We have now moved on to the core of UNIT 4, namely, critical disability studies. It was explained at the outset, how DS is an academic discipline that is hugely different from the other disciplines. The individual topics that we discussed are as follows:
(i) How disability is seen as a representation of the human condition
(ii) The role of UPIAS in the bringing up of the discipline of DS
(iii) The goals of DS
(iv) Methodologies of DS
(v) Foucault's Geneology
(vi Critical Theory (Beginning from the Frankfurt School)
The main emphasis has been on the need for an academic arm of the disability rights movement in the form of DS.
The notion of knowledge construction and organisation was emphasised. The point that was made convincingly was the typically western (and therefore limiting) thinking post-industrial revolution to organise knowledge in three types of disciplines, namely, Science, Humanities and Social Sciences. Critical studies was necessarily a reaction to this artificial divisioning of knowledge and accompanying methodologies, especially between Humanities and Social Sciences. Critical studies has been henceforth enriched by the addition of post-colonial studies methods -- a strongly Indian contribution of knowledge.
12 April 2010
15 March 2010
Baby Alexandra
This is with reference to the discussion wrt the UNCRPD article on right to life, specifically the case of Baby Alexandra. I mentioned about surgery to save a Down's Syndrome baby, to which was raised the issue of whether a Down's Syndrome baby can be saved through surgery since it's a chromosomal deficiency. Here is the relevant quotation:
"The case of Baby Alexandra in 1980 and the trial of Dr Leonard Arthur in 1981, are two of the British examples on which a great deal of public and professional attention has been focused. In the former, a local authority applied for a child with Down’s syndrome to be made a ward of the court after her parents had refused to give consent to life-saving surgery. One hospital had attempted to protect the child and ensure that she had the treatment by alerting the local authority. However, when she was subsequently transferred to another hospital for surgery, the surgeon declined to operate having heard the parents’ wishes. The local authority was eventually successful and the child survived.
In the second case, a consultant paediatrician was charged with murder, (later reduced to attempted murder) and acquitted after having prescribed sedation and nursing care only for a baby with Down’s Syndrome whose parents did not wish him to survive. The procedure inevitably resulted in the child’s death."
from DISABLED PEOPLE AND EUROPEAN HUMAN RIGHTS: A review of the implications of the 1998 Human Rights Act for disabled children and adults in the UK by Luke Clements and Janet Read, 2003, The Policy Press, UK
Further:
Some medical conditions seen in children with Down syndrome require surgery. For example, about 40% of children with Down syndrome have congenital heart defects. Some of these defects are mild and may fix themselves, and some heart defects are more severe and will require
surgery. Children with Down syndrome can have intestinal defects that also require surgery.
So we can conclude that it's not that Down's Syndrome can be cured by the medical problems associated with being born with an extra Chromosome can be overcome by a variety of ways and surgery is one of them.
"The case of Baby Alexandra in 1980 and the trial of Dr Leonard Arthur in 1981, are two of the British examples on which a great deal of public and professional attention has been focused. In the former, a local authority applied for a child with Down’s syndrome to be made a ward of the court after her parents had refused to give consent to life-saving surgery. One hospital had attempted to protect the child and ensure that she had the treatment by alerting the local authority. However, when she was subsequently transferred to another hospital for surgery, the surgeon declined to operate having heard the parents’ wishes. The local authority was eventually successful and the child survived.
In the second case, a consultant paediatrician was charged with murder, (later reduced to attempted murder) and acquitted after having prescribed sedation and nursing care only for a baby with Down’s Syndrome whose parents did not wish him to survive. The procedure inevitably resulted in the child’s death."
from DISABLED PEOPLE AND EUROPEAN HUMAN RIGHTS: A review of the implications of the 1998 Human Rights Act for disabled children and adults in the UK by Luke Clements and Janet Read, 2003, The Policy Press, UK
Further:
Some medical conditions seen in children with Down syndrome require surgery. For example, about 40% of children with Down syndrome have congenital heart defects. Some of these defects are mild and may fix themselves, and some heart defects are more severe and will require
surgery. Children with Down syndrome can have intestinal defects that also require surgery.
So we can conclude that it's not that Down's Syndrome can be cured by the medical problems associated with being born with an extra Chromosome can be overcome by a variety of ways and surgery is one of them.
08 March 2010
Gender and Disability
Today we had an invited lecture by Dr Anita Ghai, a well-known disability activist and scholar who teaches psychology at the Jesus and Mary College of the University of Delhi.
She talked on Gender and Disability generally, giving a perspective on the topic which will be dealt with in greater detail on two following lectures on April 3rd and April 5th.
