Over the last 30 years the disability sector in Malta has undergone radical changes for the better. The situation may not be ideal, nevertheless we can feel satisfaction in the knowledge that together we've done much to improve the quality of life of all disabled Maltese citizens.
Together we have seen considerable improvement in service-choice, service-provision, physical accessibility, accessibility to means of communication and information, and, perhaps most notably, in the development of positive attitudes and respectful language.
In the past, the traditional Maltese family functioned as a fortress offering shelter, support and defence for its disabled member against an often hostile world. In its extreme form, protecting the disabled persons led to their becoming invisible. Thus, home was (perhaps unconsciously) transformed into a benevolent prison. Better education and access to more humane ideas and practices has changed this mindset of fear and shame forever.
Today, disabled family members are valued as individuals and are also part of the public face of the Maltese family. Over time, attitudinal shifts, coupled to noteworthy social, educational and legislative measures, have led to the introduction of the Handicapped Pension Scheme (now the Disability Pension) of 1974, the setting up of the Kummissjoni Nazzjonali Persuni b'Dizabilita' (KNPD) in 1987, the introduction of an Inclusion Policy in our schools in 1994 and the enactment of the Equal Opportunities (Persons with Disability) Act of 2000. These, coupled with other progressive reforms have left an indelible, positive mark upon disabled Maltese individuals and their families.
In 2007, disability and the family brings to mind two different models: The family unit where the disabled person is cared for and sustained by parents and siblings, essentially a passive individual, these being the "carer" families; and those families of disabled people, where the disabled individual is one of the adult partners - husband, or wife, mother, or father.
Recently, KNPD and NCPE (the National Commission for the Promotion of Equality) organised a round-table discussion, as part of the EQUAL Community Initiative Programme for Malta 2004-2006 and which was part-financed by the European Social Fund (ESF). The discussion focused on "Equality and Disability: the way forward". During the discussion the two faces of disability and the family became apparent, as did the double disadvantage of being a woman, whether you are a disabled woman, or a non-disabled woman caring for a disabled relative.
Louisa and Philip Grech shared some of the challenges that parents whose children have an intellectual impairment struggle with on a daily basis. These included: disruption to normal family, the peril of social isolation, the need to undertake continual advocacy (over and above normal family concerns), the strains on the marital relationship and the perennial danger of physical and emotional burn-out.
Mrs Grech emphasised the "double disadvantage" that mothers of disabled children face.
Women, she said, are the main carers in the family, adding that caring full-time for a disabled child frequently offers few opportunities for self-realisation, or self-fulfilment - especially where job prospects were concerned. Louisa and Philip noted that non-disabled siblings often faced disruption to their routine and lack of attention from over-stressed parents. Some non-disabled siblings were also burdened with extra responsibilities.
Marthese Deguara, speaking on behalf of people with an intellectual impairment, reinforced the need for the voices of all disabled people but especially those with an intellectual impairment to be heard and heeded by their own families. Marthese stressed the importance of self-advocacy training for people with an intellectual impairment, adding that, with the right training and support, many intellectually disabled people can speak for themselves. She made a plea to parents and professionals to make use of age-appropriate language and activities for people with intellectual impairment.
Joseph Stafrace, who has a visual impairment and is married, emphasised the importance of gainful employment in order to allow a disabled adult to achieve financial independence and to enable them to lead an adult life. Joseph also insisted on the need for appropriate education, training and support so that a disabled person would enter the world of work.
"I have a visual impairment, but I'm not stupid," stressed Mariella Beck Venanzi. Mariella spoke eloquently about the plight of disabled Maltese women. Among the points she raised were the need for more opportunities for life-long education and gainful employment. She noted instances where, like their non-disabled peers, disabled women were asked questions about pregnancy and marriage, which were not always relevant to the job application.
She also touched upon the double difficulty of coping with motherhood and disability, observing the need for a more flexible approach to working conditions and the need for more and better child-care centres.
George Vella represented people with hearing impairments. The main obstacles they faced were attitudinal. Most believed that hearing-impaired people were incapable of living full, adult lives. The reality in Malta, he added, proved otherwise.
Many young, hearing impaired adults were forging ahead with their lives in a manner unheard of in the past. However, George expressed his conviction that, with improved educational services, access to better job opportunities and, above all, better sign language interpretation facilities, they could achieve much more.
Rita and Kevin Vella, who have mobility impairments and who were married 11 months ago, said that they had benefited greatly from the support of their immediate family and friends. This had given them the self-confidence to aspire and achieve.
Rita and Kevin live in a fully accessible apartment in a growing community, where they are provided with 24/7 personal assistance. They readily admit that maintaining their lifestyle as a couple is a full-time concern and that difficulties abound. Yet, both agree that the struggle is more than worthwhile.
They both acknowledged the central role played by Agenzija Sapport and the Housing Authority in providing them with the foundation on which they could build an independent and quality lifestyle. Rita concluded with a forthright statement: "There should be no penny-pinching where the quality of life of disabled people is concerned. Living in the community is not a negotiable right."
The United Nations' Convention on the Rights of Persons with Disabilities, specifically in Article 23, "Respect for home and the family", recognised the rights of disabled people in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others. On March 30 of this year, Malta became one of the first countries to sign the Convention and optional Protocol, thus sending a powerful message about our society's continued commitment to ensuring equal opportunities for disabled people.
The real challenge for us - decision-makers, public and private entities, the Church, non-government organisations and individuals (disabled and non-disabled) - is to make the expectations of disabled individuals and their families a reality. Let us have a society with the vision and tenacity to provide real opportunities for all.
Mr Camilleri is chairman of the Kummissjoni Nazzjonali Persuni b'Dizabilita' (KNPD) and a disabled person; he is married with two daughters.
Mr Bezzina is the executive director of KNPD and is the parent of a disabled adult.