Like with so many things, taking what is said on the internet, and on social media in particular, as representative is fraught to begin with. Sure, you'll have groups of autistic people bristle at it being a disability, and while it very well may feel like that for them, but that doesn't make it true. One thing that strikes me with them is that they frequently are white, straight, and affluent. To be blunt, no shit you don't feel it's a disability for you if you don't have to grovel, debase, and hurt yourself to survive.
The people throwing a wobbler about neighbor's bringing them food is another one. I genuinely can't wrap my head around getting angry about that, about it being "ableist", and I'm the bugfuck insane, weapons-grade autistic isolated weirdo. If you'd took these people to stand for every disabled person, you'd be very mistaken though. Thing is, it happened to me just the other day. A new neighbor came by to say hi and brought some food. To my everlasting regret sensory issues were too fucky to eat much of it, but that's my issue, and I'd be mortified to complain about that. So I thanked them for it, and reciprocated the gesture some time after. It's the gesture that matters, not the stuff itself, but if you'd look at what people say on social media, you wouldn't get that.
Also, with autism in particular, there is (or at least was) the notion that it stops being a thing as people become adults. Is that true, or is it an artifact of the time that the only people diagnosed were white boys from affluent backgrounds who'd get married at some point and effectively had a full-time caretaker in their wives to compensate for them, and worked in positions where social skills were not (as) necessary (your typical engineer or programmer), or could off-load it into a secretary/assistant? (My point here is to say once again that official diagnostic criteria etc. are frequently biased and/or full of shit.)
THANK YOU! Saved me from writing my own criticism.
I will add a couple of comments about “self-diagnosing.”
First, it is *obviously* a logical fallacy to say that if there are people who lie about having disabilities on the internet (and I will accept that premise), then all people on the internet who claim a disability are lying. Further, if a trained mental health professional has not provided a diagnosis to a person, that doesn’t grant a stranger with opinions on the internet the credentials to diagnose in their place. People may sometimes lie on social media, but people are 100% more qualified to opine on their internal experience than said stranger!
Second, as a “young(ish) woman with a cane” who does have the blessing of the medical industrial complex to claim the label “disabled,” I am no longer free to emigrate to most “developed” countries. Given the current political climate, there are many people who might prefer to avoid an “official” diagnosis.
Finally, it literally has no impact on my Life that people talk about their real, perceived, or bullshit disabilities on social media. My only role there is to consume content. If they find community in this way (as I have in my relevant communities), more power to them. I was most bothered by how many words he used to justify being bothered by something that doesn’t impact him.
I work in legal representation for SSA disability benefits and I can assure you: what teenage girls say on TikTok has absolutely no impact whatsoever on the lives of the disabled people applying for SSI.
I find it interesting how deBoers line of thinking parallels transmedicalism- that a necessary step in order to be taken seriously is to first oust the "fakers", or that they are even the main reason why the larger public wouldn't take the "non-fakers" seriously.
I suppose it is tempting to blame someone for how society treats you, and it might be easier to point fingers at a smaller set of people rather than systemic issues in our society (that we can often be complicit in). A diagnosis can be a tool of oppression and I find it really weird that theyre often punching down at real people who might have less privilege and have more to lose from having something on their file. Are they simply continuing a cycle of policing and checking others as society has done to them and see "fakers" as an acceptable target? Are they upset that these people are not striving for conformity? Do they envy these people, in some manner? Or do they genuinely believe that if only the right people got to call themselves these special words, those words would suddenly mean something more respectable?
deBoer is the only person who has ever accused me of faking my own bipolar disorder. I corrected him on a factual error in a piece he wrote back in July and his response was...
"I'm sorry that someone was mean to you when you had some bullshit fake psychotic episode as a teenager to get attention but that's not my problem." (https://substack.com/@freddiedeboer/note/c-61124592) All of these biographical details (except psychosis hx) were invented for the purpose of the insult.
