Open thread: Disability, d/Deafness, and neurodiversity September 1, 2019 9:07 AM Subscribe
This thread is a place for us to explain what ableism is (explaining two models of disability and some other useful concepts), and provide a place for people affected by ableism to talk to one another in a space relatively free of pressure from people who are not impacted by that. You get to decide whether ableism affects you -- this thread is for everyone to read and for disabled people to (mostly) participate in. It is okay and highly encouraged for people to talk about themselves and their own experiences, but less so to talk about other people's imagined experiences.
As with the ongoing threads for people of color, we ask that folks keep in mind that favoriting is also a form of participation and apply the same guidelines to favoriting as to commenting.
I want you to know about two ways to think about disability. This will help us have a better conversation. One of them is the medical model of disability. The medical model sees disability as a medical problem of illness that doctors and patients need to solve. The other one is the social model of disability. The social model sees disability as a social problem of access that people in power need to solve. Most people and organizations right now think and act in terms of the medical model, so they prioritize "fixing" disabled individuals. But, in reaction to that, disability civil rights advocates use the social model. The social model asks us to think about what activities and spaces need to function, and whether the barriers that exist right now are necessary.
People on MetaFilter have many different disabilities. In a previous (July 30th-August 30th 2019) MetaTalk thread, we talked mostly about neuroatypicality and neurodivergence. Neuroatypical means that a person's brain brain works differently than society expects. Neurodivergent uses the social model of disability to say: that's not a bad thing, and if this person is disabled, it's only because society doesn't accommodate them.
But the brain-body distinction is kind of bullshit. So: this thread is for disabled people in general. d/Deaf people, blind people, wheelchair users and other mobility-impaired people, people with brain injuries, people with chronic pain and fatigue, epileptic people, people with mood disorders, ADHD, autism, bipolar, addiction, obsessive-compulsive disorder, DID/MPD... But that's just for illustration, not to limit participants to that list. If ableism affects you, come on in.
Here are some useful things to know:
Disability is a complicated identity. Some people in the same category disagree whether they are "really" disabled, especially in Deaf and autistic communities. Often this comes from people using the social model to argue that the problem is society, not the person speaking. That tension is okay here.
You don't need a doctor's diagnosis to identify as disabled. Diagnosis can sometimes be difficult to access, and norms about who "counts" within disability circles vary from disability community to community.
Different people sometimes have conflicting access needs. Sometimes a group can't accommodate them at the same time. Sometimes conflicts can be resolved by talking explicitly about exactly what is needed and finding ways to meet all needs, but sometimes they are resolved by agreeing to partition space or time in a way that works best for all parties.
Burdens of accommodation scale to the power and abilities of the group being asked to accommodate. With great power comes great responsibility; with less power, less responsibility.
Some ground rules for this discussion:
Disabled and neuroatypical people should be talking most of the time. Neurotypical people without disabilities, take a step back and mostly listen.
Some people prefer person-first (such as "person with autism") or identity-first ("autistic person") language. Please respect others' preferences and let them talk about themselves however is comfortable for them.
"I'm here" and "I agree with this (quoted) point" comments are helpful and welcome. Your voice matters, if you have the energy to speak.
Even more than usual, please try to be gentle with each other and yourself in this thread. (Especially because some of us, because of our disabilities, have a particularly difficult time dealing with expressions of anger.)
I want to use this space to thank diss track able, who will be taking a step back from discussions of neurodiversity in order to let their pseudonym simmer down, but who has done incredible work in both the crafting of this thread's language and also in holding space in their previous FPP centering neurodiversity. Much of the text of this thread is their work, not mine. Thanks also go to kanata and stoneweaver for commenting on this hypothetical thread and providing insight that, judging from the Drafts text, made it better.
Here are a few topics that might come up in this thread, or might not:
conflicting accommodation
accessibility gatekeeping and how it hurts
the curb cut effect
how we figure out which model of disability to apply in a situation
some of the philosophy under the Americans with Disabilities Act
this idea in the ADA: the more power a person has, the more duty they have to accommodate disabled people
As with the ongoing threads for people of color, we ask that folks keep in mind that favoriting is also a form of participation and apply the same guidelines to favoriting as to commenting.
I want you to know about two ways to think about disability. This will help us have a better conversation. One of them is the medical model of disability. The medical model sees disability as a medical problem of illness that doctors and patients need to solve. The other one is the social model of disability. The social model sees disability as a social problem of access that people in power need to solve. Most people and organizations right now think and act in terms of the medical model, so they prioritize "fixing" disabled individuals. But, in reaction to that, disability civil rights advocates use the social model. The social model asks us to think about what activities and spaces need to function, and whether the barriers that exist right now are necessary.
People on MetaFilter have many different disabilities. In a previous (July 30th-August 30th 2019) MetaTalk thread, we talked mostly about neuroatypicality and neurodivergence. Neuroatypical means that a person's brain brain works differently than society expects. Neurodivergent uses the social model of disability to say: that's not a bad thing, and if this person is disabled, it's only because society doesn't accommodate them.
But the brain-body distinction is kind of bullshit. So: this thread is for disabled people in general. d/Deaf people, blind people, wheelchair users and other mobility-impaired people, people with brain injuries, people with chronic pain and fatigue, epileptic people, people with mood disorders, ADHD, autism, bipolar, addiction, obsessive-compulsive disorder, DID/MPD... But that's just for illustration, not to limit participants to that list. If ableism affects you, come on in.
Here are some useful things to know:
Disability is a complicated identity. Some people in the same category disagree whether they are "really" disabled, especially in Deaf and autistic communities. Often this comes from people using the social model to argue that the problem is society, not the person speaking. That tension is okay here.
You don't need a doctor's diagnosis to identify as disabled. Diagnosis can sometimes be difficult to access, and norms about who "counts" within disability circles vary from disability community to community.
Different people sometimes have conflicting access needs. Sometimes a group can't accommodate them at the same time. Sometimes conflicts can be resolved by talking explicitly about exactly what is needed and finding ways to meet all needs, but sometimes they are resolved by agreeing to partition space or time in a way that works best for all parties.
Burdens of accommodation scale to the power and abilities of the group being asked to accommodate. With great power comes great responsibility; with less power, less responsibility.
Some ground rules for this discussion:
Disabled and neuroatypical people should be talking most of the time. Neurotypical people without disabilities, take a step back and mostly listen.
Some people prefer person-first (such as "person with autism") or identity-first ("autistic person") language. Please respect others' preferences and let them talk about themselves however is comfortable for them.
"I'm here" and "I agree with this (quoted) point" comments are helpful and welcome. Your voice matters, if you have the energy to speak.
Even more than usual, please try to be gentle with each other and yourself in this thread. (Especially because some of us, because of our disabilities, have a particularly difficult time dealing with expressions of anger.)
I want to use this space to thank diss track able, who will be taking a step back from discussions of neurodiversity in order to let their pseudonym simmer down, but who has done incredible work in both the crafting of this thread's language and also in holding space in their previous FPP centering neurodiversity. Much of the text of this thread is their work, not mine. Thanks also go to kanata and stoneweaver for commenting on this hypothetical thread and providing insight that, judging from the Drafts text, made it better.
Here are a few topics that might come up in this thread, or might not:
conflicting accommodation
accessibility gatekeeping and how it hurts
the curb cut effect
how we figure out which model of disability to apply in a situation
some of the philosophy under the Americans with Disabilities Act
this idea in the ADA: the more power a person has, the more duty they have to accommodate disabled people
An article on the curb cut effect, since it wasn't a term I was familiar with. (The article is lengthy, dense and a bit policy-wonkish, so I didn't actually read it all.) The summary is that, although curbcuts were thought of as purely an accessibility feature for wheelchair users, pedestrians, regardless of disability or whether they're carrying or pushing something, overwhelmingly use them.
posted by hoyland at 2:21 PM on September 1, 2019 [15 favorites]
posted by hoyland at 2:21 PM on September 1, 2019 [15 favorites]
Oh, hell, I'm sorry, I should have included a few definitions as I was drafting earlier today. Here's the text of a FPP I put together on the curb cut effect a few years ago - - more links in the FPP itself, since I'm on mobile now.
posted by sciatrix at 3:13 PM on September 1, 2019 [18 favorites]
You probably haven't thought about curb cuts recently, but you've almost certainly used one. Curb cuts were originally introduced to benefit mobility impaired people in wheelchairs, but they're used by nearly everyone. This is an example of the curb cut effect: accommodations are often initially developed for disabled people but prove to make everyone's lives a little easier. The philosophy of inclusive design incorporates building accommodation for disabilities into products and architecture as a way to improve the product for everyone who might use it.So the central idea of the curb cut effect is that taking the time to make yourself accessible to people with disabilities benefits everyone. For example, if you take the time to mandate closed captioning for the Deaf on all public television, those closed captions can also be used by people watching television that has been muted, people learning a second language struggling with comprehension, and so forth.
posted by sciatrix at 3:13 PM on September 1, 2019 [18 favorites]
No worries, and thank you for the better explanation than I gave. (Me: "Hi, let me get distracted by an interesting fact and not mention the actual point.")
I struggle a lot with internalised ablism/do I actually count as disabled. I went to an event recently that had early registration for people of color and people with disabilities. Cue crisis of conscience. Do I count? Do I not count? Never mind that travel is one thing I very, very predictably find difficult. I ended up trying to split the difference and registering the morning general registration opened (ahead of almost all would-be participants due to time zones).
posted by hoyland at 3:43 PM on September 1, 2019 [4 favorites]
I struggle a lot with internalised ablism/do I actually count as disabled. I went to an event recently that had early registration for people of color and people with disabilities. Cue crisis of conscience. Do I count? Do I not count? Never mind that travel is one thing I very, very predictably find difficult. I ended up trying to split the difference and registering the morning general registration opened (ahead of almost all would-be participants due to time zones).
posted by hoyland at 3:43 PM on September 1, 2019 [4 favorites]
Yeah, it's really hard to set up a space to talk about that sometimes because there's like, this line in a lot of our heads about who counts and who doesn't. And there's also a lot of well meaning gatekeeping that really intensifies that guilt for taking up space. For example, yelling at people who can stand or walk a few steps but also use a wheelchair. There's a lot of that sort of thing and it makes it even harder to deal with the internalized stuff, because you can be attacked for requesting to use accommodations that I theory exist for you to use.
There's a reason that the framing of this post steers away from specifics and towards identity and ableism when I'm talking about who "counts." Myopia, for example, is a disability, but I find that most people with myopia (including me) don't think of it that way because it's common enough that accommodating it is just a given. We make room for its assistative devices, which come in lots of styles and designs for different uses. We build other tools, like protective eyewear, with an eye towards being used by people who need those devices. And we don't shame people who need them for using those devices; in fact, in many circumstances we require them to use them. We do a good job of insulating people with myopia from ableism, so it doesn't occur to most people that it's a disability. But it is.
Myopia is of course more commonly known as nearsightedness, and the assistative devices most commonly used by people with myopia are eyeglasses. Other kinds of assistative tech, like hearing aids or long canes or wheelchairs or crutches or mobile scooters, open up the world for people with other kinds of disabilities in the same way glasses open up the world for me. But we treat these very differently.
posted by sciatrix at 4:43 PM on September 1, 2019 [17 favorites]
There's a reason that the framing of this post steers away from specifics and towards identity and ableism when I'm talking about who "counts." Myopia, for example, is a disability, but I find that most people with myopia (including me) don't think of it that way because it's common enough that accommodating it is just a given. We make room for its assistative devices, which come in lots of styles and designs for different uses. We build other tools, like protective eyewear, with an eye towards being used by people who need those devices. And we don't shame people who need them for using those devices; in fact, in many circumstances we require them to use them. We do a good job of insulating people with myopia from ableism, so it doesn't occur to most people that it's a disability. But it is.
