Putting Parents in Charge
of Caring for Disabled Children
By Arundhati Ray
A mother and her nine-year-old son sit on the steps of a sunlit Calcutta porch, engrossed as they examine a bunch of leaves in the woman's hand. Her soft tones draw attention to the shapes and textures, encouraging him to explore these with his stubby, childish fingers.
This could be a private moment shared by any mother and son, yet, for Debalakshmi Guha and her son Munnu,
this harmonious interchange goes beyond a conventional parent-child bonding exercise – it represents a triumph.
Debalakshmi shares a quiet moment with her 9-year-old autistic son, Munnu. Thanks to her active role in his care, Munnu today is slowly emerging from the prison of his mind.
Born severely autistic, until just a few years ago Munnu spent his days alternating between spells of frenetic, repetitive physical movements and rigid immobility. Debalakshmi's ignorance about her son's condition made her powerless to reach out to him, and she could do nothing but watch in helpless anguish. Moments like these, where Debalakshmi and Munnu sit together on the steps, were inconceivable.
But today, Debalakshmi plays a proactive role in every aspect of her son's care. Stimulated by a powerful combination of informed care and maternal dedication, Munnu is learning slowly to interact with his environment, and to adjust to a daily routine.
Debalakshmi and Munnu are among thousands in India whose lives have been changed dramatically by REACH (Society for Remedial Education Assessment Counseling Handicapped), a radical intervention in the field of disability care headquartered in Calcutta. Shunning India's existing professional-intensive approaches, REACH has reconfigured the nature and delivery of services for the disabled through a program that empowers mothers to take a leading role in the care of their special children, and to become effective advocates for their rights.
Purobie Bose
REACH was founded more than two decades ago by Purobie Bose, a Calcutta-based special educator. For Bose, the answer lies in tapping one of India's greatest strengths: the family. Within the family, she has focussed on mothers, who are inevitably, the primary caregivers, and have the greatest self-investment in their children.
India's poor record of human rights extends to the field of disability. The country's continuous failure to adequately address its disability issues denies vast numbers of persons the right to develop to their fullest capabilities, representing both a personal tragedy and a terrible waste of human resource potential.
There are some 60 million disabled persons in India, but India lacks the resources and professionals to serve the needs of more than a token percentage of this population. Government responses to this critical social problem have ranged from apathy to denial to tokenism.
The impact of the civil sector's efforts are limited because its strategies have focussed on professional-intensive service delivery. These practical problems are compounded by the social and cultural stigmas attached to disability, making public discussion of these problems taboo while the victims remain hidden from public gaze.
In contrast, REACH'S family-based model is a unique response to the crisis in India's disability sector. "We are a poor country but we have one immense resource – the family," said Bose.
"Social collaborations are the mainstays of all our lives here in India, and we must leverage this wealth in tackling the issue of disability. Most important, it is mothers who must be supported in every way to take the lead in caring for their children and in determining their future. They are the ones who, emotionally and physically, bear the brunt of all the implications of bringing up a disabled child. They are the caregivers, the ones to face the social stigma and blame, and the ones who have the deepest stake in the child's welfare. It's only logical then, that they be motivated and empowered."
Mothers learn to help their children at meal times during a lunch session at REACH
Bose's conviction has been reinforced by experiences that demonstrate "kids with disabilities just blossom where mothers took the leading teacher role." This insight – that mothers can become powerful agents of change – was one Bose developed early in her career.
During her first exposure to disability as a teacher in 1969 at Calcutta's Oral School for the Deaf, Bose was profoundly inspired by the school's founder whose daughter was born with a serious hearing impairment. Bose recalls, "seeing this mother spearhead an entire program to address the needs of the aurally-challenged in Calcutta, and witnessing the immense inner resources she brought to her role as both teacher and mother, was truly inspirational."
Bose became convinced that for disability, and other fields that cut across social sectors, mothers must take the lead. "Everything must be done to empower them," she said.
During the early '70s Bose began translating concepts into practice by establishing a self-help center for parents of disabled kids, which operated out of her bedroom. Experiences and trainings helped fine-tune her vision.
In 1981, she founded REACH to provide an integrated range of services for disabled children – educational, therapeutic and rehabilitative – covering all disability groups except the visually impaired. She also established a training center for parents and teachers.
