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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I Was One of the Scary Kids

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizations would be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted to others, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people behave differently. Admitting that you were a “scary kid” means that people heighten their bar of behavior for you even more than a simple disability disclosure does. It makes even normal responses to threatening situations take on a sinister light to others. Telling someone to back off goes from angry to a threat. Pushing away someone who feels entitled to your body becomes violence rather than defense from it.

It makes people suspicious. It makes people question your ability to accurately report crime, abuse, or health concerns. When you are a former scary kid and let people know, they don’t want to hire you in meaningful positions — or sometimes at all — they don’t want you living in their buildings, and they don’t want you learning at their schools. Your opportunities are curtailed. You are told all the things you will never do.

All of these are true of having certain disabilities to begin with, but when you add in a confession of having been one of those scary kids it is heightened.

I was a scary kid. It makes me sad, but only because I actually don’t like scaring people, though I often can’t tell.

Before the age of 14, I was the sort of child that service providers recommend parents to place in a residential setting — that is, juvenile mental health institutions. Parents were — and are sometimes still — encouraged to relinquish them to the state, who would willingly pay for this kind of care. My mother fought it, and demanded community based services and the training my providers needed to provide it. But she was pressured the entire time, and when I was reviewing her records last year I found boxes of pamphlets and packets that she was given to encourage my placement in those settings.

I also found her private journals about our lives at that time. These were journals she might only ever show excerpts from to a therapist, but were meant to be private accounts. It was scary for her. I cried when I read them, because it was horrible to realize that I had made my mother feel so horrible and hadn’t known. I had not realized that anyone would have interpreted my behavior in a truly scary way, that they wouldn’t see the same causes that I was reacting to.  But she was terrified in those pages — the ones she never meant for anyone but herself to read. Even in her advocacy work, she wouldn’t say that certain events were from my life, just that they had happened to “a young person” she knows. Even the things that she was terrified about.

In the pages of that private journal, she talks about the times I would charge at or by her. To me, I was desperately trying to escape a scary situation for me. To her, it was a charging at. I would throw things, and at the time didn’t have the impulse control to find soft things in a safe space. I never aimed at people, but to her I just had really bad aim. I screamed, and I said things that made little sense — I was scared and angry and frustrated that I couldn’t articulate it. These were seen as threats. When I was put in a scary situation, I would flail and push to try to get out of it — and these were seen as violence. When she left on trips, I was taken with her because she was worried what would happen if I was left with a babysitter.

Most of the episodes she chronicled for her private memory keeping were ones that she never saw the cause for. So many start with, “I came home from work, and Savannah…” It took me until into my twenties to be able to articulate what happened before — that her second husband had provoked responses and behaviors. How he would tell me I was fat, lazy, and that I would never be competent. How he would threaten me with sending me away.  How he did any one of a number of things that would set off my behaviors. There’s no coincidence that the behaviors dramatically decreased a year after he left- at 14, I even was off medication.

Not all the behaviors were triggered by him — some of them were reactions that I didn’t know how to handle internally. Some of them were because of how my internal state from incorrect prescriptions made things harder to deal with. Some of them were from being unable to handle fear, frustration, and change internally. Change was a big trigger for me, and set off the start of my fear responses. I just didn’t have the skills to handle those states. I would go on to develop them, but I didn’t have them yet.

For me, those times were scary because of the outside world, because of confusion at people’s responses, and because of people using my being a “scary kid” as a weapon. To her, I was scary and she didn’t know and couldn’t predict fully why. She understands it now — time, observation of me growing up and learning, my finally being able to properly articulate what was happening for me in those times.

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary.

It’s not scary in and of itself. What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

I’ve had people try to justify things from the JRC’s electric shocks to denying someone an integrated learning environment, to defend seclusion/restraint to “therapy” induced injuries and even deaths using my fellow former scary kids as their reasons. The kids with “significant disabilities.” The ways that other people saw my behaviors — things I didn’t know at the time- are the same things I hear from people trying to justify violence and isolation towards kids and adults with disabilities.

They also project forward to futures that are inaccurate, contributing to the problems that us scary kids face when we grow up. They say we will become criminals, or will commit violent crime, that we will be a danger to society. That we are “sleeper agents” of mass murder. They say that of course people who have had such and such a diagnosis, especially when you are also a scary kid, will do certain things or will never do other things. That we couldn’t successfully ever live on our own, that we’ll never graduate, never hold a job for long, will never have successful, healthy relationships. That we are doomed. And while not all scary kids have mental health disabilities (and not all kids with MHDs are scary kids), those who have developmental disorders with the right behaviors are lumped in.

