I wanted to write a long post about this, but am, it turns out, simply too busy. (Hopefully, fairly soon i will be a lot less busy, and will be able to get back to blogging properly. Apologies for my relative absence in the last couple of months.) Anyway, my friend Clair has posted on it, more succinctly than i could.
There's a hell of a lot here to unpack about what exactly constitutes "medical care" versus "social care", and the construction of the whole concept of "care" itself, which i'll have to return to in another post. Suffice to say for now, this is the sort of utterly vile injustice that routinely goes unquestioningly accepted, not even recognised as a "problem", because of the level of power and... i'm not even sure if there's a word for this, but... standing as something that simply Is, immutable and unquestionable as the laws of gravity, despite its being entirely socially constructed... that medical authority has in Western society. There's a paternalism at the heart of so-called "medical ethics" that shudders me so deeply that i would honestly prefer it if doctors and nurses actually were the entirely amoral beings, viewing the bodies of their patients only as a mechanic views the vehicle or other machine ze is working on, that the "pro-life" movement (and often the bits of the disability rights movement mistakenly allied with it, as in my last post) likes to portray it as. The irony is that that "scaremongering", for me, would make the medical profession less scary if it was true.
And i'm already rambling far away from the topic only a couple of paragraphs in, so i'm going to leave it here for now. There is something *big* happening tomorrow, which has been the main reason for my excessive busy-ness and lack of time for blogging recently. My next post will hopefully be a report on it. After that, i should be able to write all the posts i have been intending to for weeks if not months (in a couple of cases, arguably years)...
Also, hopefully i'm finally going to get round to making the changes and updates to my blog that i have been wanting to make for ages relatively soon (the changes in colour and layout made a few months ago were only intended to be a first stage, and possibly not even the final colours). This will include updating the blogroll and other sidebar links as well as trying to turn the look into something i'm satisfied with, so if you're reading this and you have a blog or site that you'd like me to link to, please let me know...
Also, this (by the inimitable cripchick, whose tech and image editing skills, as well as many, many other talents and qualities, i wish i had) is awesome. Go read it. Now.
Sunday, March 29, 2009
Sunday, March 22, 2009
There is an alternative
While idly following links today, i came across this post on religion and end-of-life care at Respectful Insolence...
RI is well-respected as an "anti-quackery" science blogger, and gets a lot of props from the autism community for opposing the "vaccines cause autism" conspiracy theory that is believed in by a hell of a lot of the nastier curebies out there (see ABFH for up-to-date info on that). I believe ze is also a parent of an autistic child and supporter of acceptance not cure, so although i haven't read much by hir, i definitely respect hir.
I don't have any problem at all with the post itself. I am, however, very scared by some of the comments...
The Perky Skeptic posted:
My father just had a stroke and needs round-the-clock care that neither my family (I have to care for my autistic son) nor my brother's family (with two-month-old baby) can provide. We cannot afford private care and he will have to go into a nursing home when he gets discharged from the hospital.
The worst thing, the most horrifying part, is that his mental faculties are intact. He can still talk ballet and opera with me, but his body has given out. I've seen the way the hospital staff treats him (like a five-year-old), and it sends chills up my spine to think how much less respect and care he will receive in a Medicaid-paid-for nursing home.
All this has made me change my mind on end-of-life issues. Medical science is too good at saving lives for my comfort. I would rather die from a stroke than have 911 called and end up surviving, like that, under those circumstances. Seriously-- not only do I want the most aggressive DNR order possible, I also really don't want emergency medical services if I'm over the age of 80. Is there a medalert bracelet for that?
The most chilling thing about this for me is that not only is independent living through personal assistance apparently not an available option for The Perky Skeptic's father, but that neither TPS nor hir father even seems to be aware of the possibility of it. The horrific assumption is that, for someone who has just acquired a physical impairment meaning they require assistance with bodily functions or daily living tasks, the only options (in the absence of immediate family members who are able and willing to completely drop their own lives to provide that assistance) are an institution or death.
This is also about as clear an illustration you can get that - as i thought i'd said here, but re-reading it apparently didn't - the thing that is so glaringly missing from the "right-to die debate" is that many disabled people wouldn't want to die if they had the necessary assistance to live. The "helplessness" and loss of control over one's own life that many if not most people are led to believe comes inevitably with impairment is not inevitable - it's only the norm where a disablist society does not value the autonomy and quality of life of disabled people and does not provide them with the means to retain them. Would TPS still feel that ze would rather die than live as a physically impaired person if ze could be assured that accessible housing and funding to employ personal assistants were available to enable hir to retain choice and control over hir own life, rather than spending the rest of hir life deprived of all liberty and agency in a totalitarian institution?
