May 1 is blogging against disableism* day. I had something planned for a while, but I’ve been staring at my computer, unable to bring myself to put together the bits that I wanted to. And that is okay, it really is, because some days that is just how my brain goes.
So instead I’m writing some minis into one post.
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1.
I saw a tweet today with one of those titles that enrages me with how misleading it was. It was talking about people who use disability services at the airport under false pretenses. Only, it took until nearly the end of the article for them to specify they meant people who are capable of standing in line but use the complementary chair JUST to get through security. So much of it contained assumptions and sterotypes about what people who use chairs in airports are like or doing. So much of it builds hostility.
I live with a couple of conditions (beyond, obviously, my developmental and MH stuff) that cause chronic pain and variable mobility. Some days, I can move about fine. Some days, I can’t get out of bed for hours. And somedays- more often when I travel- I need my cane for all or part of the day. My activities impact my mobility sometimes, too. If I abuse the advantages of a “good” mobility day, I’m more likely to have a “bad” mobility day the next. If I walk too long a distance (and it’s not always a reliable measurement) for my body that day, there are consequences. Standing for certain periods of time, again variable, have consequences. Sitting for long periods of time also have consequences. And those consequences aren’t always next day consequences. Some are immediate.
My last trip flying was the first one that I took care of myself by asking for help up front. This is after years of having a progressively more difficult time- of having my joints become so inflamed by standing too long or walking too far that I’ve fallen over in strange airports out of pain; of creeping slowly along, last person to make it to the baggage carousel because if I was going to make it that far I would need to stop a couple of times to sit and massage my joints; Of falling down escalators because even though I knew I was disoriented and thought I might have a cataplexy issue (or joint fail issue if we are keeping in the body impacting mobility theme- I’ve fallen from both) I either couldn’t find the elevator on my own or it was labeled in a way that made it unfriendly to use unless you were accompanied or with children. I spent years needing more and more help, but not getting it.
Why? Well, because people are jerks about people needing only part time assistance. Because people assume that if you can stand long enough for the back scatter machine (which tends to be less of a hassle for a number of reasons than the metal detector for me) or to put your stuff on the belt that you dont’ “really” need it. Or if you can make it down the jet bridge- which often isn’t super long, often has railings, and has seating on either end- on foot that you are cheating by using assistance the rest of your trip. This last trip, I even got negative responses from one of the helper people at Hartford airport- they saw a fat chick who is young and can, with a cane, hobble up and down the jet bridge, and treated me differently than the visually fragile elderly woman who was also being assisted. And heaven forbid I not seem miserable.
Articles that don’t come out and say, “people legitimately need these things, and you can’t guess it based on looking at them” when they talk about this sort of thing? Make it harder for people who do need it to ask, especially if they don’t meet the stereotype- or meet the wrong ones.
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2.
April, the month that just ended, was Autism acceptance month. I had intended to write for 5 or 6 places. Instead I got out a quick post here, an urgent post as well, and one for ASAN’s Autism Acceptance Month website. I couldn’t pull my brain together enough to submit to TPGA‘s run of guest posts. I couldn’t get something written for here and for Paula’s Autism Acceptance Month blog around. There were several flash blogs that happened, and I was unable to get the words in the right order for any of them. Yesterday there was one for Autism Positivity, and I was only able to push out a poem that I still haven’t decided if I’ll make public or not. I’ll know by tomorrow.
When you are Autistic, April really can be the cruelest month. There is a muddling of stereotypes designed to describe us not as we are, but as forces in the lives of others. For all the efforts we put into those things that can bring our community together, there is a relentless noise in opposition.
For me, April was as confusing and barren feeling as a modernist landscape, a wasteland. The metaphorical shell I built in defense became an echo chamber of self doubt, the well of inspiration barren in the ensuing drought. I tried to spit it all out into words the only way I can when prose becomes a foreign language, through poetry where stating images and not needing to make sense to another person can be powerful. But in the places that I wanted to share, I had little to go around.
As the month drew to a close, internalized oppression reiterated words I heard as a child: “You will never do, will never be, will never become.” But I think they are always echoing there, waiting until I must close down taking in out of desperate self preservation, avoidance of rage. Some things said echo on our souls.
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3.
There are horrible, scary things in our world. Today a link was passed around, about a child, aged 6, with disabilities who had been shut in a cage and left to urinate and defecate on himself. What his parents did is horrible, and inexcusable and sadly not a new story. I looked at the photo of the (now empty) cage and was reminded eerily of Utica cribs and other things people tried/try to justify with the burden of the caregiver. And it happens over and over…
One part of my family are Grahams, and the motto is “n’oubliez-” Do not forget.
