India became the seventh (or could just be sixth) country to ratify the UN Convention on the Rights of Persons with Disabilities on October 1, 2007! Check out the map with the current signatories and ratifications here...
http://www.un.org/esa/socdev/enable/documents/map031007.jpg
I was very pleasantly stunned to be honest...I did not expect India to ratify so soon. Proved me wrong there...
The real work begins now though. India has taken on a huge challenge as our current legislative and social infrastructure is seriously lagging behind the standards put into the Convention. The Indian delegation had raised several concerns during the deliberations of the Articles of the Convention, not the least of which was that the country just does not have the resources to provide and ensure the the kinds of measures the Convention demands.
I am of course extremely pleased that we did ratify the Convention. It gives some teeth to advocates and their demands for change. We will need to radically change a lot of our traditional thinking on treating and governing citizens with disabilities. Our policies will need a real make-over. But I'm not complaining.
Tuesday, October 16, 2007
Saturday, September 29, 2007
India should take a strong stand against military oppression in Burma
There are a lot of articles currently both criticizing and explaining New Delhi's mild public support for the pro-democracy uprising in Burma. Most blame the extra safe stand taken by India to be a culmination of business and energy interests in Burma, not losing any advantage to China, and anti-terrorism partnership with the military government in Burma.
I am ready to accept that it is not easy for the powers that be to make this decision. There are probably significant pros and cons in taking such action when it comes to long-term foreign policy, regional hold on power, financial and strategic interests etc. etc. India is weighing its options very very carefully and does not want to slip on this tight rope walk...
However, as a citizen, I want my government to do something constructive if it is in a position to do this. At the very minimum lets not give weak-knee'd statements such as "we wish for a great ending all around" and "we never interfere in others internal problems." Do we have means to take both overt and covert measures to support the pro-democracy protests and non violence towards the protesters? Because if we do, I want my democratically elected government to use them.
Can we engage in smart diplomacy to get the junta to not fire indiscriminately at protesters? Do we have any leverage in demanding that they do this or that...if yes, let's use it...let's use it.
This is a request, my request to my government, if there is something we can do to stop the oppression...let's do it. Let's not stand by and see blatant human rights abuses occur as we trade business deals. If we want to become a dominant regional power, we also need to have the guts to take positions that may discomfort ruling governments. We cannot become a regional power to reckon with if we are only too happy to shun the responsibility that can come with it...
Does that mean imposing our views, no matter what, on a people...? Nope, we don't abuse it, but let's use it at least...
I am ready to accept that it is not easy for the powers that be to make this decision. There are probably significant pros and cons in taking such action when it comes to long-term foreign policy, regional hold on power, financial and strategic interests etc. etc. India is weighing its options very very carefully and does not want to slip on this tight rope walk...
However, as a citizen, I want my government to do something constructive if it is in a position to do this. At the very minimum lets not give weak-knee'd statements such as "we wish for a great ending all around" and "we never interfere in others internal problems." Do we have means to take both overt and covert measures to support the pro-democracy protests and non violence towards the protesters? Because if we do, I want my democratically elected government to use them.
Can we engage in smart diplomacy to get the junta to not fire indiscriminately at protesters? Do we have any leverage in demanding that they do this or that...if yes, let's use it...let's use it.
This is a request, my request to my government, if there is something we can do to stop the oppression...let's do it. Let's not stand by and see blatant human rights abuses occur as we trade business deals. If we want to become a dominant regional power, we also need to have the guts to take positions that may discomfort ruling governments. We cannot become a regional power to reckon with if we are only too happy to shun the responsibility that can come with it...
Does that mean imposing our views, no matter what, on a people...? Nope, we don't abuse it, but let's use it at least...
Wednesday, September 26, 2007
Sunday, September 23, 2007
Informed Consent
As a citizen I am always disturbed on hearing about violations of an individual's right to know what X, Y, or Z is doing to them and their bodies, because it is easy to put yourself in the victim's shoes and experience yourself squirm at the thought. However as a researcher I am even more incensed as I know that there are and need to be very strict guidelines that you must abide by when you deal with human beings in any sort of intervention.
A story in the Daily News and Analysis website on private hospitals in India testing patients for HIV without their knowledge or permission prompted this post...(I am trying to get a working URL for the article). The sheer ignorance and stupidity about testing every patient for HIV for the safety of hospital workers is a topic for another post.
It all goes down to the concept of ethics. You do not perform any sort of intervention on people, even if you think it is for the best, unless they give you their informed consent. Remember informed consent is not one word but two: a) People need to tell you, in a completely unambiguous manner, that it is okay to do what you want to do to/with them and (b) it has to be informed i.e. people have to know and understand what it is that you propose to do with them and why.
This is absolutely crucial in medical interventions...it does not matter if you think you are the expert, that people will anyways not understand, and hey you are doing it as God for their own good, you do not poke and draw fluid without first telling them what you are drawing it for. If that means you sit and explain what you need to do, you sit and explain.
Now this brings up interesting socio-cultural questions...is it common sense that informed consent is a necessity...or is it a regulated legislative guideline that you obey? In most cases, quite unfortunately, it needs to be the latter. There have to be strict legislative guidelines about what you can and cannot do.
