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Reading Room
Disability - Challenges Vs Responses by Ali Baquer, Anjali Sharma

Partners in Caring

Amar Jyoti Rehabilitation and Research Centre :
Amar Jyoti was founded as a charitable trust in 1981 for the disabled children. It employs an integrated approach with a package deal comprising of school with integrated education, vocational training, in many courses – Computer training, Fashion and dress designing, Knitting, Textile designing, Screen printing, HMT watch repair service therapy, arts and crafts, medical care with an OPD, operation theatre, X-Ray, Pathology, Physiotherapy, Occupational therapy sports and extra-curricular activities, provision and manufacturing of mobility aids, community based rehabilitation, teachers training courses and a child guidance clinic which ensures a wholesome personality development of persons with disability. Both able bodied and disabled children study together in equal numbers from nursery to class VIII so that they can enter into the mainstream education without any difficulty.
It also has a publication cell which publishes CBR newsletter, AHRTAG CBR newsletter in English and Hindi and others.
It has also three CBR centres in 10 villages each in East, Central and North Delhi. It has also started a branch centre in Gwalior (M.P.) which also provides social counselling.

The National Association for the Blind, India (NAB)
The National Association for the Blind, India (NAB) is a pioneering blind welfare institution in the country. It provides a wide range of services for the comprehensive rehabilitation of the blind including education, training, employment and placement services.

Background And Objectives
With a view to focus on the delivery of rehabilitation assistance to blind women, the Executive Council of NAB appointed in 1981 the NAB Committee for Advancement of the Status of Blind Women.
Since its inception, the Committee has directed special efforts to locate and register blind women, assess their needs, provide counselling services and financial assistance for educational, medical and marital purposes; arrange training and awareness programmes in rural and urban areas, and rehabilitate them through open or self-employment.
In July 1988, the Committee set up a Job Development Centre for blind women in NAB Rustom Alpaiwala Complex at Reay Road, Mumbai. The objective is to rehabilitate visually handicapped women by providing training and work opportunities on an "earn while you learn" basis. The Centre acts as a catalyst in obtaining on-going work and provides infrastructure and support facilities, supervisory and co-ordinating staff to facilitate the training and earning programme. The aim is not merely to train them in a particular skill, but also to inculcate a work culture, raise productivity levels and motivate them to become more enterprising; to help them develop self-confidence, an identity and existence of their own; and to create the awareness that they can become contributing members in their families and not remain helpless dependents.

Operations
The unit functions as a Day Centre on a non profit basis and is an experimental model from which appropriate extension could be made for setting up similar centres in other parts of the country.
The number of trainees attending the Centre has gone up from 3 to 37 between July 1988 and May 1996. Currently, they are exposed to different activities, including simple sorting, packing and making decorative items. The Committee has appointed three staff to look after the training, work flow, and quality control. Four sewing machines have been installed.
The trainees are paid a minimum stipend on a daily basis until such time as their actual production earnings (on a piece rate basis) crosses this minimum. Thereafter, the trainees are paid at actuals.
To supplement the income of the trainees, and raise funds for their welfare, the Committee undertakes special projects at festival times; Raksha Bandhan, Diwali and Christmas when the women make rakhis, gift envelopes, diyas, torans, garlands, fashion jewellery and Christmas decorations for sale.

All India Federation of The Deaf (AIFD)
The All India Federation of the Deaf (AIFD) was set up on 22 December, 1955 at the first All India Conference of the Deaf held at Constitution Club, New Delhi. The aim of setting up the Federation was to unite the deaf all over the country, to strive for their all round welfare and total rehabilitation and to further the interest of the deaf, to maintain liaison between the deaf and public Government and other authorities and to educate the deaf in the country for their rights and responsibilities, etc.
The activities of All India Federation of the Deaf include free distribution of hearing aids to needy and the poor, material and moral assistance to affiliated state organisation, participation in National and International Congresses and seminars, counselling and guidance to organisations of the deaf in cultural performances, painting, photo and other competitions.
In 1957 the All India Federation of the Deaf was affiliated to the World Federation of the Deaf. The institute Vocational Training Centre for Photography was established in November 1960. The Printing Press Institute for the deaf was set up in November 1962.
The AIFD organised the 2nd All India Deaf and Dumb Sports Meet at the National Stadium in 1965. A special feature of this meet was the creation of All India Sports Council of the Deaf (AISCD) as the sports wing of the AIFD.
The AIFD started its official magazine "Mook Dhawani" in March 1968. In the same year Dr. Zakir Hussain, the then President of India, accepted to be the Chief Patron of the All India Federation of the Deaf.
The AIFD expanded its rehabilitation activities including grant of individual assistance to the needy deaf persons. A nucleu of the programme of giving free hearing aids to the needy was also set up with gifts from some eminent companies. The Federation decided in 1982 to hold special camps at various places for free distribution of hearing aids to be available to the beneficiaries nearest to their homes. Since then such camps have been held in almost all states of India including Rajasthan, Madhya Pradesh, Tamil Nadu, Kerala, Orissa, Maharashtra, Assam, Gujarat, Haryana, Punjab, Jammu and Kashmir, Himachal Pradesh. Since then about 11,600 hearing aids have been distributed.
The trades in which the Multipurpase Training Centre for the Deaf (MPTCD) started functioning in 1976, now imparts training are Printing Technology, Photography, Fitter and Turner, Computer, and Tailoring.
The number of trainees who have passed out from the two years course in various trades during the last 10 years is about 700. All of them have been gainfully employed.
The trainees for the Multipurpose Training Centre for the Deaf (MPTCD) have been coming not only from Delhi but also from almost all other states. Some trainees have been coming from Nepal also.

Hostel for the Deaf
The project for the building of the hostel for the deaf, the work for which had been entrusted to the Military Engineering Services (M.E.S.), Ministry of Defence, Government of India, has been completed. It has an accommodation for about 100 boys and girls.
From time to time, the AIFD organises leadership training courses. This includes orientation courses, workshops to discuss needs of the deaf, how deafness can be prevented, and identifying of jobs and skill training which would be useful for the deaf. International Day of the Deaf is celebrated with great enthusiasm by affiliated organisations.

Akshay Pratishthan
Akshay Pratishthan, with its approach of rehabilitation of people with disabilities, has been rendering qualitative and quantitative services in Delhi and Rajasthan since 1987. In 1995–96 Akshay Pratishthan sponsord by ACTION AID started its Community Based Rehabilitation Project in the areas of Rajasthan.
Akshay Pratishthan aims at the rehabilitation of people with disabilities through integrated education, medical care and vocational training. The mainstreaing is done by organising integrated cultural and sports activities. The main emphasis of the organisation is on early intervention in the management of disabled children.
The aims of the organisation are to provide equal opportunities of education, medical care and vocational training to the people with disabilities. The main areas of work of the organisation are integrated education, vocational training, medical care, individual counselling, community based rehabilitation, medical camps which provides mobility aids and appliances.

