Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Article on ableism & the social model of disability

Discussion in 'General ME/CFS Discussion' started by lior, Jun 18, 2018.

  1. lior

    lior Senior Member

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    Disabled People Don’t Need To Be “Fixed” — We Need A Cure For Ableism

    This article didn't speak to me. I am at the beginning of my learning about the social model of disability. So far, I don't understand how the social model is compatible with ME/CFS, at least in my experience of it. I can't be a part of society like I was because I lack the physical and cognitive energy to interact with people and to create (and a lot more). I don't know what 'adjustments' could be made, or how able people could change, to make up for what abilities I currently lack.

    I understand how the world can be changed in order for a wheelchair user or someone with hearing problems to be able to interact with others more easily, but I can't imagine what equivalent changes could be possible to help me.

    Do you have 'adjustments' you make to still be 'part of society'?
    What does it mean to 'be part of society'?

    The rhetoric of finding a cure is strong in this community. It does indeed strengthen the idea in me that I am broken and need to be fixed, as this article implies, so I can see how stopping looking for a cure could make me feel better about myself. However, I DEFINITELY don't want to stay like this - I want to get better than I am now. I can't empathise with people wanting to stay disabled because they don't know what they would be like if they weren't disabled. Maybe those people are more frequently the ones who were born disabled or have been disabled most of their lives? I still remember what it was like to be well.

    What do you all think of this article?
     
  2. lior

    lior Senior Member

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    Ok, this is just what I needed to read:

    Can the Social Model Explain All of Disability Experience? Perspectives of Persons With Chronic Fatigue Syndrome

    "the themes of disability pride, disability culture, and positive disability identity simply did not resonate with this group’s experience and perspectives."

    "the social model has serious limitations in describing the disability experience of individuals with disabilities who do not have obvious disabilities and whose impairments do not conform to the traditional viewpoint of disability."

    I don't hear many people here actively identifying with the word 'disabled' - this fits with what the report says. I found it a cathartic read.
     
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  3. Moof

    Moof Senior Member

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    I've argued for over a decade that the social model needs an update to include people who identify as chronically sick, and those who identify as both chronically sick and disabled. I identify as the latter, and did even before I became a wheelchair user due to my ME, but don't feel included by the social model in the slightest.

    Impairment, and the lived experience of disabled people, is an immensely complex field, and it's ludicrous to suggest that the notion of 'cure' is or should be resisted by everyone. I have quite a number of Deaf and physically impaired friends who feel extremely strongly that they don't want their impairments fixing; one physically impaired friend who would choose to have hers fixed given the option, but who daren't say so within the disability community; and friends disabled by ME, cancer, inflammatory arthritis, diabetes, etc, who would almost all choose to have it fixed if they could. We all have the right to feel as we do, and to be included on our own terms and according to our own needs.
     
  4. lior

    lior Senior Member

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    Thanks so much @Moof - I'm so glad to hear your perspective. You are so much more informed than me - I'm early in my learning about all this. It really helps me to hear what you have to say.

    Do you have any ideas about how the social model needs to be changed exactly? What would it look like, to be included on our own terms? What changes should we be asking for?
     
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  5. ahmo

    ahmo Senior Member

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    @lior I consider myself 'moderate' ME. But I mostly am home-bound. In the last year I've tried a couple social situations. It just doesn't work for me. I've lost most of my friends over my years of illness. Even going to a meditation group was beyond my comfort level. When I honor myself and stay within my space, I'm pretty good. I've just gotten a very nice woman living in my house (I live in a studio behind). But she talks a lot. It makes a real impact, I just can't do it. I've eventually adjusted to my life as it is, rather than how it was or I'd like it to be. :hug:
     
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  6. boombachi

    boombachi Senior Member

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    I haven't read the articles you mention but I am familiar with these ideas. I work in a mental health setting where most of the people I come accross would love dearly to be "fixed" as would their family and carers who see the suffering they experience and loss of quality of life.

    The function of a mental health service should be to support people to get to a point where they can manage symptoms enough to engage in activities meaningful to them.

    I relate much more to this experience than physical impairment. For me it is about keeping activity levels low enough to experience some of my day without symptoms which allows me to engage in activities meaningful to me. I realise for some this just isn't manageable.

    In order for this to happen, support needs to be in place to do the things that trigger symptoms. This is what is missing for pwme.