Obtaining informed consent has to be an established legal necessity without exceptions. There should be no room allowed for ridiculous explanations about why it wasn't considered necessary to obtain consent.
Hmm, its time to look into India's legislation on informed consent...
A story in the Daily News and Analysis website on private hospitals in India testing patients for HIV without their knowledge or permission prompted this post...(I am trying to get a working URL for the article). The sheer ignorance and stupidity about testing every patient for HIV for the safety of hospital workers is a topic for another post.
It all goes down to the concept of ethics. You do not perform any sort of intervention on people, even if you think it is for the best, unless they give you their informed consent. Remember informed consent is not one word but two: a) People need to tell you, in a completely unambiguous manner, that it is okay to do what you want to do to/with them and (b) it has to be informed i.e. people have to know and understand what it is that you propose to do with them and why.
This is absolutely crucial in medical interventions...it does not matter if you think you are the expert, that people will anyways not understand, and hey you are doing it as God for their own good, you do not poke and draw fluid without first telling them what you are drawing it for. If that means you sit and explain what you need to do, you sit and explain.
Now this brings up interesting socio-cultural questions...is it common sense that informed consent is a necessity...or is it a regulated legislative guideline that you obey? In most cases, quite unfortunately, it needs to be the latter. There have to be strict legislative guidelines about what you can and cannot do.
Obtaining informed consent has to be an established legal necessity without exceptions. There should be no room allowed for ridiculous explanations about why it wasn't considered necessary to obtain consent.
Hmm, its time to look into India's legislation on informed consent...
Thursday, September 13, 2007
Tuesday, September 11, 2007
ADAPT stages protest outside the AMA in Chicago
ADAPT (American Disabled For Attendant Programs Today), the prominent disability rights activist group in the United States, has been strongly protesting the construction of the Lincoln Developmental Center (read: institution) in Chicago since late last week.
The main issue under contention here is unnecessary institutionalization, that people with disabilities are forced to choose, when their Medicaid dollars are tied to institutional services as opposed to paying for independent living options in the community chosen by people themselves. Despite the passage of the "Money Follows the Person" legislation, Illinois consistently ranks extremely poorly when it comes to community and independent living for people with disabilities. And now Gov. Blagojevich wanted to reopen an institution for people with developmental disabilities in Chicago.
Needless to say big money exists in running institutions and the team of institution supporters revealingly includes the American Medical Association (AMA), some of whose members have financial interests in pushing their patients towards institutions, and the American Federation of State, County and Municipal Employees (AFSCME), whose members get employed by these big institutions.
ADAPT's agenda included getting these organizations to endorse the Community Choice Act which is aimed at removing the bias towards state sponsored nursing homes and institutionalization in state Medicaid programs and offers people real choice as to where they want to live.
Not only were ADAPT activities met with opposition by both, there were massive arrests of protesters on both occasions (55 for barricading the AMA on Monday) and after negotiations with AFSCME failed on Wednesday.
ADAPT advocates through civil disobedience and protests and they make their point. Sometimes that is the only way to make your point, to air your issues in public, and to open the eyes of the average non-disabled person. I was reading some of the comments posted on a blog entry about the AMA demonstration on the Chicago Reader. It is very informative to see how people react to such events.
Read ADAPT's daily coverage of their week in Chicago.
The main issue under contention here is unnecessary institutionalization, that people with disabilities are forced to choose, when their Medicaid dollars are tied to institutional services as opposed to paying for independent living options in the community chosen by people themselves. Despite the passage of the "Money Follows the Person" legislation, Illinois consistently ranks extremely poorly when it comes to community and independent living for people with disabilities. And now Gov. Blagojevich wanted to reopen an institution for people with developmental disabilities in Chicago.
Needless to say big money exists in running institutions and the team of institution supporters revealingly includes the American Medical Association (AMA), some of whose members have financial interests in pushing their patients towards institutions, and the American Federation of State, County and Municipal Employees (AFSCME), whose members get employed by these big institutions.
ADAPT's agenda included getting these organizations to endorse the Community Choice Act which is aimed at removing the bias towards state sponsored nursing homes and institutionalization in state Medicaid programs and offers people real choice as to where they want to live.
Not only were ADAPT activities met with opposition by both, there were massive arrests of protesters on both occasions (55 for barricading the AMA on Monday) and after negotiations with AFSCME failed on Wednesday.
ADAPT advocates through civil disobedience and protests and they make their point. Sometimes that is the only way to make your point, to air your issues in public, and to open the eyes of the average non-disabled person. I was reading some of the comments posted on a blog entry about the AMA demonstration on the Chicago Reader. It is very informative to see how people react to such events.
Read ADAPT's daily coverage of their week in Chicago.
Wednesday, August 22, 2007
Comments on DGCA's recent guidelines for air travel by people with disabilities
The Office of the Director General of Civil Aviation had recently opened its draft on the Civil Aviation Requirements for the "Carriage of Physically Challenged Passengers by Air" for public review. The requirements were intended to go into enforcement on August 15, 2007...interestingly also the deadline for sending your comments to DGCA! Now, one might wonder about the sense of setting the same date for both actions...shouldn't the Office at least put on the show of considering the recommendations made by persons with disabilities, affiliated organizations, airlines, and the aam junta?? The grapevine insists that no disabled persons organizations were approached before the requirements were drafted so it would be nice if their comments were given some weight afterwards.
