Great things are not done by impulse, but by a series of small things brought together – Vincent Van Gogh


Seema is an angelic looking six year old with severe Cerebral Palsy (CP) and the only child of her family. In the hall of their second story flat, she sleeps for a better part of the day, sedated by the strong medication she must take. Lucky for Seema, she came from a well to do family, they took little Seema to all the best doctors in Goa and Mumbai, who conducted batteries of tests and reached the same conclusion. All those doctors did was give Seema medication to stem the fits caused by the irregular supply of oxygen to her brain. However that’s not the most important things Seema needed or needs. She requires physio therapy every day, sensory stimulation, social integration and at six years of age she needs to be enrolled in school[1]. Instead Seema is confined to her home, she never meet children her age nor is she taken to social events, and her highly stressed mother struggles between her teaching job and the constant needs of her daughter.

 

I wouldn’t have expected to come across a case like this in Goa, not because of its severity but for its utter lack of social support, ignorance and exclusion. This tourist paradise, with its high literacy levels, high standard of living, highly conscious people, and image of a well developed State is obviously not all a rosy picture. For at least with reference to disability it seems no different from other States of the country. The social stigma is still very high and results in social exclusion, there is tremendous ignorance about the types of disabilities, the needs of people with disability (PWD) and their needs for inclusion, the government has been making tall claims but an analysis will reveal there is still a large unmet need for basic facilities among PWDs in Goa.

 

Unlike the rest of the country where figures of PWDs run into lakhs, Goa claims to have just 15,000 PWDs.[2] This figure like in the rest of the country will surely be highly contested, as the accepted rate of disability in developing countries such as India is 5-7%. Even then the figures are not large and rehabilitation is very doable for a State like Goa.

The disability sector in India is presently at a crossroad, as it moves from the ‘Charity approach’ that characterized it for well over five decades to the ‘Rights based approach’. Everywhere we now find PWDs coming forth with a deep sense of confidence, understanding of their rights and a clear demand to be situated within the development paradigms of the country and State. The PWDs in Goa should not lag behind as the country makes this quantum leap. There is thus a new for the ‘alternative sector’ to seriously incorporate issues of disability into their work, this is especially true for the women’s movement, labour, children and consumer movements.

Definition

When most organizations begin working on disability, they usually choose a single type of disability to work on, fair enough when one realizes the area of work and its scale. However The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 lists seven types of disabilities namely Low vision, blindness, speech and hearing impairment, Locomotor disability, leprosy cured, mental retardation and mental illness. While there is much work happening across the country on the first six disabilities, mental illness is a highly marginalized one. In most discussion on The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, mental illness is all but forgotten and even then when one referees to mental illness it invariably brings to mind medical intervention rather than the Rights of the individual. Because most organizations work on a single type of disability, they also end up advocating and lobbying for just that single disability. This not only makes their perspective inadequate but also makes the voice of the sector narrow and fragmented. This is an error the disability sector in Goa would do well not to make.

Identifying disability

The first thing that needs to be countered in the disability sector is the ‘ignorance’. What is disability – the types and degrees, how is it caused, how do we detect it early, what do we do once a child with disability has been identified, are some of the major questions. We need the Dept. of Social Welfare and Senior Citizens who also deal with disability to create awareness on these issues. The progression of the disability can be slowed if detected early and the child is given appropriate medication accompanied by physio therapy as and where needed. Unfortunately we do not have a Disability Screening Centre in the State that could have aided early identification and saved parents precious time and heartache as they rush from one “good doctor’ to the next. We will probably need a centre each in North and South Goa. These Centres can also do genetic counseling, to couples who have had children with disabilities or who may think they have the potential to do so. As ignorance about disability is dispelled, increasing number of cases will be identified, a Disability Screening Centre and a referral point will then be desperately needed.

Once a case is detected and assessed for its type and degree, the next step is medical intervention and/or physio therapy. Chennai, Bangalore, Mumbai[3] have some excellent institutions and their methodology and techniques can actually be replicated in Goa, or the Government can have tie-ups where children from the State can be referred to these institutions.

Welfare in medical rehabilitation

Most of the various types of disabilities require medical attention at one point of time or the other. Some require medical attention by way of corrective surgery and physiotherapy, others require medication. Some require medical attention for a short span of time other disabilities require it for years or through out life. Specialized medical attention is not cheap and the family may find the PWD a drain to their meager resources, it is therefore important for the govt. to have an insurance scheme or mediclaim for PWDs.

