Comments on: Blogging Against Disablism Day 2008 http://blog.xcski.com/2008/05/01/blogging-against-disablism-day-2008 Everything I used to bore people on newsgroups and mailing lists with, now in one inconvenient place. Sat, 19 Jul 2008 17:23:12 +0000 http://wordpress.org/?v=2.6 By: Ruth http://blog.xcski.com/2008/05/01/blogging-against-disablism-day-2008#comment-88660 Ruth Fri, 02 May 2008 02:05:19 +0000 http://blog.xcski.com/?p=1334#comment-88660 I really think chronic pain is an overlooked subject - and glad you wrote about it for BADD. There are quite a few people who have chronic pain who I know and they don't talk about it like you have here - so openly. btw your insights about using a wheelchair are validating. Glad I found your blog! I really think chronic pain is an overlooked subject - and glad you wrote about it for BADD. There are quite a few people who have chronic pain who I know and they don’t talk about it like you have here - so openly. btw your insights about using a wheelchair are validating. Glad I found your blog!

]]> By: tigtog http://blog.xcski.com/2008/05/01/blogging-against-disablism-day-2008#comment-88645 tigtog Thu, 01 May 2008 21:08:37 +0000 http://blog.xcski.com/?p=1334#comment-88645 I had chronic neck pain for over a year until I recently stopped taking the medication that was, unbeknownst to me, exacerbating what I thought was just an unwelcome progression in the deterioration around an old neck injury. The degree to which that sucked was immense, but at least I could walk and move fairly well, although I certainly had to ration my pain-spoons as you said. <blockquote>It’s like the people who break an ankle, and from their few weeks on crutches claim that they “know” what it’s like to have a mobility disability.</blockquote> During my undergraduate days in the physiotherapy faculty, we had *one 24 hour period* where we all had to simulate a disability and go about our day and night using the mobility aids associated. Some of us had plaster casts and/or crutches, some of us had neck braces, some of had leg splints and canes, some of us had wheelchairs. It was illuminating, and worth doing as part of our study, but I know that most of us "cheated" in our own homes, even if it was only not grabbing the wheelchair orcrutches or neck brace when we got up to go to the toilet overnight. It certainly couldn't give us the knowledge of a life of managing disability. I had chronic neck pain for over a year until I recently stopped taking the medication that was, unbeknownst to me, exacerbating what I thought was just an unwelcome progression in the deterioration around an old neck injury. The degree to which that sucked was immense, but at least I could walk and move fairly well, although I certainly had to ration my pain-spoons as you said.

It’s like the people who break an ankle, and from their few weeks on crutches claim that they “know” what it’s like to have a mobility disability.

During my undergraduate days in the physiotherapy faculty, we had *one 24 hour period* where we all had to simulate a disability and go about our day and night using the mobility aids associated. Some of us had plaster casts and/or crutches, some of us had neck braces, some of had leg splints and canes, some of us had wheelchairs. It was illuminating, and worth doing as part of our study, but I know that most of us “cheated” in our own homes, even if it was only not grabbing the wheelchair orcrutches or neck brace when we got up to go to the toilet overnight. It certainly couldn’t give us the knowledge of a life of managing disability.

]]> By: David Gerard http://blog.xcski.com/2008/05/01/blogging-against-disablism-day-2008#comment-88640 David Gerard Thu, 01 May 2008 20:09:33 +0000 http://blog.xcski.com/?p=1334#comment-88640 And of course chronic pain also makes one into a bubbly and outgoing person who doesn't scare their friends off with snappiness <i>at all</i>. cough. And of course chronic pain also makes one into a bubbly and outgoing person who doesn’t scare their friends off with snappiness at all. cough.

]]> By: lauredhel http://blog.xcski.com/2008/05/01/blogging-against-disablism-day-2008#comment-88608 lauredhel Thu, 01 May 2008 14:22:14 +0000 http://blog.xcski.com/?p=1334#comment-88608 I reckon chronic pain is like long-hours shiftwork. You can try to explain what it's like to people who have never experienced it, and they can try to understand and say, "That really sucks", but there's a level on which they can't understand. Not really. They can read and learn (yay BADD, it's a great resource for able-bodied and people with disabilities alike). They may try to extrapolate from acute-pain experiences they've had, but the comparison just doesn't work. It's like the people who break an ankle, and from their few weeks on crutches claim that they "know" what it's like to have a mobility disability. (Is there a comparison to be drawn with blackface here?) They're trying, and that's way better than not trying (especially in terms of noticing and reducing accessibility barriers), but the experiences aren't fully comparable. Being in pain constantly for an indefinite amount of time, having pain that escalates instead of healing, never knowing how bad it can get before you won't be able to stand it anymore; these are features unique to the chronic pain and/or disability experience. Which musing I guess is my way of saying "That really sucks." I won't that I know what your pain experience must be like, because it's different from mine, though the pain-spoons side of things rings bells over here. Thanks for speaking out - the more drops in this big electronic empathy bucket, the better. I reckon chronic pain is like long-hours shiftwork. You can try to explain what it’s like to people who have never experienced it, and they can try to understand and say, “That really sucks”, but there’s a level on which they can’t understand. Not really. They can read and learn (yay BADD, it’s a great resource for able-bodied and people with disabilities alike). They may try to extrapolate from acute-pain experiences they’ve had, but the comparison just doesn’t work. It’s like the people who break an ankle, and from their few weeks on crutches claim that they “know” what it’s like to have a mobility disability. (Is there a comparison to be drawn with blackface here?)

They’re trying, and that’s way better than not trying (especially in terms of noticing and reducing accessibility barriers), but the experiences aren’t fully comparable. Being in pain constantly for an indefinite amount of time, having pain that escalates instead of healing, never knowing how bad it can get before you won’t be able to stand it anymore; these are features unique to the chronic pain and/or disability experience.

Which musing I guess is my way of saying “That really sucks.” I won’t that I know what your pain experience must be like, because it’s different from mine, though the pain-spoons side of things rings bells over here. Thanks for speaking out - the more drops in this big electronic empathy bucket, the better.

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