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.
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* 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.
In the past couple of months, I’ve spent a lot of time reviewing curriculum and reading some research papers/essays that some people trying to be decent allies have done. A lot of them do an okay job on some things, and a less great job on others. But the most common issue seems to be conflating “disability” and “impairment” in a way that reflects a relatively un-nuanced understanding of the larger disability rights movement.
The most basic definition of the Social Model is along the lines of a person is disabled not by their impairment, but by their environment. Sadly, many people fail to look at this and see more than “society alone is to blame for disability.” I see people who say that social model isn’t realistic, based on this misconception, for individuals with extensive support needs.
This fails to take into account the possible corollary that within an appropriate context, a person’s impairment would be irrelevant to their abilities. Here’s an illustration of that, and a very standard one:
Imagine a wheelchair user named Mary. Mary’s condition includes impairments in being able to support herself due to muscle weakness, so she needs to use a chair to get around. Mary goes into a general world, and there she finds that people who she shares interests with meet in a space that is up stairs without an elevator, and that the coffee shop that said it was accessible actually has a stoop too high to wheel over. But if Mary goes into Accessible Town, elevators are in the buildings and the buildings were built/modded in a way that doesn’t involve stoops, and where the halls and doors are wide enough for her electric chair.
Mary didn’t magically stop having her impairment. Instead, her environment no longer interfered with her ability to participate fully in the community of Accessible Town. Unfortunately, people look at the stories of hypothetical people like Mary and go on to claim that that is all well and good for people with physical impairments, but that those with intellectual, developmental, or psychological impairments. This is inaccurate.
Bob is non-speaking, and uses alternative communication. In general world, people become impatient or dismissive because they do not want to deal with alternative communication. (This is similar to someone who doesn’t speak the typical language in a country they are visiting, unfortunately.) Bob goes to Accessible Town to meet his friend Sue, who is Deaf. People wait for his responses, don’t try to speak for him without his permission, and ask for help understanding when they do not. Bob’s other impairments might preclude him being able to learn much of the sign language his friend Sue uses to communicate, but her interpreter is great at making sure both of them can understand each other, even though they are speaking different languages and styles.
Bob is still non-speaking and still has intellectual impairments. But he is able to not only be actively involved in this community, but to communicate and hopefully have a good time with people with different access needs entirely. In this particular context, his impairments are not disabling him from this sort of participation. He has the support, both technically and emotionally, to be a full participant.
Some people see this as just a fantasy. The standard that they hold up as “too disabled” shifts to higher and higher support needs each time we try to explain how that hypothetical person could be supported. At some point, it has become a game, which is why my examples of the hypothetical Accessible Town will end. The truth is that what access looks like will vary by person. It isn’t an easy thing at all, especially in our current world, to create environments or communities that balance people’s access needs. This seems especially true when the most needed aspect of that process is patience and trust.
Note, if you will, that a condition that may be referred to as a disability might have traits that are not impairments in and of themselves. While stimming can be a coping response to an impairment, perhaps with self regulation or sensory hyper awareness, it is not necessarily so. In some cases it is simply used as an expression of emotion- atypical, sure, but not an impairment. The only disabling factor when it comes to stimming, barring those which involve self harm, is that other people are jerks about it and project prejudices and bigotry about how people are supposed to look. Essentially, it is simply other people’s assumptions, not the behavior interacting with the environment, that creates barriers. Yet it is one of the traits by which Autistics are diagnosed.
The next thing is something that I don’t know how to introduce properly. I see a lot of people approach the idea of Neurodiversity as though it is some new big thing completely different from other disability things. The truth is that it simply is applying the larger disability rights movement to the experiences of people with certain impairments, often defined as Autistics.* It is not some great new thing that we came up with via spontaneous generation, without previous foundations. It was built on the work of many people who live with a wide range of disabilities.
When we talk about both needing disability supports and treating our impairments as differences, we are not being disingenuous. We are not “talking both ways.” And it is not about denying legitimate supports. It is an incredibly nuanced issue, but one that can be summed up in a phrase that isn’t terribly new or specific to Autistics, and is in fact used on materials put out by the Administration on Intellectual and Developmental Disabilities (AIDD):
“Disability is a natural part of the Human Experience.”