Myopia is of course more commonly known as nearsightedness, and the assistative devices most commonly used by people with myopia are eyeglasses. Other kinds of assistative tech, like hearing aids or long canes or wheelchairs or crutches or mobile scooters, open up the world for people with other kinds of disabilities in the same way glasses open up the world for me. But we treat these very differently.
posted by sciatrix at 4:43 PM on September 1, 2019 [17 favorites]
thank you and everyone who contributed to the extremely thoughtful framing of this post! i also struggle with calling myself disabled. but if i ask myself, am i affected by ableism?, the answer is instantly yes. i relate to things that disabled people say about themselves, and i benefit from things that are designed for disabled people.
i still have trouble participating in disabled spaces for All Kinds Of Reasons, part of which has been being entirely self diagnosed (itself for All Kinds of Reasons) but then having months where i'll forget what i figured out about what's going on with my body because of definite brain problems that i have. so. im certain some of that is some kind of disability. but it gets hard to talk about with other people. and i would like to educate myself more about disability, like ... politically, bc it's been very helpful for me when i can find good sources of discussion.
i appreciate the inclusion of both models of disability, bc i lean heavily on the social model and sometimes forget that the medical model is more/still appropriate in some situations.
i'd like to offer this link describing access intimacy (and contrasting it with obligatory, shaming, or violating access) because someone thanked me for sharing it in an ask and it kind of rocked my world when i found it and this seems like an appropriate place for it? it's something i'm not sure if i've ever experienced but now look for in my relationships.
posted by gaybobbie at 7:04 PM on September 1, 2019 [9 favorites]
i still have trouble participating in disabled spaces for All Kinds Of Reasons, part of which has been being entirely self diagnosed (itself for All Kinds of Reasons) but then having months where i'll forget what i figured out about what's going on with my body because of definite brain problems that i have. so. im certain some of that is some kind of disability. but it gets hard to talk about with other people. and i would like to educate myself more about disability, like ... politically, bc it's been very helpful for me when i can find good sources of discussion.
i appreciate the inclusion of both models of disability, bc i lean heavily on the social model and sometimes forget that the medical model is more/still appropriate in some situations.
i'd like to offer this link describing access intimacy (and contrasting it with obligatory, shaming, or violating access) because someone thanked me for sharing it in an ask and it kind of rocked my world when i found it and this seems like an appropriate place for it? it's something i'm not sure if i've ever experienced but now look for in my relationships.
posted by gaybobbie at 7:04 PM on September 1, 2019 [9 favorites]
Oh. Thank you for the term access intimacy, which I absolutely have experienced; it and its lack are so important.
And thank you all for this thread. I wish I had the brain right now to say anything more.
posted by Rush-That-Speaks at 7:18 PM on September 1, 2019 [4 favorites]
And thank you all for this thread. I wish I had the brain right now to say anything more.
posted by Rush-That-Speaks at 7:18 PM on September 1, 2019 [4 favorites]
I feel like curb cuts really factor into that "do you feel like you count".
My social and sensory and executive function problems made me almost completely unemployable before I went to college, which I wasn't actually planning on doing otherwise. I just couldn't have any stability in that kind of world. As a software developer, suddenly... I'm not different, but my environment is. I can work from home on a bad day. If I have one day where I'm not so productive but another where I'm more productive than everybody else, literally nobody at my job cares. But these arrangements aren't here for accessibility; they cut the curb to help middle-class parents and homeowners like their jobs more, not to let other people into the space. I'm just benefiting by accident. And they did this in a hundred ways, but almost all of them apply only to people from certain class backgrounds.
It's very unsettling, especially when most of my friends still can't access the kind of help I get. I don't think of myself as disabled, but I'm pretty sure I was before I could code, and that's... a weird situation to be in, I guess.
posted by Sequence at 7:18 PM on September 1, 2019 [16 favorites]
My social and sensory and executive function problems made me almost completely unemployable before I went to college, which I wasn't actually planning on doing otherwise. I just couldn't have any stability in that kind of world. As a software developer, suddenly... I'm not different, but my environment is. I can work from home on a bad day. If I have one day where I'm not so productive but another where I'm more productive than everybody else, literally nobody at my job cares. But these arrangements aren't here for accessibility; they cut the curb to help middle-class parents and homeowners like their jobs more, not to let other people into the space. I'm just benefiting by accident. And they did this in a hundred ways, but almost all of them apply only to people from certain class backgrounds.
It's very unsettling, especially when most of my friends still can't access the kind of help I get. I don't think of myself as disabled, but I'm pretty sure I was before I could code, and that's... a weird situation to be in, I guess.
posted by Sequence at 7:18 PM on September 1, 2019 [16 favorites]
I've talked about this before but as a screen reader user, I would dearly love the mods to just insta-delete ASCII art. I don't need to navigate through a bunch of garbage text just to get to the next real post. Other folks reading this, I invite you to flag appropriately to keep MeFi readable for some of us. Also stuff like ROT13 for the same reason.
I generally appreciate that MetaFilter is mostly text-based and can be passively consumed by selecting a bunch of text and running it through text-to-speech while I code or do other things with the eyesight I still have. It's like a robot podcast hosted by lots of grumpy people. šš¤
PS I included the emoji because emoji are handled just fine by screen-readers and you should feel no hesitation to use them. Especially in place of those odd intricate unicode ones that crop up on Twitter a lot. ĀÆ\_(ć)_/ĀÆ to me sounds like "macron katakana-letter-tsu slash macron" but š¤·š¼āāļø is 'woman with medium-light skin tone shrugging' and is perfectly understandable.
posted by Space Coyote at 7:23 PM on September 1, 2019 [51 favorites]
I generally appreciate that MetaFilter is mostly text-based and can be passively consumed by selecting a bunch of text and running it through text-to-speech while I code or do other things with the eyesight I still have. It's like a robot podcast hosted by lots of grumpy people. šš¤
PS I included the emoji because emoji are handled just fine by screen-readers and you should feel no hesitation to use them. Especially in place of those odd intricate unicode ones that crop up on Twitter a lot. ĀÆ\_(ć)_/ĀÆ to me sounds like "macron katakana-letter-tsu slash macron" but š¤·š¼āāļø is 'woman with medium-light skin tone shrugging' and is perfectly understandable.
posted by Space Coyote at 7:23 PM on September 1, 2019 [51 favorites]
Though I do enjoy the little x-men superpower of knowing how to pronounce words in non-Latin scripts thanks to VoiceOver. It makes reading Language Log very enlightening when they do posts about Chinese pronunciation and puns.
posted by Space Coyote at 7:35 PM on September 1, 2019 [14 favorites]
posted by Space Coyote at 7:35 PM on September 1, 2019 [14 favorites]
in a funny (odd not laughing) turn of events, I ended up working for someone who studies disability after developing a condition that derailed my original career plans. My day job is now gathering information on disabilities and accommodations.
The medical model of disability is - thankfully - less wide spread than it used to be, and not at all standard among the many academics and practitioners who work on disability and accommodation issues.
Myopia, for example, is a disability, but I find that most people with myopia (including me) don't think of it that way because it's common enough that accommodating it is just a given.
This is my go-to example to explain to people how disability is a bio-psychosocial phenomenon. Myopia is is an impairment which causes a loss of function (sight), but which is not usually a barrier to social participation and thus not (usually) considered to be a disability.
(I have included some caveats, as I have actually been excluded at least one form of employment that I wished to pursue - the military reserve - due to my severe myopia, and it is sometimes limiting in other contexts, as it can't be fully corrected).
Space Coyote: thank you for the heads up re screen readers and emoticons versus emojis! I am one of those old emoticon users, as that was just the fashion when I was younger, but I will avoid them from now on in public media.
posted by jb at 11:40 PM on September 1, 2019 [13 favorites]
The medical model of disability is - thankfully - less wide spread than it used to be, and not at all standard among the many academics and practitioners who work on disability and accommodation issues.
Myopia, for example, is a disability, but I find that most people with myopia (including me) don't think of it that way because it's common enough that accommodating it is just a given.
This is my go-to example to explain to people how disability is a bio-psychosocial phenomenon. Myopia is is an impairment which causes a loss of function (sight), but which is not usually a barrier to social participation and thus not (usually) considered to be a disability.
(I have included some caveats, as I have actually been excluded at least one form of employment that I wished to pursue - the military reserve - due to my severe myopia, and it is sometimes limiting in other contexts, as it can't be fully corrected).
Space Coyote: thank you for the heads up re screen readers and emoticons versus emojis! I am one of those old emoticon users, as that was just the fashion when I was younger, but I will avoid them from now on in public media.
posted by jb at 11:40 PM on September 1, 2019 [13 favorites]
By saying I'm happy not to deal with the medical model of disability, I don't mean to say I don't support treatment. For me, my drugs are my assistive technology; my boss has spent years studying arthritis, and for inflammatory arthritis, drugs are literally life saving (as well as vastly improving health and functioning).
But because she studies the experiences of people with chronic illness, she's always aware (and putting it in her presentations for me and everyone else to hear) that even with good medical management, people will still experience disability, which is why accommodation is important.
But these arrangements aren't here for accessibility; they cut the curb to help middle-class parents and homeowners like their jobs more, not to let other people into the space. I'm just benefiting by accident. And they did this in a hundred ways, but almost all of them apply only to people from certain class backgrounds.
Work-from-home/telecommuting and flexibility in schedules, etc., are some of the most important workplace accommodations/policies for people with chronic, episodic conditions (our current area of study). Workplaces are beginning to realize this - and also that they have other benefits (for caregivers, etc.). You're right to note how they are limited by sector/type of work - it's a real challenge when trying to think about how to expand appropriate accommodations to other job types.
posted by jb at 11:52 PM on September 1, 2019 [9 favorites]
But because she studies the experiences of people with chronic illness, she's always aware (and putting it in her presentations for me and everyone else to hear) that even with good medical management, people will still experience disability, which is why accommodation is important.
But these arrangements aren't here for accessibility; they cut the curb to help middle-class parents and homeowners like their jobs more, not to let other people into the space. I'm just benefiting by accident. And they did this in a hundred ways, but almost all of them apply only to people from certain class backgrounds.
Work-from-home/telecommuting and flexibility in schedules, etc., are some of the most important workplace accommodations/policies for people with chronic, episodic conditions (our current area of study). Workplaces are beginning to realize this - and also that they have other benefits (for caregivers, etc.). You're right to note how they are limited by sector/type of work - it's a real challenge when trying to think about how to expand appropriate accommodations to other job types.
posted by jb at 11:52 PM on September 1, 2019 [9 favorites]
I always felt that I was possibly neurodivergant and used to joke about it. It wasn't until I suffered a catastrophic stroke from which I made an absolutely incredible recovery and had to work with a neurologist that I found out I was on the spectrum, so to speak. She was interested in my neuroplasticity and asked me if I was autistic (and here I'd thought I was doing so well at being 'normal') so I took some tests and I got my Autism badge. Most people I knew refused to believe it, but for me it was a real relief to realize that the things I struggled with were normal for people with ASD.
But because one invisible disability is not enough, now I have a rare form of cancer (myelofibrosis) that interfers with my bone marrow and red blood cell production. I'm pretty lucky. I don't have any severe effects yet and haven't for the five years since I was diagnosed. However, I get these ridiculous waves of fatigue -- so much so that I have to lie down and rest or my brain just doesn't work. They come on with no particular rhyme or reason and sometimes I'll remain in fatigue state for two or three days, unable to do much more than make a cup of tea. Usually, I am fine if I go down for a nap immediately for 30 minutes or so, but if I don't go down to rest immediately, I will not be able to power through it. I may then be out for a whole day or more.
So shout-out to anyone else who's invisibly disabled. It's so frustrating sometimes, explaining why you can't work a regular job, or having people expect too much of you (even my mother forgets I'm unwell and asks me to carry too much or be available even if I'm not doing well that day). The person who has the most empathy for me is my sister, who has disabilities related to MS and is wheelchair-reliant full time now. Almost everyone else forgets I'm not well from time to time. And I try to enjoy my 'up' time as much as possible now, knowing it's a finite resource.
posted by alltomorrowsparties at 12:35 AM on September 2, 2019 [16 favorites]
But because one invisible disability is not enough, now I have a rare form of cancer (myelofibrosis) that interfers with my bone marrow and red blood cell production. I'm pretty lucky. I don't have any severe effects yet and haven't for the five years since I was diagnosed. However, I get these ridiculous waves of fatigue -- so much so that I have to lie down and rest or my brain just doesn't work. They come on with no particular rhyme or reason and sometimes I'll remain in fatigue state for two or three days, unable to do much more than make a cup of tea. Usually, I am fine if I go down for a nap immediately for 30 minutes or so, but if I don't go down to rest immediately, I will not be able to power through it. I may then be out for a whole day or more.
