One of the odd things about NerdCon is the focus on John and Hank Green, an interest I do not share at all, but there were people there who were only attending to see a Green. They write books that I haven’t read, and I’ve seen a few of their videos, but the cult following is baffling to an outsider like me. I didn’t attend any of the Green events while I was there.
But maybe I should have. John Green posted the text of a talk he gave this weekend, and it’s quite good. It was about his battles with mental illness, and the myths around such illnesses.
In the end, I feel that romanticizing mental illness is dangerous and destructive just as stigmatizing it is. So I want to say that, yes, I am mentally ill. I’m not embarrassed about it. And I have written my best work not when flirting with the brink, but when treating my chronic health problem with consistency and care.
Now if only we had a society that believed in consistency and care…
Okay, get rid of religion, then it might stand a chance.
Don’t stigmatize it. Don’t romanticize it. And don’t normalize it either.
I’m still not sure what annoys me more. The people who declare I’m subhuman or treat me like a child? The people who assume I’m some sort of savant who must be amazingly good at something to compensate for my disability? Or the people who swear that my disability is just a minor quirk and that all the distress it causes me is entirely the fault of the people who declare I’m subhuman and treat me like a child?
Honestly, I think the third category is worse.
PZ, Nerd Con was *created* by the Green brothers, so of course most of the attendees are fans. Maybe check out their youtube channels. They do educational videos in a number of subjects in addition to their original Vlogbrothers channel, which has a strong social justice bent.
I knew that. The Green brothers simply were not at all high on my list of reasons to attend.
“The Center Cannot Hold” is a fascinating book by a woman who battled schizophrenia. Here is the first sentence of the description in Amazon:-
Elyn R. Saks is an esteemed professor, lawyer, and psychiatrist and is the Orrin B. Evans Professor of Law, Psychology, Psychiatry and the Behavioral Sciences at the University of Southern California Law School, yet she has suffered from schizophrenia for most of her life, and still has ongoing major episodes of the illness.
This is a book you will regret not reading.
I haven’t read their books but I love most of their educational video series. They’re getting more people do their Crash Course series too. (But I do think they seem to be running out of ideas for topics. While I’m looking forward to “Human Geography”, where do they go from there?)
I haven’t read their books either, but I do follow their Youtube stuff. The Greens both seem like genuinely nice, smart, ethical, funny people.
It’s refreshing to see that sort of person gain mainstream success (at least on Youtube), and the fact that they’ve managed not to get bogged down in the usual internet politics while still having a clear stance helps. There aren’t a lot of Internet Personalities out there that I’ve (so far) found no reason to view with caveats. I guess John is vaguely religious? That’s about the worst thing I’ve discovered about his personal ethics.
@Alverant: I’m hoping for Crash Course Linguistics (as long as it doesn’t get entirely co-opted by Chomskyians, mutter grumble), and Crash Course Ethnology. Crash Course Comparative Religion, maybe? They had to do some of that for Philosophy anyway.
It might also be cool if they got more specific and in-depth — Crash Course Agricultural Technology, Crash Course Urban Planning, Crash Course Demographics…they’d just have to move away from “Crash Course [American College Class]” a bit.
Aren’t they the ones that made the book with the kids with cancer making out in the Anne Frank house? I vaguely remember there being some to-do about them, but I don’t really keep up with YA literature.
@Zeppelin
Well they did do a 6-episode course on IP and they’re doing one for games that is wrapping up soon.
John has hinted that he was once skeptical about religion but has come into it, but he’s (thankfully) kept the details private out of respect for the audience. My one disappointment in CC Philosophy was the (so far) lack of Eastern Philosophy influences. I’ve mentioned to them several times about how it should have a few episodes or even its own series because of how divergent it is at times from Western philosophy.
I do appreciate that lately more of their series have been done by women and/or PoC. They do have to keep the courses interesting though to attract viewers. Maybe do a course on the history of the South Pacific since it’s so rarely touched by history courses (save for the 20th century). Ohhhhh how about CC Heroes where they would explore the heroic archetypes from ancient myth to modern video game protagonists and movie superheroes (bet PZ would love that /s).
@Jake Harban
I’m with you on this.