Fees were set at highly subsidized levels to enable families from the lowest income groups to attend. In cases of demonstrated need, these fees were waived entirely. Then, as now, Bose energetically raises funds – using every possible source, both national and international, corporate and church sponsorships, and private donations and government grants.
A class at REACH in Calcutta
REACH uses a team approach. "Each of us – the teaching staff, family support services, doctors and therapists – are a link in a circle that has, at its center, the disabled child," said Ranjana Basu, Director of REACH's Family Services Department. "Each must be individually strengthened, and the bonds between us reinforced, for the child to get the best possible care."
But Bose and her staff are critically aware that the link possessing the greatest latent power in this configuration – the mother – also is potentially the weakest link. Bose notes, "these are women who have had little exposure beyond the world of their home and family. Their self-esteem is frequently further eroded by the strain of caring for a disabled child in an environment of censure and non-support. For them to take leadership, and sustain this role in something as challenging as ensuring the proper care and rights of their child, they need to be constantly and intensively nurtured and empowered, through training, experiences and exposure that enhance their self-confidence."
REACH uses a multi-pronged approach to enable mothers to become valuable partners so that they can address the needs of individual disabled family members, and beyond that, the larger issues faced by the disability sector. The core strategic tool is information – giving mothers access to the knowledge bases which, according to Bose, "remain so locked with professionals that a mother is denied even her basic right to comprehensive information about her child's condition, compounding her anxiety, robbing her of self-confidence and perpetuating misconceptions about disability."
Debalakshmi's experience vividly documents the trauma that mothers face as a result of their ignorance – and REACH's important role in removing this disempowering condition: "I would go running from one doctor to another," she said. "Each would contradict the previous specialist, and a whole new round of 'treatment' would begin. I could see my child wasn't improving, yet my ignorance about his condition put me at their mercy. This changed when I came to REACH. Through Parent Education and interactions with teachers and social workers, I gained knowledge, skills and confidence."
Mothers working with children to train them in basic skills as part of the Community Based Rehabilitation initiative
The Parent Education (PE) course is the first step in REACH's program. It's innovation is allowing mothers to evolve from learners into teachers, empowering them by providing them with knowledge, and also with a sense of achievement and self-confidence that comes from being elevated to a position of knowledge-dispenser.
The PE course consists of 12 two-hour sessions. They cover the cause, early intervention and management aspects of each disability group, as well as laws affecting the disabled, and the impact of disability on parents and the family. Over time, professionals instructors have been replaced by mothers who have attended the course and have become trainers for the next wave of mothers.
This theoretical training is reinforced in a number of practical ways. Mothers attend class-observations at regular intervals to see first-hand how trained teachers interact with their children.
Teachers maintain a detailed file of a child's day-to-day activities in school. These reports are sent to the mother on a weekly basis, keeping her updated and providing templates of activities that can be replicated at home. During holidays, mothers receive in-depth daily lesson plans.
Mothers learn how to administer physiotherapy independently. During home visits, teachers help them make the physical environment of the house suitable for the child. This combination of activities ensures that REACH "doesn't function merely as a time-bound school, but as a process that continues all through the day, every day," Bose said.
A mother learns to administer physiotherapy to her son at a REACH center in Oosthi village
"We feel like partners," said Parbati Chakravarty, who is bringing up her nephew, a victim of cerebral palsy. "The teachers listen to us, they consult us. If we feel a routine should be modified in any way, they agree. They accept our concerns and critiques."
Another mother contrasts this democratic environment with her experiences at previous institutions: "Mothers were never allowed inside the classroom, and I had little idea of what my child was doing during school hours. As for questioning an instructor's approach, that was unthinkable!"
This partnership is essential, said Sujata Sengupta, principle of REACH's center for autism: "We and the mothers have a common agenda: setting realistic goals for the child's development, and facilitating its reaching these goals. We have to be partners in the process and just as we help in training them, they give us vital feedback for making us more effective in the classrooms."