Somewhat further down the thread, Adrienne said:
As an ex-Catholic and former Opus Dei school student, let me add that I have noticed a belief among the fringiest of the religious right fringe that "palliative care" is basically a synonym for passive euthanasia. They believe "DNR" orders basically allow you to be put down or not given hydration/nutrition.
Even worse, I have seen some wingnuts propagate the belief that doctors are eager to declare the seriously or terminally ill in a "vegetative state" so they can grab these people's organs.
Judie Brown of the American Life League, which is so "pro-life" as to oppose abortions even when the mother's life is in danger, actively warns people not to be organ donors due to her belief that doctors routinely hasten along brain death in comatose people who have volunteered to be organ donors just so these doctors can take their organs while their heart still beats.
and then quoted a disabled writer on a Catholic anti-euthanasia site:
While a hospital is a place of healing and care, it is also a potential place of danger for those of us who are disabled, elderly, or chronically ill. Whenever I have been admitted to a hospital, I experience a certain apprehension, knowing that medical caregivers may "opt out" of providing me life-saving medical treatment if they decide my quality of life is not sufficient to justify their effort and expense.
...
Everyone is just an accident or illness away from joining me in the bulls-eye of the growing threat of euthanasia. Even now, many senior citizens are pressured to sign "Do Not Resuscitate" orders when admitted to the hospital. They are devalued because of age. As our Medicare and Medicaid systems lurch from one fiscal crisis to the next, the pressure increases to save money by denying medical care to those who are most expensive. That includes me along with others living with either physical or mental disabilities, or those with chronic illnesses whatever their ages.
Now, i have no love at all for the Catholic church, and absolutely despise the anti-feminist, anti-bodily autonomy, anti-freedom so-called "pro-life" movement, and one of the things that angers me most of all is their attempted co-option of the disability rights movement's concerns about euthanasia, assisted suicide and eugenics (it frustrates me even more that many disability rights activists seem to be happy to go along with that toxic alliance). But... regardless of where he is coming from ideologically, as far as that article goes, Wayne Cockfield is right. This is a society where a DNR order can be placed on an 8-year-old child (publicly for everyone at her school to see, no less), simply because that child is disabled and hir life is judged to be worse than death.
And as for Judie Brown's supposedly "wingnut" claims (and yes, the "American Life League" are a vile, bigoted organisation who i would argue are, in any sense of the word worth using, anti-life... but that doesn't mean anything ever said by any of them is necessarily untrue. A stopped clock is still right twice a day)... ever heard of Ruben Navarro (who, of course, we don't actually often see mentioned by right-wing US Christians... very probably because he was poor and non-white...)?
YES, precisely this kind of thing does happen to disabled people. Once again, the true horror is the fact that the "wingnuts" of the "Religious Right" have - often successfully - co-opted true claims for their own ends, resulting in people on the progressive and anti-religious end of the political spectrum refusing to believe them... and truth once again gets painted as conspiracy.
(There are parallels i could talk about here, such as the distrust of contraceptives in much of the Majority World due to how, and by whom, they have been promoted there, and the dismissal as "conspiracy theory" of very justifiable fears of eugenic and/or imperialist motivation... but i haven't got the time to go into that here...)
It's deeply upsetting and frustrating when the reality of cases like those of Katie Jones and Ruben Navarro is utterly disbelieved by "skeptics" and the left, leaving it to be co-opted by the religious right. Part of me wants to say that the disability rights movement urgently needs to disassociate itself as thoroughly and unambiguously as possible from the right-wing "pro-life" lobby as possible, but another part of me wants to point out that it is arguably the failure of the wider "progressive" political sphere or the "reality-based community" in the sciences to take notice of disabled people's valid concerns about medical practice and power - instead often jumping to ridicule anyone with any fear of medical hegemony as "anti-rational" - which has caused the serious risk of the disability rights movement being driven into the arms of viciously anti-rational and anti-libertarian religionists (i'll once again link here to thauts's awesome piece "In Which I Am Apparently Not Pro-Choice").