It’s so sad to see disabled people buy into the idea that a disability is a “burden”… *shakes head*
Jake, get yourself into therapy, and get rid of your internalized ableism — you’ll be a lot happier!
WMDKitty, sorry to say this but it seems you are not exactly listening. A disability IS a burden, or it would not be called a disability. There might be ways to live with it it, for some, but it will forever be a struggle.
Perhaps Jake would benefit from therapy, perhaps not. Perhaps he has already tried, we don’t know this. So please don’t presume.
For me personally the therapist I met was well meaning but completely useless.
Thank you for saying that, Jake. I know I put a target on my back when I say similar but it’s how I feel.
I really like myself. I don’t believe struggling with my mood and periods of hospitalisation during which I just can’t manage it on my own and am a danger to myself makes me any less valuable a human. I don’t believe it bestows special abilities on me either or that it’s no big deal. Managing my mood is a huge part of my day-to-day. It sucks. It is a burden. If there’s an associated gift, I can’t find it.
The rest of the world not thinking less of me for it wouldn’t make me any less of a danger to myself when I’m suicidal. The stigmatisation doesn’t help but, ultimately, it’s the condition, not society, that make the mental illness I struggle with deadly.
Olav — Internalized ableism is an ugly thing. Jake (and now you) are displaying it in spades, and it makes me sick.
DISABILITY PRIDE, OR GTFO.
WMDKitty, good luck to you with that anger.
I’m not angry, just disgusted at the way several people now have displayed internalized ableism. Seriously disgusted.
If you can’t tell the difference, you’re part of the problem. If you’re going to defend his internalized ableism, you’re part of the problem. If you’re going to tell me off for being PROUD of who I am? You can fuck right off.
Does being disabled keep me from doing SOME things? Sure, I’m not running marathons or climbing mountains (not that I dig those things anyway). But it hasn’t stopped me from living a full life and being active in my community. I could sit here and throw a pity-party like Jake, but I’d rather spend my time and energy on living.
PRIDE OR GTFO.
That is excellent.
WMDKitty:
I am not doing that at all, what makes you even think that?
Then you are privileged in that regard. Good for you but please understand that not everyone has that luck.
You really don’t know what he does with his life, or do you? He just remarked here at #2 that people are often really insensitive. Can that be denied? Is even speaking about such daily occurences equal to “throwing a pity party”?
I will get the fuck out now (must get to bed). Thank you for your kind understanding and support.
My most recent “major episode” related to my mental disability changed my commenting patterns early this year and led to me disappearing almost entirely from FtB and the internet generally from somewhere around May to, well, qualified with “almost” I guess it’s still ongoing.
I’ve dealt with lack of earnings, delayed graduation(s), relationship effects – all from the direct medical symptoms.
I’ve also dealt with lack of earnings, relationship effects, loss of friends who inevitably infer that I value their friendship less than I do because of occasional long periods of silence, and a hell of a lot of internal anxiety – all from the social effects of how disability is understood, discussed, and treated.
I understand the importance of revising societal understandings and models of disability as a way to improve/eliminate consequences of current social effects.
I understand what it’s like to be in hospital for months on end, submitting to uncomfortable imaging machines, repeated blood draws, and constant IVs. I know how important it is to treat the underlying medical problem seriously even while pushing the rest of society to see the capabilities in persons currently only seen as “disabled”.
I hear the tempting call of PRIDE OR GTFO even over the partially-deafening tinnitus my brain treatments have given me this year.
I hear temptation, too, in the words of those who want urgent medical prioritization, who know that a day lived is a day gone that can never be recaptured and who *don’t want* to have other people treat them with more friendship, more respect if it means another day their bodies give them less freedom, more pain.
But I am not distracted by sirens.
I WANT IT ALL.
No stigma, no romanticization.
Invite me to conferences because my words have benefited you in the past, and you think they’ll hold more benefits for you or other attendees in the future. Don’t do it because I have a disability or three, have queer relationships, have experience as a trans* person, have white skin, need the money, eat vegan.
Buy books by me and others for the same reasons.
But pride or GTFO?
I do not accept that we need limit ourselves to one priority at a time.
