Kudos to all special children and their parents. I admire them greatly, the first for their patience in facing their challenges without complaint, and the second for giving their special offspring unconditional love and care and asking absolutely nothing in return.
Kudos also to the United Nations and to the members who are signatories to the two international human rights treaties that give special children special rights. 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 the two conventions.
I must add my very strong reservations here. On both occasions when the two instruments were signed, a PPP government was in power and took the initiative, although its record of implementation in this respect was dismal. It does not exonerate other parties who neglect the duties that the conventions impose on all signatories. In such matters, the state is responsible and it is shameful that children are the most neglected group in our population, regardless of which party is in power. To the great dismay and disappointment of parents of special children and their compatriots, these conventions have never brought the expected relief.
Both conventions make special mention of the special child. Article 23 of the Convention on the Rights of the Child states that all children with mental or physical disabilities have the right to participate fully in the life of their community. It obliges States to provide support to those caring for special children and their parents 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 adapt to the needs of special children as they grow physically. It is about adapting facilities to the physical needs of a growing child. Therefore, it is not unreasonable to ask for more from our government. It is the responsibility of the state to honor the commitments it has made by signing and ratifying human rights instruments.
There are a variety of disabilities found in children around the world, and medical science has yet to discover the reasons for many of them. Therefore, it is not even possible to take preventive measures.
In general, disabilities can be divided into two groups. Some special children can be helped a little by giving them training and guidance to be able to meet their own personal needs on their own so that they are not totally dependent on others. But there are others whose disorders are so severe that they transcend such help. They are totally dependent on their caregivers, who are usually their parents of limited resources. It is the families of special children in the second category who need support – financially and in terms of facilities.
I personally know parents with special children who suffer both financially and emotionally. I find that this negligence on the part of the government is simply unforgivable. The victims of this official callousness and neglect are invariably the innocent youth who have no voice and are therefore doubly handicapped.
Let’s take the case of Mahira (not her real name), the daughter of a humble friend who suffers from microcephaly that doesn’t allow her brain to develop normally. As a result, she is mentally handicapped. Due to the autonomic neuropathy, their bodily functions are also impaired. Her sweat glands are not working and she has no pain sensations in her extremities. Her self-strike disorder, over which she has no control, poses another challenge. Mahira needs constant monitoring while awake and she needs a climate controlled environment if her body temperature is to be regulated.
Those who have cared for such children will understand how distressing it can be to have a special child suffering from such symptoms. The emotional stress that parents live with is bad enough. In addition, the electricity bill itself has become a major concern for Mahira’s family, as KE regularly increases electricity charges.
How can those responsible in the country help in such cases? In many ways. A program along the lines of BISP and Ehsaas could be launched to help such children financially. In cases where special facilities such as electricity/gas are required, concessions on electricity bills can be provided for families with special children. All of this is not difficult to organize as Nadra has a column for people with disabilities who should be able to identify special children.
There is also a need to raise public awareness of special children. It is not God’s wrath that is visited on parents for past sins. This is a message that needs to be conveyed to all sections of society.
Published in Dawn, September 23, 2022