Assignment #1

This is a reminder that the following assignment is due on 7th Sept 2011:

 

(a) Discuss how the five "challenges", namely, Unfortunate, Useless, Different, Oppressed and Sick, discussed in Hunt (1966) are actually challenges in the sense that these are challenges for the society at large rather than disabled people.
(b) Provide at least one example each of the five challenges from your own experience, surrounding, news stories, etc. specifically in the Indian context.

Welcome!

Please check out the Pages listed on the right on Introduction, Plan and Readings. Most of the readings will be distributed before a topic is started and an attempt must be made to read, if required, in groups, the articles as much as possible. Much of the class lectures and discussion may be based on some of these articles. Unfortunately, most the readings are in English, barring a few, which we at the EOC have been able to translate to Hindi. Paul Hunt's, Anita Ghai's and my own article are translated into Hindi by a former student of this course, Himanshu Rai.I will try to post as much material a possible at this site but certainly not all. It's important to understand that you must have access to the Acts and Laws that will be dealt directly in the class, namely, ILA 1912, MHA 1987, PwD 1995, UNCRPD 2006, RTE 2009 and the draft of the new Disability Law, yet to be presented to the Parliament. I will also show a film called "Hear Me, Deaf" by Carol Thomas and we will go for a Special School visit to Amarjyoti.

As far as the message of the course is concerned, it needs to stressed that we are interested in issues of human rights that affect persons with disability. The course also emphasises the importance of understanding the true spirit of the various Acts and Policies so that advocacy can be impacted in the right manner. Finally, one lesson that must be remembered is to do with the fact that Disabilities Studies, the academic wing of disability activism, can only become meaningful if it is not devoid of activism that directly impacts the lives of persons with disabilities.

Looking for Parallel Themes

I remember Chomsky, when he was visiting India in November 2001 – a few weeks after I had returned to India to take up the teaching position in the University of Delhi that was offered to me long-distance while I was still in Germany/ UK – he was looking for a rather dull and dispassionate parallelism between the imperialist aggression of earlier centuries and the then current one; as if, all this was but expected. Those of us who grew up with almost the last vestiges of socialism, consider such positioning nothing but cynical.

However, over the years, I have come to appreciate this semi-journalistic, semi-academic strategy of seeking out such minimal parallel pairs. Apart from the obvious -- and much needed – in particular for issues that are almost universally neglected, populism that such a highlighting brings about, it provides you a pathway to follow your activism on; as long as there is decisive activism at the end of such a semi-academic tunnel, it cannot be cynical.

Here, I am interested in looking at a particular parallel that is more or less well-known in the context in which it is embedded – the context of oppression of women and of disabled persons. In the first stage, women were simply “added-in” to the male-dominated view of the world. However, it is only the so-called second wave of feminism that brought about an epistemological change in the perspective – it became a methodology, a decidedly feminist perspective of knowledge in general.

This has partly been the story of disability as a category as well. Disability has simply been an “add-on” category, especially so, in fact in early feminist literature, the following comment is therefore not a
surprise:

‘There are startling parallels between what feminists find disappointing and insulting in Western philosophical thought and what many women have found troubling in much of Western feminism’ (Spelman, 1990:6)

This parallel within a parallel is now a well recognised theme in the disability studies literature after Morris (1993). I will therefore move away from this well trodden path and look at in fact yet another parallel between, not oppression, but so-called “liberation” of women and of disabled persons. My area of focus will be education.

Sixty years ago, the earliest education commission, the University Education Commission report of 1948-49 of newly independent India, had a whole chapter devoted to Women’s Education which clearly stated that “There cannot be an educated people without educated women. If general education had to be limited to men or to women, that opportunity should be given to women, for then it would most surely be passed on to the next generation”. A humanistic statement like this by civil servants and bureaucrats is heart warming. However, the chapter also contains a section on what is called “Special Education” which lists and justifies home economics, nursing, teaching (primary and secondary schools), and the fine arts as the desirable vocations for women. It justifies this “desirable” alternative by the strange reasoning that to train a person who will not practise is a social loss, assuming (and therefore implying) that ‘to not practice’ is by choice; strange because the document does not bother to find out why women trained, for example, in medical sciences, do not take up medical practice. In addition, in its section on “Future of Women’s Education” it re-emphasises the need for, what it calls, “redirection of interest” through advocacy and counselling for women and people in general to remove social taboos against these vocations.

Furthermore, in the section on ‘Preparation of Home and Family Life’, the document advises that women’s education should include practical “laboratory” experience in the care of a home and family. It further includes the following as ‘equipment’ in women’s education:
(i) A baby home.
(ii) A nursery school, which incidentally would relieve nearby mothers during a part of the day.
(iii) A club for school children and adolescents.
(iv) A little home for convalescents.
(v) A small home for old people.
(vi) A home setting where students may have experience home Maintenance and operation, and where they may act as hostesses.

It’s interesting to see that out of these 6 equipments, 4 of them contain the word ‘home’ (underlined here), and the two which don’t contain the word home, imply women’s location as indoors. So, although the document stars with a visionary statement, it clearly locates the women firmly inside the home.

These three themes, (i) devalued social roles through special education, (ii) “redirection of interest”, and (iii) confinement in homes, are some of the very clear parallels found in how disabled persons have been treated and are continued to be treated.

Special schools for disabled children has been right from the National Policy of Education (NPE) 1986 to the very current Right to Education, 2009 aggressively pushed as the alternative for education/ training for disabled children. This is very clearly stated in the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, the main disability act of India, and also in related documents like Comprehensive Action Plan on the Inclusion in Education of Children and Youth with Disabilities (IECYD); the latter containing the largest section on “Education in Special Schools”. Thus the concept of special schools,
as a modern-day version of the eugenics’ notion of segregation, continue to develop as a small-scale industry in the country.

A theme similar to the above “redirection of interest” is seen in the current practice in Indian schools of not allowing especially blind students to opt for mathematics as a subject at school level – the excuse being Braille not able to create special symbols and diagrams. As a result, blind students can never take up any science subject or Economics at the graduate level, and are forced take ‘softer’ subjects instead.

Similarly, the IEYCD lists among its goals the following:

• To provide for home based learning for persons with severe, multiple and intellectual disability
• To promote distance education for those who require an individualised pace of learning
  

It also talks about setting up resource centres which are envisioned to support non-formal education as also home-based learning activities. Clearly, home-based education is nothing but another form of segregation albeit in their own homes.

Although as far as the polices, documents and acts are concerned, equality in women’s education has been successfully programmed over the years, no such development has taken place in the case of disabled persons,whose education continues to be haunted by the modern-day segregationists’instrument of special schools.

Critical Disability Studies

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.

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.

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.

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):

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.
  

So the second point is the new finding where given the nature of the field and the history of intervention that NGOs have made, the official government recognition of that work is made explicitly.

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?