I WANT IT ALL. Nothing less will satisfy.
seedy
I can offer a *hug*.
and a couple of last-of-the-season tomatoes
and the last serving of tonight’s casserole
I live a pretty darn full life and can’t say I feel sorry for myself.
WMDKitty
My disability means that I spend significant amounts of time in pain, and cannot do things I want to do. It is a burden. That doesn’t mean that I am a burden, or that other people can’t feel differently about their own disabilities, but please don’t dismiss my experiences.
WMDKitty, what the hell is your problem? Nobody is throwing pity parties, and acknowledging that mental illness has adverse effects in and of itself is hardly internalized ableism. As for the martyrdom act regarding people telling you off for being proud of who you are, it might be more convincing if that had ever happened in these comments. What telling off has happened in these comments is your vitriol and publicly expressed disgust at other people for failing to interact with their disability the way you want them to. I’ve come very close to death* complements of nasty depression and all sorts of fun suicidal ideation, and while I’m more than happy to tell the societal elements pushing shame that they can fuck right off that doesn’t mean I have to pretend that I’m totally fine and my only problem is other people’s ableism in some sort of disability pride display.
*As in actual suicide attempts that very nearly succeeded.
[meta]
I have a lot of respect for WMDKitty. And for Crip Dyke. And for jefrir.
(Jake Harban, not-so-much… but I accept them for who they are)
To paraphrase what Nietzsche wrote (and he was, in his latter years, not the most mentally-healthy person, to put it mildly), what doesn’t kill one makes one stronger. It’s not a literal claim, it’s a figurative claim about attitude and will.
(Yeah, I know some people are gonna think me an asshole for writing that :| )
—
One more thing — I don’t conflate being non-neurotypical with being mentally ill. Independent things.
This
is one of the most, if not the most, idiotic and idiotically used Nietsche quotes I know. I hate it and it raises my hackles whenever I see it.
What does not kill one kann still cripple, disable, impair. Or increase the likelihood of being killed and thus kill via proxy and/or at a later date.
And it falls under the “do not celebrate mental illnes” in this context, because it implies that the correct way to cope with mental illness is to find a way how it makes one stronger in some abstract sense. I fail to see how that is not an attempt at celebrating it.
It is, in essence, a deepity like any other. A good sounding but meaningless quip that falls flat under the slightest scrutiny.
WMDKitty,
You’re mixing up fighting ableism with thinking you speak for all persons with all sorts of disabilities.
You do not get to tell some random deaf person or someone who becomes paralyzed at the age of 25 that they’re wrong for wishing they weren’t so.
Charly @25, I already wrote it was not a literal claim.
You want to feel that every trauma, every injury, every setback you’ve ever faced diminishes and weakens you, go for it. Never an opportunity to grow, never a way to acquire resilience, never a way to cope with lesser trials.
John Morales
Bullshit.
I’ve been through lots. Including repeatedly wondering if it were so bad if I didn’t slow down and drive around the corner but sped up and drove headlong into the wall. And I worked through it. I worked hard and yes, I’m pretty proud of the person I’ve become. But that doesn’t mean that I wouldn’t prefer NOT to be the alcoholic’s kid. Not to be abused. Not to be pushed to the ground and kicked when down. Not to have an autoimmune disease that leaves me vulnerable for depression.
Yes, I had ample opportunity to grow from the pain and the abuse. I really wished I hadn’t.
John Morales:
Literal or not, it’s idiotic. Not being killed doesn’t mean your “will” is “stronger,” nor does that mean it should be.
Nietzsche may have thought being a strong-willed ubermensch asshole was the best thing since sliced bread, but there’s no reason for us to believe that.
It is sometimes a fact that a person experiences trauma, injuries, setbacks, and so forth … things which can in fact weaken (not strengthen) the person or make them incapable of certain things they’d otherwise be able to do, if of course such things don’t result in death. Wanting to feel that is in fact the case (or not wanting to) is irrelevant.
Do you have any experience at all with mental health problems? On what basis are you telling people like Charly what (you believe) they want to feel, how they should feel, or what any of their options are like?
Nobody said you can never grow, be resilient or cope. Is that always what you should do? Is that always something you even can do, given that so many things are not under your personal control or subject to your will?