This is the core idea here. Disability is one of many natural variances in what the human experience is like. It is not inherently shameful, ”freakish,” or unnatural. It does not rob us of our humanity– that is instead done by the perceptions of people. It is part of the amazing and beautiful diversity of our amazing species, Homo sapiens sapiens. It is a part of who we are and how we are put together.
This diversity can be powerful whether you are a religious creationist (indeed, there are hymns about this), an Atheist who believes in an unmitigated evolution, or any combination thereof. On a personal level, I believe in theistic evolution, and the vast diversity which allows for the survival of the species is something amazing and beautiful and spiritual for me. But I believe that the fact that we are so amazingly diverse, that we live in such a diverse world and are such a diverse species, is something that can be beautiful and powerful regardless of your beliefs. (Reminder: this is not a post about evolution or religion. These are tangential issues.)
When we talk about Autism or any other condition as a difference, we are not inherently denying that people with those conditions face disability. We are talking about how our conditions, and the impairments that might come along with them**, are a natural difference in the species. That those differences, like any number of others, should not bar access, dignity, or respect. That our differences are not things that should be eliminated, but that we should work towards a society in which difference is not a bar to access, be that because of changing attitudes or changing our physical environments.
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Talking about these distinctions isn’t something new. Please consider checking out some of the links below in which a number of other writers have covered similar issues.
* I personally consider Neurodiversity an issue that covers a wide range of individuals whose brains don’t exactly fit the “typical” brains or ways of working.
** Some people do not follow this, but they are a small subgroup who are often not aligned with the principles of the movement.
Content: ableism, internalized ableism, mention of hospitalization and depression, mention of denials of reproductive justice to people with disabilities.
When I was 20, I did not love myself.
I was tired. I had been in and out of hospitals, been under the care of providers hopeful that a pill would fix my brain. I had been told repeatedly that there was something “wrong” with me. That there were somethings it wasn’t “right” for me to do.
I had moved back home, having had my stint trying to be what I thought an “adult” was fail. A lot of my plans had failed: I’d been so unsuccessful at maintaining a home that I became deathly ill; I hadn’t sought out the support I needed at college, and had to drop for lack of funds; and I couldn’t get a job. I saw myself as incapable enough that I wouldn’t be able to kill myself, and went to the hospital again. Case management was better this time than they had been in the past. They were involved, and we worked on a self care plan.
“What about having kids some day?”
I told her I didn’t think so. I feared. I feared that I’d be incapable as some people assume about people like me. I feared that I’d be stuck in a cycle of hospitalizations, and that having a kid would mean they would lose their mother every two years. I feared that I wouldn’t know how to get support— I certainly didn’t know then what my needs were well enough to articulate them. I didn’t even have a strong enough concept of disability to think of it in terms of supports. I just feared, and I hated myself, and I pushed both of those feelings away by ruling out the possibility. I told her no, and refused to engage in that discussion.
People like me aren’t just told these things. Some of us, like the poor and People of Color, are or were forcefully or coercively sterilized in procedures we didn’t want to consent to. Some of us were denied even the knowledge that we had something to consent to. Some of us are coerced with them, denied a valid choice. We are lied to about our health, about our ability. We have our lives reduced to a gene, to things not to want our kids to inherit. We are told that having or keeping our own kids is by definition abuse. We are even sometimes ordered to go directly against our choices, or threatened with those orders. Our attempts to speak back are often co-opted by groups we may or (as in my case) may not believe in. The idea that we might even be sexually active in a way that might lead to us being parents is even seen as remote.
To be clear: I know plenty of people who have chosen not to have kids. They made a choice to be child free, of their own free will. It’s fine if they stick to it, and it’s fine if they don’t.
I don’t consider my choices when I was 20 about kids to have been of my own free will. My responses were societally coerced. I had so much self hate, self doubt, and fear that I had internalized that I didn’t feel like I even had a realistic choice. I thought that the choices open to me were to abort or put a child up for adoption. I had been told for so long that someone like me would by default be a bad parent, or an incapable one. So I felt like I had to reject the very idea of having kids when it was offered as a part of my future.
