ALS activist Bjorn Formosa has taken Andrew Azzopardi to task for his article and blog, published on The Malta Independent printed version and online today.

Formosa, who suffers from the illness and has been raising awareness about the disease and funds to help people like him for years, says that Azzopardi, dean of the faculty for social wellbeing, has got it wrong.  

In his weekly article, Azzopardi wrote that Formosa is going against the vein of the UN Convention on the Rights of Persons with Disabilities which Malta signed in 2007.

Formosa was quick with his reply on Facebook:

“I think you got it all wrong habib! As a first thing you should have gotten your facts right and firstly you should have asked me how many beds there would be! The number of beds you quoted is absolutely wrong. This is poor journalism or blogging at its best Mr. Dean. You're right, you have been in the sector for a very long time but it's not how long you've been but what you've been doing all this time. Just speaking and talking doesn't improve people's lives and by criticizing successful projects like Dar Bjorn, you're just damaging the lives of those who are suffering. You should be a University Professor not a social media hater! Just grow up and try to make people lives better!

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In reply, also on Facebook, Azzopardi sticks to his position, saying that although Bjorn's intentions are correct, the UN convention is being broken.

'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).'

But there was some support to Azzopardi’s column, coming from Oliver Scicluna, Commissioner for the Rights of People with Disability, who defended the dean in another post on Facebook.

“I have great admiration towards Bjorn but I have to agree 100% with Prof. Andrew Azzopardi.

“What seems a solution today, will result negatively in the future. I encourage the Government to keep to his agenda in opening small community homes and enhance community services.

“I can’t state otherwise as my principles should always respect the UNCRPD which is one of my main functions, to monitor such implementation.”

 

Xarabank Presenter Peppi Azzopardi, who has raised funds for ALS and Djar Bjorn on a number of occasions, was asked by The Malta Independent for his comment.

While stressing that he is not read up on the aforementioned convention and is not an expert, he said he based his views on his meetings and experience with the people and families of patients who have ALS. He spoke about what he has seen during his visits at Dar Bjorn, a home that was opened for ALS sufferers, as well as from what he was told during the time he spent speaking with the patients and their families. He said that he saw people change, living better at Dar Bjorn. "Ï saw a strong home environment. The environment there is one of a home.”

He said that people with ALS have severe mobility issues, needing specialised equipment to switch on lights, to operate a computer using their eyes for example. In their homes, he said, they had to depend on their family members to use such apparatus.

Azzopardi explained that the funds Bjorn received were not only to build a home, and stressed that they provide help to persons who want to remain living in their own homes. “He is looking at independence by sending apparatus and physiotherapy to the homes of those who can remain living in their own homes, and those who cannot remain living at home have this home built for them.”

“It is a home which gave independence to people. To understand it you need to go there and speak to the people there. It is a strong home environment.”