Programmes and Activities :

  1. Education : An equal number of able-bodied and disabled children study together from Nursery to Class VIII in an integrated set up with the aim of mainstreaming them into other good schools. Vocational training, sports and extra-curricular activities are a part of the curriculum. For upgradation of knowledge regular workshops and seminars are organised.
  2. Medical Services : Therapeutic services are rendered from the departments of Occupational therapy and Physiotherapy. Honorary consultants visit the centre for regular medical check-up of students and staff. The orthotic workshop provides aids and appliances as per need.
  3. Vocational Training Programme : The organisation provides vocational training in the following courses– Carpentry, Computer, Weaving, Block Printing, Art and Craft, Tailoring, Beauty Culture, Home Management, Book Binding.
  4. Community Based Rehabilitation : In partnership with ACTION AID, Akshay Pratishthan is rendering rehabilitative services in urban slums of Delhi and villages of Rajasthan.

Akshay Pratishthan has a few publications like Akshay Patrika, its newsletter, Annual Report and some awareness material.

The Federation For The Welfare of The Mentally Retarded (India) FWMR (I)
The Federation For The Welfare of the Mentally Retarded (India) was formed in 1966 with the main object of mobilising resources to provide various services and facilities to mentally retarded persons all over the country and bring them into the main stream of national life The Federation was registered under the Societies Registration Act, 1986, with its headquarters set up in New Delhi. Of over 200 institutions of different denominations working for the retarded, 168 are regular Members of The Federation. Besides, 161 eligible persons are enrolled as its Life Members.
The Federation has developed a multi-directional approach at the individual, organisational and governmental levels. Initially, the main aims are to promote parent counselling, conduct special teacher training, refresher courses for parents and teachers, research, and to disseminate technical and general information on various aspects of mental retardation. In all these fields suitable guidance is provided by the Technical Cell of the Federation. The Federation had set up the National Trust for the Handicapped on December 8, 1976.

Sahan Institute
The salient features of the Institute are comprehensive education for mentally handicapped, specialised training for teachers and other categories of personnel including those required to be deployed to work in rural areas, sheltered workshops for vocational training and research facilities.
Sahan Institute caters to the education and training of students in the age group of five to thirty years, belonging to various categories of retardation. Sahan also provides a wide avenue for developing latent talent in the sphere of academics, sports, fine arts and crafts. It also has a home-training programme for retarded children unable to attend school. A three month Training Course and a short-term Certificate Course are conducted by Sahan. In the sphere of research various subjects are included in its programme Sahan also provides opportunity to NSS volunteers and trainees from colleges etc. to work in the school on deputation.
The Federation has also set up a Centre for Human Development at Yalahanka near Bangalore to meet the needs of mentally handicapped in the Southern region of the country to the extent possible.
The Federation has a Central Library which has publications of eminent experts, Indian and foreign, on various aspects of mental retardation.
The Federation also holds, periodic sports competitions and is planning to undertake regular sports training on an annual basis by organising coaching camps for teachers/volunteers and special educators.
For the purpose of disseminating information and making the government, industry, society, etc. aware of the problems of the mentally retarded, the Federation regularly organises seminars, workshops and conferences.
Foster Parent Scheme–Service clubs and individual donors have helped the Federation to launch its Foster Parent Scheme, where a donor makes himself/herself financially responsible for the education and training of a mentally retarded child by making regular monthly payments for a specified period.
The Federation brings out a quarterly journal ‘The Mental Retardation Digest’ which gives technical information on various aspects of retardation and a monthly ‘Newsletter’.

ActionAid
India started a separate division in 1988, to deal with projects for disabled people. The Disability Division now supports over 40 Non-Governmental Organisations involved in rehabilitation physically, mentally and socially disabled persons all over the country.
The Disability Division of ActionAid works on the model of decentralised rehabilitation services for the country, modifying the concept of Community Based Rehabilitation (CBR) as propagated by the UN agencies. In 1995, there were 16 such demonstration CBR projects, implemented by well established NGOs which gave the Division access to experience and information from one of the largest sets of CBR projects in the world.
Feasibility studies were carried out for starting another CBR project in Allahabad, Uttar Pradesh. Participative evaluations were carried out in five of the older CBR projects.

Training of CBR Managers And Planners
The Division started a 4-week experiential training programme for planners and managers of both micro and macro-level projects and programmes, on policies and strategies for CBR.

Research
The Division introduced research as a major component of its work, primarily to convert the CBR ideology into a definable programme.

Vocational Rehabilitation
Considerable emphasis is given to vocational rehabilitation and its pivotal role in comprehensive rehabilitation services. For example, the Shree Ramana Maharishi Academy for the Blind, Bangalore, has a packaging training unit which produces corrugated packing boxes for brooke Bond India. The Academy has also set up a silk weaving unit to train disabled people, which will tie up with the Karnataka silk industry corporation for the marketing of finished goods. The Amar Jyoti Charitable Trust in Delhi has established a watch repair unit in collaboration with HMT Limited, to train disabled people.
ActionAid’s strategy for rehabilitation in India envisages the establishment and support of independent units (local NGOs) in different locations, offering comprehensive services of prevention medical rehabilitation, education, vocational training and social rehabilitation for people with different disabilities. Each unit is autonomous, with its own legal status and management, yet linked to ActionAid, which plays a co-ordinating/facilitating role for inputs on training of manpower, research and networking/ information dissemination. Individual units are encouraged to network themselves for information and learning the idea is to promote many such units so that even if some fail or wind up, others will continue over time, reaching larger numbers of disabled persons. All units promoted by ActionAid are encouraged to set up different vocational training/income generation programmes for disabled people from the outs etc.

Technical Consultarcy
The Division provides technical support to organisations in India.

Tamana
Tamana is a non-profit voluntary association registered in March 1984. The purpose of Tamana is of helping the cause of developmentally disabled and minimal brain damaged children. The principal aims are to :

  • Maintain a motivated, dedicated and quality oriented team of professionals.
  • Educate and prepare multiple handicapped children to live within the community, having achieved threefold self dependence–physical, social and financial – to the best of their abilities.
  • Provide therapy and counselling appropriate to their needs.
  • Actively contribute to programmes towards building social awareness through appropriate media (conferences, telefilms, television, seminars, literature, etc.)
  • Conduct critical research in key areas of special education and training including in-service teacher training.
  • Provide expert legal and/or medical aid to such persons.
  • Establish and promote mutually beneficial relationships with international organisations which have similar objectives.
  • Introduce relevant computer-aided education.
  • Utilise science/technology to facilitate their physical and mental growth.

Tamana pioneered the concept of integrated education well before this became a part of the National Policy on Education. The school educates and rehabilitates one hundred and forty mentally handicapped children with the help of two directors, twelve trained professionals and twelve teachers/aides.
In-house professional expertise is available in the form of a speech therapist, occupational therapist and a special educator. It also has a panel of highly competent doctors – physician, pediatrician, neurosurgeon and eye specialist.

Academic Programme

Individualised Education Programme (IEP) :
The programme looks at the child as a whole, thus each IEP includes areas of development including self – help, language and communication, motor development, personal – social skills and functional academics. The school is divided into 6 groups on the basis of the children’s functional levels and chronological age. Each group has a classroom setting.