Sharing this obviously in part because I'm salty about it (jesus man, just admit you were wrong) but you hit the nail on the head at the end here. deBoer's pre-occupation with certain flamboyant displays of apparent madness are flowing directly from his need to identity-build in a very specific way following his public manic behavior. The archetype of the attention-seeking teenage girl with no real problems has to keep existing, or else deBoer has no one to contrast himself with to prove he's one of the good, self-debasing, ever-suffering-but-never-asking-for-empathy, medication-taking-no-matter-what crazy people, which he must do to be to publicly absolved and re-establish a career. He would do anything not to be known as bipolar, because it's done nothing but damage his reputation and even worse, his self-perception, so people who he perceives to be voluntarily adopting illness status and benefitting from the arrangement are big-time no-fair cheaters who must be punished. If he lets up flogging them for a minute someone might get confused about who the bad guy is and treat him with a comparable lack of compassion.
1. You cooked on this one. There are these biting bits of prose that really got me.
2. This reminds me SO MUCH of what myself and my handful of disabled fam have been exploring over the past year. I really enjoyed, particularly, the literature review slash grounded personal-political critique of Psychiatry - which extends into a thorough nudge in the directions of indigenous (African, in my case) knowledge systems.
3. What you detailed about the difficulty of accessing disability state welfare let alone the sheer impossibility of maintaining the narrowly understood performance of being disabled sparked my interest. I’m in gender diverse healthcare research and it’s so frustrating encountering moral panic (is that the term? lol) which completely misaligns with so much of research, so much of the conversation, so much of community stances.
4. “We have lived in a world where people have doubted disability for a very long time.” 4+4=
I appreciate "how difficult it actually is to be even what gets called a high-functioning person. " The muscle tension alone can be deep, systemic and very much non-visible As someone who read Unmasking in my early 60's I have shared the common revelations of looking at the past with new eyes. More than the confusion or emotions it's the energy tied up in suppressing the body/spirit that cannot be seen from the outside by others. Autism is an explanation that helps one come to grips with the situation not a superpower.
This is very good (and weirdly, my post in draft is about mental health discourse on the internet!). I took umbrage with another post of deBoer's a while ago where he basically disparaged ADHD while proving he didn't know much about it (IIRC, he likened having ADHD to the brain fog he gets from medication, which, brain fog is but the half of it. I WISH that were it). That being said, there were things in there I did agree with to an extent, but the dismissiveness of various mental health diagnoses doesn't sit right with me (even if self-diagnosed, which as you pointed out, is increasingly valid).
Firstly as a side note, I’m Takiwātanga/Autistic and I have to admit I often find a lot of Autistic (and all) content on these apps somewhat inaccessible. I know you’ve spoken before about “low support needs” Autistics taking up a lot of space in various forms of media. I consider myself pretty smart (went to Uni but dropped out due to burnout) but still a lot of content written by academics is hard to follow and decipher. I don’t suggest anyone “dumb down” content or make is shorter to accommodate, but I wish there was a version of these apps that provided Easy to read versions, like Disability advocacy services here in Aotearoa provide. A lot of these challenging and complex articles and issues that are discussed would be of interest and use to many, that currently can’t access/understand them.
I’ve worked in disability and mental health services for almost 20 years, with a focus on Advocacy and promoting Self Advocacy and often people with higher support needs are spoken for, not to, and left out of intelligent conversations because of assumptions around their intellect and understanding levels. Everything can be made accessible. Everything. But most media platforms choose not to.
Anyway with that all said hopefully what I say here will actually track and be relevant…
I’m part of a Late diagnosed/Self Identified Autistic group on Facebook. It’s large, 30k+
People. Frequently there are posts from people about to undergo the assessment process asking for advice on how to prepare for the assessment and ask what questions will come up etc. The responses are half positive, then the other half of people saying “If you need to prepare and want to know how to get a diagnosis then you’re not really Autistic”. I usually reply saying the cost involved, the high rate of misdiagnosis, the waitlists, the anxiety around meeting someone new in an unfamiliar environment etc are all perfectly valid reasons for asking for support around being prepared. Usually this is met with a statement around girls on social media claiming to be Autistic because it’s cool, or people getting false diagnoses because it’s cool. I usually have to ask at this point; what country are you living in where diagnoses are so cheap and easy to fake that people are handing them out and then the support and services and funding are so fabulous that everyone wants a diagnosis? Is this actually happening, at all? I can honestly say being Autistic has never made me “cool” in the eyes of other people. I’m clearly missing the party…
So it seems to be that a lot of shade is being thrown from members of our own community. Which is super unfortunate. But this is also prevalent, I’m also Takatāpui and recently met a woman I was considering dating until while discussing transgender she did the classic “I identify as a table leg” and that was the end of that. We face enough barriers, it’s sad when these come from within.