In many ways we are between the horns of a dilemma here - religious totalitarianism on one side, secular medical totalitarianism on the other - with the added complication that many if not most people simply don't recognise the latter, because they don't see that alternatives to a life of total lack of autonomy or a "merciful" death even exist. ("Oppression-blindness" is almost certainly a factor here... other anti-oppression bloggers have dealt with this far better than i could, but i'm too tired to find links now. Maybe i'll come back and put some in later...)
Just as the range of options for a person who has just acquired an impairment should not be limited to a nursing home or death, the range of options for a liberation movement dealing with such issues should not be limited to unexamined "rationalism" based on unexaminedly disablist premises or "pro-life" religious authoritarianism. You can't be truly "pro-choice" without access to all the choices...
RI is well-respected as an "anti-quackery" science blogger, and gets a lot of props from the autism community for opposing the "vaccines cause autism" conspiracy theory that is believed in by a hell of a lot of the nastier curebies out there (see ABFH for up-to-date info on that). I believe ze is also a parent of an autistic child and supporter of acceptance not cure, so although i haven't read much by hir, i definitely respect hir.
I don't have any problem at all with the post itself. I am, however, very scared by some of the comments...
The Perky Skeptic posted:
My father just had a stroke and needs round-the-clock care that neither my family (I have to care for my autistic son) nor my brother's family (with two-month-old baby) can provide. We cannot afford private care and he will have to go into a nursing home when he gets discharged from the hospital.
The worst thing, the most horrifying part, is that his mental faculties are intact. He can still talk ballet and opera with me, but his body has given out. I've seen the way the hospital staff treats him (like a five-year-old), and it sends chills up my spine to think how much less respect and care he will receive in a Medicaid-paid-for nursing home.
All this has made me change my mind on end-of-life issues. Medical science is too good at saving lives for my comfort. I would rather die from a stroke than have 911 called and end up surviving, like that, under those circumstances. Seriously-- not only do I want the most aggressive DNR order possible, I also really don't want emergency medical services if I'm over the age of 80. Is there a medalert bracelet for that?
The most chilling thing about this for me is that not only is independent living through personal assistance apparently not an available option for The Perky Skeptic's father, but that neither TPS nor hir father even seems to be aware of the possibility of it. The horrific assumption is that, for someone who has just acquired a physical impairment meaning they require assistance with bodily functions or daily living tasks, the only options (in the absence of immediate family members who are able and willing to completely drop their own lives to provide that assistance) are an institution or death.
This is also about as clear an illustration you can get that - as i thought i'd said here, but re-reading it apparently didn't - the thing that is so glaringly missing from the "right-to die debate" is that many disabled people wouldn't want to die if they had the necessary assistance to live. The "helplessness" and loss of control over one's own life that many if not most people are led to believe comes inevitably with impairment is not inevitable - it's only the norm where a disablist society does not value the autonomy and quality of life of disabled people and does not provide them with the means to retain them. Would TPS still feel that ze would rather die than live as a physically impaired person if ze could be assured that accessible housing and funding to employ personal assistants were available to enable hir to retain choice and control over hir own life, rather than spending the rest of hir life deprived of all liberty and agency in a totalitarian institution?
Somewhat further down the thread, Adrienne said:
As an ex-Catholic and former Opus Dei school student, let me add that I have noticed a belief among the fringiest of the religious right fringe that "palliative care" is basically a synonym for passive euthanasia. They believe "DNR" orders basically allow you to be put down or not given hydration/nutrition.
Even worse, I have seen some wingnuts propagate the belief that doctors are eager to declare the seriously or terminally ill in a "vegetative state" so they can grab these people's organs.
Judie Brown of the American Life League, which is so "pro-life" as to oppose abortions even when the mother's life is in danger, actively warns people not to be organ donors due to her belief that doctors routinely hasten along brain death in comatose people who have volunteered to be organ donors just so these doctors can take their organs while their heart still beats.
and then quoted a disabled writer on a Catholic anti-euthanasia site:
While a hospital is a place of healing and care, it is also a potential place of danger for those of us who are disabled, elderly, or chronically ill. Whenever I have been admitted to a hospital, I experience a certain apprehension, knowing that medical caregivers may "opt out" of providing me life-saving medical treatment if they decide my quality of life is not sufficient to justify their effort and expense.
...