Around this time, I became more active in disability rights work. I’d been doing advocacy since I was very young, but hadn’t connected with the larger disability rights movement. I started writing and believing in disability rights, coming to identify as a person with disabilities rather than hiding them where possible. I even, at one point, had a friendship end because the other person kept arguing that people with intellectual and/or developmental disabilities who need supports shouldn’t be having kids. I believed that People with Disabilities had these rights.
I just didn’t believe in them for myself. I had spent too long in choices dictated by fear and internalized ableism, and uprooting that is a long process that never seems to be over.
About 5 years ago, my younger sister found out she was pregnant. She was 16, and it wasn’t intentional. She was presented with her options— I know, as I was one of the people who went over them with her— and she chose to carry and keep her child. I won’t go into too many details about her pregnancy other than to note that yes, the hormones that come with pregnancy interacted with her disability (she has Traumatic Brain Injury). But she made it through, and the actual birth was relatively easy. My niece was born, and was and is gorgeous.
My sister has had the support of our parents and other family members in the 4 years, almost 3 months since my niece was born. I watched (and helped be a part of) the supports that she needs to be a successful parent. During this time, I became less and less afraid to ask for supports and accommodation, and slowly gaining the words to communicate and to define what my needs were. I also was becoming aware of the “wants” that I had been avoiding thinking about because they didn’t seem reasonable.
I realized that I would like, someday, to raise a child. I began to think about what I would need to have in place to be the sort of parent that I want to be.
There are some problems, though, that I’m more worried about than others. I have some reproductive health issues that sometimes, but not always, result in infertility. It is treated through a combination of medications that includes Hormonal Birth Control. The reason, in fact, that I’m not currently passed out in my shower or vomiting in pain due to this condition is because of those pills. It raises questions, both about how I’d be able to handle/treat my health conditions when trying to have a child, and if I’d be able to birth the child my self. I’d like to, but if I’m not there are other issues involved.
Fertility treatments can be harder to get when you are disabled. While it is against the law for a healthcare provider to reject someone on the basis of disability, this type of provider can reject someone for personal reasons. The Office of Technology Assessment of Congress did a survey of artificial insemination providers, which is one of several options in infertility treatment. They found that a large percentage screen for psychological, developmental, and chronic health issues when doing tests to decide on treatment recommendations. For example, 79% screen against hypothetical patients with serious genetic disorders. Another study found high rates of doctors deciding against treatment for or rejecting hypothetical patients with various disabilities, including past suicide attempts (around 40% answered likely to turn this group away) and bipolar disorder (34%). Adoption, too, is more difficult.
And this is just in the seeking to have children portion of things. Even if my health issues have not impacted my ability to have children, biases against parents with disabilities result in higher inappropriate removal rates, unfounded reports, and evaluations that are not built to accommodate the adaptations that a parent with disabilities may have established. The Family Law system is simply not designed in a way that accommodates people with disabilities. (Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children from the NCD has several chapters on these issues.)
I continue to think about supports, as well as the sort of environment I’d want to raise children in. I know that I’d need a partner dedicated to the family we would build. I’m good with kids, even babies, but I do need times where I have breaks to restore my stress, anxiety, and frustration levels. An involved partner would help with this. I might need alarms and reminders, but these are things that are more an more on the market for any parent. I personally want to raise my child in a Jewish home, with a Jewish co-parent. And, of course, for our family to be one that is highly pro-disability rights.
I want to have children. I want to raise children. Even though I’m frightened. Even though people will challenge if it’s a right I, and people like me, should have. Even if it’s not going to happen for a while. Even though it will mean needing different supports than I need right now. It doesn’t negate the fact that I’m pro-choice any more than it would for any other person wanting to become a parent. To me, it is about choice— about choosing the option that is right for me, myself, rather than having my choices about my body and my life made by someone else.
This is a choice that I’m wanting to make and someday follow through on— and finally, it’s of my own free will.
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 organizationswould 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 toothers, 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.
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.
I have things I want to do, want to write about. I wanted to write about disability voting for Persephone Magazine (I contribute occasionally, though lately it’s mainly been food posts). I’ve had a number of things I intended to write about for here. But every time I’ve tried to sit down to write something prompted by myself, I’ve ended up staring at the writing field blankly.