Gender and disability is an important part of the course and Dr Ghai made a very special effort in today's talk by talking about her own experiences as a woman and a disabled person. In this way, she gave a very good demonstration of reflexivity in research, which, as I had mentioned in earlier classes, is a hallmark of many social science disciplines and especially of disability studies and also gender studies. Please recall the discussion I had in class about the difference between "life history" and "life story" and how these are valid methods of research. Anita herself mentioned how the epistemic location for her is herself, knowledge begins from there.
During her talk she touched upon issues of sexuality, marriage, sexual abuse, adoption and related themes and gave an account of each through examples, sometimes personal and sometimes as part of her own research, and showed the connection between gender and disability and how the study of the latter can enrich the former.
Especially important were the anecdotes and personal experiences that Anita talked about today in relation to the above themes (marriage, sexuality, adoption).
We also had some very important views expressed by students in the class, especially Rakesh, who almost brought us to tears when he related his experience at the village recently.
I am looking forward to the two following talks by Anita.
She talked on Gender and Disability generally, giving a perspective on the topic which will be dealt with in greater detail on two following lectures on April 3rd and April 5th.
Gender and disability is an important part of the course and Dr Ghai made a very special effort in today's talk by talking about her own experiences as a woman and a disabled person. In this way, she gave a very good demonstration of reflexivity in research, which, as I had mentioned in earlier classes, is a hallmark of many social science disciplines and especially of disability studies and also gender studies. Please recall the discussion I had in class about the difference between "life history" and "life story" and how these are valid methods of research. Anita herself mentioned how the epistemic location for her is herself, knowledge begins from there.
During her talk she touched upon issues of sexuality, marriage, sexual abuse, adoption and related themes and gave an account of each through examples, sometimes personal and sometimes as part of her own research, and showed the connection between gender and disability and how the study of the latter can enrich the former.
Especially important were the anecdotes and personal experiences that Anita talked about today in relation to the above themes (marriage, sexuality, adoption).
We also had some very important views expressed by students in the class, especially Rakesh, who almost brought us to tears when he related his experience at the village recently.
I am looking forward to the two following talks by Anita.
10 February 2010
Definitions wihtin the Indian context
The following is a brief discussion on the introduction of the Indian thinking on disability as it is reflected in official documents. The first official document to mention disability was the landmark document on education or the NPE 1968 which was formulated as a result of the Kothari Commission (1964-66):
Women's education
There is a rather huge contradiction that pervades much of our policies needs to be pointed out. It was really great to know that as early as 1948-49, stalwarts like Radhakrishanan and Maulana Azad had prepared this great document called The University Education Commission Report:
The first statement shows what great and beautiful minds are at work and what a grand vision they had as early as 1948, but the strategy of "special courses" and "redirection of interest" shows how the door though now opened for women's education is only for entering one particular (and rather small) room only. Himangshu Rai preferred a more generous interpretation where this attempt on the part of the Commission can be seen as one way of at least starting the beginning of women's education in a country where this has been always lacking. Neha and Deepika thought that this was too generous a reading, echoing my thoughts exactly -- when emancipation, a 19th movement has been around for decades, these learned men were quite likely to be aware of it and the need for it, yet they chose to restrict women's education only to certain fields. Rakesh also pointed how Gender is a construct at least since 'Second Sex' and the statements above limiting the role of women as care giver can be seen in this light.
I also fault these stalwarts on count of not thinking of PwDs, especially when they had separate sections on education of economically disadvantaged groups, backward classes, and minorities. However, we can say that the NPEs more than compensated for this lacuna.
Programme of Action 1992 and Other Progammes
In fact, the POA (which is independent of the Review Committee report of the NPE 1986) is a greatly detailed document about the education of PwDs. I also pointed out how POA is an intermediate stage between documents like NPEs and Acts (like PwD), still they are not valid in the court of law. It took a long time to turn these policies and POAs to an Act like the PwD and then recently the RTE. In between, we had three important programmes, viz., IEDC, SSA and IECYD. Among these, in the two IEs (Integrated Education), I showed how the expansion of 'I' changed from 'integrated' to 'inclusion' -- a major step no doubt, but how much of it is going to turn itself into an Act?
The use of the word handicapped is now seen more generously, especially in light of the WHO definitions, however, we must also remember that the Indian documents have been using then and since various terms inconsistently. This was followed by the next NPE that is of 1986, which in addition to the first paragraph also added two small sub-sections which are rather instructive from the following perspectives:
- the first sub-section on mainstreaming for children with motor/ mild handicaps has an interesting implication that special schools are to be preferred for other handicaps
- secondly, in response to the word 'voluntary' in the second sub-clause, it is realised that there is an attempt in this document to not only recognise the work done by the voluntary/ NGO sector in this field but also perhaps the Government cannot do without their help especially in utilising their network. It is clear that various such organisations for good or for bad, for charity or for some other reason, went into working for the disabled much before government even thought about it.