But in sharing it, I had someone make a comment that the parents must be intellectually disabled and should have had the kids taken away a long time ago. But this is not justifiable, not to me, not any more than any other things. Additionally, the parents were never identified as having any sort of disability, so the comment was made purely on the basis of bias. The horribleness, the evilness that we see when someone treats someone in their care the way that these parents treated their child? That has NOTHING to do with any disability- including Intellectual and Mental Health ones- that the perpetrator might have. Even were there complications, it would not be the reason, and assuming that they are disabled in some way is not ok. (Especially when in the same thread you wax poetic about how the child is especially defenseless because of their disability.)
As a friend might say, you can’t fight ableism with ableism.
I deleted the comment, and for a brief moment was glad that it was on my wall, where it was in my power to do so. But as soon as I had done so, I remembered. That stuff is still out there- and in places where my delete button has no power.
N’oubliez.
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*Disableism- in the UK, certain terms aren’t constructed the same way as in the US. What USAians call “ableism” is therefore called “disableism” for some UK people. (This is similar to how in the UK you protest for something, whereas in the US the word protest is commonly used to mean protest against something.)
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… 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.
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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.
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Coming into the neurodiversity movement, there are some terms that a new person might not be familiar with. I’ve been seeing a lot of questions about some of them, and some misunderstandings about them as well, so it is perhaps time for writing something on these terms.
If you are reading this blog, I’m assuming that you know what Autistic means in a general way. Some of you might still hold some misconceptions about autistic life, but I believe that to be a part of the learning process. You are reading Autistic voices either here or on the blogs of other Autistics, hopefully learning from it, and that is what matters.
You’ll notice that I use “autistic” rather than “person with autism” throughout. This is intentional. The basic idea is that my being is autistic- the patterns my brain form thoughts in, the essentials of the way I perceive and learn from the world are autistic. Autisticness is, for me and many others, an essential part of what makes me, me. Saying I am “with” autism denies this reality.
There are many brilliant writers who have addressed Autistic vs person first language in more depth. Jim Sinclair, one of the Autistic community’s elders, wrote a piece in 1999 on the issue which you can read on Cafe Mom. Many others have echoed and expanded upon Jim’s thoughts since then. Lydia over at Autistic Hoya has written a number of posts on identity first language vs person first, including “The Significance of Semantics: Person-First Language: Why It Matters” which ends with a list of links to other writers on the issue.
Some people’s constructions of how they phrase their identity are very personal, others political, and a good number both. I have multiple disabilities, and have a mixture of phrasing for myself. My own preferred construction is “Autistic with anxiety/chronic pain/etc.” When I expand that beyond ability it gets more complex, but I will leave it at this because eventually listing every part of my identity, regardless of relevance, becomes a metaphorical rabbit’s hole.
Allistic, on the other hand, means “non-autistic.” (Some people use “neurotypical” this way, but I”ll get to why I disagree with that usage in a moment.) That is all it means. It doesn’t mean someone is intrinsically better or worse, and it doesn’t indicate ally-hood or opponent-hood. It just means that someone is not autistic.
Allistic is a term that members of the autistic community came up with. While the earliest mention I can find (Zefram, Fysh.org, 2003) is constructed to work in a parody, the word construction makes a lot of sense. So much so, in fact, that Zefram’s work isn’t known to many community members now using the term. In Zefram’s postscript, it is explained that the construction is based on the way that the word “autistic” is constructed:
The word “allism”, invented for this article, is intended to precisely complement “autism”.
It is based on the Greek word “allos”, meaning ”other”, just as “autos” (in “autism”) means
“self”. [...]
This explanation of “allistic”‘s construction continues to be in use. As some might note, the relative constructions of “autistic” and “allistic” are not dissimilar to the relationship between the words “transgender” and “cisgender.” Even if the alternative was developed to suit the needs of politically charged parody, allistic is linguistically a more accurate term than some of the alternatives.
Neurotypical is often used interchangeable with allistic, but I would argue that it isn’t actually interchangeable. Neurotypical is short for “neurologically typical”- within the typical range for human neurology. Obviously it wouldn’t make sense to say that someone with definitively atypical neurology was neurologically typical just because their atypicality wasn’t that they autistic. Indeed, the Neurotypical/neurodiverse terminology has been adopted by certain segments of the Mental Health consumers/survivors communities for this very reason.