When I- and others who are autistic, have Mental Health Disabilities, or both — talk back with truth, we are denied. When we talk about how having xyz diagnosis doesn’t mean we will do stuff, when we point out that we aren’t mass murderers, we are shut down. When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion  and false equivalence, we are told that we are calling other scary kids lost causes. When we point out that we don’t have enough information, we are dismissed. When we disclose, we are called too close to the issue. Even when our mothers join us.

In reality, only 5% — or 1 in 20 — of those in jail for violent offenses entered jail with a diagnosable condition. The other 95% did not present as diagnosable on entry. Most of those with diagnosable conditions are there on non-violent and drug offenses, including a number of which are a symptom of a lack of supports rather than their conditions themselves. Some estimates place the rate of Mental Illness at 50% of the inmate population, and yet only a very small percentage are there for violent crimes.

In reality, these impressions of us make us targets of crimes. People with “Serious Mental Illnesses” are more than twice as likely to be a victim of a violent crime. We are targeted for sexual assault, particularly if we are or are seen as women. We are likely to feel stuck in abusive relationships, or to have people use our diagnostic status as justification for abuse. And that is just the violent crimes  — we are astronomically more likely to be victims of personal theft, and 4 times more likely to be victims of property theft.

In reality, the stigma and stereotypes that people are promoting mean discrimination in employment, in housing, even in healthcare and courts. It means having people turning their backs on friendships and relationships when they find out, even if you are relatively stable now, even if you have the supports that make it irrelevant. It means people leaving if you have a setback that they would stand by someone without your diagnostic history for.

It is facing stigma, or hiding from it, sometimes at great cost. I certainly made a lot of poor choices based on trying to hide having been a scary kid, even when I wasn’t hiding having Mental Health Disabilities.

Being a Scary Kid isn’t certain doom.

They told my mother and I that I would never graduate high school and I’d never get into college. Some speculated I’d need to live in a group home or a more intense, and that I’d never live on my own. Some thought I’d get sucked into crime based on my psych history alone. Some said I’d off myself before I turned 18, 21, or 25.

I graduated high school — my siblings, the non-scary kids, dropped out and either have or are working on their GEDs. I even aced a number of classes, and other than my last semester (which was sucked up in depression) was pretty much tops. I’ve had some unsuccessful attempts to live on my own in the past, but those had to do with daily living skills more than being scary. Right now I’m living relatively successfully on my own, even if it did follow a period of homelessness. I did get into college easily, even if I had to drop out for a mix of financial and ADL deficit reasons. I’ve never been in jail.

I celebrated my 25th birthday in August. I am alive, and though my health isn’t the best I am surviving and working towards my own personal wellness.

I have little in common with the things they assumed. My scary is now just the normal stigma that any of us, autistic, with mental health disabilities, or both, face. I do struggle, but not in the ways that were assumed when I was a scary kid.

Being a scary kid is just that — having behaviors that scare people when you are a kid. It doesn’t mean you have a particular diagnosis or neurotype. It isn’t predictive of being a mass murderer or anything else- heck, a lot of the people who are mass murderers, diagnosed with something or not, didn’t reach the heights of being “scary kids” when they were younger. Not scary the way I was, or others were.

When I point out to try not to link scary kids to criminal violence, particularly of the mass murder sort, I’m not saying that services and supports aren’t needed. I’m saying that they would be even if we never had a massive violent event. I’m saying none of us are doomed, if only we combat stigma and prejudice at every chance, be it ableism, racism, or classism that we are talking about.

When I tell you no, I mean that none of us are lost causes.

Shreds

I am not really sure how to start this post, in part because I feel like saying anything would be a risk. A risk to my on going well being, a risk to my security in housing, in healthcare, in access to the basics. But I think that that fear is just a symptom of what I’m talking about.

Last March, my placement on SSI was approved by a judge. I think my lawyer was a good one, even though he was the sort of man who terrifies me because his demeanor triggers some unpleasant memories. The judge didn’t even ask me to come into the courtroom- he decided based on my paperwork to offer me a deal which included me having a payee, which is actually something that is preferable to me because of the sort of things I have difficulties with. The waiting room was tense, and there was plenty of papers to sign, but in the end it turned out alright. My mother and I went to the sushi place across from the courthouse there in Wexford, and I had avacado and cucumber sushi.

