Parents

We are running up on the 2015 Disability Day of Mourning vigils (aka Day of Mourning 2015: Remembering People with Disabilities Murdered by Caregivers on March 1st) and it has me thinking about parents. Or more specifically, how parents react to the autistic and broader disability communities.

I kept asking people to consider hosting vigils, and too often there was push back that they were concerned that the parents in their community or the parents of their group members would fight it. Which I want to say puzzles me, but that isn’t quite right. I know what is happening here, it happens elsewhere too, but it still seems like nonsense.

First let us start off with this: Unless you’ve murdered or tried to murder your child, or actively fantasize about murdering your child, this isn’t about you. This event? Is not talking about all parents as some sort of blanket entity. It is acknowledging that while hopefully you, my reader, are not going to kill your kid or charge, there are people who do, and that that is wrong. I, and the disability community, want you to join us in saying “it is wrong to kill your kids. Period. Disability is no excuse, lack of services is no excuse. It is wrong.”

Saying that it isn’t okay to kill your kids isn’t about you, as a good parent. It isn’t, I promise! But it is important for you to join in on. You can’t tell, and we can’t tell, merely by looking that the parent next to you is also a good parent. The children who have survived can tell you that. The people who outlived a loved one who didn’t can too. So it is important to make sure that you are telling all parents, good and bad, this very simple thing- that disability status isn’t an excuse for murder. That murder is bad. It might feel too basic, but the cases we’ve heard of over the past several years show that when it comes to this issue it clearly isn’t. There’s still enough sympathy, enough rhetoric, that makes some people think it’s the better choice.

But the vigils for murder victims aren’t the only place I’m running into this issue. I do a lot of policy work. I have a deep love hate relationship with doing policy work, though part of the hate if I’m honest has to do with most of it currently requiring a minimum of a 5 hour drive each way. At some of these meetings parents come in and say some very reasonable things… but then are shocked when I add something that would put protections for their child from them. And every time, I have to tell them “I trust that you are a good parent. I trust that you have your child’s independence, safety, and access to community at heart. But not all parents are good. We have to make sure that their children are also protected.”

Some of them still will be upset. They really want, I think, to believe that if there was just the right services out there that all parents would think like them. I admit, that would be easier. But it’s not true. You can insert your token “and they say we don’t have theory of mind” joke here if you must. But there are parents who have done deeply horrific things to their disabled children, ending in their deaths.

But that’s just the more extreme horrors. I’ve also met people whose parents have told them, all the way up to age 40+, that they are not allowed to vote. In my state, that is not true- you can still vote in PA even if you are under guardianship. I’ve met people who have been told that if they move into a more independent situation, they will either be abused, or subject to more abuse. I know people who were abused before they went into a placement, and whose care givers hold that over their heads as something that will happen if they try again any time they ask for more independence. There are endless ways that a person can let their goodness fade away and reduce their loved one, to aim not for a better life but for one that is easier for the family or caregiver to manage.

And there’s contributing factors as to why these things happen. We have a lot of rhetoric that embraces the idea of people with disabilities being burdens. Sometimes there is explicit wording about our financial cost to our families, and sometimes it is more about all that time. When I was looking around for links on the Tutko case, I had to discard some of them because of how hard they framed things in that first week as being a case of the mother giving up family life to “care” for their kids. That was a deeply horrific case, one that later had that tone stripped as the neglect was extensive and the way that her rejection of help was tied to a history of child protective services was revealed. But it was still the default, and that is concerning. That is how deeply that burden rhetoric has permeated.

Again, I trust that you reading this are good people, good parents. Some might even say that’s too trusting, but I’m going to trust you anyhow. I’m going to trust that when you talk to your kids, you are letting them know it’s not okay for anyone to harm them or to kill them. That you fight for and with them, but listen to them in whatever way they communicate. That you let them know that they are loved, period, and that that love is about them, not about anything else.

And I’m going to ask you to not fight against us, to not be defensive, but instead to stand with us when we say, “no, it’s not okay.”

Seclusion and restraint in Schools- Our tortured students.

Today was the House Committee Hearing on “Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools”. (An archive of the Hearing can be found here, with select clips on the Labor and Education Committee’s Youtube, and C-Span has it here.)

