicated information and situations since her comprehension skills are severely limited. I left self behind a long, long time ago when it became obvious that my daughter has limitations that she is unable to overcome which create a situation of extreme vulnerability, [and people are cruel, abusive and neglectful toward those who are weak in some manner], and her need for my intervention and assistance is vital. No one has ever stepped up to assume these roles and Winky is simply unaware of them. So, like you and many other parents, I prioritize my CHILD, not someone else's over exaggerated sense of offense. I will continue to care for my daughter to the best of my ability and in a manner that is most beneficial to her because, "that's my job", that's what I do and I would consider it overwhelming failure to do anything less. GREAT blog!!!!!

November 1, 2011 | Unregistered CommenterDeborah Sue

What a wonderful -- and profane! yay! -- piece.

I'm an Autistic/autistic/Asperger's person -- or, put another way, a person with Autism/autism/Asperger's -- who sometimes likes person-first language and sometimes doesn't, and who sometimes really likes being autistic and sometimes doesn't, and who sometimes loves being in the Autistic community and sometimes doesn't. Now that I've completely alienated anyone who wants me to pick a side and stay there, I want to say that so long as people aren't openly and intentionally hostile and dismissive, I just can't get caught up in the words they choose. I might like to have a discussion about the impact, or history, or problematic nature of those words, but I'd do so more for moving along the process of thinking about the issues, and not necessarily to convince someone to shift to a different term. Mainly, I care about the content of what you say and do and its impact, for good or ill.

If it's any consolation to you, I tend to go it alone as well. I mean, I feel connected to a lot of people, but I stay away from organizations and movements and ideologies because I find that it's too easy for people to lose sight of the fact that they're dealing with... people .... and not just ideas. I find that I'm most effective when I'm speaking as my own person. It tends to create the kind of community and support network I'm looking for. I'm cool with that.

November 1, 2011 | Unregistered CommenterRachel

Fantastic post. I was dismayed with the "dialogues", and as a mom of a non-verbal 10 yr old daughter, a huge supporter of RRH. I could never write as eloquently as you, but I agree with what you said above 100%. Thank you for writing it.

November 1, 2011 | Unregistered CommenterCarol

@Pia - yes, focus on your son, do your thing, and don't be afraid to talk about it! It's easy to let this stuff get us side-tracked, I think I wrote this as much as a reminder to myself about what's really important here.

@Deborah - I love that you read my posts and get something out of them on occasion :) I look at you and your daughter and see myself and Toad a few years on, so I always look forward to your thoughts.

@Rachel - um, I think the fact that you read my post AND appreciated it, has given me much fuel to keep going and I feel like this makes up for what I cannot allow myself to eat in left-over Halloween candy :) You know how gifted a writer (and thinker!) I think you are, so, your comments mean the world at a time when I have been finding it hard to get the words out.

@Carol - Thank you for reading, and for the comment - and don't sell yourself short! Most of the time I really don't have any idea what I'm doing either parenting or writing, yet occasionally, stuff works :)

November 1, 2011 | Registered CommenterSarah

@sarah

I have again had my point tangled in the words I used to try to convey it. I was trying to say that who cares if someone gets offended. use what words you are comfortable with, and try to let those negative problem causers issues roll off your back like water off a duck. I love your blog, and check in *almost* daily waiting for an update. :) keep writing, and don't let them get to you :)

@pia

I agree with Sarah. write what you want, if someone doesn't like it, there's always the option to turn off comments :)

November 1, 2011 | Unregistered CommenterTequila

Girl you rock! Love your eloquence, your message and your heart.

November 3, 2011 | Unregistered CommenterMeredith

Yes. Yes. Yes. This is a wonderful post.
"It's almost enough to make you walk away and say Fuck it!
Yep. I am right at that tipping point. Completely over the tribalism. One upmanship. Language police.
Sick and tired of having to defend my thoughts and feelings, whilst simultaneously have others demand theirs be respected, otherwise I'm being ableist. Being told I need to not just listen but agree. If I disagree then I am persecuting from a position of privilege, never mind I may have sound basis for disagreement.
Nasty divisive stuff.
So yeah I'm ready to say Fuck It and walk away from engaging with the broader online ASD community. When it comes to my own blog though I'll continue to call it as I see it. Much like you do. Which is why I enjoy your wonderful blog so much.

November 4, 2011 | Unregistered CommenterSharon

@ Meredith and Sharon - yay! My Aussie contingent is back :) Thanks so much for reading ladies, your comments are very much appreciated.

I was in a bit of a hole with all this, but I think I finally just decided, right, I know what my job is, I know how to do that job, so how about I just keep doing it?

November 4, 2011 | Registered CommenterSarah

Sarah Iv'e added your blog to my blog's blog list. I hope you get some more Aussie traffic soon.

November 4, 2011 | Unregistered CommenterSharon

Thank you so much, Sharon! :)

November 9, 2011 | Registered CommenterSarah

You said, "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."

Uh, yeah. And then we get back to work advocating for our children. I have learned *some* positive things as a result of interactions with adults with autism that have helped me with my own son. But subsequently I decided to write my own thoughts on my own blog rather than in comments on controversial postiings as it didn't seem to be helpful for others OR me. I'm really just tryin' to figure out next steps in the journey.

Adding your blog to my links.

Dixie

November 12, 2011 | Unregistered CommenterDixie Redmond

I agree Dixie, I have found that I get much more out of simply reading the posts/articles written by self-advocates rather than trying to have any kind of meaningful interaction via the comments - it's almost as though "comment threads" on the internet flip some anger switch in everyone's brains because this is not a phenomenal unique to our community.

And thank you for reading and adding me, I appreciate the support!

November 29, 2011 | Registered CommenterSarah

WOW.

Wow.

This. Exactly. All of it.

Love it.

March 21, 2012 | Unregistered Commenterjillsmo

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