Anyway sorry for the novel, it’s how I roll haha
Arohanui for all that you do for our communities x
Kia ora! Thank you so much for your comment, Sarah. A lot of the level 2 & 3 Autistic community on the internet kinda hates me for (they perceive) being part of a huge influx of some of the privileged Autistics who can be hardest to deal with and suck up all the air in the room. Newly realized masked & level 1 Autistics do a lot to irritate and undermine their more visibly disabled siblings, it's true. And yet even trying to draw the line between who supposedly operates at that level and who doesn't is fraught and rooted in ableism, and restricting who gets to name their suffering does nothing to create a culture where disability is accepted as a completely natural and widespread feature of being alive rather than a rare aberration. And I hear you about the lack of accessibility of these conversations. Everything needs to slow down dramatically so we can take the time to give these discussions the care they deserve and keep the heart of our community at the center of them. I struggle with that -- the sense of urgency and overwhelm, the constantly having too much to do and not enough spoons to do it all, the fear that if I don't get the words out, I won't have them at all, and it has been a big barrier to me making my work as accessible as it ideally would be. It's an area in which I'd need more support in order to really do right on the level I should.
Over here we don’t get given levels when diagnosed. We’re all ASD. So this is a relatively new concept to me. I feel a sense of responsibility to continue to advocate for those with higher support needs, especially in certain areas.
One reason I think your work would be invaluable to those in the disability community if accessible is because you openly talk about sex. This is an area I worked a lot in over the decades, in particular when I ran a young adults disability service and we constantly had to advocate for human beings having the right to have sex, and support them to advocate for themselves around this. This was ridiculously and needlessly controversial. It was usually people from “within” who were the biggest barriers. Support workers, management and family members. Society may place barriers around disabled people, but those placed upon by the people in positions of authority, from inside the system, are often the most insidious.
I have so many stories around this. Really sad, shocking stories.
My service was considered “progressive” back then because it was the first service designed and run by the people who used it. Very strange that that would ever be considered anything other than how all services should be.
Anyway, I totally understand the pressures on you and not having the capacity for everything that needs to be done. I’d love to see your work in Easy to read formats at some point in the future, but also respect the time restraints to this. I’ll continue to share it and explain it as best I can to members of my hauā/disabled community.
Gosh, I would love to be a part of frank, accepting discussions of sex among disabled people who tend to be infantilized and denied access to such knowledge.
It’s an area that needs progressing. Especially amongst Hauā/Takatāpui communities. I’ve had situations where two young Down Syndrome men fell in love but were blocked from seeing each other by their staff and families. A young man in a wheelchair who wanted to engage with a sex worker, we did a lot of groundwork around this to establish informed consent and ensuring he understood exactly what would happen. But that was also blocked.
It would be amazing to have the support of more public figures and role models around this work. Send me a message if you do have the capacity to engage. No worries if not :)
Hello! What a wonderfully nuanced response. I'm fascinated by some of the spiritual implications of identifying as a system. This strikes me as an almost mystical application (superlative!) of a 'medical' idea that offers those adopting this framework, whether through exposure to internal family systems therapy or self identification with DID or both, a way of understanding themselves in a multifaceted, soulful manner. Mystics from ancient times and even in the present day, resist pure material existence through simultaneous embodiment and disembodiment, and in doing so, reify their understanding of life - that life happens across multiple planes with more or less comprehensible expressions to those who observe them. It's a healthy, if occasionally challenging way of experiencing life. Challenging to contemporary, highly policed understandings of reality, that is. I'm reminded of saints or holy figures in history who we often now frame as likely having lived with some type of mental illness, but who's visions of some type of beyond create the basis for the spiritual, mystical lore of mainstream faith. Visions and edicts that have progressively been removed and suppressed from mainstream faiths as unruly or challenging to the orthodox, highly materialist religious establishment. I wonder if the western suspicion of mysticism, indeed, even the Marxist suspicion of mysticism, is a limiting factor in understanding the legitimacy of this epistemological/spiritual framework. Thanks for giving me something to think about! Cheers.