So shout-out to anyone else who's invisibly disabled. It's so frustrating sometimes, explaining why you can't work a regular job, or having people expect too much of you (even my mother forgets I'm unwell and asks me to carry too much or be available even if I'm not doing well that day). The person who has the most empathy for me is my sister, who has disabilities related to MS and is wheelchair-reliant full time now. Almost everyone else forgets I'm not well from time to time. And I try to enjoy my 'up' time as much as possible now, knowing it's a finite resource.
posted by alltomorrowsparties at 12:35 AM on September 2, 2019 [16 favorites]
Autism as I experience it is a social disability. It is life limiting for social reasons. The way I phrase it a lot is that I make the same mistakes as neurotypical folks but I get forgiven for them a hell of a lot less. Also people infantilise me. A recent example is someone I shared a confidence with who decided to disclose that confidence, because that someone thought they would no better than me. Another example is when I told a man who had trashed my reputation to clean up his fucking misogynist mess he told me to act like an adult. More prosaically, I don't get invited to parties, for example, and a lot of in group stuff happens there. If and when I get too disabled to work one day, I've got some stark, stark decisions to make, because so much of social support is just that, social. My entire, whole body, profound commitment to being and doing good comes from the fact that I thought this would get me social connection when I was younger. Now I'm just good because it's the right thing to do. If I didn't have my socialist analysis of the world I would be dead from despair and pain long, long ago. I was burned recently by the above-mentioned misogynist and I nearly died, and I am scarred even more now, over so many thick layers of scars. I'm coming up with new rules for me to live in the world - if something makes my heart bloom, if I really want that thing, I know now to eschew it, to run away. Only painstaking and constant control and masking might keep my head barely above water enough, socially speaking, to survive. I'm waiting for NHS waiting lists to dispense some therapy, for sure. But my life is like walking in a great barn full of invisible garden rakes that fly up to hit me in the face, or like being constantly but unpredictably punched. I don't want to condition myself to accept the punches. I want the punching to stop.
We need structures and norms and things in workplaces and social settings to sort of stop people from pushing the awkward person out to the edge. We need to accept that the veneer of happiness neoliberal capitalism insists we all wear is not the only way to inhabit the world. I personally believe that socialism would make the world safe enough that we can all be comfortable with awkwardness or otherness as a default. But until then we need to keep working at it. If I give up, that doesn't mean I think everyone else should give up too. It just means that everything is too painful and I need an out.
posted by Mistress at 2:49 AM on September 2, 2019 [10 favorites]
We need structures and norms and things in workplaces and social settings to sort of stop people from pushing the awkward person out to the edge. We need to accept that the veneer of happiness neoliberal capitalism insists we all wear is not the only way to inhabit the world. I personally believe that socialism would make the world safe enough that we can all be comfortable with awkwardness or otherness as a default. But until then we need to keep working at it. If I give up, that doesn't mean I think everyone else should give up too. It just means that everything is too painful and I need an out.
posted by Mistress at 2:49 AM on September 2, 2019 [10 favorites]
All this to say, people like kanata, I see you. You have the profoundest empathy and solidarity from me. I'm happy to listen and to give practical help when possible.
Thank you very much to everyone who built and is contributing to this thread.
posted by Mistress at 2:53 AM on September 2, 2019 [8 favorites]
Thank you very much to everyone who built and is contributing to this thread.
posted by Mistress at 2:53 AM on September 2, 2019 [8 favorites]
Like for example this morning Iāve had to strategise a project thusly
Find a nonstigmatising excuse for a friendly colleague to bring forward my idea
Find a nonstigmatising excuse for that colleague to bring forward the idea in a different venue to the Facebook chat that a third party well meaningly started
(For those looking for similar excuses - āI often donāt get notifications for group chatsā works to duck me out of them but people still start āem)
If I were to bring forward the idea in the chat, myself, the two decision makers literally will not acknowledge that I have spoken. I have tested this many times. This is my life. This is the kind of shit I have to deal with every day.
posted by Mistress at 6:22 AM on September 2, 2019 [6 favorites]
Find a nonstigmatising excuse for a friendly colleague to bring forward my idea
Find a nonstigmatising excuse for that colleague to bring forward the idea in a different venue to the Facebook chat that a third party well meaningly started
(For those looking for similar excuses - āI often donāt get notifications for group chatsā works to duck me out of them but people still start āem)
If I were to bring forward the idea in the chat, myself, the two decision makers literally will not acknowledge that I have spoken. I have tested this many times. This is my life. This is the kind of shit I have to deal with every day.
posted by Mistress at 6:22 AM on September 2, 2019 [6 favorites]
I discovered at 40 that I have significantly poor hearing, probably from birth. Had hearing aids, 1 is lost, 1 is borked. In January, my state will require health insurance to cover hearing aids, this is exciting as I was ready to go to the Costco 100 miles away and spend upwards of 2,500, and waiting another 6 months is do-able, as I have been without mine for 6 years. Part of that time was wasted waiting for a pair from a deceased family member that was heisted by a sibling who is apparently more of a dick than I realized.
I have ADD and chronic depression. I identify as she/her, since birth. In addition to challenges, I have privilege. I grew up upper middle class, albeit with a Mom with bipolar disorder and alcoholism. But I grew up with books and education, and that's a lot. I was able to borrow from family to start a small business.
This thread has good timing for me; a friend recently gave me a hard time about my lack of hearing aids, and not for the 1st time indicated that my lack of hearing is a big inconvenience for them. I responded that no matter how inconvenient it is for them, it's much worse for me. I mentioned that I will be able to get a new set in January, they recommended a GoFundMe that all my friends would fund, because, presumably, having a hearing impaired friend is pretty awful. I was really pissed and still am. It's a bigger situation, but it comes down to accommodation.
Accommodating different needs is non-trivial, but not always terribly difficult. You have to build it in to your thinking. You have to pay attention. How hard is it really to look at me when you talk, not talk to my back, raise the volume of your voice a little? Many people are incapable of learning these things. Studies have linked untreated hearing loss in adults to Depression, Fatigue, Social withdrawal and Impaired memory (dementia). It's a risk factor for Anxiety, Panic disorders, Social phobias, Difficulty concentrating, especially when communicating with others. But, sure, raising your volume is hard, I guess.
I have friends who are introverted, and I try to make sure I don't overwhelm them with talk. Some people don't eat gluten, salt, meat, nuts, etc., and I don't care if they are celiac or obsessive, I make something they can eat. At least half my friends don't drive at night, If you ask for a reasonable accommodation, you don't have to justify it.
On MeFi, I'm not partially deaf. No one has to see how many tabs/browser windows I have open because shiny thing. You can't tell that I have the news on the tv pretty loud or that I'm still in my jammies because it's cold and crappy out.
posted by theora55 at 1:37 PM on September 2, 2019 [15 favorites]
I have ADD and chronic depression. I identify as she/her, since birth. In addition to challenges, I have privilege. I grew up upper middle class, albeit with a Mom with bipolar disorder and alcoholism. But I grew up with books and education, and that's a lot. I was able to borrow from family to start a small business.
This thread has good timing for me; a friend recently gave me a hard time about my lack of hearing aids, and not for the 1st time indicated that my lack of hearing is a big inconvenience for them. I responded that no matter how inconvenient it is for them, it's much worse for me. I mentioned that I will be able to get a new set in January, they recommended a GoFundMe that all my friends would fund, because, presumably, having a hearing impaired friend is pretty awful. I was really pissed and still am. It's a bigger situation, but it comes down to accommodation.
Accommodating different needs is non-trivial, but not always terribly difficult. You have to build it in to your thinking. You have to pay attention. How hard is it really to look at me when you talk, not talk to my back, raise the volume of your voice a little? Many people are incapable of learning these things. Studies have linked untreated hearing loss in adults to Depression, Fatigue, Social withdrawal and Impaired memory (dementia). It's a risk factor for Anxiety, Panic disorders, Social phobias, Difficulty concentrating, especially when communicating with others. But, sure, raising your volume is hard, I guess.
I have friends who are introverted, and I try to make sure I don't overwhelm them with talk. Some people don't eat gluten, salt, meat, nuts, etc., and I don't care if they are celiac or obsessive, I make something they can eat. At least half my friends don't drive at night, If you ask for a reasonable accommodation, you don't have to justify it.
On MeFi, I'm not partially deaf. No one has to see how many tabs/browser windows I have open because shiny thing. You can't tell that I have the news on the tv pretty loud or that I'm still in my jammies because it's cold and crappy out.
posted by theora55 at 1:37 PM on September 2, 2019 [15 favorites]
Oh my fucking god, someone is giving you shit for not having replaced your hearing aids yet? Do they know how much those fuckers cost? (n.b.: mid-to-high four figures are common.) I'm delighted that your state is going to make insurance cover them; people have no idea how many technological aids are just straight-up not covered by insurance because they're expensive.
No, really, that's why insurance doesn't bother. People assume it must, but insurance doesn't have to cover anything it damn well doesn't want to unless it's mandated to, and there's an awful lot of holes in the system. It's one of the worst aspects of having a profit-driven medical insurance system.
For those of you who usually wear glasses, n.b.: imagine if your glasses cost $2,000 per fucking eye. Now imagine you don't have that cash lying around, because you're fucking broke; for me personally, $2,000 is about a month's salary. Imagine going around without your glasses all the fucking time and trying to keep up with everything around you. Now imagine that everyone around you is communicating in text all the fucking time, so you wind up squinting, but the text keeps changing on you and people get mad when you ask to stop and have a look again.
It is maddening. And then you get blamed for it, because you're supposed be able to pull enough money to pay for a pretty nice used car out of your ass on a regular basis, or the ability to swallow your shame and literally beg your friends to help you pay for a medical device that should be covered. What happens if you can't raise that much money? What do you get to believe about yourself then?
Ugh, theora55, I'm really angry on your behalf. And hoping that the next six months pass as quickly and easily as possible, too.
posted by sciatrix at 2:06 PM on September 2, 2019 [16 favorites]
No, really, that's why insurance doesn't bother. People assume it must, but insurance doesn't have to cover anything it damn well doesn't want to unless it's mandated to, and there's an awful lot of holes in the system. It's one of the worst aspects of having a profit-driven medical insurance system.
For those of you who usually wear glasses, n.b.: imagine if your glasses cost $2,000 per fucking eye. Now imagine you don't have that cash lying around, because you're fucking broke; for me personally, $2,000 is about a month's salary. Imagine going around without your glasses all the fucking time and trying to keep up with everything around you. Now imagine that everyone around you is communicating in text all the fucking time, so you wind up squinting, but the text keeps changing on you and people get mad when you ask to stop and have a look again.
It is maddening. And then you get blamed for it, because you're supposed be able to pull enough money to pay for a pretty nice used car out of your ass on a regular basis, or the ability to swallow your shame and literally beg your friends to help you pay for a medical device that should be covered. What happens if you can't raise that much money? What do you get to believe about yourself then?
Ugh, theora55, I'm really angry on your behalf. And hoping that the next six months pass as quickly and easily as possible, too.
posted by sciatrix at 2:06 PM on September 2, 2019 [16 favorites]
Thanks, sciatrix. I was pissed enough to leave the event a bit early; I'm still pretty pissed. Thinking of writing an article about hearing and hearing loss and ableism.
posted by theora55 at 2:12 PM on September 2, 2019 [9 favorites]
posted by theora55 at 2:12 PM on September 2, 2019 [9 favorites]
"Most people and organizations right now think and act in terms of the medical model, so they prioritize "fixing" disabled individuals. But, in reaction to that, disability civil rights advocates use the social model. ...Neuroatypical means that a person's brain brain works differently than society expects. Neurodivergent uses the social model of disability to say: that's not a bad thing, and if this person is disabled, it's only because society doesn't accommodate them."