Women's education
There is a rather huge contradiction that pervades much of our policies needs to be pointed out. It was really great to know that as early as 1948-49, stalwarts like Radhakrishanan and Maulana Azad had prepared this great document called The University Education Commission Report:
The first statement shows what great and beautiful minds are at work and what a grand vision they had as early as 1948, but the strategy of "special courses" and "redirection of interest" shows how the door though now opened for women's education is only for entering one particular (and rather small) room only. Himangshu Rai preferred a more generous interpretation where this attempt on the part of the Commission can be seen as one way of at least starting the beginning of women's education in a country where this has been always lacking. Neha and Deepika thought that this was too generous a reading, echoing my thoughts exactly -- when emancipation, a 19th movement has been around for decades, these learned men were quite likely to be aware of it and the need for it, yet they chose to restrict women's education only to certain fields. Rakesh also pointed how Gender is a construct at least since 'Second Sex' and the statements above limiting the role of women as care giver can be seen in this light.
I also fault these stalwarts on count of not thinking of PwDs, especially when they had separate sections on education of economically disadvantaged groups, backward classes, and minorities. However, we can say that the NPEs more than compensated for this lacuna.
Programme of Action 1992 and Other Progammes
In fact, the POA (which is independent of the Review Committee report of the NPE 1986) is a greatly detailed document about the education of PwDs. I also pointed out how POA is an intermediate stage between documents like NPEs and Acts (like PwD), still they are not valid in the court of law. It took a long time to turn these policies and POAs to an Act like the PwD and then recently the RTE. In between, we had three important programmes, viz., IEDC, SSA and IECYD. Among these, in the two IEs (Integrated Education), I showed how the expansion of 'I' changed from 'integrated' to 'inclusion' -- a major step no doubt, but how much of it is going to turn itself into an Act?
06 February 2010
Disability as 'Pathology'
Today the question before us is, whether or not to include disability as a subtheme of disease. The issue arose from attempts to treat disability as a pathology. The example from UN discussion forum clearly seems to go for including disability within NCDs or non-communicable diseases:
So the debate shifts -- whether disabilities that result from diseases (esp. NCDs) are to be treated as disease or not. However there was confusion about this point. And this confusion arose because of the undeniable fact that whether it's disability as a result of a NCD or not, it's still a disability. This confusion was allayed upon further discussion in the class -- now that we know the figures (90% in developed countries and 50% in developing countries of disability is from some disease whether NCD or non-NCD) then the question is whether it's OK to say that disability mostly is a disease or to say that due to the following reasons, it's not:
(i) since disability is a social construct like gender
(ii) since disability is a continuum(iii) since disability is seen as an alternative 'being'
(iv) since what we are trying to do in this class is to learn that disability is also a concept.
Point no. (iii) above is brought out very nicely in the following email in the context of the above UN statement:
So the debate continues and it has to be constructed by all who participate.
We also saw how the 2nd type of definitions, ie, research definitions are quite different in their coverage and in their area of application from Type 1 definitions. The research definitions point toward an alternative concept of disability that is in tune with viewing it as construct and as a way of being.
We started then with the origin of the concept of equality for persons with disability in the Indian context. I showed how it arose first through concerns of education for the disabled persons. In fact, it was early as 1968 (or 1964-66, if we count the Kothari Commission reports) the National Policy of Education in India covered disabled persons. In the context of the awareness world over about DPs that time, the 'handicapped' which was being put to use. And in light of the later definitions that emerged as part of the ICIDH by the WHO 'handicapped' in this context can be seen as disabled.
So it was visionary document and it was early enough. However, we noted -- and there was a lively debate on this in class -- whether special schools or integration is the answer. There is obviously much more to say in this context and we will discuss this in detail later, including my recent work on this.
So the debate shifts -- whether disabilities that result from diseases (esp. NCDs) are to be treated as disease or not. However there was confusion about this point. And this confusion arose because of the undeniable fact that whether it's disability as a result of a NCD or not, it's still a disability. This confusion was allayed upon further discussion in the class -- now that we know the figures (90% in developed countries and 50% in developing countries of disability is from some disease whether NCD or non-NCD) then the question is whether it's OK to say that disability mostly is a disease or to say that due to the following reasons, it's not:
(i) since disability is a social construct like gender
(ii) since disability is a continuum(iii) since disability is seen as an alternative 'being'
(iv) since what we are trying to do in this class is to learn that disability is also a concept.