thank you so much for writing about this! 🖤 I really appreciate the way you explain things. it clarified a lot for me about how I feel about this stuff, and it helped me out of a denial/shame cycle, too 💜
Thank you so much for writing this. It's given me so much to think about and introduced some new concepts to me, even though I'm already swimming in the waters of disability (I have physical and mental disabilities, my brother and father are Autistic, and my career is legal representation in Social Security disability claims for unhoused and incarcerated people).
What I've noticed through my life is that people often feel that disabled people are being disabled "at" them, as if the very act of being disabled is something that makes others uncomfortable and therefore incentivizes finding reasons to discredit someone as a "faker" or "too sensitive" or "seeking attention." This dynamic comes into play even when there's no pecuniary incentive. Because of ableism, people are just uncomfortable being presented with disability. I don't know if it's because it reminds people of their own vulnerability, if it's part of a scarcity mindset, if it's a toxic cocktail of white supremacy and misogyny and classism, if it's a distaste for having their attention drawn to something they find unpleasant and being asked to accommodate or be considerate, or more likely some combination of them all, but IME most people would much rather the people around them be liars than be disabled. It's psychologically comforting.
Of course, the idea that disability is for other people is fiction. Unless we're unfortunate enough to die first, we're all bound to have disabilities at some point in our life, *as well as different relationships with our own disabilities.*
I also got annoyed at the cheap potshots at young women who use canes, although maybe I'm just sensitive because I've started to carry a cane with a seat anytime I know I'll be on my feet for a few hours. I'm a dance teacher and an athlete with a conventionally "fit" body on the surface, but I have a genetic disorder that causes joint pain after prolonged standing and a heart condition. I've gotten plenty of dirty looks and snide comments since I started carrying my seat-cane because people assume that because they know a little bit about me that they know my body and health history. I'm sure FDB would look at me and say I'm faking for attention too, because if I can teach Zumba shouldn't I be able to stand in line at Costco? But that really just reflects a very binary view of disability, where someone can either do everything with their body or can't, which we know isn't the case. Disability isn't even a spectrum; disability is like one of those bullseye pie-charts where each pie-slice is a different system in your body and is operating at a different level of capacity, and even those pie-slices can change minute to minute and change independently of each other or in tandem.
This is an outstanding piece. I am a neurodivergent Mad psychiatric survivor who is multiply disabled with physical and mental issues. I have also worked as a disability advocate for disabled people for two decades.(and currently facilitate anti carceral peer support groups for disabled and suicidal people)Articles like DeBoers piss me off on so many levels and you managed to capture most of them. At first I thought you missed a critique of the young women with canes and then saw your notes and you said exactly what I was about to say. Apparently he hasn’t heard of long COVID or knows how devastating it is. One thing I wanted to point out that is just nitpicky but my autistic brain feels the need to correct it. Most of what you described about our disability system was correct. It took me two years to get on and I have both physical and mental health issues. Some get on quicker and some much longer. But the amount you talk about combined with asset limits is for SSI/Supplemental Security Income which is the government’s need based program for folks who haven’t paid enough quarters into the system. (this is a very quick explanation) SSDI for folks who have paid into the system and have enough quarters and has an average amount of $1500(still abysmal) that is based on a formula of what each person paid into the system and varies for each person. People on SSDI don’t have the asset limits. (Or the marriage penalty) There is a decent Last Week Tonight with John Oliver that’s on disability benefits for people who might want to learn more about our f-ed up system. The other part that is so crappy is once we go through the hell of getting it, we are subject to surprise reviews where we have to re prove disability. I know this is a side rant but just want to point it out for future reference.