On-going usage aside, from what I recall the initial usage was one that is synonymous with the current “allistic.” However, between the acceptance of autistic cousins (those who aren’t autistic but who have similarities, including those with ADHD) and the penetration of the term beyond the initial communities it swiftly became used more diversely. Eventually, the more diverse (and in my mind accurate) usage meant that a more accurate term for non-autistic was needed. (Which brings us back to Allistic!)
Neurodiverse can have two meanings depending on what it is talking about. When referring to individuals, it simply means that the individual(s) in question have neurologies that are neurologically atypical. AKA, that they aren’t neurotypical. Generally speaking this usage is not used to just talk about Autistics, but is inclusive of other people whose neurology is atypical.
When discussing a population sample, though, it can mean that the neurologies represented are diverse. In this usage, the people in question include more than one type of neurology, and may even include members with individually typical neurology in some instances. This is the less common of the two usages that I’ve seen, though.
I hope that this was useful. For those interested in more information about the origins of certain aspects of autistic culture, I recommend you read Jim Sinclair’s History of ANI, which documents the early days of the autistic culture movement through the establishment of Autreat.
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Personal note: I’ve been a bit distracted so far this month and have had issues coming up with something to write for here- while at the same time, preparing for putting things out elsewhere later this month. That I haven’t done much writing here so far this April hasn’t sat well with me, so I figured it was time to do another terminology type post. This isn’t the best post I’ve written, but it is what I have for you today.
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I am multiply disabled. I’m even disabled neurologically in more than one way. I am an Autistic with anxiety and depression, cataplexy (possibly narcolepsy going by family history), learning disabilities, and a tendency toward agoraphobic episodes. For some reason, those interact to my least benefit during the winter months.
First, I become anxious and distracted. My anxiety starts making acting on my knowledge instead of my anxiety difficult in November. I begin to worry about things that I am otherwise never in doubt of. I try to fight my anxiety, but this sometimes means I say or do things that make people feel blamed or sad. But I don’t have a strong enough filter at this point to turn it off.
By the end of December I’m depressed, isolated, and feeling as though I am not doing well at non-”work” related interactions. Sometimes circumstances make this more intense. I have family members who too often do things that will set off some of my trauma related issues, leading to ongoing tensions and misunderstandings.
I also come from a family with multiple faith traditions– most of my extended family are Christian, and some of a more conservative sort of Christianity that has essential conflicts with my beliefs. Accordingly, I have received gifts ranging from christian themed chocolate (which as much as I question why a devote christian would be cool with eating chocolate Jesus, I deal with because a) chocolate and b) They usually go to support their churches charitable works) to inspirational novels about a “lost” woman coming to christianity via a man– something that becomes a bit offensive when you realize that they all know I’m not remotely Christian and in fact follow Judaism. Additionally, that side of the family’s Family Dinners tend to be very pork centric, and I end up eating potatoes, rolls and sometimes salad if my mother made it.
I don’t really have access to my own faith community due to our location, which makes a lot of these little things less easy to put up with. It is indeed harder to deal with microaggressions when it’s difficult to find others. Indeed, the things that don’t bother my friends so much in areas with substantial Jewish communities are harder here where there isn’t a community to fall back on.
January, I reach the point where I feel incompetent. I don’t follow through with the things I need to do to maintain my personal relationships, interacting primarily in indirect ways, avoiding direct personal interaction. My interactions are instead primarily related to the efforts I maintain in advocacy or other work interactions. I feel apathetic about most personal things on an emotional level at this point- nothing seems particularly appealing to an extreme amount. I force myself to leave the house every few days, because otherwise I’ll need someone else’s physical presence to leave. It becomes an overwhelming thing to leave home, more so than any other episodes of agoraphobia I have throughout the year, easier to rationalize with the weather though it might be.
By February, without my consent, I find myself angry at myself. I know that these patterns are a function of my anxiety and depression meeting up with the decrease in available sunlight, but I still feel upset. Frustrated that this year I couldn’t prevent it. Especially as I begin to notice the way people are to it everything that has happened. I’ve lost friends from it in the past, had them assume that my going without directly personally interacting for a while was about me being upset with them. (This is according to what they’ve told me.) It’s more than my periods of not knowing when to contact people or where I stand are. This is more.
I know this is hard. It is a hardness I both feel and hear from others. I know that I am not an easy friend. I know that this is a convergence of the least beneficial parts of me. But that they are parts of me, parts that at other times come together in other ways under different lights.
This is a personal note. A request to those who know me personally to grant me patience in the winter. To know it’s not about our relationships, but about my brain chemistry, unsure how to adapt quickly enough.
