OPINION
40,000 (DISABLED) PEOPLE AT THE CROSSROAD
BY
DR ANDREW AZZOPARDI
Mr. Borg told me that he had to go work abroad to be able to
make the necessary money to pay for the assessments of his
disabled son. He said that services are still lacking in such a
drastically worrying way here in Malta. He told me more than once
that it’s either the Maltese consultants way of doing things or
nothing. He wanted to use an Italian Agency, because through
research he made he believes it is the best and most suitable
agency for his physically disabled son – but he was not provided
with the subsidy, as the Health Authorities said it’s the hospital ‘they’
think is the best that will be on offer – so much for parental
involvement!
Ms. Scicluna said that the way things stand she has to start
considering permanent residential care for her daughter because
the provision of community services are too little and far apart. Not
enough long-term respite, community and other services are
available. When she complains, she gets sidelined and accused
that she is being ‘too demanding’ and has ‘not accepted her
personal situation’.
Matthew is desperate for a service. He feels that all the services are
just designed around agency’s needs rather than the individual
aspirations. He says that there was a lot of improvement over the
years when it comes to social inclusion…but somehow things have
dried up recently. He said that he is willing to make use of the
services available but only if he is involved in the design of that
respective service – otherwise he will not accept being supplied
with expedient services that he needs to adapt to (once again).
I have been involved in this field in some role or other for almost 20 years –
and disability issues have never gone so desiccated. I can’t stand the
silence anymore! The disability agenda has gone disturbingly and
distressingly voiceless these last years. What a difference from the debate
that was ensuing in the late 80’s and early 90’s.
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My First Concern:
What has happened to the grinta, liveliness, enthusiasm of the National
Commission Persons with Disability (NCPD)? Has it become just another
Government department engrossed in running the day-to-day chores
rather than promoting and instigating debate, encouraging innovative
ideas, motivating the development of new services, agencies and
organisations to push for so much needed development? The structures
of the NCPD have made this institution too close to Government and
distanced itself from the grassroots. People have been ‘there’ for so long
with very few additions. This Commission in the 80’s and 90’s was literally
‘on fire’ but has now been turned into a simmering candle, with an
incestual and ‘cosy corner’ in-look – happily running its daily agenda
without getting too much agro flying around. Its only presence in civil
society is the occasional press release on positions that I am very dubious
whether they would have been debated sufficiently and succicintly with
disabled and parent activists. Added to this, hardly any public fora takes
place. My appeal – if people have grown worn-out and bored rigid,
propel off - there is so much work to be done! This Commission when
having Chairman Gonzi leading it, was on the spot, upbeat, provocative
and proactive. I am not too sure that this candidness still exists – NCPD is
toothless. From what I observed when I worked close to the Commission is
that words and gestures fly out in antagonism and ill-feeling from some.
People at the top seem to be aloof on recent research developments in
disability politics. It is clear that they don’t create the time to research,
develop and adjourn.
Status quo when betrothed with this minority has a horrendous effect!
My Second Concern:
How organised is the disability movement in Malta? What happened to
the Maltese Council of Disabled People, the Maltese Disability Studies
Group and the Federation of Organisations of Persons with Disability? It’s
all gone so worryingly hushed. I am cognisant that disabled people and
their families are very fretful and flustered with the whole situation. Parents
and disabled people are not blissful or exultant with the services they are
being provided. Community and residential services are lacking or
developing very slowly. There is little representation, dialogue and no
sense of lobby group and activism.
My third concern:
Agency SAPPORT.
Where is the strategy development and
synchronization that this organisation is responsible for? Plucking holes in a
family’s multifaceted needs is really not what giving a comprehensive
service is about. How could this oragnisation be contented with providing
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an hour of service a week here and there to a ‘single parent’ who has a
son with a severe impairment? What haughtiness makes us believe that a
couple of hours a week keeps people in the community? How come this
Agency is under-spending its budget when so many services are
required? To me, this organisation is parched. When this organisation was
being charted out years back, the fundamental rationale was that this
agency will draw together all stakeholders into pushing forward the
services and laying out the needs of this minority – if necessary by kicking
up the system. What a far cry this agency is turning out to be from its
original forecast.
Where to?
It is high time to realise that we are at a crossroad. It is time to think
profoundly and tangentially. We need to draw away from a plethora of
unconditional negativity. It’s either now or never.
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We need to have an across-ministerial forum which includes health,
social policy, welfare and education services. I thought that the
NCPD had that role – but in my opinion this office is failing to
converge the endeavour of various sectors.
We need to have a persona, as there was with Dr Lawrence Gonzi
in the 80s, who has the respect of civil society and who can
congregate all the elements and reposition this debate on the
national agenda. Stalwarts like Mr. Lino Spiteri, Dr. Antoine Mifsud
Bonnici and Dr. Louis Galea come to mind.
The operative structures of the National Commission Persons with
Disability ought to be audited. The NCPD comes across as too
buddy-buddy. The NCPD needs an overhaul in its operative and
managerial mechanisms. People who are tired need to move on.
Fresh disabled and parent activists should be enticed. A number of
people who can be considered as academic and professional
allies must be affianced.
We are to consider the development of a Commissioner for
Disability Issues. We are still too far from being in an optimum
situation and this requires a legistalative office to oversee and direct
civil society.
The disabled and parent activists are to be encouraged to create
their own inclusion movement. The right structures and mechanisms
need to be in place to give the necessary space and opportunity.
A research agenda needs to be developed via a strategic alliance
with the University of Malta so that the latter will take on board the
responsibility of coordinating emancipatory founded research to
partner this minority.
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The Government is duty bound to bring new people into the scene.
Prime Minister Gonzi has loads on his plate especially at the beginning
of a legislature. A Government is measured by the ability to read the
signs of the times and the correlated decisions that need to be taken.
Careful – as far as this area is concerned we are running out of time
and tune. According to the World Health Organisation, the disabled
community is made up of circa 10% of the population giving an
estimated 40,000 people in our country who are disabled. Visualize,
these people together with their families - what a representation that
makes! As the tune goes, power to the (disabled) people – power to
the (disabled) people right on!
Dr Andrew Azzopardi
Lecturer
Department of Youth and Community Studies
Faculty of Education
University of Malta
A:
T:
E:
Room 114, FEMA Building, University of Malta, tal-Qroqq, Msida, MSD 2080
23402918
andrew.azzopardi@um.edu.mt
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