Anyways, here are my comments on the requirements if anyone is interested. Most are my own, and some are replicated from AccessAbility's comments to reinforce suggestions that they put in much better words.
Now I do want to say that I appreciate the fact that the DGCA has actually taken the step of developing these guidelines...it is past high time that the matter is given serious consideration. The guidelines they've put together however do fall short of the kind of framework you need to ensure that people with disabilities enjoy enhanced independence and access in air travel. But while I was browsing for similar regulations in other developing and neighbouring countries for comparison purposes, I came up with none! (Maybe Google is failing me?? So if you know of some please let me know!) Hence I am glad that India is taking the step forward...
Understandingly, there is some unrest among the disability community in India about the requirements themselves, and the manner in which they were released. For some insight read:
1. Shivani Gupta's assessment on the issue where she also summarizes the horrible experience Rajeev Rajan had to go through recently.
2. Article in The Hindu on the reactions to the DGCA draft and deadline.
Anyways, here are my comments on the requirements if anyone is interested. Most are my own, and some are replicated from AccessAbility's comments to reinforce suggestions that they put in much better words.
Now I do want to say that I appreciate the fact that the DGCA has actually taken the step of developing these guidelines...it is past high time that the matter is given serious consideration. The guidelines they've put together however do fall short of the kind of framework you need to ensure that people with disabilities enjoy enhanced independence and access in air travel. But while I was browsing for similar regulations in other developing and neighbouring countries for comparison purposes, I came up with none! (Maybe Google is failing me?? So if you know of some please let me know!) Hence I am glad that India is taking the step forward...
Understandingly, there is some unrest among the disability community in India about the requirements themselves, and the manner in which they were released. For some insight read:
1. Shivani Gupta's assessment on the issue where she also summarizes the horrible experience Rajeev Rajan had to go through recently.
2. Article in The Hindu on the reactions to the DGCA draft and deadline.
Saturday, July 28, 2007
Joanne Rowling and Mental Illness - Why is the world of magic so bleak for people with mental illness?
I have been thinking about this for a while, maybe since I read the Order of the Phoenix. Deathly Hallows gave me another reason to explore this subject.
To establish the frame of reference, let me quickly summarize the entire subject of media depiction of mental illness. Amongst all other disabilities, severe mental illness has been widely used in two polarizing ways in mainstream media - the reason for violence and cruelty, or the subject of pity and humiliation (the former more than the latter). People with mental illness are depicted as prime cases for institutionalization, as that will either keep society safe from them and families unburdened from the responsibility of caring for them. The stigma surrounding mental illness is reasonably aided (or even perpetuated) by characters in books, movies, television series, plays, etc. - and it shapes attitudes such as, "they are dangerous," "they are cuckoo," "they should be locked up," and of course "they are beyond help." It is this last one that I want to take up in this post.
Let me say something else from the onset. The subject of guardianship and institutionalization is very complicated and I do not wish to oversimplify it by merely saying it's Good or Bad (and it's not the focus here), but I do have issues with state-enforced mandatory institutionalizations on the mere prognosis of severe mental illness.
In the Harry Potter series, we come across three characters with severe mental disabilities, caused due to torture and trauma - Frank and Alice Longbottom, and Ariana Dumbledore. Although JKR does not come out and say mental illness for Ariana, the subtext is all there.
Case 1: The Longbottoms
Frank and Alice Longbottom are tortured by the Death Eaters to obtain information on Voldemort's whereabouts, after his first fall. They are tortured "into insanity" and driven "insane" (GoF, OotP). They no longer recognize anyone, not even their son Neville...and spend the rest of their life in the Wizard hospital St. Mungo's "closed ward for long-term residents with permanent spell damage." I'm not going to get into the "why can't magic solve this problem when clearly it can do everything else, like mend a broken skull" argument. There are other issues here.
The underlying message here is that there are some forms of magical damage that cannot be undone by any spell or charm. Hmm...plain medical model approach, no medicine can help them. Realistically speaking, not all forms of severe mental illness have identified medical cures or workable counseling solutions. I'll give her that, but I want to discuss the institutionalization inherent in this plot-line. Why are Frank and Alice in an institution permanently? She uses it as a scene to depict Neville's predicament, his loss, and an obvious tool to draw overwhelming pity towards him from the audience. It is mentioned time and again how Neville's loss is much greater as compared to Harry's - you see, dead parents are way better than insane living parents.
I will not deny that I felt, and still feel, extremely sad and sorry for Neville...and not because of his parents' insanity (I keep using that word because JKR keeps using that word...insane, insane, insane), but because apparently the magical world has no other solution to your problem but institutionalization!! This is very orthodox thinking. It was used in the perfect example of media exploitation, as the object of pity.
Ms. Rowling, you should have used this situation to show something. I am a fan of how you've used plot lines to expose racism and slavery to some extent. You could have had someone like Hermione or even Harry asking questions like, "Why isn't there anything more that the Ministry can do?" or "Why isn't there research being done to come up with solutions?" or "Why can't they live in a community setting?" You need not have come up with solutions, but at least got your readers to question such situations better...