I want to gently push back on the medical model/social model dichotomy as it has been presented here. There's a sense that the medical model is the "bad" model and the social model is the "good" one, but disabilities don't always line up neatly with those divisions.
I've mentioned my experiences with bipolar disorder in a few places here before. I might not be alive if I hadn't started taking medication, and I certainly wouldn't have been able to hold down a job or maintain healthy relationships for long. It's a disability that I (mostly) keep in check with medication, but it's not one that in my case could have been improved by social accommodations other than time and resources to seek medical treatment. Mania and depression were (are) very bad for me in terms of my subjective experience of them. Even if I had all the money and time off I could want, I'd still have, well, the internal experiences that I've typed out and deleted several times because they threaten to take over the paragraph. The point is, the social model doesn't provide me with the resources to talk about my disability or what I need because a great deal of what makes my experience with bipolar disorder bad is that subjective experience of mania and depression. All this is complicated by a strong desire in the world at large to deny that mental illness exists at all or that pharmaceuticals are acceptable responses.
That's just me. Everyone is different. Everyone with bipolar disorder is different! Some people thrive on hypomania and experience it as a kind of superpower. All of their experiences are valid. And I cannot stress enough that the social model of disability has been perhaps the single most important advance for disability activism in my lifetime. I'm not knocking it or anyone who is validated by it. Nor am I exonerating the medical model for the suffering caused by treating people as "broken." But if the social model of disability doesn't have the resources to talk about my disability, it's only a partial model of disability. The experiences of disability are too varied for the choice of model to be either/or, good/bad.
posted by This time is different. at 2:36 PM on September 2, 2019 [18 favorites]
I want to gently push back on the medical model/social model dichotomy as it has been presented here. There's a sense that the medical model is the "bad" model and the social model is the "good" one, but disabilities don't always line up neatly with those divisions.
I've mentioned my experiences with bipolar disorder in a few places here before. I might not be alive if I hadn't started taking medication, and I certainly wouldn't have been able to hold down a job or maintain healthy relationships for long. It's a disability that I (mostly) keep in check with medication, but it's not one that in my case could have been improved by social accommodations other than time and resources to seek medical treatment. Mania and depression were (are) very bad for me in terms of my subjective experience of them. Even if I had all the money and time off I could want, I'd still have, well, the internal experiences that I've typed out and deleted several times because they threaten to take over the paragraph. The point is, the social model doesn't provide me with the resources to talk about my disability or what I need because a great deal of what makes my experience with bipolar disorder bad is that subjective experience of mania and depression. All this is complicated by a strong desire in the world at large to deny that mental illness exists at all or that pharmaceuticals are acceptable responses.
That's just me. Everyone is different. Everyone with bipolar disorder is different! Some people thrive on hypomania and experience it as a kind of superpower. All of their experiences are valid. And I cannot stress enough that the social model of disability has been perhaps the single most important advance for disability activism in my lifetime. I'm not knocking it or anyone who is validated by it. Nor am I exonerating the medical model for the suffering caused by treating people as "broken." But if the social model of disability doesn't have the resources to talk about my disability, it's only a partial model of disability. The experiences of disability are too varied for the choice of model to be either/or, good/bad.
posted by This time is different. at 2:36 PM on September 2, 2019 [18 favorites]
Ah, yes--I'd been trying to figure out how to point out that the medical model is sometimes the best approach for some disabilities and some people, and why the social model isn't the only model that has value when it comes to advocating for disabled people.
Part of this is just that the medical model is so primal that most people don't think about the social model at all when they think about what disability is and what makes access difficult. But it is absolutely possible to err so far into the social model that the medical model becomes a necessary corrective, too.
posted by sciatrix at 2:51 PM on September 2, 2019 [4 favorites]
Part of this is just that the medical model is so primal that most people don't think about the social model at all when they think about what disability is and what makes access difficult. But it is absolutely possible to err so far into the social model that the medical model becomes a necessary corrective, too.
posted by sciatrix at 2:51 PM on September 2, 2019 [4 favorites]
if the social model of disability doesn't have the resources to talk about my disability, it's only a partial model of disability.
Absolutely - that's a good correction. Generally, I hear from researchers about a biopsychosocial model, connecting biology, psychology and social factors. (Sorry, that's not the best link, but all the rest were PDFs and/or paywalled). I have a similar mood disorder (agitated depression, like bipolar except my "manic" is panicked), and medical management is essential for my functioning. Treatment and medical management is super important.
But, given that even with the most perfect treatment, many disabled people will still face barriers - and the solutions to many of those barriers are social (e.g. curb cuts) rather than medical.
posted by jb at 3:18 PM on September 2, 2019 [5 favorites]
Absolutely - that's a good correction. Generally, I hear from researchers about a biopsychosocial model, connecting biology, psychology and social factors. (Sorry, that's not the best link, but all the rest were PDFs and/or paywalled). I have a similar mood disorder (agitated depression, like bipolar except my "manic" is panicked), and medical management is essential for my functioning. Treatment and medical management is super important.
But, given that even with the most perfect treatment, many disabled people will still face barriers - and the solutions to many of those barriers are social (e.g. curb cuts) rather than medical.
posted by jb at 3:18 PM on September 2, 2019 [5 favorites]
Or, in my case, medical management combined with a certain flexibility in work schedules to have treatment.
For my husband, who has severe learning disabilities, he has used assistive devices for years - he had a PDA in high school at a time when only CEOs had these new fangled "digital assistants".
posted by jb at 3:20 PM on September 2, 2019 [4 favorites]
For my husband, who has severe learning disabilities, he has used assistive devices for years - he had a PDA in high school at a time when only CEOs had these new fangled "digital assistants".
posted by jb at 3:20 PM on September 2, 2019 [4 favorites]
I've got a condition that causes chronic pain (psoriatic arthritis) and is likely to end up causing some pretty significant mobility impairments. I'm extremely fortunate that this is literally a job I can do from bed (or from a hot bath) because when it's bad, I need to. I'm less fortunate in that both pain management and the most effective short-term inflammation reducer are both things that are very, very difficult to work while under the influence of. (Some people get a ton of energy and euphoria from prednisone; I just start wanting someone to bring a bar fight to my bedside. And... hi, guys, you're right there ready and willing! So yeah, I generally warn the team and start double-checking my decision-making if I have to take it.)
And I'm not 100% sure I could do a non-remote job again. I'm nearly certain I couldn't take a full-time job that involved physical activity again. It's been a pretty good year, pain-wise - I seem to have hit on a diet that my body seems to like. But I have no idea how long this reprieve will last. I struggle with the concept of disability as it applies to myself, because when things are pretty good, I'm very nearly fine! I just need to not do high-impact exercise (i.e. half of the activities that I love) or long-distance cardio (i.e. half of the remainder.) Or eat any of the things that are inflammation triggers. Or the wrong proportion of things that are fine in isolation but seem to have a cumulative effect. Or travel without a couple of backup medications. Or or or.
I've talked about this before and when I reread my old comments, I realize that I end up sounding like a lot of the work of dealing with this is behind me and everything is fine now. It is and it isn't, you know? It's sometimes just as emotionally hard to deal with the reprieves than the flares, because I can't totally let myself enjoy them. And I sure as shit don't enjoy the flares.
posted by restless_nomad (staff) at 4:19 PM on September 2, 2019 [16 favorites]
And I'm not 100% sure I could do a non-remote job again. I'm nearly certain I couldn't take a full-time job that involved physical activity again. It's been a pretty good year, pain-wise - I seem to have hit on a diet that my body seems to like. But I have no idea how long this reprieve will last. I struggle with the concept of disability as it applies to myself, because when things are pretty good, I'm very nearly fine! I just need to not do high-impact exercise (i.e. half of the activities that I love) or long-distance cardio (i.e. half of the remainder.) Or eat any of the things that are inflammation triggers. Or the wrong proportion of things that are fine in isolation but seem to have a cumulative effect. Or travel without a couple of backup medications. Or or or.
I've talked about this before and when I reread my old comments, I realize that I end up sounding like a lot of the work of dealing with this is behind me and everything is fine now. It is and it isn't, you know? It's sometimes just as emotionally hard to deal with the reprieves than the flares, because I can't totally let myself enjoy them. And I sure as shit don't enjoy the flares.
posted by restless_nomad (staff) at 4:19 PM on September 2, 2019 [16 favorites]
I never associated myself with disability until I was at my university and got official disability status. It was a real struggle. Well, no, getting disability status was easy: I just had to get my doctor to fill out a form and then turn that in to the disability office. But accepting that I actually deserved disability status was another thing, because it felt like only people with real problems needed such a thing. Never mind how much course of my life had been dominated by very real challenges; to the extent that I acknowledged the challenges I faced, I saw them as they were usually described to me, as laziness, or as things I could overcome with enough pluck and determination. Now I was suddenly being told that I could get special treatment, and it felt unearned, like I was gaming the system to avoid personal growth. I told this to one of my professors (in the process of notifying her of my new accommodations) and she said "look, a lot of activists fought really hard to make these accommodations possible at this university." It didn't settle the question for me, but it did at least make me consider that my negative self-image might also be an implicit judgment on other people in the same boat as me.
People in the wider world seem to prefer messages of disability that center around overcoming. You get the stories about heroes running marathons, the familiar refrain that "she refused to give in" or "all he had to do was set his mind on it." People want stories of disability that inspire them. They want disability to serve as a metaphor for their own moments of tiredness or frustration, someone to say "hang in there, baby!" when they're stressed out about making a work deadline. It's a lot harder to accept that a person may simply have to make compromises and accept outcomes that they aren't happy with. That's certainly been a challenge with me, especially with the invisible challenges that I have.
It also feels like if you aren't an inspiration, you're supposed to be ashamed of yourself. In my case, for mental illness, I'll come across people angrily saying "there's no excuse not to seek treatment!" But it's such a challenge, and I wish more people could hear that without accusing someone like me of making excuses. It's a challenge in the best of circumstances, but I can't tell you how much of a nightmare it's been to get the care I need under Medicare. Weeks and months of waiting. Winding up with a provider who treats you like a drug addict (I'm seeing someone new, though, and fingers crossed it'll be a better experience).
I'm sort of losing my train of thought here -- the reason I didn't comment in this thread sooner was because I seem to have just gone through a mild overdose of something (I was told I could combine two medications, and spoiler! no I couldn't). So I just spent the last 20 out of 24 hours sleeping, and when I was awake I was mildly stumbling with a splitting headache. Now I think I "only" have a migraine. But I've actually spent the past week and a half sleeping almost all day every day, probably another bad reaction to a medication that I've since stopped -- and it's possible that the last 24 hours were related to that, as well.
I'm really only mentioning that to complain, because holy shit this sucks. It sucks because I keep wanting to go for bike rides, and I just physically have not been able to. And there is that line -- well, maybe I need to be the inspirational person, say "this won't bring me down" and just get out there on the bike. But I've just been weak and tired, and I just keep falling asleep.
I don't want to end on a negative note, though. It really can be hard to draw the line between acknowledging a challenge and losing faith because of it. I don't want to discourage anyone, I just want to talk openly, and for other people to be able to talk openly, about how challenges are real, because it seems so often like that's the one thing you can't say. It's like you can be anything but frustrated or discouraged or angry.
This turned into a long essay of a comment, but the last thing I'll say for now is that I've actually felt a lot better about this site knowing other people have gone through some of the same stuff I have. I've talked a lot in the past about feeling alienated, but the last thread on this felt oddly encouraging, and it's only because of this splitting headache that I can't put into words why.
posted by shapes that haunt the dusk at 12:11 AM on September 3, 2019 [12 favorites]
People in the wider world seem to prefer messages of disability that center around overcoming. You get the stories about heroes running marathons, the familiar refrain that "she refused to give in" or "all he had to do was set his mind on it." People want stories of disability that inspire them. They want disability to serve as a metaphor for their own moments of tiredness or frustration, someone to say "hang in there, baby!" when they're stressed out about making a work deadline. It's a lot harder to accept that a person may simply have to make compromises and accept outcomes that they aren't happy with. That's certainly been a challenge with me, especially with the invisible challenges that I have.
