There is a well-worn phrase in disability circles, primarily in political and research contexts: nothing about us without us. In essence, decisions about our lives should not be made in our name, because we are autonomous agents acting in the world on our own behalf and with intrinsic value and worth as human beings.
Robbing me of autonomy is like a batphone straight to my existential despair. That’s at the essence of my having called the prospect of having to move to western Massachusetts to live a life entirely dependent on others to see any part of the world other than the rooms in which I would live one of my worst nightmares.
It’s also at the essence of yet another flailing email clusterfuck with my sole remaining parent, upon whom I am entirely financially dependent, of the kind I’d thought we’d left far behind awhile ago now because they’d agreed to do that.
Presumably in the wake of writing about my pacific circuit and its potential loss, my inbox began filling with multi-paragraph messages in a tiny font that showed little to no recognition of everything I’ve been writing here for years about Social Security, disability, or the question of ME/CFS (which my current primary care physicians dismisses as a lack of strength training)—requiring me to recapitulate it all in some sort of tl;dr fashion that wouldn’t swamp me under a wave of entirely extraneous cognitive demand given that I’ve already written about it all, and my resource management always is balanced on a knife’s edge as it is.
(If there were a fucking search solution for Eleventy that suited what I want for one, you’d be able easily to search for the forty-two posts here that include the term “Social Security”. Well, forty-three now.)
Eventually, it brought us to me being asked about the epic disability narrative I’d written three years ago, because they wanted to share it with a lawyer friend to see what they thought of it. My conditions were plain: I’ll share it but only if they didn’t not strike out on their own as they have done multiple times in the past.
My compromise against being tasked with writing an entire damned update covering the past three years—again, a resource impossibility—I wrote a one-page addendum briefly touching on those years.
Easily the most explosive incident of striking out on their own came seven years ago when they reached out to some self-professed autistic consultant, who proceeded to show up unannounced at my then-nonprofit to badger a volunteer with questions about me and making conservatorship noises at them. It was after this debacle that they more or less agreed they wouldn’t any longer be striking out on their own in my name. Even then, that agreement took some time to seem to fully implement.
Then came today.
You’ll be unsurprised at what happened next, although in the moment and given the above I very much was: after talking with their lawyer friend, they struck out on their own.
(One “good” thing that came from this lawyer friend: confirmation that there is basically no route to SSDI for me. I’ve basically been saying this the entire time, although the point of the disability narrative was an attempt to make a case for SSDI as a “disabled adult child” despite being been informally told by an agent that I’ve too few credits to get it on my own, yet too many to get is as a DAC. At any rate, having outside eyes confirming that SSDI is a non-starter at least underscores what I’ve been saying for awhile now: I’m doomed.)
At which point I returned to a social media thread I’d been posting along the way during the past couple of days and began having something of a nervous breakdown—or textual autistic meltdown—on main.
Look, I get that it sucks to have a middle-aged child who has amounted to nothing and is entirely financially dependent upon you, but I’m still an autonomous agent in the world. If you won’t do it out of empathy and recognition of my humanity, then do it because not doing it self-defeating for whatever you’re trying to do. Nothing triggers pathological demand avoidance like robbing an autistic person of their autonomy.
The entire reason any prospective move to Massachusetts after they die is a nightmare scenario for me should be plain from that earlier post: it represents for me an almost total loss of my autonomy. It’s not something that appears plain to them, however, as in this flurry of emails was a description of how exactly they live in the spaces which would become mine, complete with an assurance that there’s a coffeeshop that’s a mere twenty-minute walk away—as if a twenty-minute walk was something I was capable of doing on a regular basis twice in succession (once there and once back) instead of being the limit of the daily loop I try to do for exercise which puts me at the outer bounds of my capacity for exertion.
It’s clear now that they simply do not have any true understanding of or respect for this notion of autonomy and the degree to which negating it is to me very much akin to dying, else they would not murder my morning by so casually once again striking out on their own.
I’d be remiss if I left this vague.
At issue is that they wanted, as noted above, to share my disability narrative with a lawyer friend. That lawyer then suggested contacting a Portland disability lawyer.