Case 2: Ariana
Little six year old Ariana Dumbledore (THE Dumbledore's sister) is seen performing underage magic in her backyard by three Muggle boys. In their quest to make her show them her secret, they "get a bit carried away trying to stop her from doing it." While JKR does not specify what they actually did, it has been widely interpreted as sexual abuse/rape.
I am quoting from the book,
This destroyed her...she was never right again...she wouldn't use magic, but she couldn't get rid of it; it turned inward and drove her mad, it exploded out of her when she couldn't control it, and at times she was strange and dangerous. But mostly she was sweet and scared and harmless.
The problem here is that if anyone knew "what Ariana had become" (where she couldn't control dangerous bursts of magic) the Ministry would consider it a violation of their secrecy regulations (to keep muggles unaware) and forcibly shut her up in St. Mungo's. JKR takes a position against institutionalization here, through the mother Kendra who wants to keep her little girl with the family. She then takes measures to keep the girl hidden from the community just so that she is not "carted off" and is cared for by her family in her home.
Again this could have been used to highlight the underlying social issues here, but instead they are overshadowed by their effect on Albus and his future life (although I like how she describes his feeling of "resentment" and his brother's prioritizing their sister above his studies...but again not the topic here).
Why was Kendra bound by such a scarcity of options? Her choice was the dominant reality for parents whose children had severe mental disabilities for past decades, and unfortunately remains so for many today. However, it could have been used to make readers ask better questions. Why couldn't the Ministry allow Kendra to raise her child in her home if sufficient care was taken? Why was there no cure (for the lack of a better word) for Ariana's condition? Why were there no measures to counter the post traumatic psychological distress she underwent as a child? Why should we rely on spells (read medicine) alone? Were their no accommodations that could be made to encourage Ariana to study?
It almost seems like Kendra should have taken her daughter to the nearest Muggle counseling and therapeutic facility.
Why is the world of magic so bleak for people with mental illness? We are living in a period where people are trying to fight the notion that there are limited options for psychological impairments. We are trying to encourage people to seek counseling, to create awareness about the options and opportunities, to demand better mental health care and coverage.
When JKR uses Hermione and Dumbledore repeatedly to raise pointed questions about the inherent injustices perpetuated by Wizarding dominance and regulations, why does she ignore this topic? She uses Lupin well to characterize physical disability, she raises the right questions. But alas, mental illness is still considered different, and differently.
To establish the frame of reference, let me quickly summarize the entire subject of media depiction of mental illness. Amongst all other disabilities, severe mental illness has been widely used in two polarizing ways in mainstream media - the reason for violence and cruelty, or the subject of pity and humiliation (the former more than the latter). People with mental illness are depicted as prime cases for institutionalization, as that will either keep society safe from them and families unburdened from the responsibility of caring for them. The stigma surrounding mental illness is reasonably aided (or even perpetuated) by characters in books, movies, television series, plays, etc. - and it shapes attitudes such as, "they are dangerous," "they are cuckoo," "they should be locked up," and of course "they are beyond help." It is this last one that I want to take up in this post.
Let me say something else from the onset. The subject of guardianship and institutionalization is very complicated and I do not wish to oversimplify it by merely saying it's Good or Bad (and it's not the focus here), but I do have issues with state-enforced mandatory institutionalizations on the mere prognosis of severe mental illness.
In the Harry Potter series, we come across three characters with severe mental disabilities, caused due to torture and trauma - Frank and Alice Longbottom, and Ariana Dumbledore. Although JKR does not come out and say mental illness for Ariana, the subtext is all there.
Case 1: The Longbottoms
Frank and Alice Longbottom are tortured by the Death Eaters to obtain information on Voldemort's whereabouts, after his first fall. They are tortured "into insanity" and driven "insane" (GoF, OotP). They no longer recognize anyone, not even their son Neville...and spend the rest of their life in the Wizard hospital St. Mungo's "closed ward for long-term residents with permanent spell damage." I'm not going to get into the "why can't magic solve this problem when clearly it can do everything else, like mend a broken skull" argument. There are other issues here.
The underlying message here is that there are some forms of magical damage that cannot be undone by any spell or charm. Hmm...plain medical model approach, no medicine can help them. Realistically speaking, not all forms of severe mental illness have identified medical cures or workable counseling solutions. I'll give her that, but I want to discuss the institutionalization inherent in this plot-line. Why are Frank and Alice in an institution permanently? She uses it as a scene to depict Neville's predicament, his loss, and an obvious tool to draw overwhelming pity towards him from the audience. It is mentioned time and again how Neville's loss is much greater as compared to Harry's - you see, dead parents are way better than insane living parents.
I will not deny that I felt, and still feel, extremely sad and sorry for Neville...and not because of his parents' insanity (I keep using that word because JKR keeps using that word...insane, insane, insane), but because apparently the magical world has no other solution to your problem but institutionalization!! This is very orthodox thinking. It was used in the perfect example of media exploitation, as the object of pity.
Ms. Rowling, you should have used this situation to show something. I am a fan of how you've used plot lines to expose racism and slavery to some extent. You could have had someone like Hermione or even Harry asking questions like, "Why isn't there anything more that the Ministry can do?" or "Why isn't there research being done to come up with solutions?" or "Why can't they live in a community setting?" You need not have come up with solutions, but at least got your readers to question such situations better...
