Category Archives: reaction

Really Getting Tired of “So-and-So Supports”

There is a magical talisman.

It’s AMAZING.

See – this talisman says that if “such-and-such” member of a minority supports “such-and-such” campaign, viewpoint, person, organization that says things that could be (and often is) found offensive by other members of that minority – then it’s all okay – because it’s been approved.

There’s a “minority approval” sticker which means that if you just get maybe a couple of famous people and a handful of others who are members of this minority to agree with offensive thing – it’s magically not offensive.

At least – so is the apparent belief.

Dealing with not offending people is hard – I do understand that – you can’t speak for getting it wrong. You have to ALWAYS ask first, be ready with sincere apology, not allow yourself to think your intent makes it “okay”, and if you can’t ask first you have to go with the largest consensus you know of on the topic (But ready with that apology). It can also be really hard because there are lots of members of minorities who are exceptionally tired of being “ambassadors for all [insert the minority they’re part of]”.

But one of the things you really need to pay attention to is:

Where is the consensus coming from?

Today is November 1st – it is the 4th Annual Autistics Speaking Day.

It is also the 4th Annual “Communication Shutdown” Day.

The Autistics Speaking Day was sparked by autistics who were arguing against the stereotype put forth by Communication Shutdown that communication difficulties with autistics is all the fault of or entirely upon the shoulders of those who are autistics and that not communicating on Facebook or Twitter is somehow comparable.

The “Communication Shutdown” was sparked by a bunch of charities for autism and it’s part of their “awareness” efforts (its interesting how there are so many charities for autism that want to raise awareness and so few wanting to raise acceptance [also notable how many of those that want to raise acceptance were started by or have autistics on their boards – and how few of the ones that want to raise awareness do])). Basically you get to pay money for an app that will put a picture on your Facebook or Twitter that lets you tell people you’re taking part (regardless of if you interact on those media sites or otherwise anyway).

It’s solely for fundraising basically. Fundraising for a group of charities “for autism” but probably not for autistics. It’s one of those token things like the ALS ice bucket challenge – to give able-bodied, non-disabled people the idea that they’re SOMEHOW seeing what it’s like to live with such-and-such disability without actually living that disability and on the basis of only one possible difficulty in relation to that disability and not the thousands of others that are involved or are knocked over like a domino topple by this issue so that it spills into more areas of your life.

It’s rarely EVER one thing.

Person stuck in a wheelchair? Put ramps everywhere for their wheelchairs.

Fixed the problem? Nope.

Because you’ve got to have sufficiently dropped curbs, the door sizes need to be of a reasonable height, can they reach light switches or other things that are necessities for them to reach? Is there a reasonable exit? Is the meeting on the ground floor? Is there a lift? What if there’s a fire and you’re not supposed to use the lift? What if the fire truck can’t get there in time to take them down a ladder out of the building?

Is the reason their in a wheelchair JUST their legs? What if their arms are effected? Neck? Do they have intellectual disabilities? Muscle/bone weakness?

I’m not saying it can’t be one thing – but even if it IS – there is no one small catch-all solution – there are still a thousand of other things that it effects.

My autism does affect how I effectively communicate. People’s allistic and neurotypical experience of the world effects how well they can get what I’m saying. But that’s not all that’s happening – and just “fixing” my communication problems are NOT going to solve my problems.

I hear that Temple Grandin “supports ‘Communication Shutdown'” and I can’t help but sigh in an exaggerated way.

Yeah – I’ve seen autistics who support that kind of thing. Ones that insist that they’re not disabled (Good for you! I am disabled so please stop telling everyone that ‘autistics aren’t disabled’ – because I NEED HELP YOU DON’T). I’ve seen ones that support ABA and horrible attitudes/parenting decisions. Ones that tell parents who film their children’s meltdowns that they’re “sorry for what they’re going through” and that the parents are “so brave”.

I’ve seen ones that ask really offensive and ableist questions.

And the fact that they’re walking around identifying as autistic and some of them even with diagnosis to prove it – doesn’t mean that their approval of offensive things doesn’t make them no longer offensive.

Sometimes it means they’ve internalized ableism.

Which makes me sad.

Because maybe we have something in common.

But you’re not speaking with me.

You’re speaking against me.

Which is depressing as I have nothing against you and I don’t in anyway want to make your life worse – but I would like to make my life better, and the lives of all other autistics that I can help in anyway.

But sometimes – that’s just how it plays out.

But just because someone in a minority approves. Doesn’t mean you have the approval and support of all the minority – and if more of us speak out against you – then what we’re saying – should be listened to.

