Life is a series of pathways which we take, sometimes purposely with destinations in mind, sometimes on the spur of moments that occur as we search for new directions, new beginnings and new experiences. The best pathways, however, are always those which are paved by people who believe in us and who willingly provide the necessary help when pathways tend to offer greater challenges.
The launching last Wednesday of a special Aġenzija Sapport programme for persons with a disability who will become or are aspiring to be parents is precisely one such pathway, one we intend to embellish with the expertise and guidance from professionals in the sector and stake-holders whose dedication and commitment over the years never waver.
A government for the people may be viewed cynically as a political slogan used and abused by many of diverse ideological persuasions, but the truth of the matter in this case is that it perfectly and palpably reflects the rich armoury of work that has been achieved, particularly during the past four years, in the field of disabilities.
The special programme for persons with intellectual disabilities who happily plan for parenthood is the first one of its kind as it offers ways and means to obtain practical and effective parental skills. It includes a €14,000 investment in the acquisition of a baby simulator with artificial intelligence which will offer real-life experiences to prospective parents with intellectual disabilities during sessions that will focus, also with the use of other special kits, on the process of pregnancy and the prenatal period when the mother’s body undergoes its many changes.
The baby simulator offer various other advantages, among them the facility to record the prospective parent’s reactions to crying, the changing of nappies and, indeed warmest of them, to lovingly and safely holding the baby. The stored information will then be used in the subsequent exchange between the person with a disability and the professional as they go through a series of training sessions in which basic parenting skills are discussed and attuned to the prospective parent’s personal needs. The fact that all this will take place prior to the birth of the baby helps streamline and develop the whole programme.
The programme is essentially set up to offer tailored individual guidance to prospective parents with intellectual disabilities and is the fruit of several years of research carried out by the University of Malta’s Faculty for Social Wellbeing which was also reponsible for the training of the first batch of professionals and social workers from Aġenzija Sapport.
Built around a series of sessions and different phases, the programme will provide in-depth sexual education, practical and individual attention to ways how to take care of the newborn baby and other special situations, such as parents with intellectual disabilities who already have children. This will of course entail a coordinated network of professional teams within Aġenzija Sapport itself and the collaboration of other entities, including those in the health services sector.
But there is no resting on our laurels. Later this year a Canadian University expert will be running a specialised training course for Aġenzija Sapport professionals who will no doubt add value to their already impressive careers.
As Dr Claire Lucille Azzopardi Lane, head of the Department of Studies on Disabilities within the Faculty for Social Wellbeing, said during this week’s launch, the programme is the result of concentrated research among parents with disabilities and the training of professionals who will now be running it. Sexual education formed part of the research that eventually led to establishing informed decisions needed to address the possibility of parenthood and to identify the specific needs of every person with disability aspiring to become a parent.
In her address, Aġenzija Sapport CEO Ruth Rose Sciberras rightly explained the project is yet another important link in the ever-growing network of services that the agency provides within the community in assisting persons with disabilities and their families to maintain their rights and to be participating partners within an evolving, inclusive Maltese society.
We did not ratify the United Nations Convention on the Rights of Persons with Disabilities as a mere, matter-of-fact routine, but determinedly as a commitment to protecting the rights and dignity of persons with disabilities. The convention, the first UN human rights treaty of the 21st century, specifies the right of persons with disabilities to their sexuality. This can no longer be considered taboo or an on-going social issue, for it is an educational process that has as its very source the concept of inclusivity. The pathway to a just and equal society.