I’m frustrated with myself. A part of me spends time berating myself, reminding me that I can and do write fairly well some times so I ought to be able to churn something serviceable out when I want or need to. It’s more than writer’s block- I get that too sometimes. I have all the ideas there, but the brain fog has been interfering with my ability to put them into the text box coherently.
I know where the fog comes from- it’s my fibro and arthritis pain mixing with my neurology. But I also know where the frustration and the self doubt comes from too. I’m not the only one struggling with that one.
I’ve had friends who have told me things about their struggling. Some do have brain fog, but a number of them don’t. Some have had disabilities their whole lives, some have had them without words for them, and some who gained disabilities later on and their lives. Many have very different tasks that they struggle with. Some of them struggle more with tasks I also struggle with. A number of them struggle mainly because the things they need to succeed aren’t met or are met hostilely.
See, it’s the hostility that makes a lot of it all worse. A hostility to the idea of alternative needs in order to accomplish things. Hostility to the idea that one experience of a situation is not going to be the same for each person. And this hostility breeds some dangerous, some might say poisonous, memes in our culture.
I think I’ve talked about memes before, not in the internet sense but in the anthropological and sociological sense. They are basically a unit of culture. An idea, an image, archetypes- these are memes, elements that make up culture and society. We live in one which perpetuates hostility towards people with disabilities. And a lot of the memes that make up that hostility are ones that we find ourselves repeating when we are frustrated.
That our needs aren’t real. That we are actually just not trying hard enough. That we are actually just bad people, or lazy people, or selfish people. None of these are true, but they are memes in our society that we have for people.
There’s lots of things that perpetuate it. Some of it is direct- people actually saying these things. Some of it is a consequence- someone using these views to “legitimize” denial of access. And some of it is subtle- like inspiration porn. A lot of peoplehavetalkedabout that last one in recent months. But all of it is a part of our society and culture. Not a good part, but still a part.
And we are all taught culture through these memes. It’s not an avoidable thing. True, some people don’t get the direct impact of it from the subtle parts alone. But they get it indirectly, from the messages that the people around them absorb and then act upon.
It is impactful, the expression of these memes. Someone with attention issues might need to doodle to keep their mind on a speaker, but get called unprofessional for doing so even though they need it to process what they are hearing. Another person might suffer from chronic migraines when around certain stimuli (like florescent lights), but have their need to have alternative lighting treated as being finicky or annoying. Someone who might need things in simpler language might get left out of choices about their lives, or are told that their goals aren’t reasonable without explanation. A child who uses an AAC device might find themselves or their parents pressured into a segregated classroom.
Years of this cultural environment takes their toll. When a person subject to it, to the “pointy end” of it, becomes frustrated about something, it turns inward. The fact that they’ve worked themselves to exhaustion, or have agitated a difficult part of their health by going beyond where their limits are, doesn’t prevent them from calling themselves lazy. After all, other people have said it about similar efforts by other people. The same with worries about being called “selfish” keeping people from asking for accommodation, or “drama seeking” when you report discrimination. None of these are legitimate statements, but they are all things that society’s attitudes attempt to legitimize through cultural means.
We feel these things as consequence. We feel that maybe we are lazy, maybe we are just bad people, selfish people. It is a difficult thing to stop thinking when things go bad. It’s hard to unhook those representations we see, the ones that tell us that failure is just because we didn’t do x enough. That we aren’t y enough for our struggle to be real, that we must be some sort of bum, drama queen, or whiner.
But it’s not true. We’ve lived, survived, a hostile world that would rather believe those things- that people like us must just be lazy fakes, that we are just bitchy people, that none of our reality is true. We’ve been raised in a culture that believes those things, we’ve had it ground into our minds.
Just because we resist doesn’t mean we don’t stilll have that thought in there. It’s been ground into us. Even those who come to life as a PwD later on, as it’s a societal thing, not an individualized thing. It’s a horrible thing, a painful thing, a thing that challenges us and makes us want to destroy parts of ourselves at some points of our lives.
We are real. And we don’t need to destroy ourselves. We don’t.