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Filed under ableist language, autism, autistic self advocates, human, learning, reaction

#WalkinIssysShoes [Reblog]

An incredible insight and mirroring my own prior concern as to what Issy may have gone through and would, understandably lead to outbursts.

Reblogged from http://ischemgeek.wordpress.com/

ischemgeek

Trigger warning: Discussion of ABA, quiet hands, whole body listening, etc.

I’m going to ask you to do something for a minute. Stop moving. Don’t scratch that itch in your left ear. Don’t shift your weight. Don’t frown with concentration. Don’t blink too much. Don’t yawn. Don’t stretch. Don’t fidget.

Don’t have a loud body.

Watch the clock. Has a minute passed yet?

Okay. Sticker. That wasn’t so hard, was it? Again. Two minutes this time. We need to be table-ready before anything else.

Oh, you moved. Quiet body. Sit still, don’t do anything. Two minutes.

Feel how you’re aware of how much you normally want to move. Feel frustration because you know you’re not allowed to.

Don’t frown. Happy face means happy days. Quiet body. Still. Two minutes.

Notice how it feels like you’re being set up to fail. Who doesn’t move at all?

Quiet.

Still.

Two minutes.

Think…

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Filed under "matyr moms", #walkinissysshoes, aba, autism, autistic self advocates, behavior modification, human, reaction, reblogged

Topically Dying Down

This is starting to die down and the next drama is probably just on the horizon – but I felt the need to write the post now.

One year and one month ago a “mommy blogger” Kelli Stapleton attempted to murder her teenage autistic daughter Issy Stapleton in Michigan. Her daughter had just finished a 8 month residential ABA program and her “positive” reaction to the ABA therapy at the residential program lead to her release date being bumped up 2 months from November to September. Some of the plans in place around schooling once she was home were scuttled because of what the “mommy blogger” in question believes was an altercation between herself and one of the school staff that would have been involved in the plan fairly instrumentally. Apparently after only a few days home the girl’s aggressive behaviors were starting to flare up again and the mother decided that there was absolutely no other option than to tell her daughter that they were going camping, driving them out to a wood, lighting grills in the van while they were still in the van and letting them both die of carbon monoxide poisoning.

Kelli’s plan was foiled when the van and the two occupants inside were found before they died, rushed to hospital and given emergency medical treatment. The daughter had to be put under a 3-day medically induced coma and there is indication that she has possibly had some brain damage from this incident.

A lot was said at the time by both the “mommy blogger”‘s friends and by autistic self advocates. There was the typical media coverage for such an event where the mother was described as a desperate woman driven to extreme measures and the comments sections filled with bile and calls for eugenics or completely sectioning off autistic people from the rest of society. Understanding and sympathy poured out in floods for the “mommy blogger” from some people. While anyone who expressed severe distaste or even so much as suggested that this wasn’t a “understandable or sympathetic” event – that there was only one victim – the daughter – were told that they were too narrow minded and needed to put themselves in the mother’s shoes, they were rejected and considered either cold or deliberately clueless/ignorant.

One year later, her charge changed from “attempted murder” to “1st degree child abuse” (the thought process on this apparently being that the prosecution would not have to prove her intent to murder her child, even if it seems fairly open-and-shut that that was what was happening, merely show that she was doing something that she was committing an act of child abuse which may also affect her future chances of interaction with her daughter). She was sentenced to 22 years maximum, with 10 years minimum until she could possibly have parole, her year already in incarceration would be taken into account – so in 9 years time this woman will be up for parole – and if by some chance she doesn’t get parole between 9 and 21 years time – she’ll be released in 21 years time. Her daughter will be roughly 35 years old then.

What caused a recent resurgence on this incident was the fact that last month Dr. Phil did a two part interview with the mother in jail, interviewed her friends, interviewed another mother whose child who had similar problems (a mother who happened to be friends with the “mommy blogger” who tried to kill her daughter, and had even been helped by Kelli in getting her son sent to a residential program) and read out a statement from the father.

It took me a month to “gather the spoons” and to also track down the episodes to watch on YouTube. About a minute into watching the first of the two part interview I immediately regretted my decision but was now trapped along with the programs and my own morbid curiosity on this.

Other autistic self advocates may talk about how sick they felt about the show. They have already railed against Dr. Phil for his insensitive and almost inhuman approach to autistic people in general, his overtly sympathetic approach to the mother and the victim blaming of the young girl who was almost murdered.