This partnership, where the mother takes the primary role in a child's education and care, has a positive effect on the child, said Trina Bhattacharya, a psychologist who, until recently, was a member of the REACH faculty. "A child spends only a few hours at school," she said. "The rest of the time, it is with its mother – she is his real strength. When she can continue to reinforce what the school teaches, it enhances a child's development in an amazing way."
Mothers' success in the role of teacher gained international recognition at REACH when it became the first organization in the world to train mothers as therapists, using the Marte Meo (literally translated as "on one's own strength") method. This program, devised by Dutch communication therapist, Maria Aarts, is a video-based intervention that helps enhance communications between parents and their disabled children.
Marte Meo posters designed by REACH
Trained therapists analyze video recordings of mother-child interactions with the mother, emphasizing all the positive instances of communication and suggesting how their potential can be optimized. Bose realized that Marte Meo's positive-reinforcement methodology and strong emphasis on the impact of the mother's made it wonderfully suited to REACH's agenda. Bose also was convinced that mothers could be trained to be effective therapists. She was right on both counts.
Debalakshmi was one of the first mothers at REACH to take the training. She describes with enthusiasm how Marte Meo transformed her life, opening up a whole range of communication with her autistic son, and enabling her to show other family members how communication was possible with the boy.
A therapist herself now, working with other mothers, she feels her self-esteem growing all the time. "The most empowering aspect of Marte Meo is that it makes you aware of the skills and strengths you possess, and stresses the things you are doing right," she said. "All this bolsters your self-confidence."
The Family Services Division also provides an array of services to mothers. Trained social workers from this unit make an initial home visit to determine socio-economic conditions. As one mother said, collecting this data ensures that "each child – each case – is treated on an individual basis. Every family is taken as a separate case. Whatever is suggested is appropriate and viable in that particular family context."
Social workers provide essential counseling services for mothers and for other members of the family to create an environment where a child can grow, gain understanding, and be nurtured. They pay special attention to addressing the anxieties and questions of siblings, enabling them to become a mother's allies rather than an additional source of stress.
A class at REACH in Calcutta
All these capacity-building exercises give mothers self-confidence as they take charge of their child's care and become trained and informed emissaries for the disabled in their families and community. "As we learn and our confidence grows, we are able to explain things to other family members, and change the way they view the disabled child," said Gopa Sen, a mother who works for REACH.
"We can help them dismantle prejudices and make them more comfortable with an issue. This helps everyone, and improves the family situation. I can now also share my own experiences with other mothers of disabled kids in the neighborhood, and advise them."
"If I don't fight for my child's rights, who will?" asks Pamela Chaudhury, referring to her job, which is ensuring that all REACH kids get the disability benefits due to them. India offers a number of such benefits, but these services are underutilized due to the lack of organized information and a tangle of red tape.
Chaudhury is responsible for disseminating information about these policies to all mothers, and she serves as a go-between with the relevant public department to ensure quick processing of their claims. This program is part of REACH's initiative to encourage mothers to look beyond the immediate needs of their child, equipping them to address their child's long-term future, and broader issues that involve the entire field of disability.
Most activities for this initiative are mediated by the Mother's Association (MA), an organization created by REACH mothers. On one level, the MA functions as a powerful support structure where mothers from across the socio-economic spectrum come together to share experiences and advice.
MA also consists of "power cells" that empower mothers by addressing a different set of issues. For example, the public awareness cell organizes consciousness-raising activities such as marches and integration programs at non-disability schools.
A march organized by the Mothers Association of REACH, demanding their children's rights be recognized
A separate unit organizes networking and capacity-building activities, such as seminars, workshops and exhibitions. It ensures that REACH mothers participate when such events are organized across the country by other disability groups.
Another MA cell is dedicated to running a self-employment project (from activity coordination to product marketing) that is designed for senior students. The students participate in simple income-generating activities such as spice-packaging and greeting card production.
MA members also play a leading role in another employment project called IDEA (Initiatives in Developing Employment Achievements) Consultants. This initiative was started in 1999, and it collaborates with corporations to explore placement opportunities for MA members and former REACH students.
Mothers have the primary responsibilities for managing a weekend leisure center for young adults run by REACH. When a daycare service for the disabled called Respite Care opens in Calcutta in July 2001, it will be run by mothers themselves.