The problem lies in what it took to get to that point. You see, the entire process involved looking at everything I can do, and find the limits, the deficits, and the flaws. Highlighting the things that I can’t do, and expounding rather than ignoring or accommodating for how they touch every single aspect of my life. There is nothing that was allowed to be “good”- not even something relatively meaningless like my IQ, which the lawyer was displeased with.

My lawyer was very thorough with his prep. Really, that is part of why he’s a great lawyer for this sort of law. He knows what they are looking for, and he is forthright. It’s a difficult process, even with the assistance in figuring out the paperwork and who to talk to to get the evidence that is asked for and so on. It is hard work, draining and demoralizing, even with the support I had.

Part of the prep work involves the lawyer working with you to help you communicate how thoroughly your disability impacts your life. I had been brought up by a mother who tried to emphasize strengths based approaches, ones that could limit some of the trauma that society can cause when your brain or body doesn’t work within the range that the average person does. This process was the opposite. My strengths were to be minimized, the limits that my disabilities put on them emphasized. Uplifting language was considered not appropriate, as it was said to disguise the impact that my struggles have.

That I believe in and on my good days fight for disability rights was even considered a hindrance  My lawyer told me he hates activist/advocate clients, and only because we have harder cases to make. The language and work that keeps us from despair, that gives us some hope that some day life will not be as much of an up hill battle, that says that we should and someday will be seen as equal- all of this was something that is looked down on and despised. The fact that we want to and can envision the sort of world where the supports and environments we need to not have to go through the SSI/SSDI process in order to survive is too uplifting, too insightful for us to need and “deserve” anything in the right now. The fact that it is just a hope that is still being worked toward, that that world where those supports exist isn’t here fully yet, is irrelevant when it is something we believe in.

The preparation process also involved undermining a lot of the work I had done to allow myself to get by in my day to day life with a limited number of meltdowns and panic attacks. I still deal daily with memories of the things that were said to me by my step father and some of the providers when I was young. I have many little things that will trigger the memories, that will make me slip into the words that were said. Before going through this process, I had a few things that I would repeat to myself to counter them- it didn’t make them go away, but it made it so that I was left with shorter periods of distress, or delayed reactions. But part of the process was to emphasize the counter arguments- that is, to repeat in a not as cruel way the things that caused me trauma in the first place about myself. To emphasize incompetence  the futility of the things I have achieved and the impossibility of success at the things that I wanted. To demonstrate less than.

I find myself, now, more incapacitated by these things than I have in years.

Throughout, I’ve clung to my advocacy and activism around disability. I’ve felt like a hypocrite, or like I was-had to be- doing it for someone else, because what was being re-taught to me was so against it all. But I’ve also felt like I was surviving, that this work was like some sort of safety line. I don’t know how well or if I would have survived it without.

Perhaps the level of struggle I’m having has to do with the nature of some of my disabilities. That perhaps the anxiety disorder processes and the tendency toward fixation from being autistic are what they call a perfect storm, moving towards a cataclysmic failure when they interact with a system that encourages devaluing. The part of me that thinks this reflects about the way that some of my friends don’t seem as traumatized as I feel from their time going through this. I know that in some cases this isn’t true- it’s just not something they want to or can discuss. I know trauma is like that, from both personal experience and from the writings of others. And yes, perhaps some really weren’t traumatized by the process, left struggling inside more while their supports and safety outside are stronger.

But as much as the part of my brain where the fear lives fixates on that, the part where logic lives knows that it’s irrelevant. No one should be coming out of this process struggling emotionally more than when they entered it. They should be in a position where the security and services that become available allow them to gain skills, either to better their quality of life or to eventually not need financial support, even if they do need the medical. None of us should be having to scrape back old skills because we lost the connections that allowed for them.

I’m terrified to post this. But perhaps that is because of what I’ve written- and maybe that fear is what has kept someone else isolated too.

Perils of (Buy?+) Copy+Paste

I have noticed something a little disturbing. Well, perhaps not terribly unusual- may actually be a standard in the world of publicists for all I know- but still disconcerting. What is this? The copying of another person’s article or release as framing for your own work.