Case 2: Ariana
Little six year old Ariana Dumbledore (THE Dumbledore's sister) is seen performing underage magic in her backyard by three Muggle boys. In their quest to make her show them her secret, they "get a bit carried away trying to stop her from doing it." While JKR does not specify what they actually did, it has been widely interpreted as sexual abuse/rape.
I am quoting from the book,
This destroyed her...she was never right again...she wouldn't use magic, but she couldn't get rid of it; it turned inward and drove her mad, it exploded out of her when she couldn't control it, and at times she was strange and dangerous. But mostly she was sweet and scared and harmless.
The problem here is that if anyone knew "what Ariana had become" (where she couldn't control dangerous bursts of magic) the Ministry would consider it a violation of their secrecy regulations (to keep muggles unaware) and forcibly shut her up in St. Mungo's. JKR takes a position against institutionalization here, through the mother Kendra who wants to keep her little girl with the family. She then takes measures to keep the girl hidden from the community just so that she is not "carted off" and is cared for by her family in her home.
Again this could have been used to highlight the underlying social issues here, but instead they are overshadowed by their effect on Albus and his future life (although I like how she describes his feeling of "resentment" and his brother's prioritizing their sister above his studies...but again not the topic here).
Why was Kendra bound by such a scarcity of options? Her choice was the dominant reality for parents whose children had severe mental disabilities for past decades, and unfortunately remains so for many today. However, it could have been used to make readers ask better questions. Why couldn't the Ministry allow Kendra to raise her child in her home if sufficient care was taken? Why was there no cure (for the lack of a better word) for Ariana's condition? Why were there no measures to counter the post traumatic psychological distress she underwent as a child? Why should we rely on spells (read medicine) alone? Were their no accommodations that could be made to encourage Ariana to study?
It almost seems like Kendra should have taken her daughter to the nearest Muggle counseling and therapeutic facility.
Why is the world of magic so bleak for people with mental illness? We are living in a period where people are trying to fight the notion that there are limited options for psychological impairments. We are trying to encourage people to seek counseling, to create awareness about the options and opportunities, to demand better mental health care and coverage.
When JKR uses Hermione and Dumbledore repeatedly to raise pointed questions about the inherent injustices perpetuated by Wizarding dominance and regulations, why does she ignore this topic? She uses Lupin well to characterize physical disability, she raises the right questions. But alas, mental illness is still considered different, and differently.
Wednesday, July 25, 2007
Career Watch: Therapeutic Massage
The Blind Relief Association (New Delhi) in collaboration with the Vandana Luthra Curls and Curves (VLCC) Institute offers a vocational training course in massaging and body therapy techniques for people with visual impairments.
This is a free three month course covering relaxation and therapeutic massage, pressure point massage and aromatherapy and offers instructor training as well. The Blind Relief Association also provides self-employment and placement assistance, which could be an added benefit to people wishing to enroll in this course.
Read the article in the Economic Times at:
http://economictimes.indiatimes.com/News/News_By_Industry/New_career_options_for_visually_challenged/articleshow/2226470.cms
This is a free three month course covering relaxation and therapeutic massage, pressure point massage and aromatherapy and offers instructor training as well. The Blind Relief Association also provides self-employment and placement assistance, which could be an added benefit to people wishing to enroll in this course.
Read the article in the Economic Times at:
http://economictimes.indiatimes.com/News/News_By_Industry/New_career_options_for_visually_challenged/articleshow/2226470.cms
Thursday, June 28, 2007
City officials can authorize surgery on people with intellectual disabilities?
The U.S. Court of Appeals for the District of Columbia has upheld the contention of the Mental Retardation and Developmental Disabilities Administration (MRDDA), that city officials are not required to undertake any attempts to identify the wishes of a person with an intellectual disability with regards to surgery, if they have always been declared incompetent to take health care decisions.
Representatives for three women with intellectual disabilities had argued that city officials authorized surgeries for them without attempting to find out their own wishes with regards to the surgical procedure, in violation of their rights under the Fifth Amendment of the U.S. Constitution. However the Court of Appeals has sided with the MRDDA in asserting that people with severe disabilities who have been declared incompetent throughout their lives do not have any rights under the Constitution to refuse surgical procedures upon themselves. Instead the city officials can elect to perform medical procedures considered to be in the best interests of the individual (Ashley treatment, anyone?).
Take a look at the entire decision at http://op.bna.com/hl.nsf/id/psts-74armw/$File/doe.pdf
The justices declared that, "It is undisputed here that plaintiffs have always lacked “sufficient
mental capacity to appreciate the nature and implications of a health-care decision, make a choice regarding the alternatives presented or communicate that choice in an unambiguous
manner.” The entire details of why it is "undisputed" are not explained in the decision.
Hmm, I wonder what the nature of those communications were, and if any accommodations had been made to explain the nature of the condition and proposed treatment in a manner understandable by the individual with the intellectual disability. I believe that it is very important to identify how physicians or psychiatrists declared people to be "mentally incapacitated." As literature shows, individuals with intellectual disabilities can benefit from psychotherapy for mental illness, if modified in a manner conducive to their understanding. However, it rarely is and the same might apply in the case of such competency decisions.
The court has argued that this differs for people who were once competent, but now lack this competency. In their case, officials must undertake efforts to identify their wishes before the onset of their current condition.