Point no. (iii) above is brought out very nicely in the following email in the context of the above UN statement:
So the debate continues and it has to be constructed by all who participate.
We also saw how the 2nd type of definitions, ie, research definitions are quite different in their coverage and in their area of application from Type 1 definitions. The research definitions point toward an alternative concept of disability that is in tune with viewing it as construct and as a way of being.
We started then with the origin of the concept of equality for persons with disability in the Indian context. I showed how it arose first through concerns of education for the disabled persons. In fact, it was early as 1968 (or 1964-66, if we count the Kothari Commission reports) the National Policy of Education in India covered disabled persons. In the context of the awareness world over about DPs that time, the 'handicapped' which was being put to use. And in light of the later definitions that emerged as part of the ICIDH by the WHO 'handicapped' in this context can be seen as disabled.
So it was visionary document and it was early enough. However, we noted -- and there was a lively debate on this in class -- whether special schools or integration is the answer. There is obviously much more to say in this context and we will discuss this in detail later, including my recent work on this.
03 February 2010
Three As
In today's class we started with the place of 'public health' as somewhat in-between 'Admin' and 'Clinical' group -- all three are of course a part of Type I of disability definition. First, we discussed how public health may be related to disability and why governmental agencies will be interested in epidemiology or distribution of disability. By studying distribution, prediction of prevalence and incidence can be made which can be used as an important tool for governmental policies.
This took us to DALY -- an important measurement of quality of life. We saw how ranking of various disability is expected to change by 2020.
Then in this context, we further discussed other statistical measures, like the very well known ICIDH, the definitions of impairment, disability and handicap that the Pwd is based on. After this, we went on to a critique of ICIDH and launched the discussion of how disability is seen in some well known sectors (like the UN!) as a disease or as a pathology. There is of course more to come --- the debate we started today is exactly this: How far justified it is to view disability as a disease and what are its consequences. I'd like everyone to think of this issue, it's not a simple issue, there are many sides to it.
The point that needs emphasising though is this -- the dominant project of normativity is so deeply rooted in our minds (mostly through our schooling and family) that we will need to make a real effort through (i) awareness (ii) acts (iii) access, I call the Three As, to understand that we cannot guarantee equal rights and equity as long as we see this world through difference.
This took us to DALY -- an important measurement of quality of life. We saw how ranking of various disability is expected to change by 2020.
Then in this context, we further discussed other statistical measures, like the very well known ICIDH, the definitions of impairment, disability and handicap that the Pwd is based on. After this, we went on to a critique of ICIDH and launched the discussion of how disability is seen in some well known sectors (like the UN!) as a disease or as a pathology. There is of course more to come --- the debate we started today is exactly this: How far justified it is to view disability as a disease and what are its consequences. I'd like everyone to think of this issue, it's not a simple issue, there are many sides to it.
The point that needs emphasising though is this -- the dominant project of normativity is so deeply rooted in our minds (mostly through our schooling and family) that we will need to make a real effort through (i) awareness (ii) acts (iii) access, I call the Three As, to understand that we cannot guarantee equal rights and equity as long as we see this world through difference.
29 January 2010
Research Definitions of Disability
Today, I discussed the types of definitions used for the UNCRPD and PwD Acts.
Several issues came up, the brief topics of these questions had to do with the following:
1. How language itself changes over a period and therefore it's effect on definitions
2. How various definitions and terms used are not devised by the people identified
3. How, many forms of disability are left out of the simple, classificatory definitions
In relation to #2, the most interesting point that was briefly discussed in the class was the Theory/ Philosophy of Justice of John Rawls and its later development. See one of my talks in this connection.
Continuing with the structure of definitions in general, I discussed the key features of any definitions which are its structure, its source, orientation (who does the definition talk about), and most importantly whether the definition makes a distinction between concepts about disability and empirical measures taken to ensure the rights of PwD/ DP. Further, it was mentioned that there are two main TYPES:
Type I: For Medical/ clinical, administrative purposes
Type II: For research purposes
Type II is clearly not easily acceptable and difficult to understand too. However, as I stressed that that is where the course is going, especially its insistence on the process of disability and the various personal accounts of disability which provide documented set of experiences and any definition arising out of investigating these are more worthwhile.
