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Disabled Community Megathread - November 4th to November 10th

A new week, a new mega! Welcome all disabled comrades. As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:

"Disability" is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.


What is Disability Justice?

... In 2005, disabled queers and activists of color began discussing a “second wave” of disability rights. Many of these first conversations happened between Patty Berne and Mia Mingus, two queer disabled women of color who were incubated in progressive and radical movements which had failed to address ableism in their politics. Their visioning soon expanded to include others including Leroy Moore, Stacey Milbern, Eli Clare and Sebastian Margaret. These conversations evolved over time, at conferences, over the phone, formal and informal, one-on-one and in groups.

While every conversation is built on those that came before it, and it’s possible that there were others who were thinking and talking this way, it is our historical memory that these were the conversations that launched the framework we call disability justice.

Given the isolation enforced by ableism and capitalism, many of us have often found ourselves as leaders within our various communities, yet isolated from in-person community with other disabled people of color or queer or gender non-conforming crips. Many of us have found “liberated zones” online that celebrate our multiple identities. Disability justice is a developing framework that some call a movement. We are still identifying the “we,” touching each other through the echoes of each other’s hopes and words.

Given this early historical snapshot, we assert that disability justice work is largely done by individuals within their respective settings, with Sins Invalid and the Disability Justice Collectives based in NYC, Seattle, and Vancouver, B.C., being notable exceptions. These groups and organizing structures often come into being, fall apart and regroup with different names and configurations over time. Online groups like Sick & Disabled Queers can offer opportunities for people with disabilities to communicate and create new norms together. Some voices may emphasize a specific aspect of disability justice over another, which can be expected in all early movement moments. However, what has been consistent across disability justice - and must remain so - is the leadership of disabled people of color and of queer and gender non-conforming disabled people.

Disability justice activists, organizers, and cultural workers understand that able- bodied supremacy has been formed in relation to other systems of domination and exploitation. The histories of white supremacy and ableism are inextricably entwined, created in the context of colonial conquest and capitalist domination. One cannot look at the history of US slavery, the stealing of Indigenous lands, and US imperialism without seeing the way that white supremacy uses ableism to create a lesser/“other” group of people that is deemed less worthy/abled/smart/capable. A single-issue civil rights framework is not enough to explain the full extent of ableism and how it operates in society. We can only truly understand ableism by tracing its connections to heteropatriarchy, white supremacy, colonialism, and capitalism. The same oppressive systems that inflicted violence upon Black and brown communities for 500+ years also inflicted 500+ years of violence on bodies and minds deemed outside the norm and therefore “dangerous.”

Furthermore, racism, anti-Islamic beliefs, ableism and imperialism come together to feed us images of the “terrorist” as a dangerous Brown enemy... All this is compounded by the ways ableism, along with queer-hatred and the violence of the gender binary, label our bodies and communities as “deviant,” “unproductive,” and “invalid.”

A disability justice framework understands that:

  • All bodies are unique and essential.
  • All bodies have strengths and needs that must be met.
  • We are powerful, not despite the complexities of our bodies, but because of them.
  • All bodies are confined by ability, race, gender, sexuality, class, nation state, religion, and more, and we cannot separate them.

These are the positions from which we struggle. We are in a global system that is incompatible with life. The literal terrain of the world has shifted, along with a neo-fascist political terrain. Each day the planet experiences human-provoked mudslides, storms, fires, devolving air quality, rising sea levels, new regions experiencing freezing or sweltering temperatures, earthquakes, species loss and more, all provoked by greed-driven, human-made climate chaos. Our communities are often treated as disposable, especially within the current economic, political and environmental landscapes. There is no way to stop a single gear in motion — we must dismantle this machine.

Disability justice holds a vision born out of collective struggle, drawing upon legacies of cultural and spiritual resistance. Within a thousand underground paths we ignite small persistent fires of rebellion in everyday life. Disabled people of the global majority — Black and brown people — share common ground confronting and subverting colonial powers in our struggle for life and justice. There has always been resistance to all forms of oppression, as we know in our bones that there have also always been disabled people visioning a world where we flourish, a world that values and celebrates us in all our beauty.

Source: Sins Invalid


Mask up, love one another, and stay alive for one more week.