Representatives for three women with intellectual disabilities had argued that city officials authorized surgeries for them without attempting to find out their own wishes with regards to the surgical procedure, in violation of their rights under the Fifth Amendment of the U.S. Constitution. However the Court of Appeals has sided with the MRDDA in asserting that people with severe disabilities who have been declared incompetent throughout their lives do not have any rights under the Constitution to refuse surgical procedures upon themselves. Instead the city officials can elect to perform medical procedures considered to be in the best interests of the individual (Ashley treatment, anyone?).
Take a look at the entire decision at http://op.bna.com/hl.nsf/id/psts-74armw/$File/doe.pdf
The justices declared that, "It is undisputed here that plaintiffs have always lacked “sufficient
mental capacity to appreciate the nature and implications of a health-care decision, make a choice regarding the alternatives presented or communicate that choice in an unambiguous
manner.” The entire details of why it is "undisputed" are not explained in the decision.
Hmm, I wonder what the nature of those communications were, and if any accommodations had been made to explain the nature of the condition and proposed treatment in a manner understandable by the individual with the intellectual disability. I believe that it is very important to identify how physicians or psychiatrists declared people to be "mentally incapacitated." As literature shows, individuals with intellectual disabilities can benefit from psychotherapy for mental illness, if modified in a manner conducive to their understanding. However, it rarely is and the same might apply in the case of such competency decisions.
The court has argued that this differs for people who were once competent, but now lack this competency. In their case, officials must undertake efforts to identify their wishes before the onset of their current condition.
Sunday, April 01, 2007
Mandatory HIV testing: What's the objective?
In recent months, a few State Governments in India, for example Andhra Pradesh and Goa, have put forward proposals to mandate HIV screening for couples prior to marriage. Let us first consider the objectives behind such legislation and then we can discuss whether a) it achieves the stated objective, and b) it marks a major step by government officials towards curbing the alarming spread of HIV/AIDS in India.
Andhra Pradesh officials have stated that such screenings are necessary to curb the chances of HIV positive parents passing on the virus to their children. Identification of prospective parents who are HIV positive, would help to initiate preventive measures to prevent transferring the virus from mother to child. Another key reason is to inform individuals about the HIV status of their prospective spouses.
On the face of it, both of these are commendable and necessary goals for State governments. Awareness and knowledge can lead to safe preventive practices that can guard against the spread of the virus. However, mandatory HIV screening before marriage comes across as a half-baked idea that was rushed forward in the public to demonstrate that the State governments are actively trying to address the massive spread of HIV in India.
Let's consider this before discussing further...married women in monogamous relationships are a prime risk group for HIV/AIDS in India. And while I don't have the statistics on hand at the moment, I think it is safe to assume that not all their spouses were HIV positive before or at the time of marriage.
How can mandatory HIV screenings prior to marriage prevent HIV transfers once into the marriage? Stigma and discrimination in the case of HIV/AIDS are very high in India. It is still a male-dominated patriarchal society where a majority of women still do not have the social privilege, the self-efficacy, and the social safety net (in case of negative repercussions) to challenge their husbands. Will they be able to demand ongoing screenings, regular condom usage, and legal action for being infected by their husbands? And although I have argued solely from the womens' perspective, we have to admit men might face the same problems with their partners.
And India also suffers from a lack of awareness, ignorance, misconceptions, and...yes of course...stigma and the taboo factor.
Does this mean mandatory screenings for couples or individuals are completely useless? Maybe not...maybe regular mandatory screenings might really help in curbing the spread of the virus. This then raises major ethical concerns...shouldn't my health information remain completely confidential? But then, on the other side of the debate, don't I have the right to know about threats to my health and life? The ethics and confidentiality angle is something that has to be carefully considered in designing policies...
In addition, we know that finding the sex of a foetus and abortions of female foetuses occur all across the country with all the laws in place. How do we ensure that screening records will not be changed through bribes and forged?
Similarly, how do we ensure that screening records are not used unfairly against people with HIV/AIDS...for example to fire them (Philadelphia anyone?), not hire them, smear them in public, blackmail them etc. etc.
Questions, questions...and no solid answers. That's because this is not an issue that has a quick-fix solution nor does it have a "one-size-fits-all" solution. This needs careful discussion and debate. Government officials anxious to "do something" need to consider all sides of the issue. They need to prioritize this problem, and understand it's magnitude and realize that there are a number of reasons that result in the spread of the HIV virus. They have to take into account India's cultural setting.
Even when their hearts are in the right place (which seems to be the case here) rushing into a solution...any solution...will not pay off. I am glad they are doing something...but in this case, anything is not good enough.
Andhra Pradesh officials have stated that such screenings are necessary to curb the chances of HIV positive parents passing on the virus to their children. Identification of prospective parents who are HIV positive, would help to initiate preventive measures to prevent transferring the virus from mother to child. Another key reason is to inform individuals about the HIV status of their prospective spouses.
On the face of it, both of these are commendable and necessary goals for State governments. Awareness and knowledge can lead to safe preventive practices that can guard against the spread of the virus. However, mandatory HIV screening before marriage comes across as a half-baked idea that was rushed forward in the public to demonstrate that the State governments are actively trying to address the massive spread of HIV in India.
