Why Privacy Matters

… even when you are willing to disclose.

Tomorrow, Friday, April 26th, 2013 there is going to be a hearing about HIPAA. Well, that’s not exactly accurate- it is about HIPAA for those with psychiatric disabilities or seeking psychiatric care. But no, this isn’t an entirely accurate description either. It is about how some people truly believe that those of us who receive psychiatric care and have our HIPAA rights respected are somehow a threat to public safety.

They believe this even though our providers are mandated reporters, people who have an exemption for threats of violence to others or one’s self. They believe this even though we are more likely to be victims of violent crime than to commit it. They believe this even though when we report on the violence of others, our voices and experiences are discounted.

They believe us as such a huge threat, despite evidence to the contrary, so much that they won’t even be having any of us at the table as they talk about taking away our rights. That we aren’t able to be truthful, competent, or able to speak for ourselves to such an extent that Representative Murphey has gone on air with his belief that we would be incapable of testifying and that the most important conversation is one about parents and families’ experiences.

Those of you who follow this blog just for the Autism angle might recognize that sort of language. It’s the same sort of language that made our fight last November to get Autistics on the panel of another hearing so important, and that makes our objections to how we are portrayed in the media so necessary.

I’ve heard from some corners of the autism communities that the issue at these hearings isn’t about us, or that some of the efforts that autistics (and ASAN) are doing around this hearing are somehow conflating “mental Illness” and autism. Setting aside the fact that in some places autistics without ID are only able to access supports through the mental health system, and setting aside the fact that some of us have additional disabilities that happen to be in mental health, I still have to disagree. These are the same issues that we face, the same ways our voices are invalidated and our societal consent voided.

Even where we aren’t also people with psychiatric disabilities (and a number of us are, either by birth or because having society tell you you aren’t worthy tends to be traumatizing) , we should be giving our solidarity to the people who are fighting the same fights. And we are fighting the same fights against ableism, albeit from slightly different angles. We have a stake in this too- because ableism isn’t just actions. It is systemic. It impacts all of us, though often in different ways, regardless of our exact disability. There’s a reason we need a cross-disability movement, and the strength we have in supporting each other is just one (important) part of it. There is a song that goes, “None of us are free if one of us is chained,” and you know what? There is a certain amount of truth there.

There is also, of course, the fact that co morbid mental health disabilities or not, many Autistics will be served through the mental health system. The sort of policies this hearing may engender often don’t care if you are receiving services for mental health. They only care about what the services you are receiving are classified as.

I personally am multiply disabled. I have multiple reasons to care about this issue, and that is just reasons that have only to do with myself. There are even more when I think about the people around me.

I am someone who is all about disclosing. I’ve talked, in the past, about topics that are very personal and are too much information for some people. It’s ok if you aren’t comfortable with that, but I have done it for a reason: for every time I’ve had a comment or email expressing concern that I’ll disclose details of my life, particularly as it relates to medical care, I’ve received one if not multiple telling me thank you.  Because they? They don’t feel safe disclosing and it has left them feeling isolated.

And that’s the thing, isn’t it? That people don’t feel safe, or comfortable, and they feel that way for a reason. it is the same reason that disclosure is currently a political act: because the negative consequences can be so great. People regularly face discrimination when they disclose, particularly when their disclosure is about a highly stigmatized disabilities. There is a reason both psychiatric disabilities and autism are on the list of such disabilities that the Department of Labor’s ODEP put out- people unfortunately are still fired or even denied a hire on the basis of disability, even though it is against the law. Housing, too, can be riddled with discrimination, leaving affordable and safe housing harder and harder to come by.

Even disclosing in the medical community has negative consequences. This past month, we had a prominent, multiply disabled, autistic voice who had to fight medical discrimination to have a life saving procedure. So, too, do people with psychiatric disabilities find their medical needs and wishes challenged. I cannot begin to count the number of stories I’ve heard in which people I know, either personally or through my advocacy, whose medical conditions were ignored or even blamed on their having had a mental health diagnosis. Either way, they faced a denial of timely and appropriate medical treatment, not because of a lack of disclosure between professionals, but because the stigma is so great that when we disclose even medical professionals have their judgement clouded.

Just as other people with disabilities, people with psychiatric disabilities have our abuse and murders excused as treatment. Our families feel justified, or at least are told they are justified, in abusing or being complicit in the abuse of us. After all it isn’t just Autistics being shocked at the JRC– young people with psychiatric disabilities are also sent there. Indeed, there is a whole industry around sending young people with psychiatric disabilities away to isolating and sometimes dangerous camps.

I am someone who takes the risks that comes with disclosure, but no one should have the choice to take those risks taken away. It has far too dangerous a set of consequences to take consent to disclosure away from the people whose privacy it would expose. Far too dangerous to take away the right to privacy of a group that must rely on privacy in order to both get support and to avoid discrimination.

I would encourage all of you to sign the petition that ASAN has written calling out the chairman of the committee for excluding the voices of people with psychiatric disabilities in a hearing that could very well threaten their rights. If you are in DC and are reading this in time*, please try to attend the hearing, even if you just end up in overflow**.

Our privacy, even if we chose ourselves not to keep it, is a right that no one should be taking from us. Talking about doing so, let alone having that discussion without us, is reprehensible.

_____

* I’m sorry I didn’t get this out earlier. I tried, but kept getting stuck on the endless examples that can be found of both how we face discrimination when we disclose, and how the language that is being used to justify the lack of People with Psych disabilities is used to justify other miscarriages of justice.

 

**I personally cannot make it- not only because it’s out of my budget to go to DC last minute, but also because tomorrow I have to go face the housing system to prove I deserve to keep the voucher that makes being not homeless affordable. So please, if you can, go; there are many of us who would like our voices or at least persons represented, but cannot make it ourselves.

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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.