Vocational Training
Tamana offers specialised commercially oriented vocational training in a few courses like Office Assistance, Textiles.

Therapy
Seventy per cent of the students at Tamana require speech and occupational physiotherapy. Each child’s speech, language and motor problems are scientifically evaluated.

Field Trips/Recreational Outings/Camps
Trips are organised for students to familiarise them with the environment they live in. These trips are aimed at providing opportunities for the children to assimilate real life situations and to make their academic education functionally meaningful within their environment. Field visits include functional training at shops, post-offices, banks, bus stops, traffic squares, railway stations, restaurants, etc. Children also visit parks, the zoological gardens, amusement parks, circuses and museums.
Integrated camps are held annually to promote interaction between child and society.

Projects of Tamana

I. Rajiv Gandhi Outreach-Cum-Research Cell (RGORC).
The programme was established in 1992 with the Rajiv Gandhi Walkathon, bringing together 4,000 students from Delhi’s normal and special schools. The following are current activities :
First Step Early Enrichment Centre (First SEEC) – The programme deals with infants upto the age of 6 years. This is a Centre–based training programme in which each child is assessed, programmed for and trained on a one-to-one basis along with the parents who then carry on the programme for a week at home, coming back for further weekly guidance.
The Home Training Programme – The programme deals with children above 6 years and adults. It is Centre-based and assesses plans, teaches the student and parent on a one-to-one basis once/twice a week.
Counselling through mail – Indian Express runs a bi-monthly mailbox column for Tamana Special School to answer the many letters written to the column.

II. Literacy Programme For School Dropouts
The programme started in 1992 is a remedial education project being run in the transit colonies of Ekta Basti, R.K. Puram for school dropouts.

Telefilm Series
Tamana has made a five-film teleseries on how parents can train the mentally handicapped post school - age child.

Autistic Society of India
Tamana also works with Autistic Children. It founded the Autistic Society of India in March 1991.

Teacher Training College
A Teacher’s Training Cell with the introduction of a year long certificate course in Special Education (for teaching the mentally impaired), was inaugurated in 1994.

The Spastics Society of Northern India (SSNI)

Centre for Special Education
The Centre for Special Education (CSE) educates children to their academic and personal potential, using intensive technical inputs to maximise the quality of their lives; when possible, this includes achieving post-graduate and professional qualifications. CSE also operates as a laboratory for the development and evaluation of new aids and techniques, and provides practical opportunities for training new cadres of rehabilitation professionals. There are 77 students in the CSE as of July 1995.
In the Home Management (HM) project, the skills of parents/caregivers are built to integrate the family into all aspects of rehabilitation for their child. It provides individual and group counselling, parent support groups, and relief in the form of volunteers to help out at home, and community day ("respite") centres. As of July 1995, there were 647 children and young adults and their families participating in Home Management’s programmes.

Rural Community Based Rehabilitation (CBR) Project
All of the activities of SSNI’s urban-based services are carried out at the Rural CBR Project. The project covers 35 villages in Faridabad district, Haryana. It works to increase the community’s understanding about disability and participation in activities to prevent disability; and it provides services as needed. The project staff trains people from the community to become rural rehabilitation workers and village volunteers. They liaise with existing local medical and health services, and operate their own rehabilitation centre and integrated education programme. There were 282 children and young adults and their families participating in activities of the rural rehabilitation project as of July 1995.

Vishwakarma Work Training Centre
The Vishwakarma Work Training Centre (VWTC) works with young adults with multi-disabilities to achieve their maximum level of independence. Functional training is its focus; in daily activities, community skills, social-emotional development and training in available options for work. The instructors assist with locating and obtaining work in the open market, in sheltered workshops, at home, or in self-employment. SSNI runs its own training-cum-production centre and sheltered workshop, through which adults with even severe disabilities can earn. As of July 1995, there were 54 trainees/workers participating in the VWTC’s activities.
Personal development is an important focus of the centre. Activities include group counselling and guided discussions for the participants, their parents and the staff to develop deeper understanding of one another.

Resource Centre
The SSNI Resource Centre began work in 1985 with one carpenter. It is currently staffed by 3 carpenters and relies on its own carpentry unit for making wooden postural aids. It works in collaboration with two orthotists. The two units together produce urgently-needed postural, mobility, daily living and other orthotic aids which are either loaned out, sold on payment of extended instalments, or given free, depending on the financial capability of the client. A special benefit of this service is that the aid is measured, fitted, and adjusted at the Centre’s premises.

Integration Cell
An Integration Cell is forming to investigate and collect information and strategies for "mainstreaming" for people with disabilities to participate equally in home, school, work and the community. While staff in each project already do the work of integration, this cell provides for a coordinated system, for collecting information and expanding their efforts.
SSNI has recently integrated young children into regular schools, and they are also working with children who were already integrated prior to their admission to SSNI.

School of Rehabilitation Sciences (SRS)

Training
SSNI’s School of Rehabilitation Sciences designs and runs training programmes and conducts ongoing research. Trainees and professionals from all over India, and staff, parents and volunteers from each of SSNI’s project areas participate in training and research. Training courses from the most basic to advanced levels are offered, including :

  • Community-based rehabilitation training for rural and urban rehabilitation workers at the basic and intermediate levels.
  • Post-graduate level courses for special education teachers (Teacher’s Training Course: "TTC") and developmental therapists (Basic Developmental Therapy Course : "BDT"). Both courses are recognised by the Rehabilitation Council of India.
  • Advanced professional level short courses and workshops for medical personnel, therapists, special educators, social workers and psychologists.
  • Volunteer training for work in community day centres and other urban community settings.
  • Ongoing in-service staff training; short courses and workshops for parents.

Scholarships and hostel facilities with people from many Indian states are trained.

Research
Data bases are maintained by all projects, and action-based clinical and educational research is ongoing in the areas of assessment for better prediction of rehabilitation techniques, and the development of innovative aids and appliances.

Legislation and Advocacy Cell
The legislation and Advocacy Cell works with grassroots and governmental organisations and people with disabilities to develop security and equalisation of opportunity for people with disabilities throughout society. This Cell has succeeded in forging a network with over 150 organisations, activists with disability and parents from all over India to amend legislation and policy for greater impact on the lives of people with disabilities and their caregivers.

Professional Networking Cell
The Professional Networking Cell has been organised this year to coordinate and manage the many ongoing information dissemination, consultative, and advisory activities which have evolved in each project.
The Group on Awareness Raising and Publicity (GARP) has been formed this year for coordinating SSNI’s activities concerning the rights and abilities of people with disabilities. GARP assists in creating communication tools to educate the public about cerebral palsy, disability in general, and the work of SSNI.

Human Resources Development (HRD)
A conscious and structured strategy for Human Resources Development at SSNI commenced in January, 1995.
Human resources development at SSNI means developing each person’s full potential. It includes training, personal development and spiritual activities, and utilising consultancies from local and international experts in CBR, research and training, and management for NGOs.