Everyone is just an accident or illness away from joining me in the bulls-eye of the growing threat of euthanasia. Even now, many senior citizens are pressured to sign "Do Not Resuscitate" orders when admitted to the hospital. They are devalued because of age. As our Medicare and Medicaid systems lurch from one fiscal crisis to the next, the pressure increases to save money by denying medical care to those who are most expensive. That includes me along with others living with either physical or mental disabilities, or those with chronic illnesses whatever their ages.
Now, i have no love at all for the Catholic church, and absolutely despise the anti-feminist, anti-bodily autonomy, anti-freedom so-called "pro-life" movement, and one of the things that angers me most of all is their attempted co-option of the disability rights movement's concerns about euthanasia, assisted suicide and eugenics (it frustrates me even more that many disability rights activists seem to be happy to go along with that toxic alliance). But... regardless of where he is coming from ideologically, as far as that article goes, Wayne Cockfield is right. This is a society where a DNR order can be placed on an 8-year-old child (publicly for everyone at her school to see, no less), simply because that child is disabled and hir life is judged to be worse than death.
And as for Judie Brown's supposedly "wingnut" claims (and yes, the "American Life League" are a vile, bigoted organisation who i would argue are, in any sense of the word worth using, anti-life... but that doesn't mean anything ever said by any of them is necessarily untrue. A stopped clock is still right twice a day)... ever heard of Ruben Navarro (who, of course, we don't actually often see mentioned by right-wing US Christians... very probably because he was poor and non-white...)?
YES, precisely this kind of thing does happen to disabled people. Once again, the true horror is the fact that the "wingnuts" of the "Religious Right" have - often successfully - co-opted true claims for their own ends, resulting in people on the progressive and anti-religious end of the political spectrum refusing to believe them... and truth once again gets painted as conspiracy.
(There are parallels i could talk about here, such as the distrust of contraceptives in much of the Majority World due to how, and by whom, they have been promoted there, and the dismissal as "conspiracy theory" of very justifiable fears of eugenic and/or imperialist motivation... but i haven't got the time to go into that here...)
It's deeply upsetting and frustrating when the reality of cases like those of Katie Jones and Ruben Navarro is utterly disbelieved by "skeptics" and the left, leaving it to be co-opted by the religious right. Part of me wants to say that the disability rights movement urgently needs to disassociate itself as thoroughly and unambiguously as possible from the right-wing "pro-life" lobby as possible, but another part of me wants to point out that it is arguably the failure of the wider "progressive" political sphere or the "reality-based community" in the sciences to take notice of disabled people's valid concerns about medical practice and power - instead often jumping to ridicule anyone with any fear of medical hegemony as "anti-rational" - which has caused the serious risk of the disability rights movement being driven into the arms of viciously anti-rational and anti-libertarian religionists (i'll once again link here to thauts's awesome piece "In Which I Am Apparently Not Pro-Choice").
In many ways we are between the horns of a dilemma here - religious totalitarianism on one side, secular medical totalitarianism on the other - with the added complication that many if not most people simply don't recognise the latter, because they don't see that alternatives to a life of total lack of autonomy or a "merciful" death even exist. ("Oppression-blindness" is almost certainly a factor here... other anti-oppression bloggers have dealt with this far better than i could, but i'm too tired to find links now. Maybe i'll come back and put some in later...)
Just as the range of options for a person who has just acquired an impairment should not be limited to a nursing home or death, the range of options for a liberation movement dealing with such issues should not be limited to unexamined "rationalism" based on unexaminedly disablist premises or "pro-life" religious authoritarianism. You can't be truly "pro-choice" without access to all the choices...
Friday, March 20, 2009
Call for papers: Anarchism and Sexuality
Apologies for long absence from this blog. I've been stupendously busy, and have also been unhappy with the look/layout of it and wanting to make some changes that i haven't had the time or effective knowledge to do. Anyway, i've half-written quite a few posts that i haven't had time to finish, so hopefully i'll finish some of them this weekend - i don't want this blog to die off, but my intent to post more frequently in 2009 doesn't seem to have become a reality...
I only just found out about this call for papers, so apologies also for only posting it now when it went out last June and the deadline for submissions is 15th April. Anyway, thought some people might be interested...