Jefrir:
This speaks for me. I do sometimes feel like a burden though, when I’m at my worst physically, then there are tears and swearing at my limitations, and the need to have someone else do so much, when I should be able to, but can’t. For the most part, I’m good with my life, but fuck anyone who says I can’t deal with my disability in a way that works for me.
John:
Oh fuck off. You are one of the most unchanging people I’ve ever come across. You stick to a sniffy, superior assholism like it was a life preserver, and you never seem to lose your need to put other people down, those poor inferior creatures.
Many of the traumas, injuries, and setbacks suffered by regulars here have been massively bad experiences, and have taken many years to overcome, and in many cases, it’s a lifetime of coping, and every. single. person. has shown absolutely amazing resilience, strength, and ability to cope. Not only that, they have spent a great deal of time empathizing with and helping others who come forward with various traumas, injuries, and setbacks. That alone puts them light years ahead of you, as you seldom have any help to offer anyone, outside of a stupid, offensive judgmentalism.
As usual, there isn’t enough fuck off in the universe for you, John, but you could do a hell of a service in eliminating damage by simply shutting the fuck up. You need to learn that your input on various subjects is not needed at all, in any way.
Yeah, long time, no say hi due to life and all this topic. (Hello, Caine, I’ve missed you! Congrats, by the way!)
I say all this topic, because I’ve been struggling with depression since I was four years old. And I’ve got one thing to say.
Don’t say what doesn’t kill you makes you stronger. It’s actually just giving you pain tolerance. Even if you argue that being in pain constantly makes you more empathetic — why on Earth must you equate that to it being desirable? No pain, no gain? Well, really. John. Please to imagine this.
You’re at the same time dissing people for being weak and then not being strong enough to rise above all those traumas. There’s a word for that.
Catholic.
Mental health issues are not woo-woo, unlike Catholic guilt.
Now, I could expand a lot on exactly what makes me me, but decades of not being believed when I sought out help or got belittled for trying to explain that my brain is a very interesting place have left me unwilling to tell anyone much about myself.
Which is why I’m going to go out and take a walk. And leave you with this.
Stop yelling and listen. It makes everyone happier. Or at least feeling a little bit safer.
Teejaykay! Many, many, lots hugs. I’ve missed you too. Stop by when you’re up to it, yeah? I have an endless thread over there, y’know.
John Morales @24:
This – at least – is correct. Indeed they aren’t the same thing. However they can both lead to certain disabilities. Plus a non-neurotypical condition (like autism) can certainly result in to mental illness (like depression) if the circumstances are conspiring against a person in their weaknesses. So all these terms may not be the same thing but they are quite often interrelated. It can be hard to unravel.
I hope I expressed that clearly enough, English is not my first language.
@ John Morales #27
That is why I wrote it is a deepity. It can be true for some cases and people in some circumstances. It definitively is not true for others. It is trivialy true if some wide and very charitable inerpretation is given. It is demonstrably untrue when put under scrutiny.
What I want or do not want is irrelevant. Reality dose not conform to my wishes, the universe is uninterested about what I would like it to be.
Further I do not understand why you reinterpreted my saying (emphasis now) “What does not kill one kann [sic – typo, should be can] still cripple, disable, impair” with absolutist statements like “every” and “never”. That seems just dihonest.
John Morales @ 27
This is right up there with people claiming that asking for a safe space or trigger warnings is asking to be coddled. Nobody is saying that every little bump on the road of life is a devastation, but, yeah, I sure fucking wish I didn’t have to deal with them.
This fetishization of strength and resilience is part of the dehumanization of people who have suffered (especially in the case of the “strong Black woman” stereotype). It shames them for grieving, for reaching out for help, for doing all of the things that will actually improve their lives. We are humans. We can be weak. We can lament things. We can need help and support and wish like hell that we weren’t in pain.
This exceedingly privileged view of pride–NEVER REGRET, IT GETS BETTER, VISIBILITY!!!!!!!–is one of the ugliest intersections out there. People are complex and are going to have complex feelings and experiences, especially as they have multiple axes of oppression to deal with. Banal catchphrases do nothing to address any of that. They simply further silence those on the fringes and further elevate the people who are capable of embracing the catchphrases, the people who are incapable of seeing there might be reasons those catchphrases don’t work for other people.