Like with so many things, taking what is said on the internet, and on social media in particular, as representative is fraught to begin with. Sure, you'll have groups of autistic people bristle at it being a disability, and while it very well may feel like that for them, but that doesn't make it true. One thing that strikes me with them is that they frequently are white, straight, and affluent. To be blunt, no shit you don't feel it's a disability for you if you don't have to grovel, debase, and hurt yourself to survive.
The people throwing a wobbler about neighbor's bringing them food is another one. I genuinely can't wrap my head around getting angry about that, about it being "ableist", and I'm the bugfuck insane, weapons-grade autistic isolated weirdo. If you'd took these people to stand for every disabled person, you'd be very mistaken though. Thing is, it happened to me just the other day. A new neighbor came by to say hi and brought some food. To my everlasting regret sensory issues were too fucky to eat much of it, but that's my issue, and I'd be mortified to complain about that. So I thanked them for it, and reciprocated the gesture some time after. It's the gesture that matters, not the stuff itself, but if you'd look at what people say on social media, you wouldn't get that.
Also, with autism in particular, there is (or at least was) the notion that it stops being a thing as people become adults. Is that true, or is it an artifact of the time that the only people diagnosed were white boys from affluent backgrounds who'd get married at some point and effectively had a full-time caretaker in their wives to compensate for them, and worked in positions where social skills were not (as) necessary (your typical engineer or programmer), or could off-load it into a secretary/assistant? (My point here is to say once again that official diagnostic criteria etc. are frequently biased and/or full of shit.)
I find your point about white boys “growing out of autism” hilariously astute and I had never thought of it like that!
THANK YOU! Saved me from writing my own criticism.
I will add a couple of comments about “self-diagnosing.”
First, it is *obviously* a logical fallacy to say that if there are people who lie about having disabilities on the internet (and I will accept that premise), then all people on the internet who claim a disability are lying. Further, if a trained mental health professional has not provided a diagnosis to a person, that doesn’t grant a stranger with opinions on the internet the credentials to diagnose in their place. People may sometimes lie on social media, but people are 100% more qualified to opine on their internal experience than said stranger!
Second, as a “young(ish) woman with a cane” who does have the blessing of the medical industrial complex to claim the label “disabled,” I am no longer free to emigrate to most “developed” countries. Given the current political climate, there are many people who might prefer to avoid an “official” diagnosis.
Finally, it literally has no impact on my Life that people talk about their real, perceived, or bullshit disabilities on social media. My only role there is to consume content. If they find community in this way (as I have in my relevant communities), more power to them. I was most bothered by how many words he used to justify being bothered by something that doesn’t impact him.
I work in legal representation for SSA disability benefits and I can assure you: what teenage girls say on TikTok has absolutely no impact whatsoever on the lives of the disabled people applying for SSI.
I find it interesting how deBoers line of thinking parallels transmedicalism- that a necessary step in order to be taken seriously is to first oust the "fakers", or that they are even the main reason why the larger public wouldn't take the "non-fakers" seriously.
I suppose it is tempting to blame someone for how society treats you, and it might be easier to point fingers at a smaller set of people rather than systemic issues in our society (that we can often be complicit in). A diagnosis can be a tool of oppression and I find it really weird that theyre often punching down at real people who might have less privilege and have more to lose from having something on their file. Are they simply continuing a cycle of policing and checking others as society has done to them and see "fakers" as an acceptable target? Are they upset that these people are not striving for conformity? Do they envy these people, in some manner? Or do they genuinely believe that if only the right people got to call themselves these special words, those words would suddenly mean something more respectable?
deBoer is the only person who has ever accused me of faking my own bipolar disorder. I corrected him on a factual error in a piece he wrote back in July and his response was...
"I'm sorry that someone was mean to you when you had some bullshit fake psychotic episode as a teenager to get attention but that's not my problem." (https://substack.com/@freddiedeboer/note/c-61124592) All of these biographical details (except psychosis hx) were invented for the purpose of the insult.