To have faith that the world will turn, the tilt shifting, and that spring- and daylight- will come again.
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Content: Mentions of violence against people on the basis of ability, race, and so on; Mention of abuse.
Friday, March 1, is the 2013 Day of mourning for those PwD whose lives were lost to the hands of their caregivers. Last year, it was at the end of March, not the beginning, which means it’s not quite the anniversary of knowing one of my abusers/caregivers is dead. Last year, those two things fell on the same day. I felt shock and relief mixed into my grief. The shock predominated throughout most of that afternoon.
It’s been a year and a month since Stephon Watts was killed, by police who his family was told to contact for “help,” for the combination of being an Autistic young black male. 11 months since Daniel Corby’s murder. This fall it will have been 20 years since Tracy Latimer’s murder. A month and a half since Robert Saylor’s murder. Almost 80 years since the Nazi’s T4 program. I can post lists and timescales forever, it seems, and it still won’t have all the names it should.
Our dead are mixed in with the dead of others in places where our identities cross, these cross sections boosting statistical probabilities. Stephon’s murder was just as much (if not more so) a factor of racism as disability. T4 blended in to a larger propagandistic and genocidal engine.
There are sadly always many for which to mourn.
This year, we’ve seen violent events, events which have gotten the attention of major news outlets and the dwellings on of news cycles. In these ways, it is unlike our dead- though our dead are hidden in theirs. Instead of joining in mourning, the public uses these deaths as a means to fuel the same bigotries which lay behind the excusing of our deaths and pardoning of our murderers.
Recently, some noticed something terrible, something demonstrating the way in which a certain segment of the disabled population is viewed, when they googled “Autistics should” and “Autistics are.” Google uses everyone’s searches to guess what your next words will be. Based on the searches in their database, google suggested things like “Die” and “dangerous” to complete the search.
A flashblog (see both “should” and “are“) appears to be bearing some results* in amending the computer side of this, but Google only has the ability to amend what their searches suggest. They can’t amend a code and instantly remove the biases that lead to those searches in the first place. (Though it does help.) Erasing bias a is longer, and more complicated, process than that. A process which is on all of us to work on.
A process that we all need to keep in mind. Bigotry that cannot be forgotten, as it blooms fresh again.
My words here are not as direct as I’d like. I see that my sentences are convoluted, but every time I fixate on them enough to begin translating them out from the word pictures in my head into plain language I feel those things that indicate I’m about to cry. It’s hard not to, when you allow yourself to really have the reality sink in. Terror, relief, grief, anger, sadness, and the sense of ever reaching, all inter-playing and weaving.
Yes, I do believe I’m mourning.
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This year’s vigils are being jointly backed by ASAN, Not Dead Yet, and the National Council on Independent Living. You can find the nearest vigil to you on the ASAN website, and I’m (as an ASAN person) managing the virtual vigil 3:30pm EST-Midnight-ish, with a good friend, That Crazy Crippled Chick, as my second.** This is a cross disability effort; Autistics are not the only PwD to be murdered by those who were supposed to protect us.
* The article in the link is titled in a way that suggests that this change is already in effect. This is inaccurate; as of this writing, Google has agreed to modify their algorithms to eliminate this issue. It has not been implemented in a way that impacts the user end experience as of yet.
** Or number one, if I’m Picard and she’s my Riker.
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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.
That Crazy Crippled Chick: A Musing on the Word “Disabled”
Radical Neurodivergence Speaking: In this place, in this activity, I am not disabled.
Yes, That Too: Ableism is to Blame; A Social Construct
Autistic Hoya: Has an entire tag dedicated to this issue
Additionally, there’s a nice bullet-ed definition of the social model on the KASA website.
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* 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.
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I don’t think it is a uniquely Autistic trait to desire things be cut and dry, for the lines and sides to be clearly defined, for things to be clearly explained. Perhaps the intensity with which we cling to it can be, and thus the frustration and bewilderment some of us have when it turns out not to be the case being so heightened. I disagree with calling it black and white thinking, because I think that negates the fact that complex mechanisms can be clearly defined if you know well enough what you are talking about.
I think instead it is one of the human things to various degrees. Obviously, not all humans feel this pull the same amount. But it is safe. While there are some people who engage in risk-seeking behavior, for many that I’ve communicated with deliberate risk seeking is about facing or even fighting off the fear that safety makes feel inevitable. When you retreat entirely into safety, everything outside of it can become frightening, unpredictable, a risk. Sometimes I do have to ask, though, if it’s truly risk-seeking, or if it is a form of fear-avoidance.
