This must have been the umpteenth Xarabank edition that was dedicated to collecting money for Bjorn Formosa’s projects.  You must give it to the man, his heroics are second to none.  Notwithstanding the fact that he has been hospitalised innumerable times and his health has degenerated unremittingly, he keeps active.  He must have had life threatening surgery so many times but thankfully his resilience has helped him weather the storm.

In all of this hubbub Bjorn has mobilised all his resources, contacts and galloped on his situation to set up a residential home totally dedicated to people with ALS, a condition previously unknown to most.  He was also responsible to place ALS on the national agenda.  Whilst the ‘Dar Bjorn’ Qormi home is somewhat a constructive initiative, it is still in my opinion too populated.  Having 13 residents and a high intensity in staff-resident ratio means that the place is crowded. 

But my biggest impasse is with the rationale of his latest project he is calling, ‘newer (can’t understand the ‘newer’ bit) and bigger’.   If the timesofmalta.com report is anything to go by, it states that; ‘The Żebbuġ home, over eight floors, will create a boutique hotel and hospital environment for up to 50 patients.’  (Saturday, October 20, 2018). 

Well this is indeed disquieting.

Bjorn seems to be going against the vein of the UN Convention on the Rights of Persons with Disabilities and the Optional Protocol which Malta signed in March 2007, and which were ratified in October 2012.  Sorry, but herding people in an eight storey building is not something the UN CRPD is too excited about and neither am I.  Article 19 declares that; ‘States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community...’ (Convention on the Rights of Persons with Disabilities (CRPD - Article 19). 

Whilst I am pretty sure his heart is in the right place, I feel that Bjorn is getting it wrong here – he is completely off beam.  We’ve had enough institutionalisation of disabled people in Malta and have worked tirelessly to dismantle this model and here it goes again.  On the one hand we have Dar tal-Provvidenza known to be the biggest institution in Malta and yet it is doing all it can to put down the numbers and slowly shift people to community homes and on the other hand we have Bjorn proposing amassing people in one complex, what an oxymoron. 

Maybe Bjorn is not even aware, because he was not involved in the disability sector prior to his own illness, but this and previous Governments together with disabled activists and allies, have worked tirelessly to try and have people labelled as ‘social cases’ moved out of our hospitals because of the way institutionalisation robbed them of their dignity, self-respect and self-worth.  Not only that, this current Government has committed itself to small community homes and has also been considering dropping down the numbers in some of its own residences in the process of reforming and refurbishing them. On the other hand, we have Bjorn constructing a project that will plonk 50 individuals (excluding staff) in a block of 8 floors.  Baffling to say the least, imprudent, thoughtless and injudicious if we had to be completely honest.   

Not that I do not value Bjorn’s narrative which is commendable but I think he is now way out of his depth.  If he is not careful, the work he is doing will not leave a legacy of ‘emancipation’ but simply create a Babel of people who’s, intellectual, physical, social and emotional development might be impeded, because that is what institutionalisation does. We have seen how large residential units do more harm than good to its residents after the euphoria of cutting the ribbon and uncovering the placard have settled.  Bjorn needs to think beyond this elated, blissful and rapturous moment and concentrate on liveability, community and inclusion.  True this project is Bjorn’s life project.  Most likely, it gives him fulfilment and purpose, and helps him to be focused and alienated from his own predicament. However, there is no way that people living in a home that accommodates 50 people can be a good place; ‘So Bjorn, please re-think your project!’  

I am sorry to say but Bjorn’s enthusiasm has overtaken a reasoned approach to his venture.  This sense of doing what ‘he’ believes is good is obscuring the fact that there are so many other important stages that need to be taken care of. 

Now it would be even more ridiculous if the Government instead of discouraging him to pursue such an enterprise would feel obliged to hand over money for operational or other costs.  The reasoning shouldn’t be done on people’s awe of this man.  We need to put the money where our mouth is.  It would really go against the grain of what the Government’s policy on residential services is about if it invests money in such a project:

 

‘In the meantime the Government has also embarked [on] an extensive project entitled Fair Society for All to set up small residences in the community to cater for the great demand. By the end of this year three new small residences are targeted to be available.’

(Implementation of the Convention on the Rights of Persons with Disabilities - Initial reports submitted by States parties under article 35 - of the Convention Malta, 2014)

 

In other words, I am a strong believer that the Government shouldn’t be involved in such a project. I would recommend that we stop the Xarabankesque way of doing social policy with these tear jerking campaigns that are problematic in themselves and topped up by the occasional call, hug and award presented by politicians.  Hero worshiping galore!

It is true that we need people like Bjorn to be an inspiration but following that he needs to leave it to the experts, the social policy architects to decide how services should be delivered.  If we are going to have a social policy pressured by a television programme and supplemented by adulation, we might as well pack up and leave it all in the hands of the fund raisers. 

The minimum Bjorn needs to do at this point is to be forthcoming and before embarking on this mammoth project do the following:

 

(1)    Consult with the Commission for the Rights of Persons with Disability;

(2)    Speak with disabled people and allies in the field;

(3)    Make reference to the UN Convention on the Rights of Persons with Disabilities (CRPD);

(4)    Refer to legislation and policy;

(5)    Discuss with policy makers;

(6)    Seek refuge in the expertise and proficiency of the Parliamentary Secretariat for the Rights of Persons with Disability and Active Aging. 

 

If this doesn’t happen and Bjorn will plod on alas, my respect towards this gentleman is seriously dented.  Motivational speaking is one thing.  Doing the right thing goes beyond the ecstatic gallant moments and is a different issue altogether.