    What is interesting to me is that I find that people who regain functioning and quality of life are more accepting of their condition and value it as part of them.

    I believe it is the alleviation of suffering that is important and ability to engage with life. If social adjustments can be made to do this then they should but it is not always enough.

    The social model of disability has its place but as with everything it is only part of the picture.
     
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  7. Moof

    Moof Senior Member

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    The social model is just outdated; it's done its job, and it's now unfit for purpose.

    In the UK, it came out of the social action movements of the 1970s, which also included feminism, antiracism action, arguing for LGBTQ* rights, etc. At the time, the world was completely inaccessible to wheelchair users, difficult for people with any kind of physical impairment, incredibly hard for visually impaired people to navigate independently, and sign language provision was virtually nil (although I have to put a shout out for my secondary school, which taught us BSL in the early 70s, something which mainstream schools seem to be incapable of doing now).

    There were no employment rights for disabled people; even the Sex Discrimination Act didn't come along until 1975, and the Equal Pay Act, which dates back to 1970, is still not worth the parchment it's written on. The line of argument was that people didn't need fixing, as per the old 'medical model'; it was society that needed fixing.

    By the 1990s we were starting to see some progress on disability access, and the 1995 Disability Discrimination Acts speeded that up. Public transport, public buildings, new housing stock, workplaces and employment began to be accessible to a much wider range of people. In the UK at least there's still a long way to go, but we no longer need the same argument about society causing disability rather than people's impairments.

    It ignores the fact that our impairments are an enormous part of our daily lives, that we actually ARE different from people with minimal impairment, and the suggestion that we don't need fixing has long appeared frankly perverse. A person's inability to walk might not need fixing, but if their muscle contractions or pressure sores cause severe pain, should we ask them to gloss over it because it undermines our rhetoric? There's no wonder disability movements have at times seemed fragmented and opposed to one another.

    Since the early 2000s we've needed something more radical, which argues that both impairment and society combine to cause disability. We need to acknowledge that some people's disability cannot at present be removed by enabling access to public facilities, work, and good healthcare. Society must recognise that, until better treatment comes along, these people have to be supported. For instance:
    • People should not be repeatedly subjected to humiliating medical assessments or be required to agree to inappropriate treatment in order to access financial support;

    • We must better acknowledge the existence of hidden impairment;

    • People with more significant care needs must not be forced into residential care if they want to and are capable of living in their own homes with support;

    • Those suffering from conditions that medicine has yet to unpick must neither be ignored nor gaslighted by the medical establishment;

    • Work must become much more accessible to people by allowing flexibility and a more creative mix of work and social security;

    • We must acknowledge that some people are not capable of work, or there will be periods in their lives when they are not capable of work, and we must offer them support without painting them as scroungers;

    • People with impairments who want or seek to have them 'fixed' must not be subjected to pressure by others with similar impairments or seen to be somehow oppressing them.
    I'm afraid this is very UK focused, but anyway, these are some of the things I've been arguing for. I'm sure I've forgotten lots of important points...
     
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  8. imreallytired

    imreallytired heyyy how's it goin

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    i think you guys are misunderstanding the social model a bit, which isn't a surprise since that article doesn't go into it in any depth, talking more about folks with visible disabilities.

    most modern disability activists consider treatment of illness an important part of the social model of disability, at least that's been my experience among the online disability/chronic illness/cripplepunk activist community. it's not incompatible at all with the theory; the lack of treatment, lack of resources dedicated to research, etc is an example of society disabling us. it's common enough for people to forget about people with chronic illnesses, sure, but that's not the same thing as needing a whole new way of thinking about disability. forgetting about other disabled people is inevitable when the community is so huge and varied, and forgetting about other disabled people is a perfect example of the ableism that affects all of us, with or without visible disabilities.

    like in our case, in a society without disability, resources would be allocated strongly and immediately to treat something like cfs as soon as it's identified, and to aid those of us dealing with it while we wait for feasible treatment. the social model is about society doing as much for those with impairments as it does for those without them. stairs and steps are a good example - i use a wheelchair and i can't count how many times i've seen a building that would be perfectly accessible if they just poured out a bit more concrete for a ramp instead of making a handful of steps under the assumption that everyone could use them. another example is disabled parking - in a world without disability, we wouldn't have that. all parking spaces would be accessible. we'd probably have more crowded parking lots though :p

    anyway, point is it's not about just accepting yourself as you are and not doing anything different. that'd mean we shouldn't have wheelchairs or hearing aids either, and by the same logic we wouldn't want any accommodations at all, which is the opposite of what the social model of disability is trying to achieve. not assuming disabled people need to be cured doesn't imply that no disabled people need a cure.

    sorry if that came off as preachy, it's something i feel strongly about, obviously. i just want all us disabled folks to rise up against our oppressors help each other out, and the social model is something that makes that easier IMO.
     