TMM:
Fuck yeah. I wish that every single day.
@35, Caine: and me.
@11, WMDKitty:
It is a burden. That’s why it’s called a disability.
What therapy? Who’s going to pay for it? I have spent the last year in paperwork hell specifically so I could get disability benefits to find and pay for treatment!
The one form of therapy that seems most promising is something called “cognitive remediation” so maybe instead of blithely telling the person who can barely get out of bed that they should get therapy, how about you find someone who offers cognitive remediation near me and offer to pay for it?
See, this is exactly the sort of thing I complained about in post #2.
Back when each spoon didn’t have to be savored and spent wisely, I had a job. I had a house. I would often write with the eventual goal of quitting my day job and becoming a full-time writer.
Now I have no job. I live with my parents. And while I can come up with ideas to write, I never have the spoons to actually sit down and put those ideas in a coherent order so I end up forgetting most of them.
There is absolutely nothing I enjoy that I have the spoons to actually do— every spoon I have gets spent on eating, showering, and managing anxiety and sometimes I don’t even have enough to do that. How, exactly, do you expect me to be happy when I can’t ever do anything I enjoy? This is not “internalized ableism,” it’s a physical fact of being disabled. Ableism does not render me unable to focus long enough to write even an outline of a story. Ableism does not render me unable to work. Ableism did not destroy my executive functioning abilities and does not cause an anxiety overload every time something is different or I break a routine. Years ago, I started learning how to draw so I could eventually work on a webcomic; I stopped because I didn’t have the spoons to continue, not because of ableism.
@12 Olav:
Exactly!
There’s some evidence I can recover enough that I’ll no longer be disabled.
Were there no such evidence, I would consider an early death preferable to living like this.
People I know in similar conditions have said that cognitive remediation is the best option although I don’t know much about it.
I found one place that offered it, but they’re a long bus ride away and in any case they didn’t return my calls. When (or at this point maybe I should say “if”) I get approved for disability benefits, they’ll locate (and pay for!) a more practical option.
“Well meaning but completely useless” describes the best therapist I’ve seen.
One saw me for an initial consultation, said: “I don’t think I can help you” and then billed me $2,000 for the consultation (I didn’t pay it).
One decided that the problem wasn’t that I was autistic or having trouble doing things— no, the problem was that I was asexual and I would be cured of all symptoms once I “came out of the closet” as straight.
One was an actual psychiatrist and decided that the solution was drugs, drugs, and more drugs! And if the drugs don’t work, try different drugs!
One told me that I could be cured by reading books from “like-minded authors” and responded to my unsuppressable eyeroll with: “Well, if you’re going to reject everything I say, why bother seeing anyone?”
One seemed competent during the initial consultation, but then told my parents about what we’d talked about— and when confronted about this, responded with several variations on the concept of: “Well, you may be 30, but you’re disabled so you don’t count as an adult.”
One tried talking about his golf game during an appointment he was charging me $350 for. When I said: “That’s very nice but I’m here to talk about me,” he responded by declaring that I really needed to work on my conversational skills because I can’t just talk about me all the time.
But I think the most annoying one (not the worst, but the most viscerally aggravating) was the cognitive behavioral therapist whose entire treatment program was based on the assumption that I could think and plan my way out of not having enough spoons to think and plan anything.
@WMDKitty 14, 16, slightly out of order:
No one here has displayed internalized ableism.
Then you aren’t really disabled.
Being unable to do things you would never have done anyway isn’t actually a disability. It’s a curiosity. It would be like me learning I was physically incapable of having sex— I’d say, “oh, well I’m a sex-averse ace so I wasn’t planning to anyway, nothing lost then.”
When you can’t live a full life or be active in your community? That is a disability. When there is nothing you want to do that you can do? That is a disability. When you’ve planned exactly how you’ll commit suicide once your last hope of treatment is gone but deliberately left a critical flaw in the plan specifically because you’re stretching your optimism to assume it won’t come to that? That is a disability. When you know you can repair the critical flaw if it does come to that because death is preferable to the living hell you’re stuck in? That is a disability.
This one line made my chutzpahmeter explode.