The medication I took earlier in an attempt to dismiss the brain fog is wearing down a little, as it doesn’t last too long, and soon I’ll be back in a place where the ideas are there where the words are not. I’ll read things and have feelings, but barely be able to come up with a way to say that I have them, let alone make a meaningful or thoughtful response. I’ll be able to put together other people’s points into meaningful words, but be unable to order my own points. And I will be frustrated at some point.
And I will survive it. Maybe I’ll come back to this, or you will, to remind myself, ourselves, what the self-doubts and self-flagellations really are- internalizations.
I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.
Let me explain- it’s not that I’m against someone deciding to learn a new skill that they want or need to learn to achieve things that they want. I’m not against teaching a kid of any neurology new things as they explore their world. But there are some things that aren’t worth the trauma- the long term emotional damage- of how they are taught. Or, at least, of how they are taught to Autistics.
Recently, I was teaching a friend how to do dishes. Step by step, gently, with examples and tips. Feel as you wash- if you feel any grease or food bits, it’s not clean yet and you need to keep scrubbing. Later, I paused in the middle of pouring myself some water. You know, that’s not how I learned to do dishes. I learned it traumatically.
My mother was working when we first had “big” solo chores. We rotated chores between all three siblings. My mother’s second husband, whose death I talked about in my last post, was the adult on hand for chores. He herded me into the kitchen, and told me to do the dishes.
It wasn’t “casual” ableism that he used then. It was fierce and directed. He loomed over me when I said I didn’t know how, and used it as “proof” that I wasn’t really smart- the only alternative had to be that I was lazy. So I tried doing the dishes while he went off to do his thing. I pondered on the fact that there’s cross cultural archetypes of Cinderella while I tried. When I finished, I would declare it with relief.
He would loom again, and wave the dishes in my face. He would tell me I was obviously trying to get out of doing my fair share, because they weren’t done right. And so I did them again, over and over. I think I threw up a couple of times at first- I hate the oily texture at the bottom of the sink when people fail to scrape their plates, and the smell of used dish water. Letting the water run was not allowed if Rick was watching, so the smell and oilyness of the first rinse was there, while the soap bubbles waited in the second sink for a rinse. Not even gloves were an option- instead, I was to learn to deal with the sensory assault that was my “fair share” of keeping the household.
I believe he enjoyed his use of humiliation. His combination of verbal and physical intimidation was effective in eventually teaching me basic skills like this, the very technical skills that are the building blocks of independent living skills. The process was repeated with a lot of skills and “skills”. Vaccuming and laundry went hand in hand with passing, with not looking “crazy” and not echoing “nonsense”.
The Wise man doesn’t speak what he knows. And I wanted to be wise, because according to Rick, no one would believe I was competent.
It was better when my mother was home, but there would be little reminders that would just seem stern without the context that happened when she was at work. But the repetitive enforcement of my lack of skills, of how bad I was at covering, at passing, was just as destructive if not more than the times he loomed over me. The same things I observe being used to teach kids with similar behaviors today were the hardest part.
When the inevitable meltdown happened, it seemed, from the notes she took, unprompted or triggered by things that were relatively innocuous. That’s not to say I wasn’t easily triggered before, but they were always specific things, things she could figure out.
Rick had been gone for more than 5 years before I could articulate half of what happened to me. It was two more before I could do it well enough to get it across to my mother how much she had missed.
The damage done in the name of teaching me skills isn’t worth the skills. It isn’t worth the years of self hate, the years of denying myself the services and supports I needed in order to prove his tirades wrong. It isn’t worth the nightmares I still have of his eyes when enduring forced eye contact.
Look me in the eyes. If I let you grab my chin and point it somewhere- especially at a face- you know I trust you.
You want to talk about how hard it will be for your son? How you just want your daughter to get married some day? Stop. Stop thinking about your own wishes, your own images of how your kid’s life will go. Look at the skills they show interest in. Find what they are personally ready for, instead of what some book says is “developmentally appropriate.” Let them build their own image of what success is.
Because the trauma of forcing someone into a schedule they aren’t ready for? Of forcing unneeded skills? Of removing non-harmful but socially difficult coping skills? Of holding up your own wishes and ideals as the goal?
[Content: Abuse, Ableism, murder, death, grief, relief, and feelings about these things.]