Let me be clear: I’ve done this in the past, more than once, and every time tried in vain to get lawyers to let me initially discuss matters via email rather than a phone call, specifically as a disability accommodation. Partly because phone calls are terrible and difficult, and partly because I knew their customary 15-minute evaluation call was insufficient to describe the late-diagnosis and work history irregularities of my situation. The one and only lawyer who agreed to an email conversation was of the opinion was that it was unlikely any disability lawyer would take my case precisely because I was late-diagnosed and had a work history. That’s not a case that resembles the ones they take and win, and they take the cases they will win because they don’t get paid until and unless you receive benefits.
(Not for nothing, but no one practicing disability law should be refusing a disability accommodation request from a prospective client.)
Anyway, the point is that rather than return to the conversation with me to report what their lawyer friend had said, they struck out on their own and contacted a local disability lawyer in my name without my permission, and returned to the conversation with me only to instruct me to call them because “a phone conversation should not be too taxing”.
Read that one again, please: “a phone conversation should not be too taxing”.
Then go read literally one of the first things I wrote about as I’d begun blogging about my autism diagnosis, in which I explain why phone conversations are so tremendously problematic.
Ironically, this entire past two days of email itself has been nothing but taxing.
Let me, again, be clear: I’m entirely open to having a conversation with a lawyer, but only if I know they’ve taken the time to read my disability narrative in all its 24-page glory. This, too, I view as a disability accommodation. If they can have a 15-minute telephone conversation to evaluate a prospective client, they can read a 24-page document to do so. It required months of difficult, strenuous work, precisely because I knew no phone conversation is going to capture my circumstances, and we all need my circumstances to be judged both for what they are and for what they are not.
Much of the above existed in draft form before I’d even left the apartment for my usual six-block walk to sit for an hour to read over coffee, a self-regulating behavior all the more necessary given that I’d had to literally stop myself in the kitchen while I was trying to put together my breakfast and say to myself, out loud, “I need to move more slowly, or I’m going to break something, and it might be me.”
Then came the email that was waiting for me when I sat down ousted my regular coffeeshop. Then came being unable to focus on the self-regulation of reading. Then came the new thread I inflicting upon my social media followers, which abandoned the euphemistic, distancing pretext of “family member”.
After saying years ago, after the conservatorship debacle, that she’d not strike out on her own again, after doing so today anyway and even asking forgiveness because she knew it was wrong, my mother just threw this at me: “Keep in mind that you never would have be diagnosed if I hadn't interfered.”
When literally all she had to do when she heard back from her lawyer friend with whom I gave her permission to share my disability narrative document was come back to me to discuss what that friend had said, and treat me like an autonomous agent.
I’ve made it clear over and over and over again: pre-diagnosis I spent my life feeling like a failure and fuckup—and knowing this must be what my family thought of me—and every time my mother makes choices for me instead of with me it shows she still thinks this.
This is toxic behavior, but I’m trapped in and with it because I’m completely financially dependent upon her money and can’t cut her off unless I want to hit fast forward into my eventual, inevitable future.
This alone just makes me not want to be here. (Not in an actionable sense, but the feeling is there.)
Nearly half an hour later, I made sure to note that I’d deliberately added that “not in an actionable sense” because the be perfectly honest right now I don’t trust her not to call the Portland Police Bureau to inflict a welfare check upon me. It would, after all, fit right in with the return to denying me my human autonomy.
I’d forgotten until sitting down to try to force some regulation into my nervous system by writing out this post that two years after that self-professed autism consultant made conservatorship noises about me, my mother herself made such noises. It’s important to note what I said at the time.
[I]f there’s one way to turn me into someone experiencing suicidal ideation, it’d probably be to take away what little control and self-determination I have, because at that point I’d no longer see a point. So maybe they should take a moment to walk this one back.
In this latest email insanity, she expressed discomfort with the fact that I compared having to move to Massachusetts into those circumstances as akin to dying. She should feel discomfort, because it discomforts me, too. Drastic loss of autonomy very much does make me question the point of any of this.
Despite me having made that point in this most recent exchange, she reverted to the told ways, struck out on her own, and robbed me of autonomy.
Who does that.
Who the fuck does that.
Why would someone do that to me.
Why should any of this make me want to be here, trying my best to get through from one day to the next even though and despite the fact that absent a fucking lottery win I know that there is no real future for me in the end.
This is all so hard enough.
Who the fuck thinks to make it all this much harder.