As a person who is barely disabled and perfectly able to live a fulfilling life you respond to a person who is severely disabled and not able to live an even remotely fulfilling life and ablesplain at them about how they’d be much happier if they lived a fulfilling life instead of whining about how they’re too disabled to live a fulfilling life. After all, the only barrier to living a fulfilling life is “internalized ableism” so if I learned to accept myself as a person who is unable to work I would magically become able to work or something?
But the icing on the cake is your choice of words: “…spend my time and energy on living.”
Because I’m disabled, I need to literally spend my time and energy on living— as in, the tasks necessary for physically surviving take up a hefty chunk of my time and energy on a good day. The idea of spending time and energy on figuratively living – as in, doing fun or fulfilling things – is a luxury I can barely even dream about. So this statement sounds very much like the spoon equivalent of saying: “I’d rather spend my money on fancy cars and vacations to Bali than on check cashing fees and payday loan interest.”
I spoke with another disabled person I know, and they seem to think that this is basically a coping mechanism on your part.
That’s fine. I wouldn’t begrudge anyone their coping mechanism. My coping mechanism is to believe in an afterlife and I’m on an atheist forum.
But please understand the effect you’re having when you impose this on other people. Denying or minimizing your own disability is fine. Denying and minimizing my disability and the distress it causes me? Is really ableist.
CaitieCat:
Yep. People who don’t deal with pain every day just do not understand how much it grinds you down. There’s never any actual absence of it. I started getting additional injections in my neck, shoulders, and upper spine, and I get about two amazing days, every 3.5 months, where I get to be a normal person, and enjoy my work, because I’m not in screaming pain, or so medicated I can’t think. It makes the pain 10 times worse when it comes crashing back, but those two days, I live for them, a lot.
Today’s fun-time fulfilling task that I’m working on:
The disability office has mailed to me a preliminary approval which is necessary in order to complete the application for benefits. However, it is not sufficient to complete the application for benefits. In order to complete the application, I need some paperwork from my assistant-person.
Unfortunately, he can’t provide the necessary paperwork unless he has a copy of my preliminary approval, and the copy that was supposed to go to him never showed up and likely never will. So in order to proceed, I need to send him a copy of my copy.
But my copy is on paper. In order to email it to him, I’d need to scan it first. I don’t have a scanner. I know someone who does, but getting there on my current spoon levels would be an all-day affair with no guarantee of success— and it means leaving a copy of my sensitive documents in the system of someone who probably means well but can maybe be a little too nosy.
I could try the poor-person-scanning method of taking pictures of the papers with my cell phone, but that means poor resolution copies. And then I’d need to take the pictures off my cell phone, and get them collated into a PDF. So while it doesn’t require me to go anywhere, it’s still a somewhat spoon-intensive process because of the executive functioning needed to coordinate all the little steps.
Or I could just abandon my internalized ableism, take pride in who I am, and thus magically have the spoons to get this paperwork done.
Yesterday’s fun-time fulfilling activity was a fake heart attack.
Due to routines being disrupted, I had a huge anxiety explosion. Anxiety starts with physical symptoms but quickly demands a “reason” for existing and will invent one, so it “decided” I was having a heart attack. Once anxiety reaches that point, I find that dismissing its “reason” actually diminishes it. Unfortunately, anxiety is not rational and does not listen to evidence. Fortunately, because it’s irrational I can weaponize my own cognitive biases against it— ad populum is a fallacy rational thinkers must avoid, but against anxiety it’s a useful tool; if I can get other people to confirm that I’m not, in fact, having a heart attack then I can declare: “I can’t be having a heart attack because it’s not like all these people can be wrong about that!”
So since my dad was the only person available at that hour, I had him do the honors. He even provided evidence that I couldn’t be having a heart attack even though that’s not really necessary. But anxiety is a clever thing in its own way. Having been forced to accept the idea that I wasn’t having a heart attack, it immediately decided that if dad knew so much about heart attacks this must be because dad was having a heart attack!
Jake Harben @ 38
I’m sorry you have to deal with this. It’s clear it’s a major problem for you and the fact that it is having such an effect on you is something people should respect.