It also feels like if you aren't an inspiration, you're supposed to be ashamed of yourself. In my case, for mental illness, I'll come across people angrily saying "there's no excuse not to seek treatment!" But it's such a challenge, and I wish more people could hear that without accusing someone like me of making excuses. It's a challenge in the best of circumstances, but I can't tell you how much of a nightmare it's been to get the care I need under Medicare. Weeks and months of waiting. Winding up with a provider who treats you like a drug addict (I'm seeing someone new, though, and fingers crossed it'll be a better experience).
I'm sort of losing my train of thought here -- the reason I didn't comment in this thread sooner was because I seem to have just gone through a mild overdose of something (I was told I could combine two medications, and spoiler! no I couldn't). So I just spent the last 20 out of 24 hours sleeping, and when I was awake I was mildly stumbling with a splitting headache. Now I think I "only" have a migraine. But I've actually spent the past week and a half sleeping almost all day every day, probably another bad reaction to a medication that I've since stopped -- and it's possible that the last 24 hours were related to that, as well.
I'm really only mentioning that to complain, because holy shit this sucks. It sucks because I keep wanting to go for bike rides, and I just physically have not been able to. And there is that line -- well, maybe I need to be the inspirational person, say "this won't bring me down" and just get out there on the bike. But I've just been weak and tired, and I just keep falling asleep.
I don't want to end on a negative note, though. It really can be hard to draw the line between acknowledging a challenge and losing faith because of it. I don't want to discourage anyone, I just want to talk openly, and for other people to be able to talk openly, about how challenges are real, because it seems so often like that's the one thing you can't say. It's like you can be anything but frustrated or discouraged or angry.
This turned into a long essay of a comment, but the last thing I'll say for now is that I've actually felt a lot better about this site knowing other people have gone through some of the same stuff I have. I've talked a lot in the past about feeling alienated, but the last thread on this felt oddly encouraging, and it's only because of this splitting headache that I can't put into words why.
posted by shapes that haunt the dusk at 12:11 AM on September 3, 2019 [12 favorites]
Iāve been struggling with what to say since the previous thread, Iāve always had problems expanding on topics and this has worsened with the concentration and memory issues caused by fibromyalgia. I consider myself as disabled, and as some of you may know Iām English living in France. You have to be resident in the UK to get a blue badge that makes access to disabled accommodations easier, and in France there is so much stigma around official recognition of disability, such as trouble finding work, getting a mortgage, and potentially approval for nationality which is my biggest concern. My medical team is split 50/50 on whether it is a good idea for me. This stigmas also translates into things like, when I travel with assistance on the Eurostar, being told when they canāt see anything wrong with a person, they assume they are lying. I have made so many complaints about the French Eurostar team. I already travel in a wheelchair when I fly, and I had to do that on the Eurostar for my return to Paris last weekend, and a friend who uses a wheelchair for all travel says the French Eurostar team are really helpful as they can see her disability, so maybe this will improve as my health declines, which is a really depressing prospect. I also struggle with the fact that Paris is my home, but it is very inaccessible so I will likely move near home if needed, goodbye power of choice of where to live.
posted by ellieBOA at 2:41 AM on September 3, 2019 [8 favorites]
posted by ellieBOA at 2:41 AM on September 3, 2019 [8 favorites]
(Thanks for this thread)
I'm another one of those people who's in that weird liminal space. I've got more than half-a-dozen chronic health issues that take time, money, and planning to manage, but most of the time my life is set up so that that work doesn't really show. Sometimes even to me, until I sit down and add it up. And all the things are invisible, so there's no obvious sign. (Though I've been told repeatedly that when I have a migraine, it shows really clearly on my face...)
I've twice lost jobs because of health issues (and of course, the point at which you need to wrangle lots of potential legal details is the point at which you are least able to do it...) I got tremendously lucky. My current job is not only a physical set up that avoids a lot of health trigger issues (I can control the temp in my office, the light levels, etc. if I need.
Now I work somewhere that deals with specific kinds of impairments. They're not the ones I have, but the fact that a bunch of staff here have them means that a lot of the time, I get really useful info that helps me. (For example, we get data about all-campus events in advance, which means I can figure out how I need to juggle my plans to avoid too much exertion, get food at the right times and proportions, etc.)
But I also struggle with being single (so there's no one to pick up slack in household stuff if I don't do it), and the fact that about 10% of my income goes to health related costs above and beyond health insurance itself (making it harder to save or plan for the future). And I spend a lot of low-key but constant time self-monitoring, so I can catch problems before they get big.
posted by jenettsilver at 6:59 AM on September 3, 2019 [10 favorites]
I'm another one of those people who's in that weird liminal space. I've got more than half-a-dozen chronic health issues that take time, money, and planning to manage, but most of the time my life is set up so that that work doesn't really show. Sometimes even to me, until I sit down and add it up. And all the things are invisible, so there's no obvious sign. (Though I've been told repeatedly that when I have a migraine, it shows really clearly on my face...)
I've twice lost jobs because of health issues (and of course, the point at which you need to wrangle lots of potential legal details is the point at which you are least able to do it...) I got tremendously lucky. My current job is not only a physical set up that avoids a lot of health trigger issues (I can control the temp in my office, the light levels, etc. if I need.
Now I work somewhere that deals with specific kinds of impairments. They're not the ones I have, but the fact that a bunch of staff here have them means that a lot of the time, I get really useful info that helps me. (For example, we get data about all-campus events in advance, which means I can figure out how I need to juggle my plans to avoid too much exertion, get food at the right times and proportions, etc.)
But I also struggle with being single (so there's no one to pick up slack in household stuff if I don't do it), and the fact that about 10% of my income goes to health related costs above and beyond health insurance itself (making it harder to save or plan for the future). And I spend a lot of low-key but constant time self-monitoring, so I can catch problems before they get big.
posted by jenettsilver at 6:59 AM on September 3, 2019 [10 favorites]
The costs really are phenomenal. I have kidney failure and I'm fortunate and grateful to have Medicare and SSDI, which is typically offered for patients like me with end stage renal. But even with Medicare, my single biggest monthly cost is medical, with premiums (Medicare, Part B gap, Part D pharmacy) and pharmacy copays costing hundreds per month, somewhere between 1/4 and 1/3 of what I receive monthly through SSDI. I pay medical before I pay anyone else.
And it's even more expensive for patients fortunate enough to get a transplant, which doesn't cure kidney failure but provides a path out of disability (a somewhat normal life and the potential for gainful employment, if you can stay out of the hospital), at least for as long as the transplanted kidney continues to work.
I was just at my annual medical check-in for the transplant waitlist, and a new component of that meeting was working with someone in finance to confirm I had sufficient insurance for the surgery plus the personal financial resources to pay over $5K in projected pharmacy costs annually, in addition to regular Medicare and gap premiums, starting immediately after transplant, before you're healed up enough to start work again. Medicare and gap almost fully pay for the surgery itself. But that leaves pharmacy costs. So that means the patient needs to have at least $5K in savings as a disabled person (or access to $5K somehow) to financially qualify for transplant surgery, even using the Medicare benefit.
And I'm not sure how people do that in general. And in fact, lots of people can't. Many of my fellow dialysis patients qualify for assistance through a national fund that pays their monthly premiums, but few know that that support stops immediately after the transplant and before they're working again. For these patients, where would that money for premiums and pharmacy costs come from?
Even with gainful employment after recovery, most people don't have $500 a month of wiggle room for meds in their annual budget and the ability to cover that for the rest of their lives. And people really do lose their transplants because of this. Sometimes the post-transplant patient, who often has few assets and an uneven work history due to years of disability, gets the transplant but within months runs out of money to pay for premiums, and so the transplant rejects due to lack of medical care and pharmacy access. Or the patient manages to hold on to Medicare for the allotted three years after transplant, but after 36 months has no access to health care and so loses the kidney, sending them back to dialysis and disability, and all the worse for wear.
To be clear, the financial specialist I spoke with presented all this in the kindest and most reasonable way possible. And while I didn't actually have to produce bank statements or personally haul in some millionaire uncle to serve as as guarantor, I was asked multiple times in multiple ways about my confidence in my financial assets and my motivation to resume employment ("Yes, of course!"), and my responses were noted accordingly.
This is a huge financial accessibility issue for those of us looking to transplants as a way out of disability, and in fact as a life-saving option.
posted by mochapickle at 8:32 AM on September 3, 2019 [24 favorites]
And it's even more expensive for patients fortunate enough to get a transplant, which doesn't cure kidney failure but provides a path out of disability (a somewhat normal life and the potential for gainful employment, if you can stay out of the hospital), at least for as long as the transplanted kidney continues to work.
I was just at my annual medical check-in for the transplant waitlist, and a new component of that meeting was working with someone in finance to confirm I had sufficient insurance for the surgery plus the personal financial resources to pay over $5K in projected pharmacy costs annually, in addition to regular Medicare and gap premiums, starting immediately after transplant, before you're healed up enough to start work again. Medicare and gap almost fully pay for the surgery itself. But that leaves pharmacy costs. So that means the patient needs to have at least $5K in savings as a disabled person (or access to $5K somehow) to financially qualify for transplant surgery, even using the Medicare benefit.
And I'm not sure how people do that in general. And in fact, lots of people can't. Many of my fellow dialysis patients qualify for assistance through a national fund that pays their monthly premiums, but few know that that support stops immediately after the transplant and before they're working again. For these patients, where would that money for premiums and pharmacy costs come from?
Even with gainful employment after recovery, most people don't have $500 a month of wiggle room for meds in their annual budget and the ability to cover that for the rest of their lives. And people really do lose their transplants because of this. Sometimes the post-transplant patient, who often has few assets and an uneven work history due to years of disability, gets the transplant but within months runs out of money to pay for premiums, and so the transplant rejects due to lack of medical care and pharmacy access. Or the patient manages to hold on to Medicare for the allotted three years after transplant, but after 36 months has no access to health care and so loses the kidney, sending them back to dialysis and disability, and all the worse for wear.
To be clear, the financial specialist I spoke with presented all this in the kindest and most reasonable way possible. And while I didn't actually have to produce bank statements or personally haul in some millionaire uncle to serve as as guarantor, I was asked multiple times in multiple ways about my confidence in my financial assets and my motivation to resume employment ("Yes, of course!"), and my responses were noted accordingly.
This is a huge financial accessibility issue for those of us looking to transplants as a way out of disability, and in fact as a life-saving option.
posted by mochapickle at 8:32 AM on September 3, 2019 [24 favorites]
Yeah, I was surprised, too! And that's WITH the Medicare benefit -- so that $5K pharmacy cost is in addition to your various Medicare and gap premiums that cost hundreds per month, and then there's the big handwavey unknown when it comes to private insurance later on after you've exhausted your post-transplant 36 months on Medicare.
I'm happily unpartnered but that means I always need to fend for myself in making sure I'm sufficiently insured. And I thought I'd planned ahead, but now I'll need to rethink. After a transplant, I'll be immunosuppressed and I'd thought it might be best to return to freelancing so I can work from home and limit my exposure risk to illness (a common cold caught from a careless coworker can lead to pneumonia, which can lead to losing your new kidney). I'd thought that like most self-employed people I'd possibly find something on what's left of my state's remaining ACA exchange. But premiums are rising and coverage is falling, so my best bet will likely be finding work at a huge company with some stability in their benefits... in a huge office where people come in sick all the time...
Anyway, coverage and finances are increasingly an issue, and the transplant center is doing what it can to help people brace themselves for it, as it's not widely known.
posted by mochapickle at 10:29 AM on September 3, 2019 [8 favorites]
I'm happily unpartnered but that means I always need to fend for myself in making sure I'm sufficiently insured. And I thought I'd planned ahead, but now I'll need to rethink. After a transplant, I'll be immunosuppressed and I'd thought it might be best to return to freelancing so I can work from home and limit my exposure risk to illness (a common cold caught from a careless coworker can lead to pneumonia, which can lead to losing your new kidney). I'd thought that like most self-employed people I'd possibly find something on what's left of my state's remaining ACA exchange. But premiums are rising and coverage is falling, so my best bet will likely be finding work at a huge company with some stability in their benefits... in a huge office where people come in sick all the time...