This time last week, I was getting ready for both the DC and virtual vigils for People with Disabilities who have been murdered by their family or care givers. This time last week, I was also learning that my primary abuser was dead.
The bottom line is that we live in a world where our basic blocks of culturedevalue our existence to the point where our murders are called Mercy Killings. Our murders become about the burdens we place on our parents, on our cost to society, and on non-disabled people’s projections of our possible quality of life. Even our names are erased, made eternal children regardless of our age of death because of who it is who killed us. George Hodgins was 22, and still the headline read “Sunnyvale Mother Kills Autistic Child.”
When I was a child, Rick, my mother’s second husband, excused his abuse of me as treatment. The less excusable stuff he saved for when my mother wasn’t home. Sometimes, he even baited me, purposefully getting me wound up so that I would act out in a way that would justify what he wanted to say or do.
And people believed him. The cops believed him the one time I got the nerve to call. The parts my mom saw made her believe him, at least for a while, and her notes about the behaviors he triggered are scary. In them, I look irrational and dangerous, while in my memories I was provoked and terrified. Without knowing the cause, a kid like I was screaming, or charging to escape, or throwing myself into walls is scarier than I ever saw myself. He played my needs to suit his and to make the unacceptable acceptable. He provoked the worst to suit his own behaviors, to make sure I fit the idea of deserving what happens that we are fed daily.
When the vigils were announced, I decided that those of us who couldn’t make it to a live vigil should have to right to hold vigil as well. It’s an emotional topic for me, how people from rural areas and housebound folk are discounted in movements. Even in the (broader) disability movement, there’s a tendency to devalue those who can’t make it out to a vigil or a rally. It saddens me, it angers me, and it motivates me. So last week was spent preparing for the virtual vigil.
When the time came, I was able to do it from the Washington, DC vigil’s site. We used tiny chat, and it was kind of cool. I had everything prepped for the time, I only had to show up and do it.
Then, Friday midday, I called my mom and heard. I heard that I was free. That the constantly looking into the crowd in fear he would be there could no longer be fulfilled. That we knew where he was, and knew he’d never be able to inflict harm on me again. That all the damage is already done. That he had died, natural causes, in Pensacola, Florida.
I went into shock about an hour later, though I had thankfully managed to meet up with Melody Latimer by the time it hit full force. Thanks to her, I didn’t accidentally walk into traffic or misstep off the metro platform. She made sure I got myself food if I wanted it, and then plopped me down in a safe space so she could work and I could process and come out of it.
The same time that I was mentally preparing myself to run a chat vigil, to mourn fellow people with disabilities, I was writing a letter to friends to tell them about the end of my own nightmare. As I prepped on site that evening, I realized that I would no longer have to fear death from his hands. As I reviewed the list that managed to fit on the fliers, I realized that all it would have taken was a slip, a weight distribution in the wrong area during restraint, a swerve when I tried to escape the car, and my name could have been on that list. That that list is truly my peers.
When a gentleman came up before the vigil and commented that we had forgotten a certain little boy whose mother had poisoned him, all I could do was thank him. The number of names that could fit on the flier or the poster board is such a small percentage of the names and stories of those killed by their care givers. It’s a countless wordless horrors, the murders that society mitigates because of our disabilities, the deaths inadequately mourned because our would be mourners are told people like us would have been better off.
I feel sick, too, to think of how many of them might have been stopped if only our world didn’t dismiss our abuse as needed. If our lives weren’t devalued, how many of the PwD who were starved to death before the neglect was noticed would be part of that count? How many people would be growing older and living if the tiny abuses and dehumanizations that make people justify murder weren’t justified by disability? If we lived in a world where my abuser hadn’t been able to get away with it as long as he did would the people we mourn still be alive?
The virtual and in person DC vigils went well. We remembered. We tore down the excuses and justifications. We mourned.
In the hallowed out space of relief, I remembered what we were fighting for. Just because one of my nightmares was over didn’t mean my future was safe, or that other people’s nightmares couldn’t come true.
One week ago, we observed the deaths of the people for whom our fight for equality comes too late. We hoped to someday never see a new name on the endless list. We hoped to change it all, one day at a time. We mourned our dead, and renewed our commitment to fight like hell for the living.
The next day, Daniel Corby, aged four, was killed by his mother.