    Last edited: Jun 23, 2018
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  9. Moof

    Moof Senior Member

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    That's exactly how it should work. Unfortunately – in the UK, at least – it doesn't, and that's why it needs reexamining. Disabled people sometimes actively oppress other disabled people, using the social model as their excuse. The most obvious example of this is Deaf people who oppose the practice of cochlear implantation, and look down on (or, especially with young people, sometimes frankly bully) those who choose to have implants, because they're seen to be putting Deaf culture at risk. There are many less overt examples where people are not even aware that they're exhibiting this behaviour, but that doesn't mean it's not oppressive.

    Public policy is even worse. A quite deliberate narrative has been employed that paints disabled people, and especially those with less visible impairments, as benefit scroungers. As a direct result, many disabled people have died through their benefits being cut – often as a result of suicide, but sometimes through trying to work when they're seriously ill, and sometimes from a combination of illness and poverty, e.g. the diabetic man who died because he had no money for electricity and couldn't keep his insulin cool without a working fridge.

    Disability hate crime has also spiralled. It's not difficult to convince people who're working ridiculous hours on very low pay to feed their families that the taxes they pay are being used to support people who could work if they really tried, and that people with impairments that appear trivial are given preferential treatment. This is exactly what has happened.

    None of this was ever intended by the social model – it's partly the result of the financial system being run particularly badly in recent years, followed by a disastrous government response – but nevertheless, this is what has come out of it. It's not that the model has failed, more that it has been failed, but for too many disabled people the net result is the same.
     
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  10. imreallytired

    imreallytired heyyy how's it goin

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    that's all definitely true, for sure, but i don't think any of it can be blamed on the social model by any stretch of the imagination, as it's still a fringe theory only known about among a small niche of disabled people. i don't think that the fact that ableism is still a major deal means that the theory among activists is necessarily wrong, just that moving from theory to structural changes in society is an spectacularly difficult thing in general.
     
  11. lior

    lior Senior Member

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    Thank you so much @Moof @imreallytired @boombachi for your insights... I very much value them.

    YES - well put.

    Great name - googling that!

    Revelation. You're so right, I didn't think of it this way.
    The lack of research funding for ME treatments is what I'm most resentful about. This is something that is within people's power to change.



    In my experience, many people might know a concept (eg feminism) but not many of them will be fully informed about the history and the breadth of what the concept affects (eg not many of my feminist friends my age understand assertiveness, which was a big deal in the 1970s in feminism). And then, this affects how the concept is applied.

    Maybe it's the same kind of thing with the social model. Maybe people are missing bits of information, with which they could better apply the social model? I'm sure that there are people that don't understand that some people want to be fixed because it doesn't fit with their experience.

    I don't know if it's always about forgetting - it might be about not knowing in the first place. There is a huge lack of education around disability.

    I didn't know about the social model until a year in to being ill. I wouldn't have known about disability activism if it wasn't for my interest in feminism and LGBT+ politics. The concept that society is disabling was totally new to me. I bet there's still SO MANY people, able and otherwise, who would find it useful to know about that concept - maybe it's what will make the difference between having ramps and not having ramps.

    We need to keep sharing knowledge. That's the way that things can evolve. You peeps are gifted in how you talk about these things. Keep going!! :)

    @Moof I totally love your action list. Do you have enough places that you are sharing it? Have you thought about putting it on The Mighty or another disability blog?
     
  12. lior

    lior Senior Member

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    Maybe you can work on setting boundaries with your lady. Maybe not doing that is not honouring yourself?

    I'm not clear on how what you said fits in this conversation - am I missing something?

    I try to stay within my limitations too - otherwise (as has happened in the past week) all hell breaks loose. Today is day 3 in bed.
    I suppose the way 'society' could have helped me was by coming to my house instead of making me go out for benefits appointments, or even making the whole system go online so those appointments would be redundant. And also delivering supermarket food for free.
     
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