Anyway, coverage and finances are increasingly an issue, and the transplant center is doing what it can to help people brace themselves for it, as it's not widely known.
posted by mochapickle at 10:29 AM on September 3, 2019 [8 favorites]
I struggle with the concept of disability as it applies to myself, because when things are pretty good, I'm very nearly fine! I just need to not do high-impact exercise (i.e. half of the activities that I love) or long-distance cardio (i.e. half of the remainder.) Or eat any of the things that are inflammation triggers. Or the wrong proportion of things that are fine in isolation but seem to have a cumulative effect. Or travel without a couple of backup medications. Or or or.
restless_nomad: is the concept of episodic disability useful for you? There has been a push in Canada to have more recognition of episodic health conditions and disabilities like inflammatory arthritis, HIV, multiple sclerosis, etc. There was a report recently from a parliamentary committee on this issue.
posted by jb at 1:19 PM on September 3, 2019 [9 favorites]
restless_nomad: is the concept of episodic disability useful for you? There has been a push in Canada to have more recognition of episodic health conditions and disabilities like inflammatory arthritis, HIV, multiple sclerosis, etc. There was a report recently from a parliamentary committee on this issue.
posted by jb at 1:19 PM on September 3, 2019 [9 favorites]
My SSDI appeal was denied. I'm now in the process of gathering material to start a new application. Of the two practitioners who encouraged me the most to apply in the first place, one is no longer practicing times the other isn't a provider on my current insurance. I can't get in to see any of my other doctors until November to make sure all my records are up to date. And I'm second-guessing myself all over the place. My teeth are falling apart and the only Medicaid dentist in the county is booking out to January. Virtual moral support highly appreciated.
posted by The Underpants Monster at 1:53 PM on September 3, 2019 [16 favorites]
posted by The Underpants Monster at 1:53 PM on September 3, 2019 [16 favorites]
The Underpants Monster: I'm really sorry to hear that - please accept whatever virtual moral support I can provide. Teeth are so important (and under-recognized as such: in Ontario, our otherwise excellent single payer health insurance doesn't cover dental care, and even disability support covers emergency dental care only).
I hope you are able to get the care you need asap.
posted by jb at 2:14 PM on September 3, 2019 [7 favorites]
I hope you are able to get the care you need asap.
posted by jb at 2:14 PM on September 3, 2019 [7 favorites]
And I'm second-guessing myself all over the place.
Don't be. Rejection of an initial application, if you don't have a fast-track disease, is commonplace.
There are a couple of Mefites who plainly work in this field who might come along to advise you better, but, just in case you don't already know, there are many lawyers who handle these applications on contingency. The amount they can receive is capped by statute. You're almost always better off with the help.
(Sorry, despite a good helping of chronic health issues, I don't think of myself as disabled, but this is pretty important information to have if you don't, so I hope it's OK I posted.)
posted by praemunire at 5:13 PM on September 3, 2019 [8 favorites]
Don't be. Rejection of an initial application, if you don't have a fast-track disease, is commonplace.
There are a couple of Mefites who plainly work in this field who might come along to advise you better, but, just in case you don't already know, there are many lawyers who handle these applications on contingency. The amount they can receive is capped by statute. You're almost always better off with the help.
(Sorry, despite a good helping of chronic health issues, I don't think of myself as disabled, but this is pretty important information to have if you don't, so I hope it's OK I posted.)
posted by praemunire at 5:13 PM on September 3, 2019 [8 favorites]
So today I finally got up the guts to ask a coworker not to use the r-word around me, quickly doing my best to summarize (none too eloquently) that itās a raw nerve for someone with āan executive function...thing.ā Because ālifelong severe combined-type ADHD, in a female body so no one believes in treating it until you really raise a fuss in your 30s,ā plus āmultiple varying-severity TBIs since age 18,ā is a boring-er story every time I tell it, and I never know, still, if people will believe the details, or will believe theyāre significant. Even now.
But I know the names I was called before I learned how to pass. I remember the shaming and blaming. They still happen sometimes when I slip out of character.
Coworker apologized. I know HR overheard the whole thing, not by design. And Iāll spend the rest of the evening feeling:
Time was, I used that word a lot myself. I thought maybe if I used it, it was some kind of proof that it wasnāt me.
posted by armeowda at 9:40 PM on September 3, 2019 [28 favorites]
But I know the names I was called before I learned how to pass. I remember the shaming and blaming. They still happen sometimes when I slip out of character.
Coworker apologized. I know HR overheard the whole thing, not by design. And Iāll spend the rest of the evening feeling:
- Guilty for defending a totally normal boundary, because my job growing up was to validate other people and to apologize for/hide my failure to be well-behaved like a good girl
- Nervous that Iāve maybe touched off something bigger in an office thatās grappling with a lot of this kind of stuff right now
- Stupid for āoutingā myself at work, which I do not normally do, and certainly not in these circumstances, and I didnāt owe it to anyone
- Brave, a little, kinda, maybe.
Time was, I used that word a lot myself. I thought maybe if I used it, it was some kind of proof that it wasnāt me.
posted by armeowda at 9:40 PM on September 3, 2019 [28 favorites]
Well done you!
posted by The Underpants Monster at 6:59 AM on September 4, 2019 [5 favorites]
posted by The Underpants Monster at 6:59 AM on September 4, 2019 [5 favorites]
As much as I've looked forward to this thread, I've really dreaded it too, not because of any Metafilter-related reason, it's just that thinking about how disability plays out in the real world is so stressful, I want to hide from it, particularly now.
I'm about to be in a situation where I might have to remind work about my disability (in my case, the diagnosis is panic disorder with agoraphobia, plays out in a wealth of other anxiety symptoms, and I was on SSI and SSDI disability for about a decade before finding a job I could work from home). My new boss has no idea. He knows my old boss took care of some of my responsibilities for me, but doesn't know why (or least I don't think he does).
The biggest accommodation I need on this job is not to be asked to leave the house. As long as I can just sit here, I can manage almost anything else. During a panic attack, I can log off and go calm down. If I'm too anxious to pick up the phone, there's voicemail I can handle later. Much of the job is handled through email, which is so much easier.
But I'm about to go on vacation, one that my spouse has been urging me on for a long time. And I'm sick with excitement and fear over it, because it is a lot of leaving the house, it involves all the kinds of stuff I'm really bad at, but since I'm not handling the details, it should be survivable. And with any other employee, if my boss asked what they were doing, I'm sure they'd just say "I'm going on a trip" and that would be that.
But for me, "going on a trip" raises questions: Why can you go on that trip, but not a work trip?
I'm so scared to talk about this to my boss. I'm so scared to admit that I have a disability. When I talked to my old boss about it years ago, I broke down in tears, like I was confessing some great crime.
How do you tell someone, this trip isn't like a work trip? That on a work trip, I don't get to have my spouse along handling all the complex social and technical arrangements? If I confess it, will I be endangering my job? What if he's not accommodating like my old boss? What if he's mean? What if he says, that's ridiculous, you hop a plane and go visit all our customers at once?
I feel like I can't breathe, I'm so worried about it. It's blocking any enjoyment I could feel over the trip, an enjoyment I really need to be cultivating right now, since it's the only thing that stands a chance of getting through my anxiety about airports and maybe forgetting to pack a toothbrush or all the millions of things that might go wrong. Work looms overhead.
posted by mittens at 9:24 AM on September 4, 2019 [17 favorites]
I'm about to be in a situation where I might have to remind work about my disability (in my case, the diagnosis is panic disorder with agoraphobia, plays out in a wealth of other anxiety symptoms, and I was on SSI and SSDI disability for about a decade before finding a job I could work from home). My new boss has no idea. He knows my old boss took care of some of my responsibilities for me, but doesn't know why (or least I don't think he does).
The biggest accommodation I need on this job is not to be asked to leave the house. As long as I can just sit here, I can manage almost anything else. During a panic attack, I can log off and go calm down. If I'm too anxious to pick up the phone, there's voicemail I can handle later. Much of the job is handled through email, which is so much easier.
But I'm about to go on vacation, one that my spouse has been urging me on for a long time. And I'm sick with excitement and fear over it, because it is a lot of leaving the house, it involves all the kinds of stuff I'm really bad at, but since I'm not handling the details, it should be survivable. And with any other employee, if my boss asked what they were doing, I'm sure they'd just say "I'm going on a trip" and that would be that.
But for me, "going on a trip" raises questions: Why can you go on that trip, but not a work trip?
I'm so scared to talk about this to my boss. I'm so scared to admit that I have a disability. When I talked to my old boss about it years ago, I broke down in tears, like I was confessing some great crime.
How do you tell someone, this trip isn't like a work trip? That on a work trip, I don't get to have my spouse along handling all the complex social and technical arrangements? If I confess it, will I be endangering my job? What if he's not accommodating like my old boss? What if he's mean? What if he says, that's ridiculous, you hop a plane and go visit all our customers at once?
I feel like I can't breathe, I'm so worried about it. It's blocking any enjoyment I could feel over the trip, an enjoyment I really need to be cultivating right now, since it's the only thing that stands a chance of getting through my anxiety about airports and maybe forgetting to pack a toothbrush or all the millions of things that might go wrong. Work looms overhead.
posted by mittens at 9:24 AM on September 4, 2019 [17 favorites]
Mittens, are you looking for advice ? Iāve got some and Iām happy to post it here or Memail you.
posted by Mistress at 1:32 PM on September 4, 2019 [2 favorites]
posted by Mistress at 1:32 PM on September 4, 2019 [2 favorites]
Mittens, I feel that the AskAManager reply might be that if your boss asks, the answer could be a vague "I have a medical condition that is difficult to handle without the assistance of my spouse," and leaving it at that.
posted by telophase at 1:33 PM on September 4, 2019 [12 favorites]
posted by telophase at 1:33 PM on September 4, 2019 [12 favorites]
(And if you're not looking for advice, I do apologize for presuming!)
posted by telophase at 1:34 PM on September 4, 2019 [3 favorites]
posted by telophase at 1:34 PM on September 4, 2019 [3 favorites]
I had an interesting moment today. I was talking to a healthcare provider about my, you know, horrible life situation, and she was like "and you're on disability, right?" My thoughts, more or less in order, were: ugh, I wish I was on disability. Wait, does this mean I could be on disability right now? Oh, maybe this means I'm morally OK to apply for disability. Jeez, I have no idea how to apply for disability. Aw man, I bet I'd never get approved.
posted by shapes that haunt the dusk at 4:42 PM on September 4, 2019 [13 favorites]
posted by shapes that haunt the dusk at 4:42 PM on September 4, 2019 [13 favorites]
Mittens, I don't know if other people talking about themselves and vaguely similar difficulties is useful or not, so feel free to skip. I work in the NY office of a large company based in the South Bay and need to go to California two or three times a year. Every time I go, I might as well write off the month in terms of doing anything beyond keeping my life afloat. (Before I went in March, I had started cooking again. I threw out some leftovers this weekend that had been lurking in the fridge since March. I still haven't resumed cooking meaningfully.) But I'm there and all anyone wants to ask me is do I like visiting California, don't I want to come more often, etc, etc. What am I supposed to say?
posted by hoyland at 5:05 PM on September 4, 2019 [7 favorites]
posted by hoyland at 5:05 PM on September 4, 2019 [7 favorites]
Here I am. Nine years ago my life was turned on end with a relatively sudden onset of a progressive chronic illness. I'm still coming to terms with the fact that I'm disabled. I also try to distinguish between my usual limitations being the disabled bit and when I become debilitated to the extent that I lose almost all mobility. I've since picked up a few additional diseases and problematic complications that come with their own fun.
For the first couple of years I only thought about the medical model of illness and disability. I was lucky that I already had a strong relationship with my GP. He'd known me for years as a healthy, active person and immediately knew that that had changed. I was also lucky that the first specialist I was referred to was on top of my situation and made the call on a diagnosis at our second appointment, for a condition that can sometimes take many years to nail down.
