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 people have talked about 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 didn’t think I’d have something to say today. I haven’t been able to organize my thoughts in the way I need to to write here, and I have a list of things I need to get done that. . . well, it just hasn’t thus far. I thought that I wouldn’t have something to say for Blogging Against Disableism Day, or at least not something that was worth posting here.
I was wrong.
I just finished reading Amanda B’s first post for this year’s BADD (she wrote two) and . . . Well, I found myself upset. And not just because her posts are on distressing issues around abuse by caregivers, but because I had just recently been trying to articulate some of the things she wrote about being conditioned to believe our support needs are unreasonable. Amanda was talking specifically about issues with staff and care givers being abusive, and about the cultures that support that within provider systems. But the conditioning is something I’ve been working on fighting out of my own head, and I’m someone who isn’t getting adequate supports or services. (I have less extensive support needs staff care wise and equipment wise as my health and skills are very different from Amanda’s, but that doesn’t mean I don’t need supports.)
I’ve been depressed lately because of how long it has been taking for me to get housing, and because the type of support that I need to navigate that type of system it is more complicated. As a result, my family has been truly over taxed in trying to make sure I’m not living under a bridge or someplace where predatory individuals would have access to me. My family members have disabilities of their own to provide self care for, as well as not really having the financial resources to support me in a way that respects their own needs. It’s not that I have super intensive care needs in general- once I have a place and can set up my charts and other adaptive methods, I might need a couple hours a week to help coordinate bills, cleaning schedules, and transportation. But they are still needs that are amplified by not having a permanent home that I can set up as an environment that is suited to developing or maintaining my Daily Living Skills.
However, I also know that I cannot cope at all when I don’t have some obligations or responsibilities to meet. Accessible, meaningful involvement. Unfortunately, none of the things that are immediate to my situation are things I have the skills to navigate. Instead, online things and meetings and disability justice work are the things that allow me to cope, to endure not knowing for sure where I’m going to be sleeping next week.
But my needs for this sort of meaningful activity, and the relatively easier and less expensive to provide supports I need to do them, are characterized over and over as unreasonable. Unreasonable in light of how I haven’t been able to get housing. Unreasonable in light of needing someone to work one-on-one uestion by question with me to fill out assistance forms, or even in writing an advanced directive when I know basically what I want.* Unreasonable because I need some help in managing my money, because when I try I end up just not buying the things that I need and doing without until it hits crisis even when there’s money for something.
*That set of needs in and of itself is called unreasonable in light of how “smart” I am, how I can be involved in national level policy review, how I scored so high at English in high school. That I can write and review policy somehow means I must be able to apply each step to my own life accurately, without assistance. That there’s a different set of neurological skills between writing big things or reviewing big things and applying those to a very specific case in a way that uses standards measured from the outside is not fathomable.
This past weekend, it didn’t work out that I could go to a family member’s. So I went to the cheapest hotel in my county with wifi, and checked in. (I even agreed to watch my niece on Friday night, as she and I get on well and my sister needed the support that having someone else handling her would accomplish. The sort of support that if the dad had been willing to provide when it is needed two nights or so a week, wouldn’t be a problem.) But when the hotel’s internet was not operating appropriately, all the things that I’ve been told- the things I’ve listed in a heavily limited way above- came into my head.
That daring to have obligations to fufill was an unreasonable thing for me to have done, even though they are obligations that aren’t terribly extensive. That needing reliable internet access because I had been asked to complete one thing was something that somehow made me an extra burden above and beyond. That contributing at all can’t happen somehow when you can’t hold a job that supports yourself. That while my disabilities do not make me something aweful, that my daring to participate in the ways that are accessible to me somehow does.
I know that it is all programming, that it is the sort of behavioral training in action that Amanda is talking about when she says that you don’t need locks or restraints to practice seclusion and restraint on someone. I am someone who has picked apart the details of how society trains us into compliance for the ease of others. How being a part of a marginalized group means that we have epic fights against the things inside our heads in order to survive. I’m someone who films myself daring to reject indistinguishability, who knows that we make tiny revolutions by demanding that our determinations of what we need are listened to. Someone who lives and metaphorically breathes disability rights.
And I’m still digging out the conditioning in my own brain that reduces me to a something, to a burden and an unreasonable. My mother is still unraveling the complexity of what access is vs “enabling” (which is a complex mess to dig around in itself). My sister is still without her GED because when she has to directly interact with her acquired learning disabilities, the things she’s internalized over the years both when she was a norm with a disabled sister and after she acquired disabilities collapse her incredible demonstrations of self confidence.
When we talk about the impact of disableism, we are talking about trauma, a trauma that can be obvious enough to shriek or subtle enough to make being explicitly told that others will help us access our world a shock, a pleasant surprise. We are talking about outposts in our heads, and the outposts in other people’s heads.
We are talking about how some nights I lay awake worried about the day when my niece no longer thinks I’m awesome, no longer misses her buddy Skylar, no longer meets a family friend’s kid at his level of interaction because it seems horribly inevitable that she’ll learn the memes of disableism in our culture. Because even with some of the amazing bits of joy and hope that people share- Dave talking about Ruby’s dance class, Brenda talking about her love for her son as a whole person- it’s hard to believe that the hope that it gives will turn out.
It is so hard to believe something that amazing can last when you live in a world where it’s socially acceptable to exercise disableism, to raise children with disabilities around language about brokenness and tragedy into adults whose hearts break daily because it’s hard to unlearn that stuff.
But somehow, it is still something worth writing, and fighting, for.
(A different, positive, musical Something to play you out.)