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.

9 thoughts on “Shreds

  1. Dear Savannah,
    Thank you for writing this. Thank you for choosing to post it after you’d written it. Thank you for your advocacy work. Thank you for encouraging others to speak out. Thank you for feeling all that you’ve described in this post, doing your best to process it, writing about it and then putting it out into the world.
    It will help others. It helped me reading it, and I am not diagnosed with autism.
    The first time we had to hire a lawyer to fight for Emma’s right to a better education than the one the state recommended, we had to hire a lawyer. Our lawyer, in her closing argument, highlighted all of Emma’s deficits, and in the middle of the hearing, I completely broke down. Perhaps to the opposing council it was a brilliant display of well timed manipulation, an attempt to have the hearing officer feel pity for me, for my daughter, for our case, but there was no manipulation on my part. It was devastating to hear my daughter described in such negative, clinical terms.
    I am grateful my daughter did not have to hear that closing argument. I hope she will never have to hear someone so dispassionately dissect her, reduce her to a series of deficits. None of us would do well under such circumstances. None of us.
    And yes, we too “won”.

  2. Thank you, thank you, thank you. I work and every day is such a struggle. Like others have pointed out it actually gets harder as you get older. It wears you out & the better you do the more that is expected. It sucks. On a good day I can blend in for a few hours and then go hide in my office. They don’t give you that ability/accommodation. I used to hide in bathrooms.

    Anyways now my son is 15. I need to take him to get assessed. I want to take him but I keep putting it off. I don’t want to focus on his deficits. I don’t want to say what he can’t do. We focus on what he can do. I don’t know where he will be in 3 years or 5 years or 10 years. I want to focus on what is his best options. What will make him happy in life. But currently I can’t picture him fitting in to the professional world without acceptance and accommodations. The world isn’t there yet. I don’t want him to face the same struggles. Agreed they should focus on what someone can do & what accommodations are needed. If those accomodations can’t be provided that is what they should say. It should be clear what you or my son can work on & explore what accomodations can be worked towards. Employers should realize what wonderful things can be accomplished if the correct accomodations are provided.
    I am sorry they made you feel that way. That is my fear. I don’t want him to feel that way. Like you he is a great person. But he needs the right environment to flourish & most employers don’t provide.

    • Well, he’s better off with an assessment as a minor that if he waits until he’s an adult in need of accommodation under the ADA (If you are in the USA). I am guessing you are still managing his medical care, and so my advice is to find a doctor (who isn’t JUST a pediatrician!) that he gets along well with who, as he grows older, will be willing to provide letters stating what his accommodations should be in college and/or later in (some) workplaces. It’s better to have this relationship before he needs it rather than trying to establish one while he’s in crisis.

      If you are talking about SSI, it’s a bit less horrible for the recipient as a minor, but it might be hard for you to hear horrible things.

  3. I, too, struggle with the contrast between how the governmental systems see and label me (“un” able) and how I know myself to be a competent, disabled, helpful member of society. When I have to “prove” myself “incompetent” to have the benefits I need to survive, I try to surround myself with comforting things – my favorite people, foods, activities. Because it IS a demeaning, demoralizing, horrible process. It’s intended to be because the way our government systems are set up are very punitive and out of touch with the realities of our disabled lives.

    Thank you for writing so honestly about what we all go through to survive. And the cost to our health and our self-esteem when we do it. Your writing helps me to feel less alone and scared about going through this process.

  4. Sorry you are having to go through this. I was “lucky” enough to get SSI the first try, without the need for lawyers or appeals, and that was unsettling enough in the ways you’re talking about. Even though, at that point, the only viewpoint I had to approach things from was chock full of medicalized badness. It still hurt and left me feeling/actually being less capable for years.

    Glad that you did, at least, finally get some of the help you needed. Shame it comes with such a price attached.

    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.

    That is very relevant to my experience, as well. (OCD is also part of the package, for me.)

    And agreed, the process should not be leaving people in worse shape than they started out. It really does seem designed that way. 😦

    I’m low on language spoons for a proper response, but wishing you the best here. *hugs offered*

  5. Wow, what a post. I always wondered how other parents figured out about this thing that we have to do. I never got as far as thinking about how it is for the person with ASD. Straddling the line between teaching our aspie children to be all that they can be and knowing that they have to qualify for services. It doesn’t really matter if it’s SSI or community and family supports you have to show the gut wrenching parts to get it. There ought to be a better. way.

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