The Leprosy Mission india
The Leprosy Mission is an international, interdenominational charitable organisation working in 29 countries of the world, stretching out its healing touch to over 200,000 PAL, (People Affected by Leprosy). Founded in 1874 at Ambala (Haryana), by an Irish gentleman, Mr. Wellesley Cosby Bailey, The Leprosy Mission (TLM) aims at providing holistic care to meet the physical, mental and spiritual needs of the leprosy sufferers and assists in their rehabilitation. Main objective of the Leprosy Mission is to minister in the name of Jesus Christ to sufferers from leprosy irrespective of caste, creed, race or religion, to take care of the deformed and the disabled, to assist in their rehabilitation and to work towards the eradication of leprosy.
The Leprosy Mission India has reached out to large number of People affected with Leprosy (PALs) through its hospitals and projects in 16 states of India. It admitted 10,168 inpatients and provided MDT to over 20,000 out-patients in 1995. There were over 110,000 revisits of leprosy patients and over 195,000 revisits of general patients in our busy out-patient departments.
Reconstructive surgery was done for 814 patients (more than past years) and more than 2,000 eye surgeries were carried out.
The year 1995 saw strengthening of all aspects of care to the patients – Hospital based control work, Prevention of Disability (POD), Vocational Training Centre (new one at Vizianagaram), Community Based Rehabilitation (CBR), Health Education, Research etc.,
The Leprosy Mission (TLM), being the major Non Government Organisation working for more than 121 years now, is concerned with the total care of People Affected by Leprosy (PALs) and aims to achieve elimination goal by 2000 AD.

Case Detection Activities and MDT Coverage

OPD - MDT : The out Patient Department of TLM covers a large catchment area where a number of patients with active disease come for treatment from various parts of the country. MDT is made available, as a special project, to all the patients attending 26 TLM hospitals in various states of India. Main intention is to bring the maximum number of patients under MDT. From the onset of this project (OPD-MDT) in 1993, a total of 35, 676 patients have been brought under MDT upto the year 1995 and 11,139 patients have completed treatment. 11,631 new cases for treatment were registered at hospitals during 1995.

TLM Leprosy Control Programme : Apart from providing MDT through hospitals, TLM covers a population of about 8,665,162 (1995 estimate) for leprosy control work in various states. During 1995 a total of 5,866 new cases were detected and brought under MDT. A new control programme, covering population of around 400,000, was started in 1995 at Umerkote in Orissa.

Accelerated MDT Programme for Leprosy Eradication (AMPLE) : At the request of the Government of India and the state governments, TLM has taken up AMPLE programme in 6 low/moderate endemic districts, namely, Sagar, Siddhi, Ujjain and Betul in Madhya Pradesh and Siddhartnagar and Mau in Uttar Pradesh. Population of 8,842,688 has been covered and 2,109 new cases were detected. 25 per cent patients among the new cases were detected to be having deformities and 36% of the patients were females. This short intervention programme of 3 to 4 months has proved to be very successful in motivating the staff working for leprosy in the districts to continue case detection activities.

Enhanced MDT Programme by Rapid Organised Survey (EMPROS) : EMPROS evolved out of the experiences of AMPLE programme. EMPROS project started in the Nalanda district of Bihar state in November 1995. Main emphasis of this project is to detect new cases by rapid house to house survey and involve school teachers and village presidents, wherever possible, to assist in case detection activities. Out of the total 20 blocks, 3 have been completed so far. A population of 290,417 has been covered and 681 new cases were detected. Among the new cases, 21 per cent were having deformities and 34 per cent of the patients were females.

Training

Core Group Training : Special emphasis was given on training the National Leprosy Eradication Programme (NLEP) staff. 14 Medical Officers and 86 Para Medical staff of Uttar Pradesh state were trained at Naini in Uttar Pradesh and 22 Para Medical staff of Nagaland state were trained at Salur in Andhra Pradesh.

Ophthalmic Workshops : To update the knowledge and skills of TLM staff in ophthalmic care of Pals, 5 regional ophthalmic workshops were conducted for 110 Para Medical staff and 13 Medical officers.

Technical Teams for Community Awareness
TLM Technical Teams for Community Awareness are in operation in the districts of Muzaffarpur (Bihar), Mallappuram (Kerala) and Vizianagaram (Andhra Pradesh). The teams cover these districts by village visits, they interact with the community members, women’s organisations, youth groups, organise public meetings, film shows, etc., involving different groups of the community. As a result 1,100 new cases self-reported. In Muzaffarpur district TLM team is also assisting the Government in providing MDT. TLM has received permission from the government to start another technical team in Srikakulam district of Andhra Pradesh.

Social Aspects
Psycho-social attitude of the community plays a primary role in the success of any leprosy elimination programme. Four regional workshops on social aspects were held for TLM staff and it was proposed to take up psycho-social activities in general for all TLM centres and choose designated centres to take up action research on specific social problems of the patients. Barriers of social stigma related to leprosy are breaking slowly. This fact was reflected by the invitation of the Ambassador of Switzerland, His Excellency Guy Ducrey, to PALs from Shahadra (Delhi), Naini (Uttar Pradesh) and Barabanki (Uttar Pradesh) for a garden party at his residence in New Delhi.

Rehabilitation
Through the Community Based Rehabilitation (CBR) programme TLM in engaged is enabling confidence. About 1,240 PALs have benefited under the CBR scheme at their various centres throughout India. TLM has also assisted in the rehabilitation of another 609 PALs in cooperation with other social organisations, welfare funds, banks etc. Vocational Training Centres of TLM also help the patients in gaining skills for winning a livelihood for themselves. Platinum Vocational Training Centre, dedicated by the TLM International Chairman, Mr. Ian Milne, was started in 1995 at Vizianagaram.

Prevention of Disabilities (POD)
Programmes on POD are carried out in all the centres of TLM where patients with disability are identified and self-care measures are taught to them. Some of the Programmes include:

Reconstructive Surgery : Reconstructive Surgery is an effective way of providing surgical rehabilitation to patients with deformities.

Protective Footwear : A total of 10,385 Micro Cellular Rubber (MCR) shoes were supplied during 1995 through various TLM centres to patients with insensitive feet to prevent them from developing ulcers. In addition to this 6,944 shoes have been manufactured under special project and are in the process of being supplied to patients in the districts of Barabanki, Purulia (West Bengal), Vizianagaram and Muzaffarpur.

Ulcer Care Workshop : To impart skills in the appropriate management of ulcers, an Ulcer Care Workshop was held at Naini for a group of 8 TLM doctors.

Research
Drug trials to assess the efficacy of new drugs in leprosy are being conducted at TLM centres. The study of the prevalence of HIV seropositivity in active leprosy patients was conducted at some TLM centres. Posterior Tibial Nerve Decompression studies to accelerate ulcer healing are being carried out.