I wish I could say something new about George Hodgins.
I wish there were words to really express
what a tragedy his death is,
and the deaths of other Autistics,
other People with Disabilities.
There aren’t words.
Just as there aren’t words to express
what horror and tragedy
the Murder of Trayvon Martin
Who was Black, but not Autistic
or of Stephon Watts, who was black
and Autistic and scared, holding a
butter knife, or the murder of Ernest Vassell last fall for
holding a toy gun while Black
and Autistic. (Or the arrests
of Neli Latson, and of his mother
for calling people on racism.)
This is what has been done to
Young Black Men in this country.
To Young Black PwD.
There aren’t words.
There aren’t words for
the horror of baby Rylan
Rochester, age 6 months,
whose mother thought he
might be Autistic after working
At a hospital serving Autistics
and so she smothered him.
There can’t be words.
There can’t be words for
The grief, anger, and fear
of living in a world where
Hate, fear, bigotry, and
complex social mythologies
Let people make excuses
for murder. Lets them empower Blais after her sentance, or
air Latimer’s vitrol while
blocking dissenting comments.
All I can do is show you other words,
and hope they can be enough.
March 30th and on, Vigils for People with Disabilities Murdered by Relatives and Caregivers are happening under the direction of ASAN. These are cross disability events. The current list of vigils is at the above link, and if you absolutely can’t find a way to get to a vigil in person, I’ll be hosting the virtual vigil via tiny chat for those who are in rural areas or are housebound. (After all we are people too, even when our disabilities keep us in our homes or we live in the country.) But please, try to get to or organize a vigil in person if at all possible!
“Remember, you weren’t the one / who made you ashamed, / but you are the one / who can make you proud.” - Laura Hershey, You Get Proud By Practicing
I think a lot of the people who read my blog are also people who have read Quiet Hands by Julia Bascom. (I actually already linked to it in my own Rocking (and Flapping) at a 1000 Revolutions a Minute.) If you haven’t yet, please go do so either now or after you’ve finished reading this post. Julia got a massive response, as Quiet Hands went viral. It became very obvious that it was describing an experience that a lot of us have either experienced or have observed, sometimes unaware of the emotional and communicative consequences.
One of the devastating effects of the phenomena that Quiet Hands describes is how it silences Autistic communication. For many of us- and particularly those of us with verbal communication difficulties- our hands are our primary communicative tool1. We stim with our hands, we supplement our language with gestures and pantomime, we use languages like ASL with our hands, we type with our hands, and even utilize AAC devices with them. Things we do with our hands is how we connect with one another- even if that community building isn’t recognized by others. So when our hands are stilled, we are silenced and isolated.
What, with this context, does having “Loud Hands” mean? Obviously it would have to embody the opposite of- and possibly counter to- the silencing described above.
The Loud Hands Project (which is being run as a project of ASAN) demonstrates a pretty good idea of what it could mean to have Loud Hands. The project description defines Loud Hands as “autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.” Essentially, efforts that work counter to the silencing and discrediting that comes with a culture that denies Autistics the ability to communicate in ways that are natural to us.
The Loud Hands Project (LHP) is planning on being a transmedia project, spearheaded by Julia Bascom. The current focus is on putting together a written anthology that will serve basically as a foundation document. Submission guidelines/call for submissions for the written anthology went live on January 8th. They include a number of prompts on what it means to be Autistic and aspects of Autistic culture, but they welcome submissions that aren’t answering the prompts while still reflecting “questions about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively as having loud hands.)”
From there, the plan is to focus on multiple mediums as a way of documenting and curating Autistic culture and community, particularly as related to the afore mentioned concept of what Loud Hands means. And I do mean curating- one of the stated goals is to collect and store some of the founding documents of the Autistic community.
Another major direction is looking to be video projects, starting with the trailer (more on that in a moment). I’ve noticed a lot of brain storming for future videos for the LHP media collection, but the actual non-written media submissions aren’t open yet. (Opening of those submissions is still to be determined.) They are welcoming your ideas/brainstorming for future non-written submissions though! Eventually I believe that they will join the trailer on the Loud Hands Project Youtube channel.