I went through a phase the year I graduated High School where I wanted to be something I wasn’t. While others might not gauge the risks I took to be the same as “risk-seeking”, it was the same mental process. But it was on the scale of who I am and how small a safety zone I have inside me. It was terrifying and running on adrenaline and “proving” that it was something I could do. It was mildly self destructive, and I had my first major agoraphobic episode the following year. I spent 6 months only able to leave the lot the little house I lived in with direct supervision, to places I knew were both known and safe– my mother’s and doctor offices. And my mother’s was once a month and only because my then Roommate/boy friend had to return to our home town for National Guard drills.
Our stories and feelings are all messy, complex. And as much as I believe complex things can be explained, broken down into the tiny moving parts like clockwork bits, there are things which defy it. I want desperately to believe in a unifying theory, much like Einstein to whom the quote “If you can’t explain it simply, you don’t understand it well enough.” is commonly attributed. But some things aren’t predictable, are running on quantum mechanics, are inherently uncertain. Sometimes there are factors other than not understanding something (communication disorders included!) that make the totality of our circumstances and world more than what some people can explain simply. Perhaps another person could, but when it comes to the experiences rather than the facts? Things are incredibly messy, and the end of our narratives uncertain.
Einstein tried to find the Unified Field Theory until his death, becoming more and more isolated from contemporary physics work. It remains one of the unsolved physics problems. There is a lot of hope to someday reach that, and one of the reasons why people seem so excited about the Higgs-Boson particle is that if it is more than to be expected perhaps someday it could lead there. I have hope that someday I’ll have the words to tell my own stories in simple terms, and that each attempt will lead to more than to be expected.
I have a post in my drafts about Physical Therapy, about body awareness, and about changing over time and what that has meant. I couldn’t continue writing it, though, because it became messy. I started out going straight forward about the things that I’ve perceived differently but generally beneficially about my body in space. But then I was hit with a flare in my joint pain– and the only different thing that had been added was that I had started a Tai Chi class modified for people with issues similar to mine. I had done this to work further on body awareness and my sense of self and movement in space. I ended up spending the next day in bed, and the next several days in a lot of pain.
It is an inherently messy thing, this shift in both knowledge and perception. It came from something that seemed to have a lesser risk than other things I’ve done, and it was unknowable until it happened. Indeed, until afterwards when my body had settled down from the endorphins enough to be aware of the consequences. It’s a reminder of the uncertainty of everything, that we cannot predict everything, as much as even Einstein wanted us to.
When I wanted to be someone else, and even before that, my feelings around disability were messy and striving. While I embraced that I am “crazy”, a person with significant mental health issues, I avoided desperately the other parts of my being that were disabled. I clung to intellect, avoided and denied many of the conversations about my possibly having a developmental disability, swore that I no longer struggled with the same issues that delayed my ability to read by years, avoided the discussion of my experiences of selective mutism. I tried desperately to be “just” crazy, just a manic pixie girl (I never fit the dream part), to suit a limited sphere of what I thought was safe to be.
There are things that I said and sometimes even believed then that I hate myself for today. Eugenics, something I am now fiercely, passionately against seemed somehow a differentiation then, something to prove I wasn’t a “them” with. I used the R word profusely, partially out of habit and partially to distance myself from the times I had been called that as a child. I clung to academic achievements not only because it was something in an environment that I could achieve in, but that I hoped it would contradict the times I had been told my worthlessness. Towards the end of that period of my life I started to see the things I had talent in as simply talents, but before that it was the way to prove myself, to tell people I was not what they wanted to predict of me.
My past is hideously messy. The things I did well, the skills I learned, are overshadowed in my mind by this– how much I didn’t want to be me, and how much I was guided by a desire to deny half the things that form my experiences. It’s horrible, and messy, and confronting that is hard. I know that much of it was ableism, internalized and let to fester, but I still hate that that is a part of my past. That I could have been that person, and to be the person I am now. To desire the ambition and impetuous while despising the things that surrounded and directed it.
It is messy, and it is uncomfortable. It is also true.
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I am a layperson when it comes to physics. I’m sure I’ve over simplified or mis-connected some physics bits. But they are the simplifications and mis-connections that best analogize the emotions I have right now about this topic. If you want actual physics awesomeness, I do rec that you check out Minute Physics on Youtube. (Note: I don’t think they are captioned, though I do believe that their production team would be open to use captions that people produce, as time and budget are the big barriers.)
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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.
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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.
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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.
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