"A worry that stays with us constantly is: what will happen to our children when we are no longer around to take care of them?" notes Gopa Sen. REACH is helping mothers confront this issue by serving as a principle member of the National Trust, a body that is looking into the establishing homes for the disabled for the first time in India. REACH will be represented by members of the MA.
A weekly meeting of the Mothers Association
Thus, in these multiple ways REACH is empowering women to assume a leading role in India's disability movement. "We no longer feel helpless," Chaudhury concludes. "Instead, we now believe that we are in a position to contribute to our children's well-being, and we can play a part in deciding their future."
Bose's vision extends beyond an urban constituency. The Community Based Rehabilitation (CBR) program is REACH's rural intervention. With it, smiles Bose, "REACH bravely goes forth where no one's been before."
Her joking reference to the Star Trek series points to a harsh reality. Rural India lacks even the scant handful of services and facilities that are available in cities. Specialized treatment or care means a long trip to the nearest town, a luxury that is not an option for most of the poor rural population. Even in the context of India's grim disability scene, the abysmal state of the country's rural disabled is shocking.
Like its urban counterpart, the rural initiatives stress the mother's role, but also leverages the strong bonds of community and kinship that exist in villages. The result: slowly but perceptibly, a disability movement is starting to take shape in rural pockets, with momentum coming from an empowered community.
This intervention began in 1991, when a community leader of Jamsole village in West Bengal approached REACH to set up a school for disabled kids in his region. Bose at once recognized that this was the opening she needed to realize her dream of "taking the disability movement to India's villages, where there is absolutely nothing for the disabled and their families."
Going where no one has gone before: REACH staff (center with papers) register students at newly-opened center in Cooper's Camp village as part of the Community Based Rehabilitation initiative
Bose first asked the village leader to conduct a survey of the numbers of disabled, types of disabilities, and age and socio-economic groups. Based on this data, REACH identified needs and the kinds of programs needed to address those needs.
Next, REACH established a dialogue with local government officials and the village panchayat (governing body) to ensure a buy-in from these authorities, which is vital for to a project's smooth and ongoing operation. The village contributed space for the school, and REACH drew-up a two-year certificate course in special education.
The trainees learned on-the-job, under the guidance of REACH staff who would visit at frequent intervals. They would also make trips to Calcutta to learn at REACH's facilities and observe classes.
The trainees were local youth who had responded to advertisements placed by REACH in daily newspapers and were selected on the basis of personal interviews. Other community resources, such as local doctors, were tapped to help with the program.
REACH arranged transportation to the agreed the school (many children would be travelling several miles), and provided a mid-day meal. Today, Jamsole functions as an independent unit, with REACH staff members visiting at regular intervals to monitor the program.
The Jamsole model has been replicated in several villages in the states of West Bengal. It has extended to Jharkhand, the western state of Maharashtra, and south to Karnataka and Kerala. With the latest project in Tilaita, deep in the tribal heartlands of the eastern state of Jharkhand, there are now fifteen CBR projects enrolling more than 500 students.
A young trainer selected from the community conducts a class at a REACH center in the rural Midnapore District of West Bengal
From its inception in the confines of a bedroom, REACH has grown to what Bose likes to describe as "a mighty Ashoka tree." Many of the organization's myriad activities are housed in a brand new, six-story complex in Calcutta with light-filled, sparkling clean classrooms and gaily-decorated walls.
There is a separate center called Open Minds for children with autism. REACH has four satellite centers in non-REACH institutions spread across the city and its suburbs. It has opened branches in the states of Jharkhand, Kerala and Gujrat, and its model is being replicated through affiliations with organizations across the country.
As a result of all this networking, REACH has touched the lives of more than 5,000 disabled children and their families. REACH will soon be going international by opening a center in the Maldives, an island nation southwest of India.
Bose attributes REACH's success to the dedication of an excellent staff and the organization's democratic principles, which enable mothers and professionals to be equal collaborators in the construction and implementation of its agenda. She compares her role to one of a conductor, for whom REACH is like a multi-part orchestra.
Each section makes its vital contribution to a symphony, dedicated to the disabled. But the challenges to keeping the music flowing are formidable.