Education

Providing education to CWDs is the only lasting way out of the poverty and social exclusion that so characterizes their lives. The Sarva Shiksha Abhayan[4] was started by the Ministry of Human Resource Development in 2001-02. Huge financial outlays were made to increase enrollment, reduce drop out rates and enable retention of students in schools. The primary goal of SSA is inclusion of CWDs into regular schools. To some extent the SSA has succeeded in increasing enrollment in schools across the country, however it has not succeeded in doing much for children with disabilities. The SSA has a whole set of personnel in the form of IERTs and CRP[5] who are supposed to survey the number of disabled children in each block, conduct medical camps and assist the teachers who have CWDs in their classes. They are supposed to have a data base of all the material gathered and update it every year. The IERTs are directly supervised by the BRCs who are supposed to conduct training programmes for teachers and facilitate the disbursal of funds to make each school accessible. Unfortunately a recent CAG report on SSA talks about the misappropriation of funds, non utilization and large scale failure in achieving its objectives. Here people can play a large role in monitoring the implementation of SSA. Recently the Education Dept. of Goa has announced the setting up of Village Education Committees to monitor the educational institutions in each village. These Committees will have to be sensitized on the needs of CWDs and can subsequently play a supportive and monitoring role for the SSA. Understandably, providing an education to a child with disability is not the easiest thing and requires a lot of innovation, for this the SSA has envisaged the setting up of Resource Rooms. Groups working on disability in the rest of the country are demanding the setting up of separate resource rooms for CWDs. There could be at least 4 Resource Rooms (1 for 4 taluks) in Goa where material can be collected and teaching aids prepared for teachers. The material can be in the form of video taps, audio tapes, puppets, charts etc. The Resource Room can have regular gatherings of teachers, children with disability and parents of CWD, such support groups would deal with the isolation and frustrations that each of them will have to tackle periodically.

One aspect that parents of CWDs have often found complaining about is that they have been left out of the education process of their child. Yet, they are one of the most vital components, as they follow up with the child at home. SSA seriously needs to focus on parents rather than only teachers, parents have a personal stake in the childs education and so are likely to do more even while the IERTs and teachers are stretched over large areas.

Where ever a child is found of be severely disabled and therefore unable to attend school, the SSA seeks to provide Home Based Education. This usually consists of a teacher visiting the childs home twice a week and teaching the child life skills so that the child is less dependent on the care providers. The SSA provides for a stipend of Rs, 750 per volunteer teacher who is expected to teach a total of 3 CWDs at a time. The volunteer is given a 3 day training as induction this training is highly inadequate as disability is a pretty complex field, however NGOs in Goa can work with the SSA officials to redesign and upgrade the training and even fill it in with an exposure trip to a neighbour State. Most States while implementing other parts of SSA have quietly ignored Home Based Education. It would be interesting to find out whether the Education Dept. of Goa is actually providing HBE and monitor its effectivity.

The thrust of organization presently working on disability is on the seven disabilities mentioned in The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, children with learning disabilities like slow learners, dyslexia and behaviour disorders are totally ignored. There is a need to expand the definition of disability and meet the educational requirements of these children as well. SSA which has ‘flexibility in planning’ as one of its principals could especially take cognizance of these children.

While much emphasis is placed on primary education for CWDs, higher education is given little or no attention. There is an urgent need for educational institutions like the Goa University to open up a Resource Centre where learning material is available for students with all types of disabilities especially, students with low vision, visual impairment and speech and hearing impairment. Here the material will have to be in Braille, audio tapes (or talking books), computers will have to be installed with Jaws, books with large print etc, this will enable students with disabilities from various colleges to access material from a central point. A centralized system will also be cost effective for the University. The colleges and university also need to be made accessible for all types of disability and Goa University can replicate the system presently being used by the Delhi University. The Education Dept. must also compulsorily have a reservation in its scholarships for Students with disabilities.

Another vital component of education for CWDs is pre-employment and vocational training. There is a need for at least 3-4 ITIs in Goa to be made disabled friendly in that they have teachers who can teach in sign language to speech and hearing students and that they be accessible to students with locomotor disability.

