Author: Zubeida Mustafa
Hats off to all special children and their parents. I hold them in great admiration, the first for their patience in facing their challenges uncomplainingly, and the second for giving unconditional love and care to their special offspring, seeking absolutely nothing in return.
Hats off also to the United Nations and those members who signed the two international human rights agreements that give special children special rights. They are the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities (CRPD). That would include Pakistan as well which has signed and ratified the two conventions.
I must add my very strong reservations here. On both occasions, when the two instruments were signed it was a PPP government that was in office and that took the initiative though its implementation record on this score has been dismal. It doesn’t absolve other parties who neglect the duties the conventions impose on all signatories. In such matters, it is the state that becomes accountable and it is shameful that children are the most neglected section of our population, irrespective of which party is in power. To the great distress and disappointment of the parents of special children and their compatriots, these conventions have never provided the relief they were expected to.
Both conventions make special mention of the special child. Thus Article 23 of the convention on child rights states that all children with mental or physical disability will enjoy the right to full participation in the life of their community. It makes it mandatory for states to extend assistance to those who care for special children and their parents in order to facilitate the children’s access to their rights and so that their dignity is not violated.
The CRPD, too, recognises the need to adjust to the needs of special children as they grow physically. It speaks about adapting facilities to the physical needs of a growing child. Hence demanding more from our government is not unreasonable. It is the responsibility of the state to observe the commitments it had made by virtue of signing and ratifying human rights instruments.
There is a diverse variety of disabilities that are found in children all over the world and medical science has yet to discover the reasons for many of them. Hence it is not even possible to adopt preventive measures.
Broadly, disabilities can be classified into two groups. Some special children can be helped somewhat by being provided training and guidance to become self-reliant in fulfilling their own personal needs so that they are not totally dependent on others. But there are others whose disorders are so serious that they are beyond such assistance. They are utterly dependent on their carers who are generally their parents with limited means. It is the families of special children in the second category who need support — financial and in terms of facilities.
I personally know of parents with special children who suffer both financially and emotionally. I feel that this negligence on the part of the government is simply unforgivable. The victims of this official callousness and neglect are invariably the innocent young ones who do not have a voice and are thus doubly handicapped.
Take the case of Mahira (not her real name), the daughter of a friend of modest means, who suffers from microcephaly issues that have not allowed her brain to develop normally. As a result, she is mentally challenged. On account of autonomic neuropathy, her body functions are also affected. Her sweat glands do not work and she has no pain sensation in her extremities. Her self-hitting disorder over which she has no control is another challenge. Mahira needs constant supervision while she is 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 agonising it can be to have a special child suffering from such symptoms. The emotional stress the parents live with is bad enough. On top of that, for Mahira’s family, the electricity bill itself has become a big issue as the KE jacks up electricity charges regularly.
How can those managing the country help in such cases? In many ways. A programme on the pattern of the BISP and Ehsaas could be started to provide some financial support for such children. In cases where special facilities such as electricity/gas are needed, concessions can be earmarked on utility bills for families of special children. All this is not difficult to organise since Nadra has a column for people with disabilities that should be able to identify special children.
There is also a need to create public awareness about special children. It is not God’s wrath being visited on parents for past sins. This is a message that must be delivered to all sections of society.