Role of Media :

Liberation from The Media Images of Disability
The subject of the role of media and disability attracts more opinions than understanding. Most of the discussion is about merits or demerits of an irrelevant issue and not about the social system and its total impact on society. Media contributions, if well coordinated and well intentioned, have the potential to create a caring society.
The hard reality is that the centre of our culture is dominated by the able-bodied, the "bold and the beautiful". The images of disability are, not surprisingly, of people who are useless, evil, trivial, ugly and the cause of fear, damage and destruction. Such images serve a certain cultural purpose for society, such as maintain its power structure for the benefit of the able-bodied and promoting the medical models to explain disability as a deficit, a flaw and a shortcoming located in individuals.
Although in a democratic country like India the freedom of expression has been established for many decades, in real life the media contributions in the field of disability tend to be either uniformed or only concerned
with blatant efforts to hide the inadequacies of the establishment. Even after the arrival of competitors - the private channels, popularly known as the invasion from the skies - the Government continues to enjoy substantial control of media, particularly on its television network. With wide reach of most television channels accompanied by low-cost of their reception, it is already becoming impossible for the Government to control and sensor the flow of information.
With few exceptions, most of the media output on disability has been an attempt to please the ruling political party or the bureaucrats. Since such programmes on disability are made primarily to appease the authorities, the producers tend to overlook audience preferences, their information needs and media’s moral responsibility to help policy formulation and its effective implementation. The print media, sometimes, supported by private and/or commercial interests tends to offer a wide and well-informed range of contributions to provide a somewhat balanced output. As far as the 90 million Indians with disabilities are concerned, there is a need for the Government to establish clear procedures for regulating media without affecting the freedom of those involved in the process of production of programmes aimed at informing and educating the mases and bringing about constructive changes in accordance with the provisions of the Disability Act.
The media network of any country evolves over a long period of time and within the context of the social, cultural, political, legal, scientific and bureaucratic traditions. Such an evolution too place in India too but the tremendous advancement in the information and media technology have prompted the need for a re-evaluation of the established practice of monopoly by the establishment and has created opportunities for media to acquire new distinctive features. All forms of media must show a healthy respect for this new situation and take advantage of it for and with people with disabilities.
At present there are possibilities for any people in any part of the country to install an improved direct-to-home satellite system offering 150 high-quality TV channels through dinner-plate sized dishes. In the face of such exciting and robust challenges from emerging technologies, the Government and others engaged in media activities, must urgently replace not only its old technology but also its slow and unresponsive administrative practices.
The new technological developments in communications, and their easy-to-use and not-too-expensive products (like e mail, Internet, satellite-based telephone system, low-cost personal computers with facilities like voice synthesisers etc) with their efficient backup services mark the end of the frontiers of geography and of censorship. Furthermore, transfer of information, communication and data can now easily be done from anywhere in the world to anywhere in the world, using portable equipment of the size of a housewife’s handbag, large enough to bring vegetables for daily use.
Flow of information on disability issues and their solutions and on many other topics of shared interest and opportunities for collective action will flow easily, across the borders, and bring disabled people from all over the world to get united to demand and get their rights. Exchange of information will play a lead role in restoring dignity for disabled people and for creating a new sense of an international comradeship which transforms societies.
These dramatic revolutions offer a new freedom to media and new responsibilities to the producers of media programmes, particularly to those concerned with disability or disabled people. There is no doubt that our future, our lives, our way of thinking are going to change substantially and, perhaps, irreversibly. The communication technology will make going out of the house redunant and those with mobility problems will be able to engage in highly productive work from home using assistive devices. People with disabilities, their organisations and those working for and with them must recognise the potential as well as the tremendous power of information technology and acquire appropriate skills to use this weapon to influence policies and their implementation in effective ways.
Much of disabled people’s well-being, the fullness of their participation in the mainstream activities of society and their victory in eliminating discriminatory practices depend on the use of efficient dissemination of correct, valid and relevant information, in formats that they can use. In the future, media should set an agenda of action for policymakers, law-givers, bureaucrats, professionals, writers, film-makers, intellectuals, scholars and disabled people. Media, with the backing of information and communication technologies, will influence people, their thoughts and feelings. And such overwhelming influence will be exercised, not within the geographical boundaries of one country alone, but anywhere and all the time.
Analysis of the images of disabled people from the popular media of films, television, literature and newspapers the intensity and extent of discrimination. These images are produced by the able-bodied and are deliberately in favour of showing themselves as the chosen children of gods - people with intellect, beautiful bodies, perfect health, powerful and strong, sexy and attractive. The disabled, on the other hand, are portrayed as useless, dependent, without self-respect, without sexual attraction or urges, dependent and wicked. Disability is deliberately manufactured as a deviance from "normality" and as a distortion of perfectibility. The disabled are shown as a curse of God, as a punishment for sins of previous births, as worthy only of pity and charity. If in the films and TV programmes and fiction the disabled infants and children die young their families are shown to have found relief and not mourn their deaths. Media must challenge the notion that biology is not destiny and treatment and rehabilitation are the only responses society can offer. Variations of social and psychological conditions of disabled people are not inevitable and that their marginalisation is a deliberate process to repress and suppress them.
People with disabilities have acquired, over a long period of time, an overwhelmingly negative imagery and they are frequently portrayed as men and women incapable of doing jobs which their able-bodied counterparts. They are shown in films, television programmes, plays and fiction as people either to be pitied or feared. Frequently their disability is linked with criminal, psychopathic and subhuman characteristics. Very few films or television programmes raise the question of discrimination and prejudice disabled men, women and children suffer.
Disabled people are frequently given a central place in stories of crime, deprivation and perversion. When compared with able-bodied characters they come out as inferior, unworthy of social contacts, unattractive, moody, violent, helpless, dependent, subhuman and pitiable. Very few stories invite their audience to reflect the way society and its various institutions have adversely affected disabled people.
There is an urgent need to portray with disabilities as ordinary people, moral and law-abiding, independent and productive members of society since negative images can only result in releasing feelings of pity, charity and fear. The reason that such negative images stubbornly persist is because they are reproduced by an uncaring society in its radio, television programmes, films, fiction and national and regional newspapers. Media should help to put an end to the era of basket making, carpet weaving and singing at street corners. It should recognise disabled people by appreciating their poetry or fiction, their TV programmes or films, their songs and theatre, their fashions and architecture. The under-representation and misrepresentation of disabled people in media has reached serious dimensions. This must change without delay.
These damaging images hurt the sensitivity of disabled people and their families and become obstacles in their integration in society. These portrayals and newspaper reportings must be replaced with positive ones - that is images of normal people - through responsible portrayals, informed debates and scientific outcome of research. Since the powerful influence of mass media in shaping the attitudes and behaviour of ordinary men, women and children is well-established, media must accept its responsibility in this field. It must choose to consistently emphasise normality as the central theme of all its projects about disabled people. The media should also highlight the discriminatory practices of society which prevent disabled people to launch their struggles against poverty, inaccessibility and discrimination.
The negative images of people with disabilities, frequently repeated, reinforce the terrible conditions under which a vast majority of them live. Since the misery of their situation and status is largely the result of the age-old policies and practices of discrimination, indifference and ignorance by society it is society’s turn to take corrective measures. The winds of globalisation have started to bring about an awareness that the present situation of disabled people must be changed and that all those obstacles which prevent disabled people from fully participating in society must be removed. These ideals, now also enshrined in the Standard Rules of the United Nations, and legislative safeguards created by several countries including India, have not come about without a long and hard struggle by disabled people and those who care for them.
Amongst the important factors responsible for the continuation of the suppression and marginalisation of people with disabilities are the silent acceptance of such conditions by them; ignorance of their situation and its causes by the society; rigorous enforcement of medical models of care which insist that disability is their own fault; denying attention to the social causes which blame the society as responsible for not removing handicapping obstacles; the hostile role media plays in projecting only negative images of disabled people so that are seen and regarded as objects of pity and charity. The overall and cumulative effect of all these and similar factors is damaging, humiliating and disabling.
There is considerable evidence available to prove that as far as their material, social, psychological and emotional world is concerned disable people end up at the bottom of the pyramid of human organisation. They also do badly in terms of education, employment, health, income, social security benefits, recreation, transport, housing, insurance coverage, family life and participation in other mainstream activities of society. Their access to rehabilitative services remains poor as their share in country’s resources is extremely meagre. There appears to be a conspiracy of consent amongst nine out of every ten people in the non-disabled society to keep disabled people suppressed.
Media should play a decisive part in changing this state of affairs and exposing such a conspiracy so that the miserable conditions in which people with disabilities are forced to exist change. It should assert, in loud and clear terms, that disabled people are not the victims of some tragic fate since any one can become disabled at any time. Their disability is the creation of their own society. It must also point out, that although disabled people need a lot of health services, they should not be reduced to be seen only as a medical problem. Furthermore, it is imperative that media takes up the important task of ensuring that the new India Disability Act, which has made provisions for creating a barrier-free and equal society, gets implemented. In order to create a caring society, media must explode the myth that the total care that society currently provides is too little, too fragmented and too haphazard and that the CHALLENGES offered by disabled people are not matched by the total RESPONSES offered by all agencies providing support.
In order to raise funds advertisers have used images of disabled people, particularly of children, so that they arouse pity and sympathy. These are hurtful and oppressive images and must not be projected. On the other extreme are the glorification of super-achiever disabled personalities. All achievements deserve attention, irrespective of the fact that they have been achieved by disabled or not. Neither sentiments of excessive admiration nor of sympathy are helpful to disability community. More important are attempts by media to inform people that disabled persons are competent workers or scientists or teachers, or lawyers or computer operators or artists or business people. In other words, some people despite their disabilities are socially and professionally as normal as any other people and should be treated with equality and dignity.
Media should systematically promote the extremely important notion that the real liberation and full independence of disabled people depend on their own efforts to participate in activities that affect their lives. Media must help disabled people come out of their pits of isolation and exercise their rights as well as express their views. The key to their emancipation is in getting organised in a movement of people with all disabilities.
In order to take off the enormous load of discrimination and resulting disadvantages from their shoulders it, at times, becomes necessary for disabled people and those working for and with them to stage public demonstrations and protests. Media must resist from its blatant tendency to use a sensational approach while reporting on such actions.
The information on a variety of topics relating to people with disabilities including current news, lack of representation in decision-making processes and absence of participation in mainstream activities must be regularly given through media. Such information must be made available inaccessible format to people with disabilities, particularly to those with hearing, vision and learning impairments. The content, scope, quality, timing and coverage of such information provided to disabled people must be the same as for non-disabled population.
The exposure of disability issues or of disabled people in the news and current affairs programmes is extremely limited except when some scientists want to claim a break through for fighting one or the other form of disability or some altuistic agency want publicity for distributing tricycles etc. Media is full of discriminatory attitudes towards and misleading stories about disabled people. They are shown as sterotype characters produced by superstitions and prejudices, as objects of pity and ridicule, as sinister or evil characters, as the cause of enormous burden on families and society, as tragic or laughable. There is an established practice of ridiculing people with disabilities on television and in films. They are shown as characters who are difficult to live with and have nothing in common with ordinary people next door. The routine participation of disabled people in ordinary affairs like teaching their children, helping their families or holding on to a job never become news-worthy. In order to stop misrepresentation of disability and the experience of people with disabilities there ought to be a Code of Practice for the media barons and media users which should ensure correct representation of the life of disabled people. A Media Watch should be organised by disabled people, disability activists, NOGs working in the field and the government to keep an eye on media output.

