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Article: Not everyone with a disability wants a cure – nor should we expect them to

Discussion in 'General ME/CFS News' started by Andy, Dec 4, 2017.

  1. Andy

    Andy Administrator Staff Member

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    Author has ME/CFS.
    http://www.smh.com.au/lifestyle/hea...should-we-expect-them-to-20171201-gzx8ys.html
     
  2. EzzieD

    EzzieD Established Member (Voting Rights)

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    Strange article - makes some good points but, for me at least, impossible to relate to the sentiment that some disabled people don't want to get better. Such as:
    Statements like that are unfortunately fuel for the BPS crowd's belief that for those of us who don't get better, it's because we really don't want to. Arrgghh.
     
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  3. Woolie

    Woolie Senior Member (Voting Rights)

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    I would guess that this idea is totally foreign to virtually all people with ME. And all those with dementia. And all those with cancer. And all those with MS. And all those with severe mental illness.

    I understand that there is a community associated with some disabilities, that people would not want to lose. I know many deaf people feel they would lose something socially if they could suddenly hear. This sort of idea seems only to apply to people in otherwise good health with a perceptual or a motility problem, and that aren't in much discomfort and that have a really high quality of life.
     
  4. Trish

    Trish Senior Member (Voting Rights)

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    I think the article is good. I think the author makes it clear that in cases like herself where she was healthy and not disabled until she got ME, she would love there to be a cure, but in the meantime she needs to focus on making the best of what life has thrown at her, rather than focusing on a future that might never come.

    On the other hand she is expressing understanding for some people who are born with disabilities, and who have no realistic prospect of becoming able bodied who have accepted that this is who they are, and do not want to change, even if it were possible.

    Perhaps disability is the wrong word to use for ME. Disabling chronic illness describes my situation better.

    ME is very different from, for example, the comedian who I listened to on the radio the other day who was born with a deformed foot that was amputated, so he wears a prosthesis, but he is otherwise healthy. The two situations are worlds apart. He does not feel it has held him back in any way, and he makes it part of his comedy routine.
     
    Last edited: Dec 4, 2017
  5. MeSci

    MeSci Senior Member (Voting Rights)

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    I think that the article was quite clear - the writer of the article was keen to benefit from any gains that might be made by medicine (or otherwise), whereas the person interviewing her was not, as detailed in this linked article by her interviewer, Stella Young: http://www.abc.net.au/rampup/articles/2011/06/02/3233648.htm

    It was explained why she wasn't, and her questioning why others were.

    The price was too high.

    The writer of the ME/CFS article does question the excessive focus on getting well, and the plethora of junk science that is thrown at us, and she also asks people to back off and let her find her own way.

    I like her last para:

    "Weighing up the cost versus reward of a disability management strategy is a very personal endeavour, and it would be nice to be able to explore the options in an environment where diversity was actively embraced and bodies of all kinds equally valued."
     
  6. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

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    When @Pickle was little she had glue ear, a deaf friend was very angry with me for getting her grommets. Her reasoning was that deafness is a peaceful state and imposing sound upon her was assault. I could understand where she was coming from as she'd been born partially deaf, but it didn't make sense re. Pickle who had frequent pain and ear infections.
     
  7. Wonko

    Wonko Senior Member (Voting Rights)

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    I'm not entirely sure what to make of it, I agree with it, but I don't.

    I strongly suspect that the drive to be healthy is built in, to each person, and that, at least on one level, as a charitable interpretation, this is the source of "society's" obsession with attempting to manipulate all members of society into projecting an image of health.

    A less charitable, but still charitable, interpretation is that non productive/contributing members can be seen as a threat to the viability of a society, when resources are in short supply, most people "feel" this, it's not necessarily a conscious thing, it's hardwired, or at the very least, firmwired. And what are we constantly having shoved down our throats by the media, that there's not enough money, welfare, health and pensions are unaffordable, and "these people" aren't actually that ill anyway. So there aren't enough resources, we can't carry them through the lean times, blah blah blah - and of course no government ever says we have loads of money now, everything's fine, so "society" is constantly in not enough resources, we must all pull together to make it through the hard times, that means you, get healthy, we can't afford you if you're not.

    Then of course there are the self serving manipulative gits, who make a living out of creating and maintaining this perception.

    In all but the last case the drive to make people healthy comes from our biology, and has been necessary in the past to ensure group survival.

    The much more recent cases of chronic, lifelong, illness, we simply aren't built for that, we haven't been programmed to deal with it - so most default to what we have been programmed with, we deal with it as if it was a "routine" illness, look after people for a bit, they either get better or they die, either way the problems solved.

