As a mother for 33 years of a child with severe autism, I struggled and militated for the development of services that support disabled people and their families. It is Francesca’s life, the lessons I learnt when she was still with us, and the saga of the other families I met throughout the years, which motivate this contribution.
When I heard about the proposed disability hub, my initial reaction was “God Almighty, help us. Another ‘mental’ home!”
Nevertheless, l resolved to give the devil his due and endeavoured to understand the various official explanations given by the government and its consultants.
That was prior to reading Parliamentary Secretary Justyne Caruana’s definition of an “unsegregated” approach to disability policy where she maintained that the proposed disability hub “will not be a place in the middle of nowhere but at the heart of the community”.
The location of services or residences does not distinguish them from an institution. Services located in the community that are developed by experts to ‘fit’ persons with disability in them actually represent the more difficult barriers of institutionalisation, adversities that are not overcome by physical relocation - the ‘We know best and you should be grateful to us’ arrogance-barriers KNPD’s former chairman Joe Camilleri lamented about in his assertion that it is “a sad and tragic time for disabled people” if the disability hub had to materialise.
What is the point of all the efforts and money invested to bring about inclusion in our schools when a few years later these persons will be segregated in one common place?
‘Normal’ people are ‘individuals’. They have their strengths, weaknesses, likes, dislikes, different temperaments. Persons with diverse intellectual abilities are not any different. A severe impairment necessitates a vast network of support needs. Such persons cannot be ‘fitted’ into predesigned services.
We do not need community-based alternatives. We need communities that support persons with disabilities
These persons will only benefit from services built around their specific needs and those of their families. The locality of the service, or a hub of services, does not benefit persons like Francesca if that locality is not their home, their neighbourhood, the community resources of their choice and, most importantly, among people they know and trust.
Any service that does not build upon the family and community relationships of a diversely abled person is institutional in nature, irrespective of its location. Creating a huge complex costing €12 million does not reflect the day-to-day experience of so many vulnerable people who still face Francesca’s challenges. Money wellspent would be in the facilitation and mobilisation of the unique array of supports vital for each individual to be able to live in his/her own home, fully participating in the life of the community.
We do not need community-based alternatives. We need communities that support persons with disabilities. This challenge includes the participation of local councils, parish churches, community organisations, sports clubs, etc. We do not need “homelike environments”. We need to figure out and finance structures which support individuals in their own homes, within their own communities.
The “heart of the community” is not about a location in Naxxar or anywhere else for that matter. The heart of the community is the diversity of relationships and support systems that sustain us as we go by living our daily routine - the parish church, the grocer, the hairdresser, the football ground, the park, my home, and my neighbourhood.
Why should persons like Francesca be transplanted to an en bloc hub, depriving them and their families of the humane touch, where in all probability, they become ‘cases’ or ‘numbers’ or ‘clients’ or ‘service users’?
Malta needs innovative individualised funding supports not hubs of services. Individualised funding gives each individual the necessary resources to create those supports and services that will allow him or her to choose the home to reside in and the life to live.
Disabled persons cannot be considered as full citizens unless they have the right of choice like the rest of us. It is when we support the weakest of the weak and the poorest of the poor to live the life they choose that we can boast of a humane society.
Helen Mifsud Bonnici, a teacher by profession, was active in the Parents Society that was instrumental in setting up the Foundation for Respite Care Services and Dar il-Kaptan.