Television And Radio
Doordarshan and All India Radio telecasts programmes for promoting prevention and rehabilitation of disability. Video film entitled ‘HOPE’ on assistive devices for the disabled was produced and telecast over Doordarshan on 13 September and 5 December, 1995. Another programme ‘Dishayen’, which is telecast in school programmes regularly is based on integration of children with disability in normal schools and functional mathematics teaching programmes for parents of mentally retarded children. Five video spots on various disabilities were produced and telecast over the National Network from 1 to 15 December, 1995.
Doordarshan also telecasts ‘News for the Deaf’ in which news is telecast in sign language. While evaluating the programme, the National Institute For The Hearing Handicapped pointed out that ‘signs’ used do not represent the language used by the deaf people all over the country. Doordarshan in its ‘Institution of Excellence’ programme has covered all, national institutions and major voluntary organisations working in the area of disability. Doordarshan has also shown interviews of eminent people working for the cause of disability.
All India Radio broadcasts a few programmes on disability awareness. Ten minutes drama based radio sponsored programme ‘Aao Haath Badhayen’ entered the tenth year of its broadcast during 1995–96. A series in several languages for parents and teachers of the mentally retarded was started on International Day for the Disabled, 1991.

Serials/Films/Documentaries
Serials/films with a large viewership can be used to portray a positive image of people with disabilities and creating awareness among the masses on disability related issues Hindi Films on disability like Nache Mayuri, Sparsh, Koshish and Khamoshi have shown the potential of disabled people. Serials like ‘Ek Ghar Aas Paas’ shown on Doordarshan highlights the residential needs of the mentally retarded people. These examples could be followed in the future. Film festivals with disability as a theme could be held, which will encourage the producers to make more such films/documentaries. In 1991, a film festival with the theme ‘handicapped welfare’ was held. Many films were shown in different languages which were of interest to common audience as well as disabled people themselves. This way, many people were sensitised to the cause of disability. Many NGOs working in the area of disability also produce films/documentaries/serials on disability useful for parents of disabled people as well as disabled themselves.

Newsletters/Journals/Magazines//Newspapers
The four National Institutes working in the area of disability bring out quarterly newsletters.

  1. ‘Ninad’ from the National Institute of The Hearing Handicapped
  2. ‘Insight’ from The National Institute of The Visually Handicapped, Dehradun.
  3. ‘Karavalamban’ from The National Institute of The Mentally Handicapped, Hyderabad.
  4. ‘Arohan’ from The National Institute of The Orthopaedically Handicapped, Calcutta.

Many Non-Government Organisations working in the area of disability also bring out newsletters periodically useful for parents, professionals and disabled people themselves.
The Central Administrative and Coordinating Unit (CACU) of the District Rehabilitation Centre Scheme, Government of India also brings out a bi-annual journal, ‘The Indian Journal of Disability & Rehabilitation’. A few other journals are published in India, eg ‘Blind Welfare’ by the National Association of the Blind and Braille Time’ by the National Institute of the Visually Handicapped which i
s in Braille. There is a need to circulate these publications on a wider scale.
Newspapers also cover some events related to disability e.g. International Day of the Disabled. NCERT, in 1990 emphasised the need for adequate professional journalism while analysing the coverage of disabled persons and disability in newspapers. Theatre, folk art, textbooks should also be used as a medium for disseminating information on disability which is at present missing.