Let's consider this before discussing further...married women in monogamous relationships are a prime risk group for HIV/AIDS in India. And while I don't have the statistics on hand at the moment, I think it is safe to assume that not all their spouses were HIV positive before or at the time of marriage.
How can mandatory HIV screenings prior to marriage prevent HIV transfers once into the marriage? Stigma and discrimination in the case of HIV/AIDS are very high in India. It is still a male-dominated patriarchal society where a majority of women still do not have the social privilege, the self-efficacy, and the social safety net (in case of negative repercussions) to challenge their husbands. Will they be able to demand ongoing screenings, regular condom usage, and legal action for being infected by their husbands? And although I have argued solely from the womens' perspective, we have to admit men might face the same problems with their partners.
And India also suffers from a lack of awareness, ignorance, misconceptions, and...yes of course...stigma and the taboo factor.
Does this mean mandatory screenings for couples or individuals are completely useless? Maybe not...maybe regular mandatory screenings might really help in curbing the spread of the virus. This then raises major ethical concerns...shouldn't my health information remain completely confidential? But then, on the other side of the debate, don't I have the right to know about threats to my health and life? The ethics and confidentiality angle is something that has to be carefully considered in designing policies...
In addition, we know that finding the sex of a foetus and abortions of female foetuses occur all across the country with all the laws in place. How do we ensure that screening records will not be changed through bribes and forged?
Similarly, how do we ensure that screening records are not used unfairly against people with HIV/AIDS...for example to fire them (Philadelphia anyone?), not hire them, smear them in public, blackmail them etc. etc.
Questions, questions...and no solid answers. That's because this is not an issue that has a quick-fix solution nor does it have a "one-size-fits-all" solution. This needs careful discussion and debate. Government officials anxious to "do something" need to consider all sides of the issue. They need to prioritize this problem, and understand it's magnitude and realize that there are a number of reasons that result in the spread of the HIV virus. They have to take into account India's cultural setting.
Even when their hearts are in the right place (which seems to be the case here) rushing into a solution...any solution...will not pay off. I am glad they are doing something...but in this case, anything is not good enough.
Wednesday, January 31, 2007
The Color of Paradise: "I am not worried about him, I am worried about you"
Rang-e Khoda or The Color of Paradise, an Iranian movie written and directed by Majid Majidi, deserves to be complemented for its subtle handling of a subject that is routinely over-dramatized and decked with clichés. The story revolves around Mohammed, a young boy of about 6-7 years of age, who is blind. While the relationship between the child and his father forms the crux of the movie, the film is beautifully woven with Mohammed's interactions with his teacher, sisters, and grandmother.
The story in brief goes like this: Mohammed's widowed father wants to marry again, but feels that his son's presence would kill his chances. In addition, he is miserable about the misfortune of having a child with a disability, blames God for being unfair, and does not know what he's done to deserve the fate of having to look after "you-know-what." Hence, he wants to send his son away - anywhere...maybe he can just stay on at his boarding school, or learn carpentry from a carpenter who is also blind,...or well maybe the wild animals in the jungle might just eat him up! The ongoing tussle between his frustrations, Mohammed's desire to be just like his sisters, and a loving and supportive grandmother who cannot do away her son's will lead the story onto its (slightly overdone...but making a great point) climax.
I want to complement this movie for a number of factors that make some excellent points in a subtle and non-melodramatic way.
The first reason to praise Majidi is that he gave the part of Mohammed, to Mohsen Ramezani, who is actually blind. He does not resort to getting a great child star who can play blind...but a young and inexperienced kid who does a fantastic job. As an actor, he gives us Mohammed, his anxiety that his father has not come to pick him up at school, his determination to put the little baby bird back into its nest, his great happiness at being back with his sisters and grandmother (not to miss giving them gifts from the city), his pleading to go to the same school as his sisters, and his eagerness to recite his Brailled lessons at the village's mainstream school...all played out very naturally. His emotional breakdown when he feels that no-one wants him, is again natural and drives straight to the heart.
Majidi gives us some brilliant moments. Waiting for his father to pick him up at school, Mohammed drops his toy phone...seeing him feel for it on the ground, his teacher does not pick it up for him but encourages him to look for it saying, "just feel around a little bit, you will find it" and patiently watches Mohammed methodically search for it and find it quickly. At no point does the scene depict Mohammed's helplessless, rather his resourcefulness (And I can just imagine a Hindi movie milking such a scene for all its worth). However his watching father perceives it differently...
His grandmother teaches him to distinguish between the different plants and crops on their farm through the sense of touch. This grandmother is a pillar of love and understanding for her little grandson...who does not see him differently from her other grandchildren. She encourages Mohammed to study and dream big. When Mohammed gets upset about being left at home as his sisters go to school, she goes and arranges with the village school to have Mohammed join his sister's class. A spirited Mohammed opens his Brailled text and is encouraged by the teacher to read the chapter aloud for the class. Clearly, the father is displeased seeing "his son's disability paraded in front of the other kids."
Through other such situations, Majidi contrasts what Mohammed thinks, feels, wishes, and relishes with what his father perceives those to be. The real plot of the story is how the father can systemically destroy everything his son cares for because of his perception of disability, his assumption about his re-marriageability, his fear of the burden that has been hoisted upon him, and his complete inability to understand why his son should be included in his family and surroundings. The grandmother's steadfast zeal to protect her grandson from her son's fallacies is underlined by her actual inability as an elderly woman to do so.