Sharing this obviously in part because I'm salty about it (jesus man, just admit you were wrong) but you hit the nail on the head at the end here. deBoer's pre-occupation with certain flamboyant displays of apparent madness are flowing directly from his need to identity-build in a very specific way following his public manic behavior. The archetype of the attention-seeking teenage girl with no real problems has to keep existing, or else deBoer has no one to contrast himself with to prove he's one of the good, self-debasing, ever-suffering-but-never-asking-for-empathy, medication-taking-no-matter-what crazy people, which he must do to be to publicly absolved and re-establish a career. He would do anything not to be known as bipolar, because it's done nothing but damage his reputation and even worse, his self-perception, so people who he perceives to be voluntarily adopting illness status and benefitting from the arrangement are big-time no-fair cheaters who must be punished. If he lets up flogging them for a minute someone might get confused about who the bad guy is and treat him with a comparable lack of compassion.
1. You cooked on this one. There are these biting bits of prose that really got me.
2. This reminds me SO MUCH of what myself and my handful of disabled fam have been exploring over the past year. I really enjoyed, particularly, the literature review slash grounded personal-political critique of Psychiatry - which extends into a thorough nudge in the directions of indigenous (African, in my case) knowledge systems.
3. What you detailed about the difficulty of accessing disability state welfare let alone the sheer impossibility of maintaining the narrowly understood performance of being disabled sparked my interest. I’m in gender diverse healthcare research and it’s so frustrating encountering moral panic (is that the term? lol) which completely misaligns with so much of research, so much of the conversation, so much of community stances.
4. “We have lived in a world where people have doubted disability for a very long time.” 4+4=
I appreciate "how difficult it actually is to be even what gets called a high-functioning person. " The muscle tension alone can be deep, systemic and very much non-visible As someone who read Unmasking in my early 60's I have shared the common revelations of looking at the past with new eyes. More than the confusion or emotions it's the energy tied up in suppressing the body/spirit that cannot be seen from the outside by others. Autism is an explanation that helps one come to grips with the situation not a superpower.
This is very good (and weirdly, my post in draft is about mental health discourse on the internet!). I took umbrage with another post of deBoer's a while ago where he basically disparaged ADHD while proving he didn't know much about it (IIRC, he likened having ADHD to the brain fog he gets from medication, which, brain fog is but the half of it. I WISH that were it). That being said, there were things in there I did agree with to an extent, but the dismissiveness of various mental health diagnoses doesn't sit right with me (even if self-diagnosed, which as you pointed out, is increasingly valid).
Wow, this is powerful. Every word of it I was nodding my head. Thank you from a fellow late diagnosed autistic who is deeply, deeply tired.
Firstly as a side note, I’m Takiwātanga/Autistic and I have to admit I often find a lot of Autistic (and all) content on these apps somewhat inaccessible. I know you’ve spoken before about “low support needs” Autistics taking up a lot of space in various forms of media. I consider myself pretty smart (went to Uni but dropped out due to burnout) but still a lot of content written by academics is hard to follow and decipher. I don’t suggest anyone “dumb down” content or make is shorter to accommodate, but I wish there was a version of these apps that provided Easy to read versions, like Disability advocacy services here in Aotearoa provide. A lot of these challenging and complex articles and issues that are discussed would be of interest and use to many, that currently can’t access/understand them.
I’ve worked in disability and mental health services for almost 20 years, with a focus on Advocacy and promoting Self Advocacy and often people with higher support needs are spoken for, not to, and left out of intelligent conversations because of assumptions around their intellect and understanding levels. Everything can be made accessible. Everything. But most media platforms choose not to.
Anyway with that all said hopefully what I say here will actually track and be relevant…
I’m part of a Late diagnosed/Self Identified Autistic group on Facebook. It’s large, 30k+
People. Frequently there are posts from people about to undergo the assessment process asking for advice on how to prepare for the assessment and ask what questions will come up etc. The responses are half positive, then the other half of people saying “If you need to prepare and want to know how to get a diagnosis then you’re not really Autistic”. I usually reply saying the cost involved, the high rate of misdiagnosis, the waitlists, the anxiety around meeting someone new in an unfamiliar environment etc are all perfectly valid reasons for asking for support around being prepared. Usually this is met with a statement around girls on social media claiming to be Autistic because it’s cool, or people getting false diagnoses because it’s cool. I usually have to ask at this point; what country are you living in where diagnoses are so cheap and easy to fake that people are handing them out and then the support and services and funding are so fabulous that everyone wants a diagnosis? Is this actually happening, at all? I can honestly say being Autistic has never made me “cool” in the eyes of other people. I’m clearly missing the party…
So it seems to be that a lot of shade is being thrown from members of our own community. Which is super unfortunate. But this is also prevalent, I’m also Takatāpui and recently met a woman I was considering dating until while discussing transgender she did the classic “I identify as a table leg” and that was the end of that. We face enough barriers, it’s sad when these come from within.
