Dr. Moreno Toldo is an Italian doctor based in Varanasi, India who specializes in neuro-disability. Learn about the joys and challenges of his work supporting children on the autism spectrum and advocating for disability inclusion through the Kiran Society.
Tell us about yourself and your journey to the Kiran Society in Varanasi.
My name is Moreno Toldo, I graduated in Medicine from Padua University in north-east Italy, and in 1984 specialized in Neurology. After working at Italian government hospitals for 25 years, in 2006 I decided to serve children affected by neuro-disability at Kiran Society, a centre for rehabilitation, education and vocational training of children and youths located in the outskirts of Varanasi; the ancient city on the river Ganges in north India, famous for its great cultural and spiritual heritage. I had visited this centre in 2001 and had been deeply impressed with the results that basic health facilities managed to achieve there, when provided with great care, love, and a joyful attitude to disabled children. The centre is an NGO sustained by donations and financed projects, financial support coming mainly from Europe and the U.S. Almost all the children belong to poor families, most of which cannot afford payment of fees, though the fees are kept to a minimum. Since there was no resident doctor in the centre, and doctors who specialize in neuro-disability are still very few in India, I accepted the invitation to join in the service from Sangeeta, a Swiss lady, founder and present-day executive director of Kiran Society.
What is a typical day like at the Kiran Society?
The school children reach Kiran and gather together at 9 a.m., coming from Varanasi city and close-by villages. Together with all the staff, they attend a meeting in the main hall for a common prayer — a prayer chosen from among the different religious traditions (Hindu, Muslim, Christian, Buddhist, Jain) and chants. The children attend their classes, from nursery to 8th grade, and training courses (handicraft, tailoring, food preservation, horticulture and gardening, wood-workshop) till 3 p.m. We have hostels for both children and trainees; altogether about 100 of them live with us during the school year, because their homes are faraway or due to family problems. There is a special education unit for children affected by moderate to severe disability (mainly cerebral palsy and cognitive delay), but the school follows an inclusive approach, with both normal and differently abled children in each class. This approach allows children and their parents to appreciate the richness of differences and the deep lesson of love and simplicity that life gives us through living together in such a context. Altogether, about 450 students attend school and the ones with disability receive physio- and occupational therapy, speech therapy, psychological support, medical evaluation and therapy, and custom-made orthotic devices.
Rehabilitation services are also provided to children coming for consultation to Kiran Centre, and a mobile team of therapists, special educators and myself reaches a few mission stations in the districts surrounding Varanasi, supporting the local village workers in their health and social promotion activities. About 3,000 children, both new cases and follow-ups, are yearly cared for in this way.
How have local perspectives on autism and other developmental differences evolved?
The stigma attached to disability is still an important issue, together with wrong convictions regarding the cause of disabilities, especially among people living in villages. Our intervention always involves an educational effort to raise awareness regarding the importance of early detection, intervention and prevention of disabilities through correct nutrition, hygiene, vaccinations, proper care of pregnant ladies, lactating mothers and babies. Autism and Autism Spectrum Disorders (ASD) have gone unrecognized, misinterpreted and misdiagnosed by local doctors/health workers as mental retardation or a psychiatric condition.
What services and resources are most critically needed for individuals with autism in Varanasi?
There is a severe lack of awareness both among the population and health professionals. Only a few children affected by ASD come to our out-patient department with the diagnosis of ASD already formulated, often after a trip to big cities like Lucknow or Delhi, to consult a pediatric neurology center. And there is a lack of centers and schools where children with autism can receive proper attention and parents can get suitable training and psychological support. Recently a private school has opened a service for autistic children, after one child of the school owners was diagnosed as affected by ASD. But that school is only for the rich. Government services have no facility for autistic children; when a child is suspected, parents are generally referred to tertiary hospitals in the big cities mentioned, or to Kiran centre.
