I have been shadowing the disability sector for quite some time now.  There were both high and low moments over the years.  I believe that the golden years in this field of social policy were at the time when Lawrence Gonzi was still Speaker of the House of Representatives.  He managed to take the agenda not only up a notch but placed it at the top of the Government’s priority list.  At the time there was one development after another at a super-fast rate that reignited hope into people with disability and their families. 

I believe that the landmark moment for this sector was the enactment of the Equal Opportunities (Persons with Disability) Act.  At the time, and I feel this argument still holds, this law was considered a linchpin in taking this agenda up to a ‘human rights’ level.  People with disability were now invited to stand-up for themselves and were given the tools to do so.   

However, until some years ago this enthusiasm had turned into a slump. This sector experienced a dearth but the current Government has taken it on itself to position this debate at the top of the social policy schedule which is indeed encouraging and positive. Most probably the most important and least celebrated decision was that of appointing a Parliamentary Secretary to sit on Cabinet focusing on disability rights. I had been lobbying for this position with a number of party leaders over the years but had found resistance.  Even though disability affairs had improved in leaps and bounds (thanks to both Governments) we still required a point of reference that would converge all the efforts in this sector at policy level.  Lest we forget, disability is not just about developing policies, it is also about employment, education, relationships, rights and all the transitions that take place in a person’s life.  Having this over-arching Parliamentary Secretariat only has positives.   

In these last years we have seen an array of initiatives flowing out of this Office led by Hon Justyne Caruana; from focusing on developing a regular supply of residential units in Malta and Gozo to the improvement in personalised services, from the setting up of the Focal Point office to monitor the implementation of the UN CRPD to the establishing of the Guardianship Office, from giving a legal entity to Agency SAPPORT to perform its duties better to developing a policy and strategy that will see us through the next five years.  All have been important milestones because if we want social policy to have the desired effects we need to have a plan and not simply knee-jerk reactions.  It is clear that politicians have realised that change does not only come bottom-up but for a minority to re-position itself in the community and effectively engaged in active citizenship we require a proper action framework which I believe needs to be founded on a rigorous legistlative structure. 

I am very pleased that even the Opposition is coming up with its own ideas and private members’ bills and debating profusely the countless pieces of law that the Government is laying out. If one had to zoom in on the Parliament’s agenda one would see that there is a whole trail of legislations new or needing amendments that are waiting to be discussed.  This is very exciting.  It is interesting because it is a clear indicator that lobbying taking place at the grassroots is reaping dividends.

Last Friday we witnessed another clear example of the way things are moving forward.  The Autism Empowerment Bill announced by Prime Minister Muscat and Parliamentary Secretary Caruana was a clear indication that stakeholders can work together.  We do not have to agree and hold hands all the time but there is a modus operandi that can guarantee results.  The design of the autism empowerment law was a model of how different parties can come together.  Parliamentary Secretary Caruana adeptly managed a working group made of academics, parent activists, policy makers, policy regulators and service providers.  In record time we now have a legislation that is not only focused on sanctioning but on providing direction to the Government through a State Plan on how this sector can be taken forward. This law is exemplary and a positive precedent - stakeholders and not only politicians are now designing and giving birth to laws. Dr Caruana elucidated the task of this legislation very well in her speech;

The Persons within the Autism Spectrum Empowerment Act is indeed a landmark.  The State Support Plan envisaged in this new law, will be compiled by the stakeholders themselves and it includes persons with autism and their families who, together with other entities involved in autism, will compose a national council. This ensures that the country responds in a decisive manner in what this sector deserves with all stakeholders collaborating together in a coordinated manner.

I would really like to see this Country of ours embracing this model of collaboration.  These occasions when we can go beyond our own interests and see the wider picture are what takes social policy forward.  The way we modelled this law and how it has been designed and will be implemented exemplifies the way our social policy is constructed. The debate, the digs that take place between Government and Opposition are fine if our heart is in the right place. It is through debate and argumentation that we can make things work better.  Keeping this agenda apolitical is central.  

I would like to echo a quote of what the Prime Minister said during his speech;

We need to work tirelessly in this sector .... the dedication of the people working in this sector and the commitment of the relatives of persons with disability .... is unparalleled. 

People who do not have to face the ongoing difficulties in this sector, who are not parents, persons with disability or siblings will never really know what it means to be faced with so many challenges day-in and day-out.  We can never understand the pain that parents go through seeing their children struggling.  It would be arrogant to think that we can conceptualise the challenges they have to face because at every turn they will find something they have to deal with.  It is unimaginable to see your children not being unaccepted, pushed away from the group, not invited to parties, glared at, not allowed to retain friendships and relationships.  True, it is not all black and bleak but it is a fact that parents of children with a disability and persons with disability themselves need so much more energy to do what all of us engage with in serenity.

It is not customary I do this in my Column but I feel duty bound to quote a significant part of Valerie Brincat’s speech during the launching of the law.  The pain I read in these lines are what needs to keep us going.  Valerie is the mum of three children who are on the autistic spectrum and yet finds time to actively engage with the rest of the community – she is truly an inspiration. 

So many people have asked me to describe what it is like to raise a child with autism. The truth is that it’s a struggle. I must admit that certain days are truly challenging. There were times when I got so exhausted that I collapsed on the couch, not to mention the times I cried in my room. But I’ve learnt to take each day as it comes…one step at a time. If one had to ask me what the hardest part of it all is, without hesitation I'd say “society!". 

Autism affects the way a child perceives and experiences the world. Besides having trouble understanding what’s going on around them, these children may feel out of step with the rest of the world, without understanding why. “They may feel like they’ve been put down in a foreign country where they don’t know the language or the culture.
Society treats our children with apathy, ignorance and disrespect.

Strangers give us and our kids a lot of attention in the form of staring, dirty looks, unnecessary comments and just overall judgment. This is even more so when they try to deal with our children. In most cases due to the lack of knowledge of the condition and no interest to even bother looking online or seeking any support on how to deal with such issues... they view our children as being a burden.

As I said earlier on, I can’t say I know what it means even though I have lived and was close for a long time to a severely autistic young man who has since passed away, but I remember well the heaviness that one feels when one does not manage to get through to someone else. Mr Adam Harris, Founder and CEO of AsIAm Ireland and Lawyer Alistair De Gaetano, who both declared that they are on the autistic spectrum disorder during their presentation last Friday  showed us that given the space they can achieve.

As Parliamentary Secretary Caruana declared, this is about ‘self-determination’ first and foremost and that is what we need to attain in our social policy.  It is necessary to create the mandatory tools to ensure people with disability bring the desired changes for themselves – this is the true meaning of emancipation..