National Information Centre on Disability and Rehabilitation
The Government of India, with the assistance of the National Institute of Disability, Research and Rehabilitation, (NICDR), a U.S. Government organisation, has set up the National Information Centre on Disability and Rehabilitation in Delhi, an apex centre on information relating to various aspects of disability. The national centre has undertaken work of collection, classification and storage of data on twelve different aspects of disability. The Centre has the responsibility to undertake gathering, updating and disseminating information on the following:

  1. Concessions and facilities provided to the disabled by the Central and the State Governments;
  2. Organisations and institutions working for the disabled;
  3. Professionals working for the disabled;
  4. Statistics about beneficiaries of various rehabilitation schemes and programmes;
  5. Demographic statistics about the disabled;
  6. Aids and appliances available for the disabled;
  7. Statistics about national awards and awardees;
  8. Schemes of scholarship-beneficiaries etc.;
  9. Scheme of assistance for purchase/fitting of aids/ appliances;
  10. Scheme of assistance to organisations working for the disabled;
  11. Employment statistics;
  12. Research and development projects.

To some extent poor coordination between media professionals and those working for the disabled is responsible for the lack of involvement of media in the cause of disability welfare. Besides lack of suitable material, there is also a general indifference to this cause. Coordination among various departments of government working for this cause can be effective in sensitising the general public.

Fole of Family : The Pillar of Strength
The families of people with disabilities face enormous difficulties in looking after their disabled members and most of the time the support they provide goes unrecognised by society. Families deserve a better deal. The time has come that the issues surrounding the care provided by families are raised and adequate resources are attracted to help them continue to provide care.
It is imperative that the level of awareness about the family’s contribution to looking after disabled members should be raised so that society accepts its debt of gratitude to them and creates support mechanisms to lighten their burden of responsibilities. Parents, siblings, spouses and children have to bear emotional, psychological, physical and financial costs for caring for their loved ones. Besides medical, health and social services, the members of the family need, at times, counselling and holding of hands so that they can continue with the uphill task put on them.
A majority of disabled people are born with disabilities or acquire disabilities in their early years. The parents and other members of the family realise that something has gone wrong but either find it difficult to express their concerns or ask the right questions to people who do not know. In most cases the news about their child’s disability is broken to them in a most unsympathetic manner. Even if correct and precise diagnosis is made the families are not given any advice on how to look after the infant in even routine matters. They run from one doctor to another and from one specialist to the next without any precise understanding of their child’s problems, the things he/she can or can not do. Apart from feelings of frustration, guilt and despair, important opportunities for help are lost and permanent damage sets in.
The families of children who are found to be disabled from any cause at birth and soon afterwards, deserve a lot of practical help and psychological/emotional support. Several congenital malformations can be recognised at birth and could be diagnosed in early years. There is a lot of truth in the statement that the birth of a disabled child makes the entire family handicapped, at times severely.
The parents are seldom prepared not to have a perfectly healthy child. They await the infant’s arrival for nine months. Their distress at the discovery of disability in their beloved child is understandable. It could be contained or reduced by timely help, although the scars of this experience for the family always remain. They form their attitudes and opinions in grief for having such a child; or in guilt for they blame themselves for the "tragedy"; or in anger at the lack of help and support from the professional expertise and services available in their society; or from total despair at their own loneliness and helplessness. It is the first few months after the detection of the handicap or its diagnosis that help is most needed. Such help could be counselling or explanation of the disability or suggestions for practical management of the infant or referral to the hospitals and specialists who may be able to help and advise.
The reactions of the families of those who become disabled in later years of their lives as a result of an accident or a disease are no less serious than those of the parents of children born disabled. Their situation perhaps is still worse. Their disabled members often require long-term hospital care and undergo heavy financial losses for few of the able-bodied, if any, are ever prepared for the "rainy day". A sudden onset of disability in the family shatters the normal family relationships and frequently the stress caused by disability is too much not only for the person with the disability but for all others related to him/her. They and those who care for them have to pay for services that they had never thought would be needed. The demand for making adjustment to the new situation is often too shocking or depressing. The relatives feel a deep sense of embarrassment and start to withdraw from social contacts and social gatherings. If the person has been married then not only the parents and siblings but also the spouse and children need a lot of advice and counselling so that they, in turn, may be able to offer support to the disabled member of the family.
The elderly disabled, owing to their age and their disability, face enormous problems of self-care, cooking and mobility; shrinking net of social relationships and substantial expenses to bear when their incomes start declining. With the break-up of the joint family system in India the disabled aged face serious problems in the twilight years of their lives. Their children are often married and have their own families and responsibilities. There are seldom day care facilities or long-term residential arrangement available. The number of family members gets reduced to one or two persons and they find looking after their disabled elders even more burdensome. Their reduced income levels push medical and health care beyond their reach. Frequently, there is no one to give them correct information about the rehabilitative services available and how to cope with daily problems.
Permanent disability, whether of infants, young adults or the aged, brings with it a crisis for the immediate family members, relatives and close friends. The challenge is to meet this crisis with hope and fortitude. Even with a firm diagnosis the problem continues to exist and the person with disability and the family remain in need of support.
The few case histories collected for this book provide sufficient evidence that many families do not get the help they need or get it at the right time. Neither the failure of the society in this respect could be ignored nor the heroic struggle of the families to provide a comprehensive and long-term process of support could be underestimated. The difficulties and distress of these families need not have been as enormous as they have been. Their problems of finance, unsuitable housing, extreme difficulties in mobility for the disabled member, inadequate health and social services, absence of relevant information about the disabling condition and the ways of managing it could be minimised by society and its various agencies.
In the interest of long-term and comprehensive rehabilitation, children could be provided with education, those educated with vocational training and then suitable jobs, adequate housing, facilities for public transport and recreation so that the burden put on families gets reduced to manageable dimensions. Along with the person with disability the family should also receive the benefits of a caring society. Without such constant and visible practical support the interpersonal relationships within a family shall remain fragile because of the enormous stress.
The value of the family’s support is inestimable and their commitment to the task of looking after their disabled member is absolute. But, this contribution often is taken for granted for those making it neither demand financial rewards nor written testimonials. They offer their maximum capacity to care for a disabled person with dignity and suffer their plight in silence. Our society is better for the support provided by the families. The society must find ways of providing relief to the family facing stigma as well as the day-to-day problems of the comprehensive care of a disabled person. The discovery that a member has a permanent handicapping condition is not a rare experience. At least one in every ten persons is disabled, either from birth or from disability acquired later on.
No professional, no matter how well trained, can ever match the sympathetic understanding of a family member. The importance of the value of the specific and central role of the family must be fully recognised by the professionals providing services and those planning such services. The family must be involved as integral partners of a team in arriving at the programmes for the diagnosis, treatment and rehabilitation of disabled members. It is naive to assume that the family would automatically accept responsibility for the care of its disabled member.
With the advance in medical, health and nutritional services, the chances of disabled children and disabled members outliving their parents are high. One question that always remains unasked and unaswered is the future of disabled people when there would be no family members to carry on the responsibility. Unlike families with able-bodied members, the presence of a disabled person adds a serious dimension of uncertainty to the future.
There is every likelihood that during the life of a disabled member the family may get disintegrated or some of the able-bodied may migrate for greener pastures and restrict their responsibilities to sending regular or occasional moneyorders. It is also possible that some or all members may be dead. The families always are fearful of the crisis that awaits their disabled son or daughter, brother or sister when they are not around. The disabled old people dread the loneliness of their remaining years. Society, through its statutory and voluntary services, must share this responsibility and reassure family members that they
should not dread the future since it will be planned and provided for. The individual families, however, must be encouraged to plan, within reason, for the future of the disabled member and not wait for a crisis.
It is estimated that as a result of the known incidence of disability at least 25 per cent of the total population in India is directly or indirectly affected by the presence of disability. The realisation that a close relative suffers from a permanent disability puts a great stress on the family. A large number of Indian people must consider seriously the extent of the provision of practical and emotional support available and needed in the context of the legal safeguards for disabled people and their increasing participation in the formulation of policies concerning their lives. The argument is no longer valid that the families do somehow find adjustment. In doing so, they suffer unnecessarily and avoidably. If properly helped, these families would make a reasonable adjustment for themselves and for their disabled relatives. Such help from society has become their legal right. It should not be denied to 90 million disabled people in India and their families.