(I've been reading a lot of zines recently, as things which it's easy to read in little snippets, for example while on the bus (i've been on a hell of a lot of buses recently...) and several have been about polyamory and open relationships. I've been particularly inspired on certain levels by the connections several of them have drawn between redefining relationship structures and the struggle against statism and capitalism (which is really, i guess, the flipside of the connections authors such as Maria Mies and Silvia Federici have drawn between the growth of capitalism and the development of patriarchy, monogamy and the nuclear family). There are things i have found very problematic as well, but that i really haven't got time to write about here. I will have to do some posts on my thoughts on those zines at some point tho...)
Anarchism & Sexuality
a special issue of Sexualities: Studies in Culture and Society
Anarchism has long played a role in the politics of sexuality. Embodied in the historic figures of Emma Goldman, Oscar Wilde, Edward Carpenter & Daniel Guérin or in social movements including ACT-UP, Mujeres Libres & Greenham Common Women's Peace Camp, the erotic and the anarchic have come together. Meanwhile, recent years have seen a revival of anarchist scholarship intertwined with the global rise of what some commentators have called "the movement of movements," characterised by horizontal forms of organisation and the practice of anarchist ethics (Gordon, 2008). These movements against neoliberalism include within them alternatives to increasingly corporate-friendly & state-centred lesbian and gay politics. This special issue aims to deepen the attention of scholarship to these and other (potential) intersections of anarchism and sexuality.
Prospective authors are invited to consider the following themes (and to offer their own):
* the sexual politics of anarchisms, libertarian socialisms and autonomous feminisms
* sexuality, gender, race, class & ecology in anarchist & anarchic movements
* queering anarchism
* autonomous queer spaces
* the sexual politics of hierarchy
* sexuality and cultural activism
Deadline for paper submissions: 15 April 2009
For author guidelines, see http://sexualities.sagepub.com
For an extended bibliography on Anarchism & Sexuality, see http://www.anarchist-studies-network.org.uk/ReadingLists/Sexuality
Submissions and queries to Jamie Heckert: Jamie.Heckert@gmail.com
__________
Gordon, Uri (2008) Anarchy Alive! Anti-Authoritarian Politics from Practice to Theory (London/Ann Arbor: Pluto)
I only just found out about this call for papers, so apologies also for only posting it now when it went out last June and the deadline for submissions is 15th April. Anyway, thought some people might be interested...
(I've been reading a lot of zines recently, as things which it's easy to read in little snippets, for example while on the bus (i've been on a hell of a lot of buses recently...) and several have been about polyamory and open relationships. I've been particularly inspired on certain levels by the connections several of them have drawn between redefining relationship structures and the struggle against statism and capitalism (which is really, i guess, the flipside of the connections authors such as Maria Mies and Silvia Federici have drawn between the growth of capitalism and the development of patriarchy, monogamy and the nuclear family). There are things i have found very problematic as well, but that i really haven't got time to write about here. I will have to do some posts on my thoughts on those zines at some point tho...)
Anarchism & Sexuality
a special issue of Sexualities: Studies in Culture and Society
Anarchism has long played a role in the politics of sexuality. Embodied in the historic figures of Emma Goldman, Oscar Wilde, Edward Carpenter & Daniel Guérin or in social movements including ACT-UP, Mujeres Libres & Greenham Common Women's Peace Camp, the erotic and the anarchic have come together. Meanwhile, recent years have seen a revival of anarchist scholarship intertwined with the global rise of what some commentators have called "the movement of movements," characterised by horizontal forms of organisation and the practice of anarchist ethics (Gordon, 2008). These movements against neoliberalism include within them alternatives to increasingly corporate-friendly & state-centred lesbian and gay politics. This special issue aims to deepen the attention of scholarship to these and other (potential) intersections of anarchism and sexuality.
Prospective authors are invited to consider the following themes (and to offer their own):
* the sexual politics of anarchisms, libertarian socialisms and autonomous feminisms
* sexuality, gender, race, class & ecology in anarchist & anarchic movements
* queering anarchism
* autonomous queer spaces
* the sexual politics of hierarchy
* sexuality and cultural activism
Deadline for paper submissions: 15 April 2009
For author guidelines, see http://sexualities.sagepub.com
For an extended bibliography on Anarchism & Sexuality, see http://www.anarchist-studies-network.org.uk/ReadingLists/Sexuality
Submissions and queries to Jamie Heckert: Jamie.Heckert@gmail.com
__________
Gordon, Uri (2008) Anarchy Alive! Anti-Authoritarian Politics from Practice to Theory (London/Ann Arbor: Pluto)
Subscribe to:
Posts (Atom)