“We are all different. There is no such thing as a standard or run-of-the-mill human being, but we share the same human spirit. However difficult life may seem, there is always something you can do and succeed at. My advice to other disabled people would be, concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with. Don't be disabled in spirit as well as physically.”
These are just a few of the inspiring statements the living genius Stephen Hawking wrote in his autobiography My Brief History. What distinguishes him even more brilliantly, over and above his revolutionary discoveries about the universe, is his great ability to rise above his physical disabilities. At the age of 21 he was diagnosed with a very rare, slow-progressing form of amyotrophic lateral sclerosis that has gradually, over the decades, paralysed him. At the time, in 1963, doctors gave him a life expectancy of two years – but he is now 73!
Since the moment he had to fight the issue of who would pay for the extra ramps needed for accessibility around Cambridge University, Hawking has been fiercely independent and unwilling to make concessions for his disabilities. He preferred to be regarded as “a scientist first, popular science writer second and, in all the ways that matter, a normal human being with the same desires, drives, dreams and ambitions as the next person.” His wife Jane noted that “Some would call it determination, verging on obstinacy.” It took a lot of persuasion to make him accept the use of a wheelchair before he was 30.”
In whatever way we look at Hawking’s achievements, it is always very encouraging to note that no amount of disability can ever hinder anyone from contributing with his or her other abilities. The lesson learned through what Hawking – the living legend – has accomplished encourages us all to treasure even better all the skills and talents of those among us who have any form of disability.
I have the privilege of witnessing this frequently through my work as Parliamentary Secretary for the Rights of People with Disabilities and Active Ageing. In both sectors for which I am responsible, I have come across many instances where self-esteem and determination are key factors for these people. They are the best credentials that make them feel and act as integral members of society. In many cases, their will-power and stamina overshadows our own outlook on life even if, through our lack of awareness or even egoism, we are the culprits when it comes to creating barriers and obstacles for those with disability.
Stephen Hawking himself gradually lost the use of his hands, by 2009 he could no longer drive his wheelchair independently and also had breathing difficulties. Notwithstanding all these physical hurdles, he strived to find the latest technological solutions in order to communicate and proceed with his unique contribution to humanity.
These are the kind of inspiring thoughts that come to mind each time I am engaged with planning and executing projects with regard to people with disabilities. There is not a single day that such issues are not on top of my desk or at the core of the many visits to residential homes or centres around both islands. My very first aim is to secure the dignity deserved by these people and provide them with all possible openings and equal opportunities for a normal life within the community.
In so doing, we also have to cater for the respective families who, in any case of disability, are primarily the first carers, with the most loving dedication that cannot be easily matched by whatever the state can provide. It is, however, our duty as a government that delivers – for and on behalf of society – to ensure the best support and the highest quality services and training for these informal carers.
It is undeniable that no one is better than parents and other close relatives at providing the necessary care, but we have to step in immediately to soften and reduce their burden and provide the best professional support – on both an individual and a national level. For me and for my government this is nothing less than our duty! However untiring our successful endeavours in the economic field actually are, this government gives utmost importance to the social standards and needs of people and we constantly focus on the support and equal opportunities the most vulnerable among us deserve.
When I am writing these articles, I might actually find it easier to consult my packed diary and report on the many events with which I have somehow been involved during the week. However, I find it more responsible to give the background and rationale behind each initiative or project with which I am engaged. Each event, however, has its own meaning, which adds up to a whole range of projects that my Secretariat has in hand in both sectors within my remit.
An example of this was the agreement reached this week with Dar il-Kaptan to upgrade and extend the residential and respite services they have been providing for many years. The three-year agreement will provide for 17 residential beds and day respite for 15 people with a disability. We have also ensured that this agreement will be the first of its kind to include – and put into practice – new national standards that are to be followed in all residential homes for people with a disability.
This new code of standards has now been compiled and will soon be launched slot ha everyone is aware of it. It is intended for people with disabilities themselves – who will now have a better understanding of their full rights – and for all those who manage residential homes – who will now be more aware of what is expected of them. These standards will now be binding to all residencies, be they run by the state, by the Church or by the private sector. Plans are also in hand to have a total of 10 residential homes for people with a disability by the end of this legislature, hence starting to deliver on our electoral pledge of putting minds at rest during their lifetime for parents and relatives who are the most dedicated informal carers.
We are fully aware of the hard work accomplished by the Church in this sector and the investment made by private entrepreneurs together with the valuable input of hundreds of volunteers over the years. Although some may still not admit it, it was the first Labour government in the 1970s that first opened up the national conscience – and coffers – to benefit people with disabilities. That initial brave step of basically accepting the very existence of those with disabilities within society has matured over the years and we have now come to the bold step of establishing their rights and applying them across the board. This legislature will certainly be remembered for the record number of bills relating to people with disability and their rights, together with the strengthening of the Commission for Persons with Disability, soon to be renamed as Commission for Rights of Persons with Disability and a stronger and autonomous Agenzija SAPPORT as the state service provider.
Over and above all the support services provided and the amount of specific protective legislation in their favour, this government is committed to act on behalf of the nation in engraving their rights throughout the country’s daily life and particularly in all residential homes. In the end, we can do no better than endorse and translate into tangible projects Stephen Hawking’s statement that people with disabilities are “normal human beings with the same desires, drives, dreams and ambitions as the next person.”