In my own life, it took me a long time before I was willing to admit that this wasn’t just the juncture of depression and anxiety keeping me frozen. It was internalized ableism that kept me from seeking out help and admitting that this was OCD, because I didn’t want to be “crazy.” It’s not a good thing for me. It’s not a pleasant thing. It’s not adding stuff to my life that I need so I gain magic manic pixie insight. It’s not internalized ableism for me to dislike this thing that has caused me so much suffering.
Like a lot of people with OCD, most of my obsessions and compulsions are related to fear of harm to myself or loved ones. It means that every time I hold my baby nephew, I get an onslaught of mental images of dropping him and his skull getting bashed open, so I have to hold him in a specific way to make him safe. It means horrible mantra-like thought loops get stuck in my head–most commonly, I get this mental chant of “rape, murder, death”–that I can’t shake. It means interrupting my rituals can leave me not just unable to work that day, but maybe for weeks. It means I’ve gone literal weeks without stepping outside. Months without actually speaking to anyone not a family member. It means I have to save every text I have, every note, every memory, hoarding them like the loved ones I share those memories with will cease to exist if I can’t record everything externally.
Does therapy help? It can, but it’s not a guarantee. I’ve gotten better in some ways, but it’s not uniform and it’s still a struggle. Some people can’t ever get improvement. They aren’t lazy. They aren’t self-loathing. They aren’t bad or wrong. They are suffering and it’s an inarguable fact that therapy and medication, whether alone or combined, don’t currently help every single person. There is no 100% effective treatment at this time. It doesn’t exist.
When our continued struggles are brushed off? When we’re told that we just need to get over it, that all of our problems aren’t really important? That’s ableism.
Fuck. Sorry, Jake. I accidentally misspelled your name in #41.
Jake —
I’m starting to understand why this hits you hard. I didn’t know for a long time that I could get help, but what you’ve said, what you’ve been put through to get help?
Man.
I can only offer a hug and say, you’re not alone. Please let us know how you are, but cool down. I know this sounds stupid, maybe, but you’re in a world of anger because you can’t get help, and you’re taking it out on these people who’ve not been part of the bureaucracy that has kept you from help that you should by _all means_ be getting as a human being.
@Jake — “Then you aren’t really disabled.”
You really are a fucking tool. I’m IN A WHEELCHAIR, YOU INSUFFERABLE ASSHOLE. Can’t walk. DISABLED. You want me to go find my medical records and post those, ‘cuz I can.
It sucks ass that you’re not getting what you need — but that’s no excuse for you to take it out on me.
Took my time, gathered my words, peacing out after this comment before I swallow my foot.
I’d like to use my spoons on, like, living life to the fullest extent I can, rather than focusing on what I can’t do. Part of it, you can probably pin on my parents, who really pushed me hard to be as independent as possible. They didn’t discourage me from (trying to) keep up with the other kids, you know? They busted ass to facilitate my participation in activities. Okay, not always for the better, and I’ve always — and I mean always — been a stubborn little shit. Tell me I “can’t” and I’m gonna stare you down with a “Challenge Accepted” and then try and try again until I either succeed, or end up getting myself hurt, and where was I, again?
Right.
Like, why add to my existing mental health issues by making myself miserable with “I can’t, I can’t, I can’t”?
I’m already dealing with enough negative shit that finding and deliberately enjoying the positive things in my life has become an essential self-care task.
Yes, a lot of days, I just veg and surf and watch some TV. But I also get out to social events every now and then, when the weather allows it I’m out “running” (wandering) the trails, I go to open-gym physical therapy once a week (and yes, we all chat), and I have friends that I see on a fairly regular basis. D&D once a week. THIS is what I want to be doing, not focusing on what I can’t!
And I’m PROUD to be who I am, disabilities and all — they suck sometimes, yeah, and there’s stuff I can’t do, but so WHAT? I’m gonna ENJOY what I got while I got it! (All within ethical and legal boundaries, of course!)
Prescient, I: (Yeah, I know some people are gonna think me an asshole for writing that :| )
PS Sorry for tarring you with my approval, WMDKitty, but I do admire your attitude)
@WMDKitty 44, 45:
I’ll take your word for it that you’re in a wheelchair and while, as noted, I won’t begrudge anyone their coping mechanism I’d really prefer if you didn’t deny or minimize my disability along with your own.
I very much identify with that, but unfortunately I’ve reached the point where “I can’t” is just a default state.