Anyway sorry for the novel, it’s how I roll haha
Arohanui for all that you do for our communities x
Kia ora! Thank you so much for your comment, Sarah. A lot of the level 2 & 3 Autistic community on the internet kinda hates me for (they perceive) being part of a huge influx of some of the privileged Autistics who can be hardest to deal with and suck up all the air in the room. Newly realized masked & level 1 Autistics do a lot to irritate and undermine their more visibly disabled siblings, it's true. And yet even trying to draw the line between who supposedly operates at that level and who doesn't is fraught and rooted in ableism, and restricting who gets to name their suffering does nothing to create a culture where disability is accepted as a completely natural and widespread feature of being alive rather than a rare aberration. And I hear you about the lack of accessibility of these conversations. Everything needs to slow down dramatically so we can take the time to give these discussions the care they deserve and keep the heart of our community at the center of them. I struggle with that -- the sense of urgency and overwhelm, the constantly having too much to do and not enough spoons to do it all, the fear that if I don't get the words out, I won't have them at all, and it has been a big barrier to me making my work as accessible as it ideally would be. It's an area in which I'd need more support in order to really do right on the level I should.
Kia pai te rā.
Over here we don’t get given levels when diagnosed. We’re all ASD. So this is a relatively new concept to me. I feel a sense of responsibility to continue to advocate for those with higher support needs, especially in certain areas.
One reason I think your work would be invaluable to those in the disability community if accessible is because you openly talk about sex. This is an area I worked a lot in over the decades, in particular when I ran a young adults disability service and we constantly had to advocate for human beings having the right to have sex, and support them to advocate for themselves around this. This was ridiculously and needlessly controversial. It was usually people from “within” who were the biggest barriers. Support workers, management and family members. Society may place barriers around disabled people, but those placed upon by the people in positions of authority, from inside the system, are often the most insidious.
I have so many stories around this. Really sad, shocking stories.
My service was considered “progressive” back then because it was the first service designed and run by the people who used it. Very strange that that would ever be considered anything other than how all services should be.
Anyway, I totally understand the pressures on you and not having the capacity for everything that needs to be done. I’d love to see your work in Easy to read formats at some point in the future, but also respect the time restraints to this. I’ll continue to share it and explain it as best I can to members of my hauā/disabled community.
Gosh, I would love to be a part of frank, accepting discussions of sex among disabled people who tend to be infantilized and denied access to such knowledge.
It’s an area that needs progressing. Especially amongst Hauā/Takatāpui communities. I’ve had situations where two young Down Syndrome men fell in love but were blocked from seeing each other by their staff and families. A young man in a wheelchair who wanted to engage with a sex worker, we did a lot of groundwork around this to establish informed consent and ensuring he understood exactly what would happen. But that was also blocked.
It would be amazing to have the support of more public figures and role models around this work. Send me a message if you do have the capacity to engage. No worries if not :)
😢
Hello! What a wonderfully nuanced response. I'm fascinated by some of the spiritual implications of identifying as a system. This strikes me as an almost mystical application (superlative!) of a 'medical' idea that offers those adopting this framework, whether through exposure to internal family systems therapy or self identification with DID or both, a way of understanding themselves in a multifaceted, soulful manner. Mystics from ancient times and even in the present day, resist pure material existence through simultaneous embodiment and disembodiment, and in doing so, reify their understanding of life - that life happens across multiple planes with more or less comprehensible expressions to those who observe them. It's a healthy, if occasionally challenging way of experiencing life. Challenging to contemporary, highly policed understandings of reality, that is. I'm reminded of saints or holy figures in history who we often now frame as likely having lived with some type of mental illness, but who's visions of some type of beyond create the basis for the spiritual, mystical lore of mainstream faith. Visions and edicts that have progressively been removed and suppressed from mainstream faiths as unruly or challenging to the orthodox, highly materialist religious establishment. I wonder if the western suspicion of mysticism, indeed, even the Marxist suspicion of mysticism, is a limiting factor in understanding the legitimacy of this epistemological/spiritual framework. Thanks for giving me something to think about! Cheers.