Employment

One of the ways to bring about a greater sensitivity towards disability is to make PWDs more visible. What better way to bring about visibility than to welcome them into the workplace. An economically independent PWD has greater control over his/her life and will experience greater social integration. The Labour Dept. needs to develop a policy that makes employment of PWDs easier. Recently PWDs have been demanding a mandatory 5% reservation in employment for PWDs in the public and private sectors and to be brought within the first 10 listings in the reservation roster. With unemployment rates soaring, PWDs are asking that the government put greater thrust on self-employment opportunities by making it easier to access loans, by reducing paper work, and give more soft loans. Interestingly, the Government of Goa has recently decided to give incentives to the public sector to employ PWDs. This is a step in the right direction, provided it is time bound. After a maximum of five years the government must make it mandatory for private companies to employ PWDs in the 1,075 types of jobs identified by it. There is also a need to modify labor and industrial policy to give incentives to companies that employ PWD, ensure companies make their work environment fully accessible and that penalties be imposed on employers who discriminate against PWDS.

Interestingly leading companies especially in the IT sector and garments have been displaying a progressive attitude towards PWDs, modifying buildings and opening up once excluded areas. This change in attitude is more in recognition of the obvious benefits of employing PWDs, not only are PWDs more focused at their work thus enabling larger output but the labour turnover for them is also comparatively low. Employing PWDs also sits well with the private sectors “social corporate responsibility”.

In 2001, the National Government initiated expert committees to identify types of jobs suitable for people with different disabilities. A list of over 1,900 jobs has been prepared and circulated to all Ministries of the Government, while 1,075 jobs in the private sector were identified. This listing should be used to monitor obvious discrimination against PWDs.

Social Welfare schemes

Social welfare is extremely important for PWDs precisely because their disability may require a lot of resources that they may be unable to organize as they are located in a situation of unfair competition, inaccessible environment and thus they have fewer opportunities to become economically independent. It is also noticed that for a larger number of PWDs, their economic class, caste and gender also act as factors of oppression. It is therefore important to have carefully formulated welfare benefits for people with varying degrees of disability. When framing schemes it is important to keep in mind all types of disabilities. PWDs are demanding a single identity card with a social security number that will be accepted by all Government Depts. within the Sate and across the country. What they also need is an insurance scheme with a low premium, there is also a need to get assistive devices and mobility aids at subsidized rates or free of cost depending upon the economic capacity of the person, a pension that can sustain their day to day requirements, subsidy in medicines or free medicines when they are required for prolonged periods or for life as in the case of CP or mental illness. Half way homes when PWDs need to be kept briefly when their caregivers are away. Crèches, when the caregiver needs to also be working, Aged homes when elderly PWDs require continuous attention, rehabilitation centres where PWDs can be trained and reabsorbed into their families or a work environment, counseling centres to assist PWDs understand themselves and to guide the immediate family members etc.

Disability related personnel

If Goa is to effectively deal with a majority of the requirements of PWDs it is going to need personnel. Surprisingly disability related work does not need highly qualified college educated personnel alone. Organizations in the neighbouring States of Karnataka, Andhra have examples of how young SSLC (SSC) students have done courses offered Rehabilitation Council of India (RCI)[6] and an internship to become excellent CBR workers, development workers, physio-therapists etc. Doing a one and a half year RCI course is the best way to training large number of people in a short time.

It is the development workers that identify cases, assist the PWDs to get their medical certificate, disability card, give information on Government schemes and how to access them, they also access the persons needs for assistive devices and refer them to medical attention or to organizations who provide aids and appliances. The Community Based Rehabilitation (CBR) workers visit PWDs in the community, identify their need and are in constant touch with the family and the PWD through frequent visits. These people are the resource pool that guides the PWD, not but on disability but general issues as well. The physio-therapist in the community go about visiting PWDs assessing the degree of disability, coming up with a regime for therapy, providing physio therapy, teaching the care giver physiotherapy so that the child especially with CP and those with spinal cord injury get therapy as rigorously as they need it, recommending aids and appliances etc. They also inform the family about what is happening with the PWDs and how to observe changes.

Grassroot organizing

Disability is a wider and larger issue than that which can be restricted to a few trained personnel. For any issue to become a peoples movement it is important that there be grassroot organizing and this applies to the disability sector as well. While organizing PWDs into village level groups, taluk and district level federations, it is also important to ensure that PWDs become leaders of their own movement. Grassroot organizing should be along the lines of a self help system. There is also a need for the disability sector to broad base into other issues and movements like women, children, labour, health, consumers etc, cause disability is too Herculean a task to be taken up by just 5-7% of the population.