I can’t find or enjoy any positive things in my life because there aren’t any; what few positive things I can find are incredibly spoon-intensive and will leave me wracked with anxiety simply for being different from my interminable boring routines.
That’s good— why focus on what you can’t do when you can focus on social events, wandering trails, seeing friends, and playing D&D? I’d love to take that advice, except that I don’t have friends or social events or D&D and getting out of the house for a walk is something I rarely have the spoons to do.
I think this is reflective of a deeper difference in viewpoints here.
I’m also perfectly proud to be who I am. But “who I am” is not disabled.
Maybe it’s because I became disabled later in life. Maybe it’s because I’ve always had a fluid notion of self. But I don’t think of my disability as “part of me.” It’s external. It’s something imposed on me. Autism and disability are not inherent to who I am; they are burdens that the real, able, neurotypical me has to carry. So go ahead and criticize autism. Talk about how disabilities suck. I won’t take that as a personal affront because autism and disability are not part of me.
Today’s accomplishments: I did, in fact, get semi-legible scans of my paperwork to Paperwork Assistant Person.
They arrived after business hours so he won’t get them until tomorrow but they are sitting in his inbox nonetheless.
Unfortunately, I’m now just about out of spoons which is a problem because I haven’t eaten anything today and there’s absolutely nothing to eat in the house that won’t take spoons to prepare. On the plus side, the cake I made last week seems to have vanished so maybe I can guilt-trip one of my parents into making me something in recompense for having eaten my cake.
Tomorrow’s fun-time fulfilling activity: Order a new battery for my laptop because the old one finally bloated up to the point where it actually cracked the computer’s case. I think I can get a new battery for about $20, but cheap laptop batteries are always kind of a gamble.
teejaykay, yeah, Catholic upbringing.
(If you’re right, I never got over it)
I listen. I hear you.
You inform me.
John @ 49
And I salute you, as one tired person. I was about to go to bed when I saw this reply.
You’re heard, too.
Jake #48, thanks for bringing “spoon theory” to my attention in this thread. That could be useful in the future.
With regard to your scanning needs: if you haven’t found a better solution yet and if your smartphone has Android then perhaps this app could be useful for you.
https://play.google.com/store/apps/details?id=net.halfmobile.scannerfree
It is a somewhat older app already but it works. It lets you photograph your documents and creates almost-nice, printable PDFs for sharing. It does this all on the phone itself, no connection to a computer needed. I do have a proper document scanner at home but this app has saved me on a few occasions where I had to quickly assemble a PDF while away.
After getting used to it it should not require too many spoons to operate, is my estimation. It is quite easy and fast. Just a tip from experience: when photographing a document, place the sheets on a contrasting (not white) surface and leave a little border around the sheets visible in the pictures. The software will then automatically find the corners of the sheets and straighten the pictures for you. Oh, and lighting (like a desk lamp) helps too sometimes.
Sorry for offtopicness, everyone.
One more thing, with apologies (again). If it seems as if I am promoting the app I mentioned as better than others: it probably is not. It is just the one I happened upon a while ago and it has worked for me. I paid for it so I stuck with it. I am sure there are many others in this category that are just as nice or even better.
Here’s what I’m getting from these comments. Many disabilities really are disabling, reducing one’s entire sense of self and reducing them as a person.
But there’s no reason the rest of society has to go and make all that worse. We can either see their diminished capabilities and see their entire worth as people “diminished”, or we can try to be sympathetic and help them when we can, as those who are more privileged.
Hmm, do you think maybe the character of The Joker (and most of Batman’s villains) are bad and should be retired? Every time I think about issues like these, I wonder if the “best written” villains only look that way to the abled and really are just furthering hateful stereotypes.
Well, just my own two cents, but part of my big problem with the Batman mythos is that it’s pretty much “rich guy beats up the mentally ill, who are obviously dangerous and need to be sent to an asylum”
I mean, sure, there’s more to it than that, especially in modern portrayals that point out that Batman himself is a guy fueled by trauma that dresses up as a fucking bat or by portraying the villains as tragic, but imo I’d be perfectly fine if, in the future, we look back at Batman with the same tsk-tsking that we look at something like Doc Savage.