69 comments
  • People at my school are posting "make sure to take care of yourself post election 🥺 drink water and do self care" stuff on discord. All these people who walk around who haven't been masking since 2022, just shaking as if the Democrats haven't killed at least a million people from their COVID policies alone. This is what got me to finally leave the Disabled Students Union server. Cry me a river.

    I posted the PFLP's statement on the election to my COVID club's group chat because I'm not having any of that in the student group I run lolll.

  • incandescent rage at the welfare system today. in my country it's very transparently a capitalist humiliation ritual designed to remind you that you are part of an underclass seen as subhuman. i managed to get one payment but the state owes me another 3 that "expired" because i didn't go in time, apparently i am still entitled to the money just more hoop-jumping required. genuinely at the end of my tether.

    • Same here. I'm a partially sighted stroke and cancer patient. Multiple doctors have written to the DWP (Nazis who run the British benefits system) on my behalf, requesting them to give me a 10 year benefit award (the maximum possible even if you have an incurable disease like Parkinsons, Alzheimers, MS, etc). Still the most they've ever given me, after a lengthy and stressful appeal, was 4 years. However the appeal took nearly a year and that year was knocked off the total. They're allowed to start assessing you a year before the award ends, which they did, so really my 4 years was actually 2 years before the stressful assessment process started again.
      I'm still having cancer treatment, with life-ruining side effects, I'm still learning to walk again after the stroke and I'm still adjusting to becoming partially sighted. Multiple doctors have told them my health won't improve any time soon. Why are they re-assessing me so frequently? Why did they give me zero points the last time and stop my money? The DWP are saying they have a 10 year backlog of claims to get through. So why don't they stop giving people such short awards and assessing us so frequently? I could tolerate life, even though it's painful and miserable, if it wasn't for the endless poverty. It's the frequent assessments and appeals, the low payments when I do get them, and the constant threat of having my benefits stopped permanently, that makes me suicidal.

  • ME posting:

    • I have to lie in bed at least 14 hrs a day and most days more. Now as I have lost significantly amount of muscle due to inactivity it’s become less comfortable to be in bed for so long.
    • not being able to help friends and family as much and being so dependent on other people is hard. I used to cook for my family and now I can’t even cook for myself so they have to do it for me. Being able to do such things for my family was a source if pride and happiness and now I have lost that which sucks.
    • I’m fucking lonely because I don’t see anyone else most days
  • NYT with a "no shit" article: When Chronic Diseases Come With Chronic Financial Pressure

    Some statistics in the article:

    • 129 million USians "deal with a major chronic disease"
    • 30% of "adults reported not taking medications as prescribed over the past year because of cost"
    • 40% of adults have at least two chronic conditions
    • Women are more likely than men to have chronic conditions, and "women and people with disabilities are particularly likely to skip or delay medication because of financial concerns"
  • Fatigue has been horrible this week. Can’t pull myself out of bed for pretty much anything except meals, and even that’s a huge struggle. I hate this.

  • So I was thinking about the post someone made in the past thread about being stuck in waiting mode, and it finally hit me that I'm kinda stuck a bit. As opposed to the "I have to be somewhere in 3 hours so I'm thinking about that and can't really get into anything," this is more of a "who knows what's gonna happen but its just kinda like a recurring itch and when I'm not distracted I'm kinda feeling weird and ruminating" thats been going on for a couple of weeks now.

    Sorry for being so vague but I'm wondering if anyone has general advice? Distracting myself with interests has been helpful but work is the least interesting thing so when I'm supposed to be working I dont distract myself with fun stuff and then it just kinda is creeping up on me.

  • I feel really bullied into treatments and interventions I don't want just to try and keep my benefits. Does anyone else feel the same way?

    I'm going through yet another disability benefit appeal right now. They use any excuse they can to stop my money. Last time I had a stroke during covid and a benefit reassessment shortly after. Because of covid, the physiotherapy department was closed, so I couldn't start physiotherapy right away. They used that as an excuse to stop my payments - because I wasn't having physiotherapy, according to them, the effects of the stroke can't be that bad therefore zero points and no money. So, I don't dare to stop any of the treatments I'm having, even though most of them are pointless and just cause me a lot of extra stress. One example is mental health therapy. After making a suicide attempt it took me 5 years on the waiting list to get this therapy, and the therapist wrote a letter of support for my benefit claim, which is something at least. But the therapy is shit.