After Mohammed is taken away to the carpenter's place, without her knowledge, she sets out to get him back herself, but the journey is too tedious for her age and she falls ill. As her son nurses her, he asks the quiet and depressed woman, "Do you want me to get him back? Should I get him back tomorrow? Are you worried about him?" she answers quietly, "I am not worried about him, I am worried about you."
This line symbolizes the message of the movie. It is not a person's disability that holds him/her back, it is others' perception of their abilities that does the real damage. Mohammed's father is too immersed in pitying his own luck, bemoaning his ill fate, cursing what God has done to him, and questioning the need to continue supporting a "disabled child" to value and appreciate his son, his dreams, his capabilities, and his achievements. In the very end, when his son needs him the most, he does display a father's readiness to protect his child from any harm...but a few seconds too late.
Majidi does not caricature the father as an evil demon, which situates the film in reality. He represents a sample set of families who do think like this. Is it a lack of awareness or a lack of resources? Selfishness or ignorance? Poverty or greed? Maybe a mixture of it all.
Check out the movie, and watch for those minute details that nonetheless talk big about inclusion, diversity, and accommodations.
The story in brief goes like this: Mohammed's widowed father wants to marry again, but feels that his son's presence would kill his chances. In addition, he is miserable about the misfortune of having a child with a disability, blames God for being unfair, and does not know what he's done to deserve the fate of having to look after "you-know-what." Hence, he wants to send his son away - anywhere...maybe he can just stay on at his boarding school, or learn carpentry from a carpenter who is also blind,...or well maybe the wild animals in the jungle might just eat him up! The ongoing tussle between his frustrations, Mohammed's desire to be just like his sisters, and a loving and supportive grandmother who cannot do away her son's will lead the story onto its (slightly overdone...but making a great point) climax.
I want to complement this movie for a number of factors that make some excellent points in a subtle and non-melodramatic way.
The first reason to praise Majidi is that he gave the part of Mohammed, to Mohsen Ramezani, who is actually blind. He does not resort to getting a great child star who can play blind...but a young and inexperienced kid who does a fantastic job. As an actor, he gives us Mohammed, his anxiety that his father has not come to pick him up at school, his determination to put the little baby bird back into its nest, his great happiness at being back with his sisters and grandmother (not to miss giving them gifts from the city), his pleading to go to the same school as his sisters, and his eagerness to recite his Brailled lessons at the village's mainstream school...all played out very naturally. His emotional breakdown when he feels that no-one wants him, is again natural and drives straight to the heart.
Majidi gives us some brilliant moments. Waiting for his father to pick him up at school, Mohammed drops his toy phone...seeing him feel for it on the ground, his teacher does not pick it up for him but encourages him to look for it saying, "just feel around a little bit, you will find it" and patiently watches Mohammed methodically search for it and find it quickly. At no point does the scene depict Mohammed's helplessless, rather his resourcefulness (And I can just imagine a Hindi movie milking such a scene for all its worth). However his watching father perceives it differently...
His grandmother teaches him to distinguish between the different plants and crops on their farm through the sense of touch. This grandmother is a pillar of love and understanding for her little grandson...who does not see him differently from her other grandchildren. She encourages Mohammed to study and dream big. When Mohammed gets upset about being left at home as his sisters go to school, she goes and arranges with the village school to have Mohammed join his sister's class. A spirited Mohammed opens his Brailled text and is encouraged by the teacher to read the chapter aloud for the class. Clearly, the father is displeased seeing "his son's disability paraded in front of the other kids."
Through other such situations, Majidi contrasts what Mohammed thinks, feels, wishes, and relishes with what his father perceives those to be. The real plot of the story is how the father can systemically destroy everything his son cares for because of his perception of disability, his assumption about his re-marriageability, his fear of the burden that has been hoisted upon him, and his complete inability to understand why his son should be included in his family and surroundings. The grandmother's steadfast zeal to protect her grandson from her son's fallacies is underlined by her actual inability as an elderly woman to do so.
After Mohammed is taken away to the carpenter's place, without her knowledge, she sets out to get him back herself, but the journey is too tedious for her age and she falls ill. As her son nurses her, he asks the quiet and depressed woman, "Do you want me to get him back? Should I get him back tomorrow? Are you worried about him?" she answers quietly, "I am not worried about him, I am worried about you."
This line symbolizes the message of the movie. It is not a person's disability that holds him/her back, it is others' perception of their abilities that does the real damage. Mohammed's father is too immersed in pitying his own luck, bemoaning his ill fate, cursing what God has done to him, and questioning the need to continue supporting a "disabled child" to value and appreciate his son, his dreams, his capabilities, and his achievements. In the very end, when his son needs him the most, he does display a father's readiness to protect his child from any harm...but a few seconds too late.
Majidi does not caricature the father as an evil demon, which situates the film in reality. He represents a sample set of families who do think like this. Is it a lack of awareness or a lack of resources? Selfishness or ignorance? Poverty or greed? Maybe a mixture of it all.
Check out the movie, and watch for those minute details that nonetheless talk big about inclusion, diversity, and accommodations.
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