In the first 24 hours, the indiegogo campaign raised over $3000- and over $6000 at the end of the first week. As of 9:30pm January 10th (when I’m composing this entry) it hit $7463 USD. Fundraising ends March 15th with a goal of $10000 USD. UPDATE: January 14th the $10000 goal was met. They are still collecting funds though- see the bottom of this post for more on this!
You can see the support levels, along with the number of people contributing at each level, at the LHP indiegogo page. Each support level has a different corresponding “reward” for your donation, ranging from a thank you email, to PDF pre-releases of the anthology, to signed hard copies donated to libraries in your name.
I personally feel that it is a much needed project, and am totally excited about it. As such, I’ve been trying to contribute in any way I can to this effort. I wrote the Visual Transcription mentioned above, as well as designing the Blog Badges (shown below) and writing most of the how to on using them.
The large blog badge, which I'm using in my own side bar; 170x300 pixels
I think another interesting feature of the campaign is how various accessibility measures have been added.
The visual transcript for the trailer was requested before the campaign went live, which is kind of a big deal- while captions are becoming more popular, visual transcriptions are not as common. After all, they are time consuming to create- more so than image descriptions- and like image descriptions can be hard for people with visual processing issues to write. But they can be a big deal for visually based messages becoming accessible for the Blind, visually impaired individuals, and those with visual processing issues.
Additionally, there has been a recognition that language processing difficulties can be a barrier in sharing stuff like this. Two days after the campaign went live, scripts for sharing LHP‘s campaign went live.
This isn’t as uncommon to be accommodated, though outright recognition that it is an accommodation is, I think, less common. More often scripts get framed as “We recognize you are a Busy Professional Person™ who doesn’t always have time to handcraft sharing emails, so here’s an example you can use!” It has become something that, when present, isn’t seen as an accommodation, which would be great if it wasn’t for the resistance that those who do need this particular thing usually get when they have to ask for it. I think that in this context, the fact that the scripts are openly recognized as having an access function as well as being given in an overwhelmingly supportive manner in response to requests is significant.
And, of course, the blog badges have image descriptions and I’m going off to caption the lyrics to the song in the trailer via Universal Subtitles tonight. (Which means they’ll be up by the time this post goes live.)
I hope you’ll join me in supporting the Loud Hands Project. I hope you’ll link it, share it, tweet it, blog it, and post it. I hope, for those who have the money for even the lowest level of support ($10) , that you’ll donate. That you’ll encourage others to donate. And, once the fundraising campaign is over, that you’ll continue to support the projects of the Loud Hands Project.
I believe that we all should have Loud Hands, and that LHP is a great way to facilitate that. Not everyone is in a position where they can go and be safe stimming in public, or writing long blog posts, or have the supports to do speeches or attend protests or go to conferences like Autreat. But it is possible for some of us to do some of the little things- making a video or a painting, answering a mini-prompt, constructing things in our own natural languages that say, “I am here. I exist. I can be proud.” These are the core of what it means to have Loud Hands.
The big things are great. But sometimes it’s the little ones together that end up being the loudest.
1 I recognize that some of us also have mobility difficulties that make using hands in particular not something that is doable. If you can think figuratively, hands is a stand in for all the other non-verbal techniques that people use to accomplish the things we are talking about. Our hands here are not just literally our hands, but our own means of communicating. The same goes for words like “voice” and “speaking”.
UPDATE (January 16th, 2012): On January 14th The Loud Hands Project met their $10000 USD goal. That’s right, in 19 days you- the supporters- met a goal that was planned to take 80 days. Great Job!
Seeing how much our community needs LHP, and with encouragement from indiegogo, LHP is going to continue fundraising through the original March 15th deadline with benchmark goals at $15,000, $20,000, and $25,000. You can read the details on the projects at the Loud Hands Project blog, but they include more videos, more documenting of our community, more supporting Autistics pursuing community, and the launch of the website and all of the resources that will bring.
It’s exciting- exciting because we need it, and exciting because it means that we won’t have to wait for the anthology to be a success before LHP will be able to start bringing more projects to us.
My blog has recently been added to www.autismblogs.org, which is part of one of the largest networks of blog directories on the Web. Please visit my blog's personal page to vote for my blog and comment to other blog users.