Accessibility

When one looks at the entire disability sector, one aspect that really hinders PWDs from establishing a public presence for themselves is the lack of accessibility. Accessibility is the glue that attaches them to larger public spaces and gives them visibility. It is what helps them live a more productive and creative life. Goa is fortunate enough to have a judgment, 539 of 2004 given by the High Court of Bombay in Goa which provides the Government with a very clear mandate to make all public spaces, buildings and modes of public transport accessible. This judgment must be used effectively to make the Government use universally accessible designs in all its constructions and also make it mandatory for private buildings to do the same.

Women with disabilities

Special mention must be made about WWDs who invariable have to bear an already deeply ingrained bias towards women and also deal with the social exclusion and stigma of being a PWD. Studies show that WWDs are twice more likely than other women to face abuse. Therefore it is of uttermost important to make WWDs aware of their rights as women. It is also noticed that WWD often get cheated of their inheritance. It is precisely for this reason that the Govt. of India passed the National Trust Act.

Social Inclusion

However a major hurdle faced by PWDs and their families is not the hindering capacity of the disability itself but of the social stigma. Social stigma operates on a vicious cycle, it forces PWDs to remain confined to their homes and perpetuates ignorance.The ignorance in turn perpetuates social stigma fueled by ignorance. What the Dept of Social Welfare and Senior Citizens and the Disability Commissioner needs to do is create awareness about PWDs and highlight the ‘human’ aspects of their lives. PWDs do not want sympathy; they just want sensitive people willing to accept them as their equal and an accessible environment so that they have greater control over their movements and thus their lives.

What Goa needs

Obviously there are various aspects of a PWDs life and it is not adequate to support just one of it and assume the rest will take care of itself. Presently there is tremendous ignorance on disability in the State, the information is fragmented and parents, and PWDs needlessly go through months and sometimes years of heartache as they search for assistance and guidance. Thus Goa needs is something like a ‘multi-activity centre’, where activity, on all aspects of disability can be coordinated from. Chinchinim presently has a leprosy home that is lying dilapidated and only a few cured lepers spend their days in exclusion, this place can be revived for all disabilities.

Conclusion

Goa needs to put in place facilities not just for itself but also because it has the potential to caters to a large border population from Karnataka and Maharashtra, who have a very small chance of traveling to distant metros and who are so economically poor that they cannot really afford the cost. The economics and the lack of access to health facilities are the prime reasons why mortality rate among PWDs is fairly high. In a society that is inching towards the ‘developed’ status this is not something that society and the disability sector as a whole can accept meekly.


[1] According to the Sarva Shiksha Abhayan which has a zero rejection policy every child between the age of 6 and 14 must be enrolled in schools. Those children with severe disability who are unable to access regular school will be provided with Home Based Education.

[2] . Undoubtedly the figures are wrong, as the 2001 national census records just 2% of the population as disabled, when, in developing countries one can expect the figure to be 5-7 % and if one adopts the WHO definition it would go up to 10%. We can however stick to 5-7% figure as this would constitute the cases in need of urgent attention.

[3] Chennai The Spastic Society of Tamil Nadu Opp TTTI Taramani Road, Chennai-600113 Tamil Nadu. 91 – 44 – 22541651, 22541542 Fax: 044-22541047, Email: spastn@md2.vsnl.net.in website http://www.spastn.org/, BangaloreThe Association of People with Disability, 6th Cross, Hutchins Road, St. Thomas Town Post, Bangalore 560084, Spastics Society of Karnataka, No 31, 5th Cross, 5th main, IndiraNagar, Bangalore, 560 038. Tel: 91 – 080 – 25281831, 25280935, 25274633 Fax: +91 – 080 – 2528 6129 Email ID: spasticssociety@dataone.in

website http://www.spasticssocietyofkarnataka.org/, The Spastics Society of India, Bandra Reclamation, K.C. Marg, Bandra (West) Mumbai 400 050 (India) Tel: 2644 3666/ 2644 3688/ 2643 0703/ 26430704 Email: mithulaur@hotmail.com Website: http://www.nrcissi.org to mention a few.

[4] Sarva Shiksha Abhayan – http://ssa.nic.in/

[5] Integrated Education Resource Teachers (IERTs) who have been trained to handle CWDs, assess them, prepare work plans, prepare resource materials, conduct training programmes for school teachers etc/ Cluster
Resource Persons (CRPs)

[6] RCI – http://www.rehabcouncil.nic.in/index.htm

 

Abbreviations used

 

PWDs – Persons with Disabilities

CWDs – Children with Disabilities

IERTs – Integrated Education Resource Teachers

CRPs – Cluster Resource Persons

 

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