thank you so much for writing about this! 🖤 I really appreciate the way you explain things. it clarified a lot for me about how I feel about this stuff, and it helped me out of a denial/shame cycle, too 💜
thank you for this detailed breakdown! really thought provoking.
This was a fantastic read, thank you.
Hit all the nails on the head!! Very good analysis
Thank you so much for writing this. It's given me so much to think about and introduced some new concepts to me, even though I'm already swimming in the waters of disability (I have physical and mental disabilities, my brother and father are Autistic, and my career is legal representation in Social Security disability claims for unhoused and incarcerated people).
What I've noticed through my life is that people often feel that disabled people are being disabled "at" them, as if the very act of being disabled is something that makes others uncomfortable and therefore incentivizes finding reasons to discredit someone as a "faker" or "too sensitive" or "seeking attention." This dynamic comes into play even when there's no pecuniary incentive. Because of ableism, people are just uncomfortable being presented with disability. I don't know if it's because it reminds people of their own vulnerability, if it's part of a scarcity mindset, if it's a toxic cocktail of white supremacy and misogyny and classism, if it's a distaste for having their attention drawn to something they find unpleasant and being asked to accommodate or be considerate, or more likely some combination of them all, but IME most people would much rather the people around them be liars than be disabled. It's psychologically comforting.
Of course, the idea that disability is for other people is fiction. Unless we're unfortunate enough to die first, we're all bound to have disabilities at some point in our life, *as well as different relationships with our own disabilities.*
I also got annoyed at the cheap potshots at young women who use canes, although maybe I'm just sensitive because I've started to carry a cane with a seat anytime I know I'll be on my feet for a few hours. I'm a dance teacher and an athlete with a conventionally "fit" body on the surface, but I have a genetic disorder that causes joint pain after prolonged standing and a heart condition. I've gotten plenty of dirty looks and snide comments since I started carrying my seat-cane because people assume that because they know a little bit about me that they know my body and health history. I'm sure FDB would look at me and say I'm faking for attention too, because if I can teach Zumba shouldn't I be able to stand in line at Costco? But that really just reflects a very binary view of disability, where someone can either do everything with their body or can't, which we know isn't the case. Disability isn't even a spectrum; disability is like one of those bullseye pie-charts where each pie-slice is a different system in your body and is operating at a different level of capacity, and even those pie-slices can change minute to minute and change independently of each other or in tandem.
This is an outstanding piece. I am a neurodivergent Mad psychiatric survivor who is multiply disabled with physical and mental issues. I have also worked as a disability advocate for disabled people for two decades.(and currently facilitate anti carceral peer support groups for disabled and suicidal people)Articles like DeBoers piss me off on so many levels and you managed to capture most of them. At first I thought you missed a critique of the young women with canes and then saw your notes and you said exactly what I was about to say. Apparently he hasn’t heard of long COVID or knows how devastating it is. One thing I wanted to point out that is just nitpicky but my autistic brain feels the need to correct it. Most of what you described about our disability system was correct. It took me two years to get on and I have both physical and mental health issues. Some get on quicker and some much longer. But the amount you talk about combined with asset limits is for SSI/Supplemental Security Income which is the government’s need based program for folks who haven’t paid enough quarters into the system. (this is a very quick explanation) SSDI for folks who have paid into the system and have enough quarters and has an average amount of $1500(still abysmal) that is based on a formula of what each person paid into the system and varies for each person. People on SSDI don’t have the asset limits. (Or the marriage penalty) There is a decent Last Week Tonight with John Oliver that’s on disability benefits for people who might want to learn more about our f-ed up system. The other part that is so crappy is once we go through the hell of getting it, we are subject to surprise reviews where we have to re prove disability. I know this is a side rant but just want to point it out for future reference.