I’m not talking necessarily plagiarism- oftentimes, the original writer is cited someplace, in a terribly unobtrusive way. Sometimes, the story was paid for from a news service.  Certainly not Plagiarism. And in the general population, it would be nothing.

But what I’m talking about isn’t just in the general public, general sphere. It’s used by the people who are supposed to be our defenders- without checking that the article or release’s approach is appropriate. It’s one thing to link to an article that has appeared elsewhere. I’ve done it, even when the article in question irritated me. But to run it under your letterhead, or to purchase it for distribution, is something else entirely.

Let me use an example that came through my inbox today:

I got a forward that was originally distributed by the people Organizing the Reinventing Quality Conference in Baltimore, Md this week. I was a bit upset by the approach that the article in the email used, so I started to check them out. From their website, they looked interesting. Lots of talking up about bringing in community living, self advocates, etc. (I’d love to hear from anyone who is better familiar with them and their reputation among self advocates; savannah@autismwomensnetwork.org)

But talking up isn’t unusual even in organizations that aren’t so supportive. It is a tough lesson to learn- one that might make an advocate, particularly one that has ASD related issues, bitter. But many organizations assume token language usage, alongside the more obvious issue of token representation. Not being sure what to think, I plugged the Lede into google.

I discovered a couple of things. It turned out to have been originally written for the Raleigh News & Observer. As a general news  source, the treatment in the article was typical, though frustrating. And it isn’t unheard of for companies the size of their owner, McClatchy, to sell distribution rights (McClatchy-Tribune).  All perfectly normal in the industry.

What bothers me is how many groups- and the sort of groups- have reprinted the article as is. Some do so in a way that clearly shows- albeit at the end of the article- that it was retrieved from a distributor, like Behavioral Health Central. NAMI- for all the issues I have with them- doesn’t even host the full article, and instead links the reader to the News-Observer’s site to read the full article. All of these have various levels of appropriateness in distributing this article. As much as it personally pains me, NAMI’s approach was the most appropriate.

But back to the email I received. This is how it started (where a byline might be):

Image shows the email, with the logo of a non-profit, followed by edit dates, the title of the article, the lede (with Raleigh in caps at the start) and no byline in the normal position

And here’s the bottom (where the full information is given on Behavioral Health Central):

Bottom of the email, with the last line of the article, followed by a name, a phone number, than an edited date and links to two PDFs, followed by the email client's buttons for "reply", "reply all", and "forward"

Someone who is familiar with journalism or publicity might think to google the lede. But my guess is that the majority of readers won’t- maybe their background is in social work, or maybe they are parents. I know the org that forwarded this to me has a primary family base.  To these “average” people, the language would appear to be authorized by the distributing organization.

My opinions on the article itself can be found in my last post. I disliked the perspective. But when a non-profit or other organization promotes an article- especially with such limited sourcing- counter to the interests of the population they claim to serve, there is an ethical problem.

Now, that was just one example- one that was specifically centered on a journalistic article that was distributed without proper sourcing.

But the problem is vaster than that. I have seen publicists copy over releases from government agencies to give context to the information their client is trying to get out. While giving context is an important step, that context needs to be in the language and perspective consistent with the organization you are representing. It is both lazy and unethical to refrain from copy editing the entirety of what you put out there to be consistent. And if a publicist were to submit something this way to a professor in college, they would most likely receive a reprimand.

I have a proposition. Why don’t we all take a moment to find some standards as to what we do and don’t put out there. Here are my suggestions:

1) When distributing an article, source clearly. Don’t cut out the original distributor. Use bylines in their customary place. I would even prefer that the sourcing be put in the by line. EX: “Michael Biesecker for the Raleigh News Observer.” But even putting the sourcing clearly at the end (EX: “Originally published in the Raleigh News Observer”) is at least consistent with Journalistic standards.

2) Use language consistent with the organizations/people we represent. While there does need to be a recognition of the language and views of the public, that doesn’t make it okay to use language inconsistent- or even opposed- to the organization or people. Instead, use it as a chance to promote their language and views, even if only subtly.

3) If creating context, don’t simply copy and paste someone else’s release for it. First of all, it’s lazy and bad work. Secondly, it limits your ability to promote who or what you you are supposed to. And occasionally, it might promote things that are *unwanted* instead.

