HATS OFF to all the special kids and their parents. I hold them in great admiration, the former for their patience with their challenges without complaining, and the latter for giving unconditional love and care to their special offspring, asking absolutely nothing in return.
Hats off also to the United Nations and members who have signed the two international human rights agreements that grant special rights to special children. These are the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities (CRPD). This would also include Pakistan which has signed and ratified both conventions.
I must add here my very strong reservations. On both occasions, when the two instruments were signed, it was a PPP government that was in power and took the lead, although its implementation record in this regard was dismal. It does not absolve other parties who neglect the duties that the conventions impose on all signatories. In these cases, it is the state that becomes responsible and it is shameful that children are the most neglected part of our population, regardless of the party in power. Much to the dismay and disappointment of parents of special children and their compatriots, these conventions never brought the expected relief.
Both conventions make special mention of the special child. Thus article 23 of the Convention on the Rights of the Child stipulates that any mentally or physically handicapped child shall enjoy the right to participate fully in the life of his community. It makes it mandatory for States to extend assistance to those caring for special children and their parents in order to facilitate children’s access to their rights and to ensure that their dignity is not violated.
Parents of special children suffer financially and emotionally.
The CRPD also recognizes the need to accommodate the needs of special children as they grow physically. He talks about adapting the facilities to the physical needs of a growing child. It is therefore not unreasonable to demand more of our government. It is the responsibility of the State to respect the commitments it has made by signing and ratifying human rights instruments.
There are a wide variety of disabilities in children around the world, and medical science has yet to discover the reasons for many of them. It is therefore not even possible to adopt preventive measures.
Broadly, disabilities can be categorized into two groups. Some special children can be helped somewhat by receiving training and guidance to become self-sufficient in meeting their own personal needs so that they are not totally dependent on others. But there are others whose troubles are so severe that they are beyond such assistance. They are totally dependent on their caregivers who are usually their parents with limited means. It is the families of special children of the second category who need financial support and in terms of equipment.
I personally know parents with special children who are suffering both financially and emotionally. I find this negligence on the part of the government to be simply unforgivable. The victims of this official insensitivity and neglect are invariably the innocent young people who have no voice and are therefore doubly handicapped.
Take the case of Mahira (pseudonym), the daughter of a friend of modest means, who suffers from microcephaly problems which have not allowed her brain to develop normally. As a result, she is mentally disabled. Due to autonomic neuropathy, his bodily functions are also affected. Her sweat glands are not functioning and she has no pain sensation in her extremities. Her self-striking disorder that she has no control over is another challenge. Mahira needs constant supervision when awake, and she needs an air-conditioned environment if her body temperature is to be regulated.
Those who have cared for such children will understand how agonizing it can be to have a special child suffering from such symptoms. The emotional stress parents live with is bad enough. In addition to this, for Mahira’s family, the electricity bill itself has become a big problem as KE regularly increases electricity charges.
How can those who run the country help in such cases? In many ways. A program on the model of BISP and Ehsaas could be launched to provide financial support to these children. In cases where special facilities such as electricity/gas are required, concessions can be reserved on utility bills for families with special children. All this is not difficult to organize since Nadra has a column for the disabled who should be able to identify special children.
There is also a need to raise awareness about special children. It is not the wrath of God that falls on parents for past sins. It is a message that must be delivered to all layers of society.
Posted in Dawn, September 23, 2022