3 ms·

The Disability Gulag (2003)

19 points by luu 11y ago

brudgers 11y ago
Date: 2003.
- dang 11y ago
  Thanks; added.
stevetrewick 11y ago
This resonates. When my vision problems were first diagnosed (~1976, UK) my parents were explicitly told not to 'make too much fuss'about it or I would be taken away and placed in 'special' care. Being stealth mainstreamed came with its own baggage of course, though perhaps mercifully I was unaware of this Faustian bargain until recently. I was lucky, I learned enough 'hacks' to pass for 'normal' most of the time which saved me from the thing that makes the gulag in its many forms so awful, which is that many people, even the kindest most well meaning people, have a predictable first response to almost any kind of disability or serious illness which is to immediately strip an individual of some of their agency. There's a spectrum from over solicitous behaviour all the way through to making people shit in a pan where everyone can see but it all comes from the same place. /narcissistic navel gazing Oh, pro tip: kinda covered in the article, but subtly. If you really want to piss off someone who has a disability, call them 'inspiring' to their face. Bonus points if you squeeze a shoulder and wrinkle up your face. Surprised me too.
jbob2000 11y ago
Great article, loved the bits about making the senators uncomfortable, haha. My significant other works in the field of disability care. It's chronically underfunded, but one of the main issues as explained to me is the quality of the labour pool. It's hard to find respectable people who are OK with cleaning poop and inserting catheters and are also OK with working shifts, sometimes 12 hour ones. And then doing that for minimum wage. So when I read something like "...they still can't select their own assistants or decide where they live or with whom." I am tempted to think that it's not the fault of the aid organizations. They're trying to make the best of their finances and the labour they have available to them.
- stevetrewick 11y ago
  Somewhat, yes. My own SO works in post 16 education, at the college their is a vocational 'health and care' track. These are the people who will credentialed to work in state sponsored or provided care. I would not want many of them to look after any one I cared for. I think part of the point the article is making RE this is that given (amongst other things) the variable quality of this labour pool (and the regulation it attracts), the ability to select outside of it - difficult as this may be - is valued.
  - mjevans 11y ago
    I think this is partly a knowledge problem. People don't have knowledge that this even really exists, or what the expenditures they're asked to fund are actually providing (or not providing as the case might be). A transparent (open) budget from taxes to payment might help, as well as an easy way to compare the typical compensation for this task to others in society. At that point a more informed, and hopefully more humane, decision can be reached.
  - jbob2000 11y ago
    > the ability to select outside of it - difficult as this may be - is valued My point is that you can't select outside of the labour pool. The same person who is hired by the state to perform care is the same person that a private company hires to provide care. Both entities hire from the same labour pool. As well, competent care providers are often promoted out of the "front-line" work, leaving the less skilled ones behind. Not only that, but allowing people to choose their care providers can lead to inefficient use of resources. Rather than having one person service a home of 5 individuals, you may end up with 5 people servicing a home. But there are many inefficiencies in the way care is currently provided, so perhaps the expenses could be made up in other areas. And perhaps an individual given more autonomy may function better and thus need less care.

19 points by luu 11y ago

brudgers 11y ago

Date: 2003.

dang 11y ago
Thanks; added.

stevetrewick 11y ago

This resonates. When my vision problems were first diagnosed (~1976, UK) my parents were explicitly told not to 'make too much fuss'about it or I would be taken away and placed in 'special' care. Being stealth mainstreamed came with its own baggage of course, though perhaps mercifully I was unaware of this Faustian bargain until recently. I was lucky, I learned enough 'hacks' to pass for 'normal' most of the time which saved me from the thing that makes the gulag in its many forms so awful, which is that many people, even the kindest most well meaning people, have a predictable first response to almost any kind of disability or serious illness which is to immediately strip an individual of some of their agency. There's a spectrum from over solicitous behaviour all the way through to making people shit in a pan where everyone can see but it all comes from the same place. /narcissistic navel gazing Oh, pro tip: kinda covered in the article, but subtly. If you really want to piss off someone who has a disability, call them 'inspiring' to their face. Bonus points if you squeeze a shoulder and wrinkle up your face. Surprised me too.

jbob2000 11y ago

Great article, loved the bits about making the senators uncomfortable, haha. My significant other works in the field of disability care. It's chronically underfunded, but one of the main issues as explained to me is the quality of the labour pool. It's hard to find respectable people who are OK with cleaning poop and inserting catheters and are also OK with working shifts, sometimes 12 hour ones. And then doing that for minimum wage. So when I read something like "...they still can't select their own assistants or decide where they live or with whom." I am tempted to think that it's not the fault of the aid organizations. They're trying to make the best of their finances and the labour they have available to them.

stevetrewick 11y ago
Somewhat, yes. My own SO works in post 16 education, at the college their is a vocational 'health and care' track. These are the people who will credentialed to work in state sponsored or provided care. I would not want many of them to look after any one I cared for. I think part of the point the article is making RE this is that given (amongst other things) the variable quality of this labour pool (and the regulation it attracts), the ability to select outside of it - difficult as this may be - is valued.
- mjevans 11y ago
  I think this is partly a knowledge problem. People don't have knowledge that this even really exists, or what the expenditures they're asked to fund are actually providing (or not providing as the case might be). A transparent (open) budget from taxes to payment might help, as well as an easy way to compare the typical compensation for this task to others in society. At that point a more informed, and hopefully more humane, decision can be reached.
- jbob2000 11y ago
  > the ability to select outside of it - difficult as this may be - is valued My point is that you can't select outside of the labour pool. The same person who is hired by the state to perform care is the same person that a private company hires to provide care. Both entities hire from the same labour pool. As well, competent care providers are often promoted out of the "front-line" work, leaving the less skilled ones behind. Not only that, but allowing people to choose their care providers can lead to inefficient use of resources. Rather than having one person service a home of 5 individuals, you may end up with 5 people servicing a home. But there are many inefficiencies in the way care is currently provided, so perhaps the expenses could be made up in other areas. And perhaps an individual given more autonomy may function better and thus need less care.