It took several year until I began to understand how I'd been impacted within the social model. How much it had changed the way I perceived my environment and how, in turn, how it saw me. The mobility and pain issues weren't the problem. It was the secondary, but more visible problems that I experience that hold me separate. I'm still struggling with that part. I've given up so much to avoid others seeing me in a distressed state. I no longer go out unless it's somewhere where the shop owners already know me so I don't have to explain a sudden need to rush to a bathroom to avoid soiling myself, or to take multiple tissues to wipe away the massive amount of sweat that occurs when I'm in pain or when I break into a coughing fit that sometimes leads to retching.
I don't like where I am and regrettable everything keeps progressing.
posted by michswiss at 1:45 AM on September 5, 2019 [10 favorites]
For the first couple of years I only thought about the medical model of illness and disability. I was lucky that I already had a strong relationship with my GP. He'd known me for years as a healthy, active person and immediately knew that that had changed. I was also lucky that the first specialist I was referred to was on top of my situation and made the call on a diagnosis at our second appointment, for a condition that can sometimes take many years to nail down.
It took several year until I began to understand how I'd been impacted within the social model. How much it had changed the way I perceived my environment and how, in turn, how it saw me. The mobility and pain issues weren't the problem. It was the secondary, but more visible problems that I experience that hold me separate. I'm still struggling with that part. I've given up so much to avoid others seeing me in a distressed state. I no longer go out unless it's somewhere where the shop owners already know me so I don't have to explain a sudden need to rush to a bathroom to avoid soiling myself, or to take multiple tissues to wipe away the massive amount of sweat that occurs when I'm in pain or when I break into a coughing fit that sometimes leads to retching.
I don't like where I am and regrettable everything keeps progressing.
posted by michswiss at 1:45 AM on September 5, 2019 [10 favorites]
I would be happy to receive info about panic/anxiety/ adoraphobia.
Mittens, if you ask for accommodation, go to HR, describe the accommodation you need, provide a health care provider letter if requested. You do not need to reveal your disability.
posted by theora55 at 11:53 AM on September 5, 2019 [8 favorites]
Mittens, if you ask for accommodation, go to HR, describe the accommodation you need, provide a health care provider letter if requested. You do not need to reveal your disability.
posted by theora55 at 11:53 AM on September 5, 2019 [8 favorites]
adoraphobia heh. agoraphobia
posted by theora55 at 8:05 PM on September 5, 2019 [12 favorites]
posted by theora55 at 8:05 PM on September 5, 2019 [12 favorites]
Finally got up the nerve today to make the appointment to see my primary care doctor to get her to redo the paperwork she dropped the ball on for my initial application (she left whole pages blank or wrote "N/A," grr). And I was actually able to get in this month.
posted by The Underpants Monster at 9:09 AM on September 6, 2019 [15 favorites]
posted by The Underpants Monster at 9:09 AM on September 6, 2019 [15 favorites]
Waves hello!
It's exciting to see folks in this thread. Metafilter's great disabled posters are one of the site's prime attractions. (The resistance to UI changes that would make the site more accessible are one of the site's prime frustrations, but original internet people gonna be stubborn.)
In search of something useful to contribute, I found an excellent 11-year-old thread by Wheelchair Dancer at Amptoons on "On Making Argument: Disability and Language."
thank all the stars in heaven for the waybackmachine.
posted by Jesse the K at 1:45 PM on September 6, 2019 [2 favorites]
It's exciting to see folks in this thread. Metafilter's great disabled posters are one of the site's prime attractions. (The resistance to UI changes that would make the site more accessible are one of the site's prime frustrations, but original internet people gonna be stubborn.)
In search of something useful to contribute, I found an excellent 11-year-old thread by Wheelchair Dancer at Amptoons on "On Making Argument: Disability and Language."
thank all the stars in heaven for the waybackmachine.
posted by Jesse the K at 1:45 PM on September 6, 2019 [2 favorites]
never flagged anything before - would there be a consequence here? deleted comment? i would totally start reporting language like that, i hate seeing it
posted by gaybobbie at 5:56 PM on September 7, 2019
posted by gaybobbie at 5:56 PM on September 7, 2019
Often a comment that is flagged gets deleted, but not always; sometimes it draws a mod note to that effect, sometimes it just shapes future moderation decisions. Flagging is a really good idea when it comes to trying to shape the community, because it's the easiest way for mods to get a sense for what bothers and upsets people and how to respond to it. Pretty much all the notes work to communicate, but you can fill out the little "flag with note" option if you want to explain exactly what is bugging you about a comment.
posted by sciatrix at 6:03 PM on September 7, 2019 [5 favorites]
posted by sciatrix at 6:03 PM on September 7, 2019 [5 favorites]
On another note... something scary happened to me yesterday. I was set to give a talk to my department seminar, and as it's the first talk of the series, the audience filled the room: maybe twenty or thirty people, all in my own departmental subfield. About ten minutes in, I got (apparently noticeably) disoriented and confused. Within ten minutes of that, I went white, nearly passed out, and had to sit down. I wound up pausing until the tunnel vision didn't feel so bad, and then my boss and one of my coworkers walked me to the campus urgent care. I spent about four hours there trying to figure out why I almost passed out and was disoriented, and eventually I got sent home with a very polite "hell if we know; sometimes bodies are weird" from the nurse practitioner looking over my care.
No one around me has been anything but solicitous and concerned about my safety, but I'm mostly just terrified and frustrated and a little ashamed. I don't really have a narrative for why it happened, and because it happened in a public speaking context that was so very visible, I feel really ashamed about it. I know it's not logical to be ashamed, but the publicness + the lack of necessary recovery time + the absence of An Explanation is really scary to try to understand, and I feel really betrayed by my body.
I've been having more trouble staying awake in the evenings and asleep in the mornings, which doesn't help, and I have a consultation on Monday with an ENT about the anatomical blockage of my airways. (I have the human equivalent of brachycephalic syndrome. I've known about this for a year or two, but I haven't pushed for surgery yet, in part because it's kind of terrifying to do so. But at this point, I need to have my damn tonsils out at least.) But I don't really have a good Diagnosis to lean on and explain myself on, and I keep not being able to stay away at weird times of day, and I just--I feel like self-advocating is effectively Making Shit Up.
And the shame of--of what, of having a scary thing happen to me, of needing care?--keeps seeping in. I don't know how to talk about that, and I'm really grateful that this space is here. I'm still struggling to process what happened to me and how to talk about it and feeling vulnerable.
posted by sciatrix at 6:10 PM on September 7, 2019 [18 favorites]
No one around me has been anything but solicitous and concerned about my safety, but I'm mostly just terrified and frustrated and a little ashamed. I don't really have a narrative for why it happened, and because it happened in a public speaking context that was so very visible, I feel really ashamed about it. I know it's not logical to be ashamed, but the publicness + the lack of necessary recovery time + the absence of An Explanation is really scary to try to understand, and I feel really betrayed by my body.
I've been having more trouble staying awake in the evenings and asleep in the mornings, which doesn't help, and I have a consultation on Monday with an ENT about the anatomical blockage of my airways. (I have the human equivalent of brachycephalic syndrome. I've known about this for a year or two, but I haven't pushed for surgery yet, in part because it's kind of terrifying to do so. But at this point, I need to have my damn tonsils out at least.) But I don't really have a good Diagnosis to lean on and explain myself on, and I keep not being able to stay away at weird times of day, and I just--I feel like self-advocating is effectively Making Shit Up.
And the shame of--of what, of having a scary thing happen to me, of needing care?--keeps seeping in. I don't know how to talk about that, and I'm really grateful that this space is here. I'm still struggling to process what happened to me and how to talk about it and feeling vulnerable.
posted by sciatrix at 6:10 PM on September 7, 2019 [18 favorites]
Aaaaaaand now I have to call and change that appointment, because my apartment is being inspected that day. Consarn it.
posted by The Underpants Monster at 9:09 PM on September 7, 2019 [4 favorites]
posted by The Underpants Monster at 9:09 PM on September 7, 2019 [4 favorites]
just had another comment deleted about trying to deal with someone potentially doing harm to a vulnerable person, probably because I was relatively open about my own disability/trauma stuff in it.
I don't see anything ever get deleted for ableist language on this website, IME, but I get deleted over and over and over for objecting to ableism, abuse, or marginalization, or for disclosing my experiences. fuck this place, I'm done.
posted by bagel at 11:31 AM on September 8, 2019
I don't see anything ever get deleted for ableist language on this website, IME, but I get deleted over and over and over for objecting to ableism, abuse, or marginalization, or for disclosing my experiences. fuck this place, I'm done.
posted by bagel at 11:31 AM on September 8, 2019
I've spent the last two weeks getting ADHD testing done. The results aren't completely tabulated yet, but as I was leaving the office last week, my doctor basically said that barring some kind of extreme 180 shift on the remaining portions of the test he needs to grade, it's looking like I am somewhere on the ADHD range.
The testing was among one of the most difficult things I've ever done, and also -- the most boring, tedious, and frustrating thing ever, too. It seemed easy -- listen to the tones, and press a button, don't press the button for the high sounds independently -- but my brain could not follow along. It's so hard, and I'm not sure yet about what kind of ADHD -- inattentive, hyperactive or combination (I'm thinking inattentive, maybe combination), but just knowing that yes, my brain is partially responsible for why I can't seem to do things that I want to do. It's me, but it's not just me! It explains so much and helps me feel less like a total failure.
I'm thinking about trying medication. I'm scared because it's new and different, but I kind of want to try? I'm leaning toward trying.
posted by PearlRose at 7:36 AM on September 10, 2019 [4 favorites]
The testing was among one of the most difficult things I've ever done, and also -- the most boring, tedious, and frustrating thing ever, too. It seemed easy -- listen to the tones, and press a button, don't press the button for the high sounds independently -- but my brain could not follow along. It's so hard, and I'm not sure yet about what kind of ADHD -- inattentive, hyperactive or combination (I'm thinking inattentive, maybe combination), but just knowing that yes, my brain is partially responsible for why I can't seem to do things that I want to do. It's me, but it's not just me! It explains so much and helps me feel less like a total failure.
I'm thinking about trying medication. I'm scared because it's new and different, but I kind of want to try? I'm leaning toward trying.
posted by PearlRose at 7:36 AM on September 10, 2019 [4 favorites]
You can always stop if you don't like it, but yes, medication has been an incredible boon to me. I'm trying different medications after a few months on Adderall. Ritalin right now before my insurance will approve Vyvanse.
That testing sounds very intense, I just had to have a 10 minute-ish conversation with my doctor. Such different experiences!
posted by OnTheLastCastle at 7:49 AM on September 10, 2019 [2 favorites]
That testing sounds very intense, I just had to have a 10 minute-ish conversation with my doctor. Such different experiences!
posted by OnTheLastCastle at 7:49 AM on September 10, 2019 [2 favorites]
Where do you all get testing for ADHD anyway? It's never been offered as an option for me.
Meanwhile, I have a referral for a sleep study, but none of the sleep clinics appear to accept Medicaid. I keep jolting awake in the middle of the night all jittery and gasping for breath. If I die because of the shitty public healthcare system in this country, I swear I will haunt the shit out of so many politicians.
posted by shapes that haunt the dusk at 8:04 AM on September 10, 2019 [7 favorites]
Meanwhile, I have a referral for a sleep study, but none of the sleep clinics appear to accept Medicaid. I keep jolting awake in the middle of the night all jittery and gasping for breath. If I die because of the shitty public healthcare system in this country, I swear I will haunt the shit out of so many politicians.
posted by shapes that haunt the dusk at 8:04 AM on September 10, 2019 [7 favorites]
I have decent insurance, which made that the easiest part. I talked to a co-worker, who mentioned that her doctor's practice offers the testing for adults and takes our insurance, so I called them, stated that I wanted adult ADHD testing, and they gave me their first available appointments, which were about six weeks out. Decent insurance that lets me do this without jumping through referral hoops and meeting thousands of dollars in deductibles first was key. (My job is miserable but I love my insurance so here we are.)