In response to a journalistic approach

I read an article today, and it is spurring me to write two blog entries. This one addresses the article itself; the other talks more about Non-profit use of articles and releases written by others and some ethical issues surrounding that.

The article in question was published in the Raleigh News Observer under the title “Study: Four killings reported in rest homes“.  The lede is “In the past two years, at least four residents of North Carolina rest homes have been killed by fellow patients who had histories of severe mental illness and violence.

In all honesty, it’s a pretty standard approach used in journalism to use a “bloody” headline and/or lede to grab attention. But is it the right thing to do, especially when talking about an already vulnerable population? Does it not contribute to some of the problems of stigma we face today, not only for those with Mental Health disabilities, but in the larger disability community?

Most of my comments here won’t make sense unless you’ve read the article. Go on, click it, I’ll wait.

First off, the placement of people in nursing homes is actually a misappropriation of the implications of  the Olmstead decision. For the vast majority, the nursing home is *not* the least restrictive environment, and for some it is further inappropriate. The language in the article doesn’t seem to recognize that the warehousing of patients in nursing homes is exactly counter the opinion put forward by the courts.

This study further worries me, because the way it is presented starts out with wording that is extremely negative about people with MH disabilities, and might lead those who do not read the entire thing to assume that taking people *out* of institutions was wrong. The public might not be familiar with what exactly Olmstead was, or even the breadth of human rights protections the ADA affords.

Towards the end it makes comments on the horrible conditions. If you *do* know your history, you can recognize as rather identical to the sort of institutional care that we have been trying to get people out of, but few people know their institutional history.  It does not adequately suggest what the appropriate measures would be. It does not call for change, but instead allows the imagery to “fester” in the reader’s mind, where someone with less of a background in the issue might come up with some very frightening “solutions” indeed.

This perspective is very much one that favors the provider, as well as the social worker voice, over that of the consumer (remember, nursing home placement is generally speaking 18+), especially with the emphasis on homelessness as the only visible alternative (rather than showing examples of the underfunded and harder to get a spot in alternatives) and this treatment leaves me worried. While yes, it is true that many would currently end up in the streets, very little mention is given to the sorts of programs that are *supposed* to be the alternative, but are under funded.

How are we supposed to rise support for something to be appropriately funded if the information we give out doesn’t explain what exactly that *means*?

There’s another question here, too, when it comes to the professional view bias. It’s one that has been repeated over and over in the history of institutional placements of all sorts. Owners and superintendents have manipulated the public perception of various populations in order to increase their standing, power, and funding in the public. Just as a politician manages public perception of himself, professionals manage their and their clientèle’s perception. And so half-truths and misleading information about populations in institutions abounded.

While today, the Eugenics hot topic focuses on pre-natal testing, in the early 20th century the argument was focused on Sterilization. The idea was that those with developmental or intellectual disabilities were either too fertile, or unable to protect themselves from unwanted advances. With the rise of the concept of Social Darwinism in the late 1800’s, it became more and more worrisome that there was a possibility of so called “degenerates” reproducing.

At first, some superintendants supported the idea of sterilization privately. There was an initial reluctance to publicize this, though, for fear that they would lose funding for patients that, once un-sexed, might be returned to the community. Over time both the concept of the disabled as a public menace and issues of over-population in institutions grew. Eventually, in the face of a lack of space for larger and larger intakes, they shifted their public support to sterilization. Privately, their letters show that as they gained more public support for the procedure they grew doubtful about the actual usefulness outside of institutional control. *

Back to the lede and title.

The fact that it leads with “four killings” caused by “other patients” with no mention of the deplorable conditions until later on is extremely troublesome. It uses, instead of the entirety of the problem, something that PLAYS SPECIFICALLY on stigma the public holds towards people with MH disabilities. In fact, there is very little relevance to the subject of the article in the lede. Deplorable conditions should be “bloody”  enough to grab headlines, and that is the real focus of the article.

Even if you are a parent rather than an individual with MH disabilities, there needs to be a recognition that leading with this sort of stigma will *not* help in the long run. Instead, it will just perpetuate the stigma so that when someone who is a minor right now reaches age of majority, the stigma will still be as virulent as ever.

In my eyes, to ignore all of this in writing an article on this topic is negligent- not as a journalist, but as a human being.

*For more information about the history of the treatment of the Developmentally Disabled, I would recommend Trent’s “Inventing the Feeble Mind

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.