Children provide hope to live and in most families, they also provide old-age security. They contribute companionship in our lives, emotional and even financial assistance in our old age. But do we stop and ponder as to what happens when a special child is born into a family? While our educational system turns out a large number of highly qualified people, it is not geared to provide any awareness in the terms of the special population. The result is that the parents may be brilliant software engineers, but are at a loss to understand the basics in disabilities.
The outcome of this is despair, agony, loneliness and hopelessness. The parents then begin the journey of exploring the various facets involved in the field of disabilities. They plan for their own old-age and for their children. Emotionally, the parents resign themselves to not receive any support from their children. The coping mechanism of these parents is put to severe test and people who are physically strong and mentally flexible try and adapt to the circumstances. The parents themselves may have adjustment problems and this can lead to serious disagreements within the family.
In a society with hardly any support in terms of respite-care or adequate facilities for these children, the parents have to continually wage a war to go through simple activities of day-to-day living, say teaching their child to even brush his/her teeth. Life becomes a continuous struggle, not only for the child, but also for the parents. As of today, few facilities are available in major cities for early intervention, schooling and vocational guidance. Even then, the onus of responsibility lies on the parents. One of the parents (most often the mother) is always expected to be in complete charge of the child or employ a care-taker. But how many parents can afford such services?
Typically, the mother gives up her job and career irrespective of her qualifications and has to handle the situation. I know a woman with a Ph.D in Mathematics, and another with an MBA degree give up their jobs. One took a course in B.Ed in Special Education. As it is, the mother undergoes a lot of emotional turmoil and on top of it, the family and society expects her to rise to the occasion and take on the challenges without any support services. A mother of a special child undergoes a lot of guilt herself, and the society sometimes puts the blame on her. Her physical and mental health is completely ignored. Her life takes a lot of twists and turns for which she is completely unprepared. Even a simple thing like good night's sleep eludes her for years as special children can be demanding even at nights even in their twenties. She has to handle her child's temper-tantrums, possible medical conditions, daily routine like bathing, feeding and sleeping, find sources of entertainment like sports, movies or walks. At the same time, her obligations and responsibilities towards to other members of the family continue.
As the children grow up, the nagging fear of the future pushes one to the edge. No doubt, fathers as well go through emotional turmoil, but how many of them have to give up their careers in their prime, and resign themselves to care-providing for their entire lives without any respite?
There is a crying need for affordable facilities offering permanent rehabilitation
programmes. I, as a parent of two special children and a special educator myself,
demand of the society to provide parents like me facilities that other parents take for
granted for the taxes we pay and our contribution towards the society.
Integrated schools for special children, access to play-grounds, human
interaction and support services, places to go to work and yes, invitations to
parties/weddings. Frustration over getting isolated affects special population
just as it would the "normal". Long term humane care is as much the society's
responsibility as it is the family's.
Most schools do not admit children with mental disabilities. Is this legal? I do not know, and wonder how many of us do know. This is detrimental to the society at large since we, the "normal" people, are completely insulated from mental disability and unprepared for any such reality in our own homes. Most people are in fact afraid of special people and do not even sit next to them in buses or trains. At best, we acknowledge their existence condescendingly and maybe some celebrity or the other donates huge chunks of money towards this cause. How much of this money really provides facilities towards these individuals is not clear. I have seen a facility where there were several sewing machines lying unused.
Rather than setting up separate schools for children with mental disabilities, it is necessary that our existing schools have special sections. This will change our attitudes towards special population, reduce our fear of them, and at the same time, the special population will lead integrated lives.
Most parents do not want to "dump" their children in some facility or the other. They would very much like to participate in their children's lives like other parents. If professional and reliable respite-care services like taking for movies, sports or other pleasurable activities are made available, then parents can relax a couple of hours everyday or at least a week. Assistance in day-to-day activities will greatly reduce the stress as well. Even for better-off families that can employ a person to do the chores, without any training, the employee ends up essentially spoon-feeding the individual rather than conditioning him/her towards self-help. Reliability is also compromised in such situations. So, respite-care services can provide greatly towards the health of these families.
Integrated work places for special people will also normalize their lives. Typically, a person interacts with the society at several levels. There is the home, the commute to work/school and back, the work/learning place and pleasurable/relaxation activities, typically in the evening. This healthy level of human-interaction is denied to special population (and their parents) which is an unnecessary source of frustration. Special people with varying levels of abilities should be integrated in work places or special work places (like packing) can be set up.
It is incorrectly believed that since India has a high level of unemployment, work opportunities for special population is unrealistic. To the contrary, care-providing and training for special population provides professional opportunities for the able. A major public-sector insurance company has schemes for long term financial support for special population, but this is not well known. Private financial agencies can also provide options to parents to invest for their children.
Huge rehabilitation facilities need not be the answer. Some of the existing facilities are very huge, and hence parents are not confident of the quality of care. Large numbers of rehabilitation facilities are needed. Small group homes can provide humane care in the long run. Also at present, even facilities which receive public subsidies are very expensive (on an average 15 lakhs rupees) for most parents. In addition, the parents may lose say in their children's care and hence are wary of these facilities. I know a woman in her seventies, who takes care of her special son in his forties (this includes shaving and bathing him) ignoring her own health. It is most important that long-term care providing facilities take parents into confidence and are available within the same town where parents live. Again, instead of segregated homes, group-homes in integrated set-up like flats are healthier for the society.
The media can provide information for families with special members. While there are research institutions in the field of special populations in almost all the major cities of India, information on medical and social needs for the special population in popular writings are unavailable. Without the media's support, the regular schools or housing colonies are not going to open special sections or flats for group-homes. We will become aware of where and how the existing facilities and good examples are run. We will not know whether these facilities require their residents to undergo sterilizations (hysterectomies for women). Media can do a lot for us.
Even if we are insulated from the special population at present, we have to realize that in the future we may have members with mental disabilities in our own families, or we may ourselves lose vital faculties. Care-providing facilities are important social investments.