At Kiran Centre, we have adopted an original therapeutic approach devised by Com DEALL, a leading institute of Bangalore founded by Dr. Pratibha Karanth, speech therapist and psychologist who previously had been working for many years at NIMHANS, a most important Indian institute of research and policy maker in the field of neurologic and psychiatric conditions. Her eclectic approach has given remarkable results when applied early, prompting children to improve in their personal communication and social abilities, and enabling many of them to attend normal school. Because of our setting and focus on children who can attend our sessions no more than twice a month in the pre-school period, we have adopted a so-called “Family-Mediated Intensive Program,” in which parents are trained to become the therapists of their children, through their training and follow-up sessions by a team composed by a speech therapist, an occupational therapist and a special educator, who have been trained on the Com DEALL approach.
We also run a so-called one- week long residential Mother’s Training, during which a group of 5-6 children, generally affected by complex disabilities, stay in our center with their mothers, or another family member. They are trained to cope with their child’s needs and helped deal with their own psychological, family and social issues.
What cultural differences have you had to navigate as an Italian doctor working in India?
There are major differences, indeed. In the beginning, I faced difficulties adjusting and still it is sometimes challenging to cope with the culture of health and disease in this part of India (elsewhere in India situations may be different).
Theirs is a different attitude towards disease and death. The Hindus’ belief in reincarnation renders them more easily ready to accept the loss of their dear ones. They believe in the law of karma, according to which what happens to us in terms of wealth or poverty, high or low caste level, accidents and diseases, is due to the positive or negative burden of our deeds in previous lives. This belief makes them more prone to accept their condition. However, sometimes they remain passive instead of struggling to improve their condition.
Poverty is still the life condition of the majority of Indian people, particularly those living in villages, who are about 70% of the total population. Though this poverty is generally not extreme and the basic needs may be guaranteed, when a person gets ill and costs of medicines, exams and hospital admission are high, the family often falls into the ditch of despair. All they own is used to cover the expenses, or the tragic decision is taken not to cure the diseased relative, as it especially happens when s/he is already disabled.
The Indian public health system does not provide universal coverage. Generally speaking, at all levels of government system from primary level to tertiary hospitals, doctors’ consultations are free, but exams are only partially subsidized and therapies; both medicines and surgical interventions, are totally charged.
In recent years, a new law was passed according to which totally free access to cures is provided to persons who fall into the category of the so-called“below poverty line”, but — due to corruption in the system — many families who deserve it do not receive due recognition. Moreover, the insufficient number of medical and paramedical staff and a diffuse corruption in the government health system at all levels have prompted people, even the poorest, to turn to private doctors. Unfortunately, in rural areas, where many quack doctors have opened their “clinics," cases of improper diagnosis and therapy, and evident exploitation are frequent.
What has been your most memorable experience at the Kiran Society?
Maybe the most memorable experience of life here is something that recurs every day, while in touch with disabled children, both the new and familiar ones: it is the heart-warming realization that these children are always smiling, grateful, happy with just having company and sharing whatever they have — whether material or just as immaterial a storytelling — with their peers, either normal or disabled.
This is the most rewarding aspect of my personal experience as a doctor and a westerner coming from a world where oftentimes we and — perhaps due to our bad example — our children fall in the gloom when we lose what we think we deserve, either material wealth or health. Thanks to their simplicity and trust, Indian children are capable of projecting themselves onto their peers, who may perform what they themselves are not able to do, and in so doing they are rewarded and enabled to make their own wishes come true, thus somehow finding a meaning to their limitations.
This participative attitude seems to be part of the Indian heritage, a willful acceptance of problems and limitations, while being nonetheless joyfully grateful for the great gift of life. This aspect of the Indian culture, imbued as it is with a pervasive feeling of the presence of the Divine, both immanent and transcendent, is continually feeding and enriching my own life, abundantly repaying me, if any repayment one may deserve, for my service to the children of this remarkable spot in India.