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?

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.

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.

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.

Definitions - PART I

I discussed and highlighted the following three points with respect to definitions of disability:
(i) the need for a definition
(ii) the problems of definitions
(iii) the ways of definition

The need for a definition came out through discussion in the class and following three crucial parts were pointed out by the students:
(a) a knowledge of parts of anything
(b) awareness of the needs --> rights
(c) it stands for many ideas as a summary

The class also came up with the 'measurement' of disability as a way of defining disability. Well done!

With respect to (ii) and (iii), we started the discussion with the language of disability, well known in the literature but not at all known generally and especially in a country like India, where the official documents and the media continue to refer to DPs/ PwDs as 'Physically Challenged' -- which actually descended on us from the west about 15-20 years ago as, in fact, the politically correct term, little realising that this term clearly and surely locates disability back in the person. I also explained my own take on it: it gives me the image that the so-called non-disabled people are sitting there at one high platform and watching (may be even with concern) how a disabled person is climbing up the stairs to this so-called high platform, how they are facing the challenge and 'winning' against all adversity. It's a terrible image.

I also discussed how these four ways are usually employed in defining disability, namely, simple statements, theoretical models, classification schemes and measurement.

1.

Goals of Disability and Human Rights course

I have added some new stuff in the 'Plan' handout used for the Disability and Human Rights (DHR) class at the EOC this semester. The new stuff is the 'Goal' section, the 5 goals make the following points:
Goal 1: related to the point discussed earlier that this course is not about two separate topics 'disability' and 'human rights', rather, it is about how disability is a human rights issue. This is our starting point, I will show that as long as disability is treated as a rights issue separate from human rights, it will only succeed in serving the cause of the segregrationists.
Goal 2: Legal aspects of disability are very important as they are brought about after years of hard work and activism, they are not achieved in one day. Once an act comes into force then it becomes an instrument of empowerment in terms of how it affords people the 'right' to demand their rights. For any career in advocacy in the future, a thorough knowledge of the Acts is of utmost important because the Indian Constitution is a powerful instrument that ensure justice for all. I strongly believe that to carry out one of the most important agendas of disability studies, namely, to not divorce activism from academics, taking the legal path is the most effective one -- sometimes, this is forgotten in the zeal of 'street' activism.
Goal 3: The philosophical background of disability as a human rights issue is linked to the philosophy of justice and equality, and it's important to review the context and place of this stance in Philosophy. We will specifically look at Amartya Sen's work in this context, which is also the position taken by Martha Nussbaum, whose re-reading (and problematising) of the concept of equality is less brandied around in the disability field (and therefore, probably, more meaningful).
Goal 4: relates how the different waves of feminism and women's issues neglected disability and women with disability left behind, forgotten. Even now, most fora on feminism, mention disability simply as an add-on category, there is no indication of any active acceptance of a disability perspective and the resulting enrichment. We will also discuss how the UNCRPD though has a separate section on women with disability, most disability acts of most countries show reluctance in designing separate articles for WwD.
Goal 5: relates to the active union driven movement in disability which earned disability a place in the academia, however, which continues to be neglected in the governmental acts and laws. In fact, most disability laws of most countries, do not accept the tenets of the social model. Unfortunate.

EOC: Vision and Future

[Talk given at the AIF-RTE meeting, 7^th Nov. 2009, University of Delhi]

The Equal Opportunity Cell, of the University of Delhi (http://eoc.du.ac.in) was constituted in 2006 with Rama Kant Agnihotri as the co-ordinator to provide equal accessibility and a barrier free environment to persons with physical disabilities and students in reserved categories, such as SC/ST/OBC and other minorities.

Right at the beginning, I’d like to emphasise that ‘barrier-free’ is now a much familiar phrase which, in the common imagination, implies environmental aspects of accessibility (like building more ramps, putting up signages, etc.), but as Anita Ghai in her talk later will re-emphasise, it is more than a physical concept alone. In fact, we have come to stand for the view that the barriers are more a part of the society and the collective mind-set of the society peopled by the majority doing and building things for the majority.

When the EOC was constituted, there were very few members and even fewer enthusiasts and takers. We didn’t have a space of our own, the meetings were held every month or at least every two months, in a tiny corner of the Braille library where a motley crowd of 10 or so people, including some interested students, would gather to discuss the newly emerging issues to do with disability. Even we didn’t have a clear agenda but one hallmark of this early period was the accessibility audit that was conduced for the colleges of the university, and later for many university buildings, by Samarthyam. It is only now that the implementation work of that audit is taking shape slowly. Apart from that, we would deal case by case issues of disability as referred to the committee. Early on, we dealt with the inhuman case of one lecturer of this university in wheel chair who would sometimes have 2-3 hours gap between two classes and would have to simply wait in the corridor in the wheelchair, the teachers room being on the first floor; there wasn’t even an accessible toilet and the person would have to be carried by two people to the toilet.