Here are the specific details:
Let me summarise most of what we discussed in the class today:
1. First slide is about the "key Features" of a definition, i.e., if the definition is a curry, what are its ingredients? Structure, Orientation and Source are most important. And within the last, there are two essentials types, (i) history of the definition, that is, how it came about, and (ii) who/ which group is the creator of the definition. So if we take this last meaning of source, and orientation, then we can say that it's important to know who makes the definition and for whom. As part of the structure, Himangshu pointed out that actually the PwD definition is structurally a list, whereas, the UNCRPD definition is not. Although this is essentially correct, it is also not the case that a list cannot be formed through a structure of paragraph, for example, it is possible to create a list through commas in a para also. The 4th point of the slide is very important, in fact, perhaps the most important issue that we are trying to understand in this course. It is this difference between disability as a concept and as observable, empirical facts. We discussed Rationalism and Empiricism in this regard and also talked about the social, economical perspectives of these as seen in the choice of careers, for example. I showed how "knowledge by indirect means", roughly Rationalism, is difficult to understand because it's not visible. Thus disability as a concept is much harder to understand. Anyhow, it was also pointed out that therefore this feature of definitions is harder to spot.
Wrt the next slide, it was pointed out that interpretablity between terms is important for communication between different groups associated with disability to take place. Then we looked at the two major types of definitions (recall that earlier we had seen the ways of defining disability but not types as such) where Type I is not only the most popular but also the most needed. The next slide pointed out when does the need to have a legal definition arise, it is needed when a particular benefit must reach a particular group in a just manner. Then we looked a the definition of disability as in US Dept of Health and recognised the wide coverage yet the preciseness of that definition. Finally, still within Type I (i.e., Administrative/ clinical), we looked at disability definition from public health perspective and discussed the importance of disability statistics for understanding the distribution of disability or epidemiology for the general public and also for specific groups who are the beneficiary of disability related acts.
Several issues came up, the brief topics of these questions had to do with the following:
1. How language itself changes over a period and therefore it's effect on definitions
2. How various definitions and terms used are not devised by the people identified
3. How, many forms of disability are left out of the simple, classificatory definitions
In relation to #2, the most interesting point that was briefly discussed in the class was the Theory/ Philosophy of Justice of John Rawls and its later development. See one of my talks in this connection.
Continuing with the structure of definitions in general, I discussed the key features of any definitions which are its structure, its source, orientation (who does the definition talk about), and most importantly whether the definition makes a distinction between concepts about disability and empirical measures taken to ensure the rights of PwD/ DP. Further, it was mentioned that there are two main TYPES:
Type I: For Medical/ clinical, administrative purposes
Type II: For research purposes
Type II is clearly not easily acceptable and difficult to understand too. However, as I stressed that that is where the course is going, especially its insistence on the process of disability and the various personal accounts of disability which provide documented set of experiences and any definition arising out of investigating these are more worthwhile.
Here are the specific details:
Let me summarise most of what we discussed in the class today:
1. First slide is about the "key Features" of a definition, i.e., if the definition is a curry, what are its ingredients? Structure, Orientation and Source are most important. And within the last, there are two essentials types, (i) history of the definition, that is, how it came about, and (ii) who/ which group is the creator of the definition. So if we take this last meaning of source, and orientation, then we can say that it's important to know who makes the definition and for whom. As part of the structure, Himangshu pointed out that actually the PwD definition is structurally a list, whereas, the UNCRPD definition is not. Although this is essentially correct, it is also not the case that a list cannot be formed through a structure of paragraph, for example, it is possible to create a list through commas in a para also. The 4th point of the slide is very important, in fact, perhaps the most important issue that we are trying to understand in this course. It is this difference between disability as a concept and as observable, empirical facts. We discussed Rationalism and Empiricism in this regard and also talked about the social, economical perspectives of these as seen in the choice of careers, for example. I showed how "knowledge by indirect means", roughly Rationalism, is difficult to understand because it's not visible. Thus disability as a concept is much harder to understand. Anyhow, it was also pointed out that therefore this feature of definitions is harder to spot.
Wrt the next slide, it was pointed out that interpretablity between terms is important for communication between different groups associated with disability to take place. Then we looked at the two major types of definitions (recall that earlier we had seen the ways of defining disability but not types as such) where Type I is not only the most popular but also the most needed. The next slide pointed out when does the need to have a legal definition arise, it is needed when a particular benefit must reach a particular group in a just manner. Then we looked a the definition of disability as in US Dept of Health and recognised the wide coverage yet the preciseness of that definition. Finally, still within Type I (i.e., Administrative/ clinical), we looked at disability definition from public health perspective and discussed the importance of disability statistics for understanding the distribution of disability or epidemiology for the general public and also for specific groups who are the beneficiary of disability related acts.
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