The GAO Report (PDF) Was given to the Representatives on the Committee ahead of time. These included* chairman Miller (D-CA), Andrews (D-NJ), McKeon (R-CA), Woolsey (D-CA), McCarthy (D-NY), Scott (D-VA), Hare (D-IL), Biggert (R-IL), & Payne (D-NJ), who were in attendance (though several arrived late due to other bussiness).

Miller’s Initial statement can be found here.

Witnesses:

As the Education and Labor Dems youtube has the testimonies divided up, I have put a link to each next to the appropriate person. Otherwise the above formatting is from the Education and Labor’s Website on the issue. Also, these do not include the Q&A portion. see further down in the entry for those portions.

Gaydos brought her daughter, Page (Dx: Aspergers, formerly bipolar) as well. While I was disappointed that page didn’t speak, I can understand why she didn’t. She’s still a minor (16?), speaking in front of people is nerve wracking, and the incident happened around 2001. Also, many people still discriminate against Those with “invisible” disabilities, especially if they attempt to advocate for themselves (usually saying that they obviously aren’t that disabled). Her mother recounted her story, and How there were other families who had similar instances happen. She elaborated that the only reason why they were able to pursue it was financial stability, and that she has talked to many families that did not because they didn’t have that amount of financial resources.

On a side note, I loved Page’s outfit-though I wouldn’t have worn that shirt. Well, I would have at 16, but that is beside the point. 🙂

Toni Price Was both witty and heartbreaking in her testimony. Her foster son was killed durring a restraint, and because she was “Only” a foster parent, she was told she could not pursue charges. This happened while she was in Texas. The teacher that even the representitives refered to as havin murdered her son is teaching today in Virginia**. There were several points where I thought she would break down crying. However she didn’t, and when It came time for Q&A, she was sharper than a tack and extremely witty. She even talked back to McKeon (who I will get to in a moment)

I applaud Rep Hare, BTW, for his comment that It was shameful to have the attitude that Foster Children don’t matter.

Here’s Miller’s Q&A:

Note worthy moment: look at 4:00-5:40. Here Miller compares some of the restraints to water boarding.

Throughout the Q&A sessions, various representatives compare this to toture, and I think it’s of note that many of the

Here’s Andrew’s Q&A:

He starts right out questioning how useful the in place things are while pointing out WHY they are faulty and thereby suggesting how they can be fixed. This is mainly to do with why teachers who were put on a register for this in Texas’s state registry don’t automatically loose teaching certification in Texas, and how the Virginia Board of Ed didn’t even KNOW that the teacher was involved in a restraint related homicide.

Also of note: He refers to Cedric’s homicide as “murder”, Refuted McKeon’s points, and was very goal specific. (And now my first non-jewish political crush in ages. ♥)

Quotes: 6:36-7:00 “To those that imply that these cases are isolated and infrequent, that One is enough. And two, there are a lot of people who probably are not reporting these claims because – at least their trying- because no one listens to them because they are so voiceless.” He also said that the fact that schools are blowing off concerns as just being “annoying parents”- that there was something wrong with that.

Unfortunately, these are the only two Q&As that the Ed and Labor Dems put up on their youtube account. There were other Dems who answered, but their Q&As seem only available if you watch the full hearing, as is McKeon’s. However, since I’m so Disappointed in McKeon’s Approach (also, what was I expecting, really?), I’m cutting it and posting it for your viewing pleasure.

McKeon (R)’s Q&A

Sorry for the poor sound quality, had to record the screen. *frowns*

McKeon’s comments start with blaming Unions, and then going “but privacy!”

Toni Then is incredibly witty. She asks if Pedophiles are on a list that they have to report to. And then asks how it is that they are on a list, but teachers who murder students aren’t, and McKeon laughs and agrees on the point.

I definitely don’t like McKeon. At all.

The others that testified were professionals and they played in professional speak.

I have to wonder, though. We still have these things are going on in our schools, mostly to disabled students, and no one is talkign about it. And yet the Torture memos are BIG NEWS OMG. How is it any less worse that this is happening in our High, Elementary, and Pre-schools? Is it that tyhey are disabled that keeps people from outrage, is America really that callous? I expected more outrage, and instead I hear only a dull rawr.

*If I missed somebody, my appologies, I was going off my notes on Twitter, which were not complete. Corrections can be posted in the comments.
** I have been informed by a friend in VA that the teacher has been put on administrative leave.