Apparently my testing was like medium-intense compared to how some other practices do it. But I'm lucky. The insurance racket in this country is the worst and I'd probably be a fired anxious, inattentive mess on the street with poorly managed asthma without it.
posted by PearlRose at 8:36 AM on September 10, 2019 [2 favorites]
Apparently my testing was like medium-intense compared to how some other practices do it. But I'm lucky. The insurance racket in this country is the worst and I'd probably be a fired anxious, inattentive mess on the street with poorly managed asthma without it.
posted by PearlRose at 8:36 AM on September 10, 2019 [2 favorites]
Yeah, my insurance has me jumping through many hoops to get Vyvanse. Lame. Maybe I should get formal testing. I can focus on things at night in my own space though I do spend a lot of my time just... puttering. But I can read a book or play a game so I sometimes wonder if I'm just making up having ADD.
posted by OnTheLastCastle at 9:19 AM on September 10, 2019 [1 favorite]
posted by OnTheLastCastle at 9:19 AM on September 10, 2019 [1 favorite]
anger is a symptom of chronic pain. I've had to angrily educate a few people about this over time -- the ones who've wondered whether my anger was perhaps what was causing the pain thing.
#$%&*@#*!!!!!!!
posted by philip-random at 3:41 PM on September 10, 2019 [7 favorites]
#$%&*@#*!!!!!!!
posted by philip-random at 3:41 PM on September 10, 2019 [7 favorites]
kanata, I think you've given me my first tattoo
NO SPOONS LEFT ONLY KNIVES
posted by Jesse the K at 2:19 PM on September 11, 2019 [9 favorites]
NO SPOONS LEFT ONLY KNIVES
posted by Jesse the K at 2:19 PM on September 11, 2019 [9 favorites]
I haven't commented here yet because I haven't had the spoons, myself, to share my thoughts on my experience on the site as a person with ADHD. But I am reading and wanted to note my support for everyone else here who has shared their own experiences and thoughts. Thank you allā¤ļø
posted by nightrecordings at 3:03 PM on September 18, 2019 [4 favorites]
posted by nightrecordings at 3:03 PM on September 18, 2019 [4 favorites]
Where do you all get testing for ADHD anyway?
Iād been seeing a therapist (PsyD) for... maybe a year? Somewhere between 9 and 15 months, initially for Trump and loss related anxiety and depression, and then for that and also Iād clearly needed to be in therapy relating to my shitty job for a long time, when he first suggested that I might have ADHD. So late 2017 or early 2018. He had me take like a 20 minute test on a laptop or tablet, donāt remember. Push the button in some situations but not others, either related to noises or stuff flashing on the screen, donāt quite remember, maybe some of both.
My results came out borderline. Cut to early this year after I quit my terrible job even though it was not wise financially, and Iām still sleeping like shit even though I thought itād be way better after quitting, cutting way back on caffeine because of that, and struggling to accomplish even close to as much useful stuff around the house and creatively as I should be. My complaints about this made my therapist decide I was fully completely ADHD, and Iād just compensated most of my life with my very high levels of caffeine intake and the fact that high grades happened to be an effective focus motivation throughout my long academic career, while applying for jobs, cleaning, and creative writing without super regular positive feedback are not.
posted by Caduceus at 3:49 PM on September 18, 2019 [3 favorites]
Iād been seeing a therapist (PsyD) for... maybe a year? Somewhere between 9 and 15 months, initially for Trump and loss related anxiety and depression, and then for that and also Iād clearly needed to be in therapy relating to my shitty job for a long time, when he first suggested that I might have ADHD. So late 2017 or early 2018. He had me take like a 20 minute test on a laptop or tablet, donāt remember. Push the button in some situations but not others, either related to noises or stuff flashing on the screen, donāt quite remember, maybe some of both.
My results came out borderline. Cut to early this year after I quit my terrible job even though it was not wise financially, and Iām still sleeping like shit even though I thought itād be way better after quitting, cutting way back on caffeine because of that, and struggling to accomplish even close to as much useful stuff around the house and creatively as I should be. My complaints about this made my therapist decide I was fully completely ADHD, and Iād just compensated most of my life with my very high levels of caffeine intake and the fact that high grades happened to be an effective focus motivation throughout my long academic career, while applying for jobs, cleaning, and creative writing without super regular positive feedback are not.
posted by Caduceus at 3:49 PM on September 18, 2019 [3 favorites]
I am having a lot of good but vulnerable feelings about this post about eating. I thought maybe I should say that here.
posted by sciatrix at 7:32 PM on September 18, 2019 [5 favorites]
posted by sciatrix at 7:32 PM on September 18, 2019 [5 favorites]
sciatrix, I am having similar feels. I wish that younger more depressive me would have had a place to hear these suggestions and know that other people struggle with this. I thought I was the only one who couldn't do it. My wife does a lot of the making meals when I can't now, my struggle is a mixture of severe ADHD and sensory issues that don't tell me I'm hungry until it's far too late and then I'm so hungry I cry at the drop of a hat. I am grateful that my wife recognizes that and helps so much.
posted by fairlynearlyready at 12:54 PM on September 19, 2019 [3 favorites]
posted by fairlynearlyready at 12:54 PM on September 19, 2019 [3 favorites]
I have all the checklist symptoms of adult ADHD. The one period during which I was able to see a psychiatrist, he said that if I responded to the amphetamine medication, that was as good as testing. And for a while, it was like a miracle. But after a few months, I was going a week at a time without sleeping and couldn't stop excruciatingly clenching and grinding my teeth even on half of the smallest pill.
posted by The Underpants Monster at 3:53 PM on September 19, 2019 [5 favorites]
posted by The Underpants Monster at 3:53 PM on September 19, 2019 [5 favorites]
I was going to comment in that post about eating, but I realized that even reading the post made me feel bad, so I did other things instead. I don't want to have to relive my shittiest periods of depression, and food seems to be a really evocative thing. I also hate feeling like the severity of my depression is going to be evaluated by people who don't know me, based on how I describe my personal habits, even if that's not even what would actually happen. I think because my life has been pretty badly affected by mental illness, I'm especially wary of people finding something to be unnecessarily critical of, as if to assume that I was making excuses for myself, or to feel like they were able to accomplish more than me despite having gone through worse. A topic of conversation with family this week was on how to negotiate our own insecurities instead of waiting for other people to approve of you. I think declining to participate is one way.
posted by shapes that haunt the dusk at 7:45 PM on September 19, 2019 [8 favorites]
posted by shapes that haunt the dusk at 7:45 PM on September 19, 2019 [8 favorites]
Holy fuck, that Peter Dinklage thread is garbage. I honestly wish it hadn't been posted, because Mefites clearly aren't capable of having a non-trash discussion of that article.
posted by ArbitraryAndCapricious at 5:22 AM on September 24, 2019 [4 favorites]
posted by ArbitraryAndCapricious at 5:22 AM on September 24, 2019 [4 favorites]
I saw this post a while ago but have patchy internet access at the moment and used that as a bit of an excuse for not posting. I'm still not sure what to say but wanted to add myself as a disabled person. MF is almost always for me a space in which I don't have to admit my disability, which has been a good thing for a long time for me, but does mean that I edit myself severely on the site. I know at least once I've participated in de-railing a post about disability, which I am ashamed about and I hope I would not do again.
posted by paduasoy at 5:26 AM on September 24, 2019 [5 favorites]
posted by paduasoy at 5:26 AM on September 24, 2019 [5 favorites]
Hey, just--you don't gotta say anything. Thank you for coming here.
I'm too fucking tired right now to look at the Dinklage post. I shouldn't have looked at the sapiosexual one, it hits way, way too many of my intersections. God.
I think I might be overstretched again in terms of trying to do heavy emotional lifting, and I'm overextended. Currently the possibility of having mild cerebral palsey is rotating around my headspace as a result of a visit to a neurologist yesterday, and I have no idea why that diagnosis feels like a potential Real Thing and the autism doesn't and I feel like a bad person for taking some time to adjust to that idea even though I already knew about the swallowing thing, and!
Fuck!
Fuck limits, man. I'm so tired of limits.
posted by sciatrix at 10:48 AM on September 24, 2019 [4 favorites]
I'm too fucking tired right now to look at the Dinklage post. I shouldn't have looked at the sapiosexual one, it hits way, way too many of my intersections. God.
I think I might be overstretched again in terms of trying to do heavy emotional lifting, and I'm overextended. Currently the possibility of having mild cerebral palsey is rotating around my headspace as a result of a visit to a neurologist yesterday, and I have no idea why that diagnosis feels like a potential Real Thing and the autism doesn't and I feel like a bad person for taking some time to adjust to that idea even though I already knew about the swallowing thing, and!
Fuck!
Fuck limits, man. I'm so tired of limits.
posted by sciatrix at 10:48 AM on September 24, 2019 [4 favorites]
the sapiosexual thread went off the rails in a pretty bad way on both sides of the most recent mod comment, and sciatrix has disabled their account. I think that's a huge loss to this community.
posted by sagc at 6:03 PM on September 24, 2019 [9 favorites]
posted by sagc at 6:03 PM on September 24, 2019 [9 favorites]
(For reference: the post about Peter Dinklage's acting career, and the post about people who describe themselves as sapiosexual.)
posted by brainwane at 7:40 PM on September 24, 2019
posted by brainwane at 7:40 PM on September 24, 2019
That is a huge loss and i'm very sorry to see it. their voice means a lot to me here.
i wonder what the difference is between disability threads that the peter dinklage one was determined to derail and diminish the subject but the topographical agnosia one goes, by my standards, well and constructively? the latter are like a balm to me and i haven't even read the article yet, but the ones that go bad are so ......... defeating
posted by gaybobbie at 5:48 AM on September 25, 2019 [3 favorites]
i wonder what the difference is between disability threads that the peter dinklage one was determined to derail and diminish the subject but the topographical agnosia one goes, by my standards, well and constructively? the latter are like a balm to me and i haven't even read the article yet, but the ones that go bad are so ......... defeating
posted by gaybobbie at 5:48 AM on September 25, 2019 [3 favorites]
I've been hesitant to come back to this thread, just because I'm in the middle of a big wave of panic and don't want to...like...think about it at all, but I do want to come back and mourn sciatrix leaving, because omg what a loss, and I hope that it's only a temporary departure.
posted by mittens at 9:00 AM on September 25, 2019 [6 favorites]
posted by mittens at 9:00 AM on September 25, 2019 [6 favorites]
This hurts. sciatrix has been so helpful to me over the years and I've benefited greatly from their insight and candor. I do know that they have previously taken a break and returned after a while, and I am hoping that they will take the time/space they need and come back to us someday.
posted by mochapickle at 11:22 AM on September 25, 2019 [3 favorites]
posted by mochapickle at 11:22 AM on September 25, 2019 [3 favorites]
My contacts list is a graveyard of accounts that are disabled or no longer active users, and it makes me sadder every time I look at it. I'm really sorry to sciatrix go. I really hope they feel able and willing to return at some point, I value their voice here a lot.
posted by Caduceus at 3:49 PM on September 25, 2019 [3 favorites]
posted by Caduceus at 3:49 PM on September 25, 2019 [3 favorites]
This is a sad inflection point for the site, I fear.
posted by Mistress at 3:52 PM on September 25, 2019
posted by Mistress at 3:52 PM on September 25, 2019
Mod note: Noting for context that sciatrix left a note characterizing this as taking a break, and has similarly taken a break a couple times before. It's okay for folks to take breaks, and we need to give them room to do that.
posted by cortex (staff) at 6:16 PM on September 25, 2019 [13 favorites]
posted by cortex (staff) at 6:16 PM on September 25, 2019 [13 favorites]
if you listen carefully to REM's It's The End Of The World As We Know It, you may notice that the lyrics for the chorus's sort of counterpoint vocal (rather buried in the mix) are, "time I had some time alone".
timeouts have long been a solid option in these times of perpetual apocalypse
posted by philip-random at 11:03 PM on September 25, 2019 [2 favorites]
timeouts have long been a solid option in these times of perpetual apocalypse
posted by philip-random at 11:03 PM on September 25, 2019 [2 favorites]
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posted by Bella Donna at 10:17 AM on September 1, 2019 [7 favorites]