    The therapist doesn't lead the sessions, she expects me to think of things to do. I once expressed an interest in meditation so now a large chunk of the session is her doing a very crap guided meditation where she makes me close my eyes while she tells me to roll my ankles, roll my head and wiggle my feet. Then she gets me to draw a picture of whatever I'm feeling that day. Then she writes me a daily timetable of nonsense and tells me to stick to it. It's utter rubbish, how is this meant to help? It's stressful juggling my many medical appointments (therapy, eye clinic, stroke clinic, endocrinologist, oncologist, physiotherapist, neurologist, GP) and I would love to quit all the unnecessary ones that aren't helping and are just causing me extra stress, like mental therapy. But I'm worried if I do, the DWP will use that as an excuse to stop my money, because that's what they do.

    People are supposed to have the freedom to refuse medical treatment, but there is no real freedom to refuse if you're going to be made destitute in retaliation.

    Well, eventually I broke down and explained how I feel to the therapist. She said trying to get benefits isn't a good enough reason to have therapy. I tried to explain to her about how worried I am about being homeless and totally broke permanently if they don't reinstate my benefits, but I could see I was talking to a brick wall. She just doesn't understand being totally destitute with no back-up means of support, that much is obvious. She said if I don't want the therapy I should just quit, and I tried so hard to get her to understand my perspective but she doesn't. Eventually she said we could cut the weekly sessions down to monthly face to face ones, with weekly online sessions. I didn't want the online ones but felt pressured to accept. The first online one was meant to be today and I totally forgot about it. I got an angry sounding email from her which seemed to imply stopping the therapy altogether. I asked if we could just do it monthly but she isn't agreeable to that.

    This is so stressful! I don't want the added stress from this shitty therapy but the DWP will use it against me if I stop. Even if it was good therapy it wouldn't help. My problems are severe disability and poverty. Therapy won't fix that. On top of all this, I get severe migraines, which are triggered by artificial smells and the therapy wing of the hospital stinks of air fresheners and perfume and stuff, it actually gives me migraines to go there. AND it's a waste of NHS resources bullying people into medical treatments they don't want!

    • She said trying to get benefits isn't a good enough reason to have therapy. I tried to explain to her about how worried I am about being homeless and totally broke permanently if they don't reinstate my benefits, but I could see I was talking to a brick wall.

      You have a few avenues to approach this.

      You can ask her to explain Maslow's Hierarchy to you. I hate it. It's individualistic and a cooptation of better concepts and it's just gross but your run of the mill therapist who just scraped by to get their qualification is almost certainly going to like it. (I'd go so far as to say that overvaluing it is a sign of a bad therapist.) But regardless of that, if she can tell you as an expert in her own words how a person is (ostensibly) incapable of engaging in so-called higher order needs in Maslow's Hierarchy without having their lower order needs being met such as, I dunno, your physical needs and your need for safety then you are (allegedly) incapable of achieving your higher order needs like, I dunno, engaging in therapy then you will have her on that front. You might have to ask a pointed question like "Does that mean my need for housing is a necessary precondition for making progress in therapy?" or to remark that it seems as though according to Maslow's Hierarchy your concerns about the very real threats to your physical needs and your safety are a valid reason for engaging in therapy.

      You could ask her what she sees as valid reasons for engaging in therapy are or if she believes that people who have "invalid" reasons for engaging in therapy are capable of achieving positive outcomes through therapy.

      You could try asking her to account for her work with you so far: the primary mode of therapy she is engaging you with, what she has identified as your therapy goals, how she is working towards facilitating you to achieve these goals, what barriers to these goals she has identified, how she is working to address these barriers, and how she views your progress together. A good therapist will welcome this sort of accountability and your willingness to take a bird's eye view of the therapeutic process while (however they want to label it) being engaged in an "empowering discussion" that is "client-led", or whatever buzzwords they would put in their casenotes. You are entitled to view your casenotes btw. A bad therapist will get defensive and they'll bullshit their way through these answers but, ultimately, a therapist is supposed to have these things in the front of their mind when working with a client and they should be able to answer these questions with little effort. Imagine a business consultant not being able to answer these sorts of questions from a client - that would be the mark of a terrible consultant. At the risk of committing the sin of commodity fetishism to get the idea across here, a therapist can be understood as your mental health consultant and if they don't know what your desired outcomes are, if they aren't identifying and adapting to the barriers, and they aren't able to explain how they are working on achieving these outcomes then they are rubbish and they aren't likely to achieve anything.

