The defiant cry of Number Six

Readers old enough to remember the cult 1960s TV series The Prisoner, will also remember the defiant cry of the main character, referred to only as Number Six: “I am not a number, I am a free man”. Modified somewhat, it still applies to many Maltese disabled people who today shout: “I don’t want to become a number. I want to be free to choose how I live my life”.

Robert is an adult who has a very severe mobility impairment and he requires substantial support. He works full-time and lives with his mother. Robert’s mother is now growing old and is finding it increasingly difficult to give him the necessary support enabling him to remain at home with his family, which is where he wants to be.

Like many other disabled people, Robert doesn’t want to end up living in a large institution, shut away from his family and community. His nightmare is being warehoused along with a large number of other disabled people. Basically Robert wants to continue being himself, and not become a Maltese Number Six.

For the present, however, Robert has managed to create a bundle of services tailored to his own particular requirements. Thanks to the services which he himself has chosen, not only has the burden of care on his mother been minimised, but he has been able to remain living in the family house while still benefiting from the support he requires. Robert has managed to find a balance between his own income and state benefits.

Every year the Kummissjoni Nazzjonali Persuni b’Diżabilità (KNPD) tries to encapsulate its working strategy into a single slogan. Inspired by the experience of Robert and others like him the slogan chosen by KNPD for 2011 is Living Fully In Society.

The slogan was also inspired by article 19 of the UN Convention on the Rights of Persons with Disability which regards independent living and inclusion in community for persons with disability. Article 19 lists three fundamental rights in this regard:

We chose where and who to live with, in the same way as the majority of people without disability do;

We should not be forced to live in places such as institutions;

We are to be granted access to a variety of services in residential homes, or other support services within the community;

Throughout 2011, KNPD’s work is focusing specifically on ensuring that such rights are respected; although we have to add that improvement in this aspect is happening much too slowly.

Benefits are important but another way to live fully in society is to always strengthen our individual abilities. In order to do this, we require a good preparation for adult life, valid training to help us develop self-confidence and the necessary tools in order to become more independent. These are the aims of the Sonia Tanti Independent Living Section, which KNPD recently set up with financial assistance from the European Regional Development Fund (Project 072).

The centre was named after Sonia Tanti, a disabled person who throughout her life, thanks to her abilities and determination, realised the dream of every person with disability: that of living a full life within mainstream society. While we are aware that for many persons with disability all this is not always easy or indeed possible to achieve, we believe that we all have the right to be given the opportunity to try to achieve as much as we can of this common dream.

Of course Aġenzija Sapport, along with a number of non-governmental organisations, already offer residential services in community to a limited number of people with varying, and often high, support needs. Many such individuals are also subsidised by public funds. It is of great satisfaction for us to see that such residences are aiming to create an atmosphere as close as possible to a happy, family home; a place where each individual is valued as a unique and precious human being.

Such entities are following the example set by the Dar tal-Providenza, which from the very start acknowledged – and continues to acknowledge – the importance of a family environment built upon the principles of love and respect for the individuality of the person, regardless of personal abilities or connections.

KNPD is committed to the philosophy of personalised services, services provided according to individual need. To this end we are trying to develop a supported living strategy document which, we hope, will gain widespread consensus and lead to the changes we’re asking for. The document is being drawn up thanks to funding by the Progress Programme of the European Union. The draft document may be downloaded from www.knpd.org and comments and suggestions sent to helpdesk@knpd.org.

We are aware of prevailing financial constraints and limitations, however, we can no longer afford not to address this problem in a robust manner. We have to have the courage to bite the economic bullet. Thus, a first step would be cross-party agreement to commit ring-fenced public funds to enable the creation of approximately 10 small, residental units in the community per year. And this must remain an annual commitment until the present dearth of such facilities has been properly addressed.

This is our wish and that of our families and allies. And this is the challenge that we are presenting to our politicians and to Maltese society: give us the tools so that we can get on with the job of living fully in society.

Mr Camilleri is chairman of</p><p>the National Commission Persons with Disability.