Community Care
During the last two decades, in most countries of the world there has been a growing realisation that institutional care for the disabled, as well as for other groups requiring long-term residential services, is not entirely suitable for their individual needs, dignity and independence. There has been a relentless advocacy for community care. It is recommended, on the basis of sophisticated arguments, that those who have been living in institutions for long periods must be discharged and those waiting to get admitted must be prevented from doing so. A number of governments have actually succeeded in achieving noticeable reduction in the numbers of in–patients in institutions and have managed to send them out into communities which do not have adequate provision of services and facilities.
In a traditional country like India where informal support outside institutions has been, by and large, the only form of available care for thousands of years, great caution must be exercised to understand the real implications of the community care model being offered, packed in glittering wrappings of human and scientific rhetoric. The developing countries, it seems obvious, cannot escape this offer from the west since it has the respectability and support of most UN agencies, and other super NGOs.
There are, as expected, many definitions of community care. The layman’s definition of this terminology, as well as his understanding, assumes the quantum of help informally provided by family members, friends, neighbours, colleagues in school/college and workplace, volunteers and lay members of society.
This form of care implies care in community and not by community because community care should include formal and professional arrangements, medical and surgical facilities and equipment, aids and appliances, medicines and drugs and other rehabilitation services accessible to that particular community. By non-inclusion of these formal supports, the concept of community care gets reduced to non-professional and costfree help given by a set of self appointed and untrained carers in non-institutional settings without responsibility or accountability.
Informal care in community should not be accepted or taken as an alternative to institutional care. Some criterion for performance of services in community should be assured and insisted upon as in institutions. This demands commitment of resources (funds, professional skills, workforce, equipment for diagnosis, treatment and rehabilitation and appliances, etc). Without such inputs and management arrangements for them, no amount of persuasion and no sophistication in philosophy can make
community care creditable and workable. Resources are a deliberately forgotten dimension of the packages of community care being offered to developing countries.
At the International level, mostly on behalf of and for the disabled instead of by them, a number of efforts are underway to help persons with disabilities get integrated in the mainstream of society. One of the major programmes, with the United Nations Development Programmes is Community-Based Rehabilitation (CBR) guided by Einar Helander who is humble enough to state that ‘CBR is a learning process, not a blueprint or ready-made solution’.
He argues that CBR calls for flexibility on account of social, economic and cultural situations, the circumstances of the disabled and an individual country’s existing services, priorities and policies.

COMMUNITY BASED REHABILITATION (CBR)
CBR is a "strategy for enhancing the quality of life for the disabled people by improving service delivery, by providing more equitable opportunities and by promoting and protecting their human rights."
The prerequisites for CBR to become a reality have been described as ‘full and coordinated involvement of all levels of society’ and ‘integration of the interventions of all relevant sectors – education, health, legislative, social and vocational – and aims at full representation and empowerment of disabled people’. Helander goes on to describe the aims of CBR including adaptation of the physical and psychological environment that will facilitate the social integration and the self actualisation of disabled people. Its goal is to bring about a change, to develop a system capable of reaching all disabled people in need and to educate and involve governments and the public. The projects which do not apply the basic principles of CBR are advised to use another term to describe their activities. There is, thus, the question of copyright too. (Quotations from Prejudice and Dignity by Einar Helander).

The Politics of Community Care
The politics of community care seem to be in favour of reducing the role of statutory services as providers, without going into the causes of their failure and to encourage a steady growth of informal, voluntary and perhaps private services. The main attractions for the Governments to take interest in it are that this model demands little or no growth in public expenditure on services for the disabled and, at the same time, uses a language of human dignity, participation, involvement, self-help, family support. This approach promises to shift emphasis from ‘everything for a few’ to ‘something for everyone’ without demanding further commitment of resources from the government or stating in clear terms the quality of care with their promise of being cost effective and at the same time comprehensive in coverage, find patronage with the policy makers and officials as well as they manage to hold an olive branch for the disabled and their families.
Apart from CBR there are other efforts currently popular in the world of the disabled or in a world made disabled through ignorance, prejudice and discrimination. The list includes –

  • Disabled People’s International (DPI), Canada
  • Disability Awareness in Action (DAA), U.K.
  • Rehabilitation International, U.S.A.
  • International Disability Foundation (IDF), Switzerland
  • World Federation of the Deaf (WFD), Finland
  • World Blind Union (WBU), U.K.
  • UN Centre for Human Rights, Switzerland
  • UNICEF, New York, U.S.A.
  • UN Development Programme (UNDP), New York, U.S.A.
  • ESCAP, Thailand
  • IMPACT, C/o W.H.O., Switzerland
  • AHRTAG, U.K.
  • National Association for Mental Health (NAMH), U.K.
  • Royal Society for Mentally Handicapped Children & Adults (MENCAP), U.K.

The list is not exhaustive but indicates that a large number of organisations at international level are active in increasing awareness about the actual problems people with disabilities face and what needs to be done to remove obstacles and barriers. All of them demand human rights and if their collective grip on this central issue does not weaken, then the disabled will have their rights and the meek shall inherit the earth.

Consensus On Objectives
Going through a vast number of documents produced by the above and many other international and national agencies engaged in ‘disability work’, it is clear that meeting some of the needs of a few people with disability, whether inside or outside institutions, is no longer valid. The disabled now demand total integration with the non-disabled and full social functioning in societies where they live. This immensely important, extremely complicated task should not be left to the government of a few voluntary organisations or a few visionaries but everyone must work together. All must recognise the basic principles of human dignity, equality and capability to collectively improve the quality of life for the disabled. All policies and practices working against the real interest of the disabled must be rejected or altered. This is an essential condition to end the oppression against them.