    IMO adapting, personally, to current limitations is, and was, sensible. I'm now getting on a bit, I've been ill for nearly 3 decades, even if they come up with a cure tomorrow it's not going to help me actually succeed in life, there are millions of healthy people who can't, with a 30 year lag what chance have I got. That doesn't mean I wouldn't take a guaranteed wonder drug if it was offered to to me, it doesn't mean I don't want to not be a crippled imbecile. It does mean I have concerns about my independant viability if suddenly cured.

    So, I agree with the article, and the same time as not ;)
     
  8. EzzieD

    EzzieD Established Member (Voting Rights)

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    Yes, that was basically my take on it too. I agree with the sentiment that everyone should feel valued whatever their disability. But the statement that some disabled people don't want to be cured was really jarring, and I suspect that will be extrapolated in healthy/non-disabled readers' minds to apply to more than just some disabled people.
     
  9. Justy

    Justy Senior Member (Voting Rights)

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    This is something i have thought about a lot in the past year or so. I joined a facebook group for PW Lyme, many had an M.E dx as well or instead of. The focus on getting well and seeking 'treatment' was so great that i felt i had to push myself to join in with this also. On some level i bought into this idea and ended up becoming a lot more ill, with less money.

    I no longer actively seek treatment, changing my main focus onto living my life the best way i can and getting correct dx.

    I had to leave the group as the 'dont give uo, keep going, you will get there, push through the pain/reactions/herx and youll be better was undermining my mental health.
     
  10. TiredSam

    TiredSam Moderator Staff Member

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    I read the headline and clicked on the link expecting to read some wierd stuff I could have a good rant about (which I was looking forward to actually). However the article makes complete sense to me and I agree with it. Very good. Now I'll have to find something else to rant about.
     
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  11. Woolie

    Woolie Senior Member (Voting Rights)

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    :rofl::rofl::rofl::rofl:
     
  12. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I think this is interesting because it highlights the conflict in society as others have mentioned.

    I think that there is something about adversity leading to learning something about yourself and shaping how you perceive the world. I was ill as a child with what some would call a disability. This affected me badly and affected all aspects of my then short life. I learnt about predjudiced behaviour very early on (teachers refusing to teach me due to my condition, and in one case physically relocating me and my desk into the unheated coat and shoe room outside the class room for 2 years). I pretty much lost a big chunk of my childhood due to my illness.

    My treatment led to an improvement as an adult but I am still affected by this condition today. Does this make me regret what happened? I have asked myself this question many times. On the whole I come up with the same thing. You can't change the past, it has made me who I am.

    I suffer predjudiced behaviour today from this condition so I just don't tell anybody about it. It's easier. Do I want people to be less prejudiced? ...of course, but they aren't going to change because I want them to. I just adopt a superiority complex to these people. I am better than them because my eyes are opened to this behaviour and it is uncivilised and base and very wrong. My disease has made me look at the world differently I suppose.

    When I got diagnosed with ME/CFS, this challenged my outlook again. I do feel that I am more prepared for prejudice, but my coping mechanisms as an adult are not relevent since I can't hide this as easily from others. With the ME I have much more restrictions and I am constantly reminded every minute of the day that I have it. If there was a cure for this I would take it, since I haven't worked out how I can live a fulfilled life with it yet (I'm 5 years in so I'm a newbie).

    I know I want some of my old life back...but doesn't everybody want that as they age? I think it's more about finding a way to live as opposed to coping, but haven't found the balance. I wonder how I will feel in 5 years time (particularly if I deteriorate)? At the moment it's cure all the way with regards to my ME.
     
  13. Valentijn

    Valentijn Moderator Staff Member

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    To varying extents, rejecting your negative past experiences requires rejecting your current situation and your current self that resulted from those experiences. Accordingly it can imply a certain level of self-loathing to reject any formative experience.

    I'd still opt for having no ME, and remaining clueless about the disease and science in general :p
     
  14. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    But if one is sufficiently debilitated, employment is not a possibility. Without employment, clothing, food, shelter, safety, dignity, and autonomy are all put at risk.

    When you become isolated, as is common with severe disability, you are not needed or appreciated by anyone.
     
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  15. Subtropical Island

    Subtropical Island Established Member (Voting Rights)

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    :(:hug:
     
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  16. Subtropical Island

    Subtropical Island Established Member (Voting Rights)

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    Thank you TiredSam, I wasn't going to read it (still need to be selective on days when I have reading spoons) but, you're right, good article.
    Sorry @Andy I ever doubted you. Thanks.
     
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