      A therapist should be able to work with clients who are "resistant" (and the use of this type of wording is routinely weaponised by lazy therapists who want to shift the blame for their own lack of dynamism and responding to the client's needs and circumstances onto the client); after all, if there was no resistance then wouldn't a client be able to just "fix" the issue instantaneously (and likely all by themselves)?

      The risk is that they'll take a dim view of an approach like this but then if they do that they are not taking a client-centred approach and they are not working on a basis of facilitating the client's self-empowerment.

      (This is another bugbear for me: therapists and workers in caring roles or support roles almost always centre themselves in the empowerment process. It's all "I work from an empowerment model" and "I'm empowering you to do x and y". I hate this so much. Power isn't given, it's something that is taken. Not necessarily in a zero-sum way of taking power away from others but in the sense that power is claimed and exercised; it's enacted. You don't give others power, you can give them authority or permission to exercise power but this is not a one-way transactional thing, and you can provide the tools and the context for people to empower themselves. You, as a therapist or a support worker, are not the power fairy who goes around distributing empowerment to the deserving and decidedly passive recipients of your beneficence. This is particularly endemic in how privileged people talk about "giving people a voice". Please stfu. You aren't doing that. Almost everyone has a voice, especially in a metaphorical sense. What you are giving them is a platform or your attention. Stop flattering yourself and centering yourself as the active agent in their autonomy. Stop exaggerating your role in this. You don't "give" a baby the ability to walk, you don't "give" a child the ability to ride a bike or swim. You are providing the conditions for them to learn how to do these things themselves. If a teacher wouldn't say "I did that. I gave them the ability to pass the exam." because it's gross and erases the effort and the autonomy of students then why is it that in the professions that are apparently so fixated upon client empowerment it's totally acceptable, if not downright encouraged, to treat empowerment in this sort of framing?)

    • I was dangerously close to falling into a similar situation this summer - a medication that helped my condition but broke my brain. I was so afraid that they would force me to keep taking it even though it was making me more disabled than before, and going off benefits would mean losing my health insurance, which would mean... etc.

      And yeah, I've also had to avoid going to the hospital for status migrainosus because I knew that hospital conditions would exacerbate the migraine long before doing anything to treat it: the fluorescent lighting, the smells, the noises, the interruptions, the 10+ hours to wait for a bed because they don't give a fuck about people with an invisible disability.

  • I let slip in my interview last week that I'm autistic. Idk why, I guess just over the last year or 2 since I've been learning where I do and don't mask, and when I should mask around normies, I've slowly become aware of my own Self more. But the question was related to what kind of person I am. I'm fucking goofy. Like I know when I need to be serious or whatever but even my partner has pointed out that I crack stupid jokes as a defense when I'm nervous and such. I'm just a goofy and weird person and I really don't wanna change that.

    I do feel obligated if that wasn't a deal breaker to explain that I need directions explained literally to me otherwise I can spend hours dissecting what they are really asking from me. I get fired for that part a lot(for not knowing precisely what I should be doing etc). After I learned that little nugget about me, I can see why in the past I might have gotten fired for being "confrontational", or "lazy", or whatever. Other big reason is burnout causing my performance to slip.

    But I think I might bring that up if I get a third interview. And that is what I am waiting on now. Idk when that will be but I hope it's soon because I've been studying for a potential drug test and I just wanna fucking get high and disassociate for a few days. These last 2 job prospects have felt a lot like work.

    E: I didn't get the job. Looks like I may be medicating tonight...

  • Another day of trying to use "fantasizing about successfully suing the United States of America for giving me a migraine" as a painkiller

  • I don't want to go to work tomorrow. I can't work in a monitored PC, in an open office, with stand up meetings that interrupt me and a 2h commute (total thankfully). I know I have it good with my slow-ass coding job, but this kind of environment isn't conductive to taking breaks so I just overwork myself. I already used the "feeling sick" excuse last week to work remotely, so I will have to survive another day. Being AuDHD is suffering

  • Weed really helps relieve my ME/CFS symptoms. I smoke it now but I’m going to see if I can get some low dosage edibles to keep my lungs healthy.

    • just in case edibles don't work out for you, vaping can also be a lot easier on the lungs, particularly if you do it through water

69 comments