ALI JOOKHUN

As recognized by the United Nations at paragraph (x) in the preamble of the Convention on the rights of Persons with disabilities (UNCRPD): a. »Convinced that the family is the natural and fundamental group unit of society and is entitled to protection by society and the State, and that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities. » 

Most parents want the very best for their children, and it is no different in the case of parents of children with disabilities. Internationally, children with disabilities are dependent on family carers/parents and in some cases their caregiving extends well into adulthood and even for a lifetime. Parents generally seek to find the best advice and support available in their respective countries.

Medical professionals are usually responsible for conveying the news, however they do not always have the appropriate training in order to help the parents at this difficult moment of disclosure or the adequate skills of communication and support. There is no tested way to help parents avoid the shock and pain that accompany exposure of the announcement of their child’s disability. This is precisely why it is necessary to try and prevent any exacerbation and aggravation of their suffering. From the moment parents become parents of a child with disability they also become vulnerable and they require support, care and supervision. After gathering information of the child’s disability, parents enter a situation with the potential for crisis.

Being myself a bereaved parent of twin daughters born with multiple disabilities, I seize this opportunity on the occasion of the 28th anniversary of the International Day of Persons with Disabilities to make some humble requests to our local authorities. There should not be any barrier for our children with disabilities to have access to quality and inclusive education. There are still numerous grievances from parents about access to education because of lack of qualified teaching and non-teaching staff who can understand all requirements of their children at schools. School infrastructure should be modified for children with disabilities to learn in a friendly and pleasant environment.

Basic invalid’s pension remains a constant hassle for parents of children with disabilities ;

almost everyday grievances from parents are reported on radio and in the written press for the disallowance of their children’s Basic invalid’s pension. Parents believe firmly that the Medical Board should be reviewed in depth. It has to be highlighted that the UNCRPD Committee stated in its 2015 Concluding Report : « The Committee is concerned that the definitions contained in the Equal Opportunities Act and the Training and Employment of Disabled Persons Act still reflect the medical approach of disability and are therefore incompatible with the concept of disability in the Convention.

The Committee recommends that the State party amends the Equal Opportunities Act and the Training and Employment of Disabled Persons Act to reflect the human rights model of disability and that it eliminates the use of derogatory language throughout its laws, policies and discourse. »

Most of the time, children and adults with intellectual disabilities (Down syndrome, autism etc.) are direct victims of the present system.

Being a parent is hard. Being a parent to a child with extra needs is very hard. Parents are a child’s first and best advocates. Parents should be closely involved in all aspects of decision-making and their views should be considered at all stages.

All parents feel stress when they see their children facing daunting problems. But the stress endured by parents of children with special needs is sky high. Many parents describe their efforts to help their child as a second full-time job, which unfortunately can lead to reducing work hours or even leaving their jobs.

Some days are more difficult than others, but always, parents persevere, always, because they know something that their child’s medical team may not. They can care for their child better than any other. On occasion of the International Day of Persons with Disabilities, I pay special tribute to the effort, care, love and of all parents including bereaved parents of children with special needs.

Sorrow and suffering are well-known companions of special needs parents. But they are the companions who lead quietly to the mountaintop of real, unadulterated joy.

 

* Officer of Order of the Star and Key of the Indian Ocean.

(Recognition for dedicated service to persons with disabilities).

Commonwealth’s 83rd Points of Light Award from Her Majesty the Queen 

(In recognition for exceptional service supporting those with Down syndrome and raising awareness of disability rights).

Parent of bereaved twin daughters born with multiple disabilities.