I have been following the disability sector for almost 35 years.  My passion started as a result of a government scheme offered to sixth form students.  At the time, the education authorities had developed a community work programme that gave the opportunity to students to do their ‘student-worker placement’ in an NGO instead of lazing around government offices.  At the time I was supposed to be ‘working’ in a museum in Valletta and jumped at this opportunity without blinking an eye.   

The rest is history.  My placement was at Dar tal-Providenza.  It must have been 1986 when this all started – I even remember very faintly Mons. Azzopardi, a saintly man bigger than life.  I have never looked back since then.  My love for the sector bloomed.  I ended up going every week-end and I did that for years after the student-worker scheme was over.  I was literally hooked on the place.  I made friends with the residents and it was fun.  At one point my wife (girlfriend at the time) and myself were even contemplating the possibility of fostering and eventually adopting a boy abandoned by his family at Dar tal-Providenza but complications ensued and the opportunity for this beautiful soul was lost (a sad story for a future column).  

Anyway, this experience spurred me to take my involvement a step forward.  Since than I have worked in the sector in every role one could imagine; I was a volunteer, supported a number of NGOs, did care work, was a back-up driver at Dar il-Kaptan, I helped in the kitchen, I washed toilets and showers, I organized care programs, later on managed a care service (at Dar il-Kaptan as well), worked as a community worker and later on as a social worker and also coordinated a government social work service, the first of its kind, for a number of years. 

I was so driven, I focused all my studies up to tertiary education on this area and all my advancements in my career are stamped with ‘disability studies’.  I was involved, with others, in conceptualizing the notion of an agency (later on called Agenzija SAPPORT) that converges all or most of the government services and I have been forever speaking, writing and researching on this area.  I also made my voice heard when it came to setting-up the Department of Disability Studies within the Faculty for Social Wellbeing, a small department which has done immense work in this sector since its inception. In other words I have been in some way involved in most that took place in the sector. 

I remember encouraging Dr Lawrence Gonzi, some time back, when he was still PN secretary general, to push towards having a ministry dedicated for this sector, a concept he did not warm up to saying that disability should remain in the mainstream political fold – an argument for sure but far from what really happens.  The idea was taken up by Dr Joseph Muscat (to set up a PS focused on disability) and now-a-days with Dr Robert Abela as PM this sector has been placed at the level of a ministry.  I must say that since then, we’ve just had one good Parliamentary Secretary, the others were a complete muddle.  Now, like many others, I’m looking forward to this new minister who seems to be taking a liking for this sector and is developing a framework policy.  We need to do this ASAP because this sector has stalled.  The disability sector only features on the national agenda in bouts and stints. 

Of course, we have seen improvement in the legislative aspects and in the development of services, albeit patchy.  In these last years we have seen a revamp of CRPD led by a young activist.  We have seen a number of organizations working with, for and by disabled people occasionally taking center stage – but only fleetingly.  That is not anywhere close to good enough.  By now the situation should be much better.  It is way too much ‘stop and go’.  If you had to ask me, we are still light years away from how the situation should be.

By now;

- we shouldn’t have a sector that features mostly in our patronizing telethon campaigns, belittling people and expecting them to exchange their stories for some guilty-driven donation;

- we shouldn’t have an inclusion system which is accepted half-heartedly by educators, policy makers and at times parents as well;

- we shouldn’t have discrimination at places of work, leisure venues and in retail with such an encompassing anti-discrimination law;

- we shouldn’t have vans loading and uploading their merchandise and people indiscriminately using reserved parking bays (and no, not even for a short period of time – because they are there for a purpose);

- we shouldn’t have front liners whether they are from the health, education or social welfare sector, whether it’s LSEs or care workers who are clearly unskilled, unapt and unmotivated - clearly in the wrong profession – proper psychosocial assessments need to be introduced;

- we shouldn’t have care workers, LSEs and front-line staff with salaries which are a pittance;

- we shouldn’t have professionals whether in the social, education, health or any other therapeutic sector who ask for exuberant fees for assessments or therapeutic sessions – these people need to remember that the state has paid for most of their studies and apart from that, being decent is part of their ethical demeanor;

- we shouldn’t have politicians who are unable to articulate their ideas on this sector and still refer to people as ‘angli’, ‘vulnerabbli’, ‘jahasra’, ‘anqas ixxurtjati’ – can’t they understand their pathetic use of language pulls people down and creates an ‘us’ and ‘them’ discourse which is very difficult to untangle;

- we shouldn’t be talking about village feast decorations as being an obstacle and a hindrance for disabled people who try to gambit without the risk of injury;

- we shouldn’t be speaking about inaccessible pavements with all the money that is being put into our road infrastructure;

- we shouldn’t have bedlam in early intervention services;

- we shouldn’t be speaking about the need for a specialized clinic focusing on the reintegration of spinal injury patients; 

- we shouldn’t allow the State to embolden antagonism and bellicosity between NGOs struggling for financing;

- we shouldn’t have families imploding or relationships collapsing at the breaking news phase because there aren’t enough support systems;

- we shouldn’t have journalists and program anchors refer to disabled persons in a supercilious way;

- we shouldn’t have young disabled people who are not allowed to go out by their parents or even worse have nowhere and no one to go with;

- we shouldn’t have, not even one person, begging in the streets let alone if the person is disabled;

- we shouldn’t have such a lack of coordination between the social, educational and health sector when disability is an overarching issue;

- we shouldn’t have such high prices for special equipment knowing well-enough that people have no choice but to buy this apparatus;

- we shouldn’t have assessments and therapy offered by the state provided only in the mornings (so that the professionals can do their private practice in the evening) but services should be offered in the evening as well so that children do not lose out on their education;

- we shouldn’t have a situation where so many disabled people, especially young ones do not have a strong voice;

- we shouldn’t be seeing so many banks, churches, government services, parties, parks, clubs, bars, shopping centers, sports venues and so on that are physically or sensorially inaccessible;

- we shouldn’t be expecting disabled people to do away with their sexuality and expect them to have a life dedicated to virginity;

- we shouldn’t be lacking a law that protects disabled adults;

- we shouldn’t be missing out on a social enterprise legislation;

- we shouldn’t be spending so many resources on large capacity homes but providing services that will enable disabled people to live in a place of their choice in the community with people they chose to share their life with;

- we shouldn’t be receiving calls, ‘ara tirrangalix ghal job’, ‘ara jaranix tabib he’ or ‘ara tkellimx ftit lil…’ - practically the raison d'être of this sector;

- we shouldn’t be lacking a deinstitutionalization strategy (thankfully the Ministry responsible for social policy and the Faculty for Social Wellbeing have started working on one);

- we shouldn’t be treating disabled people as eternal children;

- we shouldn’t have so little resources dedicated to research;

- we shouldn’t be placing disabled people in jobs that are not of their choice.

I could go on, but I’ve almost had enough.  Let’s be righteous and do the virtuous thing.