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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 199596 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 :
- 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.
- 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.
- 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.
- 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 SchemeService 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.
ActionAids 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
dependencephysical, 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 childrens
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 childs 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 Delhis 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 Centrebased 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 Teachers
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
Managements programmes.
Rural
Community Based Rehabilitation (CBR) Project
All of the
activities of SSNIs 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 communitys 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 VWTCs 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 Centres
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
SSNIs 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 SSNIs 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
(Teachers 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 SSNIs
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 persons 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, womens 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 medias 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 housewifes
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 peoples 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 societys 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
countrys 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 199596. 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.
- Ninad
from the National Institute of The Hearing
Handicapped
- Insight
from The National Institute of The Visually
Handicapped, Dehradun.
- Karavalamban
from The National Institute of The Mentally
Handicapped, Hyderabad.
- 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 is 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:
- Concessions and
facilities provided to the disabled by the
Central and the State Governments;
- Organisations and
institutions working for the disabled;
- Professionals working
for the disabled;
- Statistics about
beneficiaries of various rehabilitation schemes
and programmes;
- Demographic
statistics about the disabled;
- Aids and appliances
available for the disabled;
- Statistics about
national awards and awardees;
- Schemes of
scholarship-beneficiaries etc.;
- Scheme of assistance
for purchase/fitting of aids/ appliances;
- Scheme of assistance
to organisations working for the disabled;
- Employment
statistics;
- 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
familys 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
childs 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 childs 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 infants 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 familys 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
inpatients 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 laymans 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
countrys 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
Peoples 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.
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