For Bose, the government is the greatest source of frustrations. An example is the Rehabilitation Council of India (RCI) Act passed in 1992. It requires all those who work with the disabled to take a government-approved training course and register as professionals.
While well intentioned and intended to weed out the charlatans, this act, and many others in the disability sector, have disastrous implications, according to Bose. "In villages where so many of our disabled live, where are they going to find trained professionals?" she asks indignantly. "Is the government going to ensure this? And the law is draconian – offenders are to be thrown into prison!"
The government doesn't recognize the certificate that REACH issues its trainers. Not one to be intimidated, Bose has continued her CBR programs, challenging the government to imprison her barefoot rural trainers, and to imprison her too, because she, as a matter of principle, refuses to register for the RCI license. The government, while refusing to change the law, has responded by turning a blind eye to her trainers.
A class at REACH in Calcutta
While responding to questions about the injustice of the RCI Act in a nationwide televised debate in June, the RCI's director declared that, in practice, "no one would ever go to jail on the RCI charge. We will only advise them to get the license."
"Naturally!" exclaims Bose. "They are doing the work that the government should be doing."
Nevertheless, because years of lobbying by Bose and others have not succeeded in getting the RCI Act rescinded, they are now trying to modify it from within. For example, in response to continuous pressure, the RCI has agreed to have its training program designed by disability specialists, rather than by public officials who have no background in special education. The result is a course that offers true value to its clients.
The fragmented nature of the disability sector itself is another obstacle to REACH's growing influence, Bose said. The politics of personality hinder all organizations from collaborating on principles and practices, and working towards a common goal.
Managers of citizen sector organizations often are not comfortable relinquishing enough control to adopt the democratic model that REACH promotes. "They fear anarchy, if they give up the reins," says Bose, her eyes twinkling mischievously.
Forces within the family and communities present another constant challenge to sustaining the movement, said Roma Sarkar, MA chairperson. "Even after the mothers have been motivated and empowered, many have to face a constant battle from the homefront to sustain their activities," she said. "Most of these women belong to middle- to lower-income families, where traditional curbs on women's freedom of movement outside the home continue to be a reality.
"Since many of the MA activities – be they public awareness campaigns, running the self-employment projects, attending seminars, liasing with the bureaucracy about disability benefits, or working as Marte Meo therapists – frequently take the mothers outside the home on assignments not directly linked to their child, they face a lot of flak from other family members."
Members of the Mothers Association (center), flanked by REACH staff, at an awareness-building booth staffed by the MA at a popular annual fair held outside Calcutta
Women in the MA concur with this view. They provide examples of the kind of pressure they experience at home – ranging from questions about their moral character and their fitness to be wives and mothers, to direct threats. But these spirited women insist that they now have the strength to carry on regardless, knowing that what they are doing is for their children and their future.
For Bose, this determination is an emphatic affirmation of REACH's mission, but she also understands the importance of practical support within this context. Thus, "when necessary, we pay – even for bus fares – so that nobody in a family can accuse a woman of wasting money on an 'unnecessary' trip," she said. "Also, if she needs someone to look after her child during that time, we try to organize that through the school."
Bose is aware of the ongoing need to make REACH a dynamic organization, and prevent it from stagnating. "Once we grow complaisant, that's the end of the road for us," she declares. So she is constantly pushing herself and her team of staff and mothers to dream up new projects, set new goals.
Bose said her personal dream is to ensure that every disabled child in every Indian village receives help, and a chance for a future. For this to happen, she believes three things, which are absent at the moment, are required. First, the various ministries of the government that affect the rights of the disabled – Health, Human Justice and Social Empowerment, and Law and Education – must coordinate their work to advance the interests of the disabled.
Second, the disability sector must make a strong effort to put aside its individual differences, and speak with one voice. Finally, there must be a dramatic change in the way every person in the country views the disabled. As Bose voices her wish list, a wry smile signals that she is all too aware of how distant her goals remain.
But in the meantime, her "army of mothers" surges ahead, growing in numbers and stature. In their wake – in a happy reversal of Chief Seattle's words – more and more of India's disabled are ceasing to survive, and beginning to live.
Needs:
REACH welcomes donations for initiating new projects as well as sponsorships for needy children. REACH also welcomes books, toys, old clothes and appliances.
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