It took two years of single minded vision of Prof. Agnihotri and few dedicated individuals associated with him to bring into existence the modern space that we have now. This, in spite of active and genuine support from the Vice-Chancellor and Pro-Vice-Chancellor of this university, for whom, the EOC is like their favourite child – so much so, that in all the functions that we have arranged so far, at least one of them, and sometimes both of them, like on the Orientation Day, would be present. We do not have any high-profile function, we do not get dignitaries in our centre, but the VC and/or the PVC’s presence can be counted upon. With this support and the generous support from NTPC, who on their own came up to provide financial and engineering help, the DU-NTPC ICT Centre was inaugurated on 20^th October 2008.

After the centre was set up, along with continuing the earlier work, it has also made available assistive devices through another NGO Saksham to ones who need them, produced about 100 scanned books and collected 4000 e-books. A strong area of the EOC has been to hold sensitising and awareness workshops for different groups within and outside the university. Again, we have a very dedicated staff of people manning the centre, Dr. Nisha Chandra Singh, the Officer on Special Duty has been looking after the workshops very efficiently among other everyday work at the Centre, Prashant Verma who is the manager of the Centre employed by the NTPC has been looking after the ICT course, Hidam Gaurashyam (technical assistant for the Hearing Impaired) and Ramnik Singh (technical assistant for the orthopaedically impaired) are hired as specialists in their areas and they are doing a commendable job. In addition, we have a very dedicated staff of people like Geeta, Vinod and Rajbeer who have been doing much more than just their job profile demands, like everybody else at the Centre. Almost all these people are here today making this meeting happen!

However, the flagship programme of the Centre has been the short-term certificate courses that were started on December 3, 2008; in fact, Sonal Sena, sitting here, was the one who took the first class at the Centre – it was as a part of the Disability and Human Rights course. We started with 4 courses, namely, Sign Language Interpretation (A Level), Disability and Human Rights, Information and Communication Technology, mostly geared toward the Visually Impaired, and Communicative English, mainly geared towards the reserved candidates. Although we didn’t have a lot of time for publicity, we managed to get a good number of students (88) during the first run. Many experts from the disability field were invited to deliver special lectures and take classes as part of the Disability and Human Rights course. For the next batch of courses, we introduced a new course entitled News Reading, Anchoring and Voice Over taught by well-known television personality J.V.Raman; several invited lectures were given by experts from Doordarshan on topics ranging from news reading, anchoring, makeup, lighting, to the portrayal of disability in the media by Anita Ghai a few weeks back. Further, among the next batch of courses to be started in January 2010, we’d like to introduce another new course, Sign Language Interpretation (B Level) for students who have passed the A-level course of this Centre or any other institute. The courses have been a judicial mix of skill development and awareness building. Thus, they are designed to provide skills required to enhance job prospects and also to provide manpower for sectors dedicated to working for the disabled, like Sign Language interpretation and Human Rights.

Apart from the courses, the other academic component of the Centre has been to hold monthly workshops on Sign Language which has been quite popular and reports of the workshops are available at the EOC website. We are also concentrating on issues that have to do with the universal evaluation metric that is applied still in our schools and colleges, where the orthopaedically disabled person is forced to climb up exams and interviews, where the visually impaired person is forced to write exams with or without assistance, where the deaf is interviewed or orally examined. Very few people know that reading or writing skills of the blind or the deaf is very low, and this is not only the case of India in isolation. A survey in the US revealed that 18 year deaf students have the reading skills of a 6^th grader. I have been saying this for a while, that among the deaf there is a high level of illiteracy, that is because the education system as a whole, and definitely the evaluation method, is heavily biased against the disabled. We need to address strongly the issue of equitability of testing and exam systems. I think this meeting of educationist and school-teachers here can take this up in one of their future meetings.

However, we don’t want this to turn into a mere training centre, otherwise it will be just a centre for getting a DU certificate. A mere training centre cannot take the movement ahead – I am calling it a ‘movement’ because that is how we need to view disability at the moment and perhaps for another half-a-century to come. There needs to be an underlying philosophy that binds us together and takes us ahead. I outlined this in a recent talk in the context of the philosophy of justice of Martha Nussbaum. There she proposes the Capabilities Approach, which advices us that instead of making bargains as equals, we’d be better off if we participate with our varying degrees of capacity and disability and establish an interconnection of mutually dependent network with each other. For example, I mentioned earlier the high level of illiteracy among the deaf, it is quite possible to make minimal adjustments and create a network between the deaf and the hearing where there is a give and take relation between the two.

In addition, we also need a political vision, especially in a world that is threatened by, what I call, radical homogeneity. With the dissolution of a mainly bipolar world (at least in the Anglo-American discourse), the initial euphoria of globalisation has given way to this threat of radical homogeneity that has pervaded across many spheres of life. This complete absence of agonism and antagonism and conflict in opinion-making can be countered only if a radical form of democracy can be extended to more and more spheres of our lives. And an institute like the Equal Opportunity Cell is one such sphere. The logic of equality cannot be the logic of homogeneity, it has to be the logic of ‘equivalence’. This is where we tie up with an organisation like the AIF-RTE, and also in our need to enrich our experience of activism, I think we are doing alright with teaching, training and documentation aspects but the activism side has been so far lacking and we are fortunate to be able to host this meeting and learn something in return.

©Tanmoy Bhattacharya 2009