Took me a little while to really figure out how to verbalize how I felt about everything I saw on the show, and from reading Kelli’s blog and twitter feed like some other autistic people have. My various concerns that I felt about what I watched and read.

Like the fact that for the entire interview nearly every time it came up Kelli refused to see, state or even acknowledge to a degree that what she was doing and what she was trying to do was murder/killing. She remained emphatically insistent that she saw it as merely moving to a different address/zip code with Issy – with the address just happening to be in “heaven”. This speaks of an extremely unbalanced mind – and while that could at best be considered predictable, what is more heart breaking is the amount of people who say they understand, sympathize and might even do what she did were they in her shoes – the people that identify with the product of an obviously unstable mind.

The worrying, if predictable, aspect of the show were they spent an entire episode, plus 5 or more extra minutes into the next episode solely on Kelli, or talking with Kelli’s friends – where in they concentrated on and spent a great deal of time expressing concern about Issy’s outbursts of violence and how they believe that these will now be focused on Issy’s sister now that Kelli is in jail. There was a impression from these friends of Kelli that things hadn’t improved at home since Kelli had left and their “concern”- despite a long-involved reporter, video evidence and the father’s own statement stating that Issy had improved.

I was concerned to discover that the facility that Issy was staying in was an “evidence-based ABA treatment facility” where they would pay Issy tokens for having “quiet hands and quiet feet” so that she could then exchange the tokens for “iPad time”. I was equally concerned by indication in Kelli’s blog that she might have been subjecting Issy to like treatments from extremely early on (they had done early intervention a lot which had involved long travel periods to get to a behaviorist) – and that Issy’s violence developed when Issy was a little older – I wonder if perhaps the violence started as a direct consequence of blocking off safer and less harmful behaviors, but there is no way to know without having actually been there to see it.

I was slightly thrown when Issy’s father’s statement stated he wasn’t going to appear on the Dr. Phil show and that really the show needed to focus on Kelli because it was “Kelli’s story and about what happened to her”.

So much of Kelli’s blog, twitter feed and the show focused on the impact of Issy’s autism on Kelli and other family members. It was about how these behaviors would affect her siblings and mother. About trying to change Issy to fit with them – rather than change them to fit with Issy. I’m sure that given all the hours and money they put into intervention and treatments for Issy and all the fundraising they did in efforts to get her into and kept in the residential program that they were more inclined to think that it was for Issy – but whenever I look at it – or whenever I look at it with someone else – it really is more about changing the girl to fit them – they changed their routines and lives massively… in an attempt to force Issy to be able to one day fit who the family wanted her to be.

Kelli comes off as any other “matyr mom” when such arguments and clashes happens enough for these women to come out of the woodwork – for their insular blog circles to come to light within the larger autistic community. One of her tweets was a deliberate response to autistic self-advocates, basically telling them to get out and how wrong they are (which is average of “matyr mom” mentality) – accusations of autistic self-advocates being too focused on themselves rather than on the effects of having an autistic family member on the family as a whole. Of their washing over and ignoring members of the “hard to love club” and acting like violent autistics don’t happen (except I’ve never seen any autistic person, self advocate or otherwise deny that there are violent autistics – only argue against the stereotype of us being all violent which is massively untrue – a good deal of us aren’t).

One of Kelli’s friends wants to know where the people who have hashtagged #JusticeforIssy were when they were trying to raise funds to get and keep Issy in the residential therapy. Why we weren’t calling for more services in the months before Issy was killed.

Well – we were there. We did and do call for more services and recognition and accommodation every day.

We were there telling you that ABA (or perhaps more specifically IBI therapy) was traumatizing and that members of us were left with deep PTSD as a result of such therapies and were trying to suggest other therapies. Getting ignored for it most likely, because I see us getting ignored now.

We were there saying all the same things now as we said then because the evidence is right there in Kelli’s blog and twitter history that we were there and she was responding to us negatively.

Autistic self advocates frequently ask parents of autistic children what they would like for their autistic child – and some of them just solely focus on wanting their child in ABA (which lots of us don’t support for obvious reasons) or to be potty trained (which we can’t make happen) or for more services for families (which is not for the autistic child but for the families).

We were there, but didn’t agree with you – and so you ignored us. So accusing us of not being there back then is a lie. You aren’t asking us why we weren’t there back then – you’re asking us why we didn’t support and agree with you for what you wanted back then even though our position hasn’t changed between then and now.

Just because someone doesn’t agree with you – doesn’t mean they aren’t there.

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Filed under "matyr moms", aba, attempted murder, autism, autistic self advocates, human, reaction