Former KNPD chairman Joe Camilleri believes the recently proposed hub for people with disability will create an artificial community, rather than promote community living.
The hub, announced in the budget, has caused quite a stir, with Parliamentary Secretary for People with Disability Justyne Caruana championing the idea and Mr Camilleri taking a leading role in opposition.
In an interview with The Malta Independent on Sunday, Mr Camilleri explained the reasons behind his position.
He argued that people can function well within such "artificial environments", but when they ventured outside "they're lost".
"Sweden has had these villages for disabled people for decades. They built many of them which were out of town centres or between two towns, and while you're there, every room and street is accessible, every shop is accessible. But once you leave, you can't function. The Swedish mentality used to be - and it has changed now - that they didn't need to change mainstream disabling barriers as disabled people had their own space."
He gave an example of an EU vote in the mid-1990s regarding accessible buses. "When it came to the vote, Sweden was one of the countries to vote against. Over the years they had provided a very efficient transport system for disabled people, separate from their public transport system. They had also invested heavily in non-accessible buses, and it was going to cost them a lot more to change those buses than to let disabled people keep the service already available for them. So I, for example, would have had to call up for the special bus to see what time it would stop by. The word 'special' is the word used by non-disabled people to make you feel special, while also ringing all the alarm bells. 'Special' means more expensive, more trouble, it means 'not like me'. This is what will happen here. If you house people there, and they are happy living in an enclosed atmosphere, they would say how good it is and would want another one built."
Mr Camilleri compared the situation to that of Marie Antoinette and the Hameau de la Reine. "Marie Antoinette was completely cut off from the French people. Going back to nature was very popular in her day and thus so was the idea that one would find purity in the noble savage, that nature was untouched by sin, unlike cities. She wanted to live like a country girl and so she had an enclave constructed where she, and her ladies-in-waiting, could dress up in fancy dress, pretend to garden and live a village life. But everything was all prepared for them: the sheep were washed before they were shown.
"This is what will happen here. Everything will be just right for you, but you're not 'out there', you're not with the people. You're not part of the community. Some friends recently made an interesting point: being 'in the community' isn't represented through a building. It's being known by your neighbours. It's the local council, feeling a sense of belonging to the parish, having your children attend youth groups, having friends. My children have friends in Mdina, from school, from all the different communities in which they've taken part. But had we kept them at home, they would have had nobody. Really and truly, you are not empowering them, you are their jailor. The agenda would be set by the staff, by the non-disabled people there to support. And I don't care how many people contradict me on that because that's exactly how it is."
Mr Camilleri spoke of his own past. "In 1982, I was in hospital in the UK for four-and-a-half months. This hospital was a centre that specialised in rheumatoid arthritis in children. I was 30-years-old at the time, but I had contracted it as a child and it had affected the way I developed. While I was there, there were a number of young people aged from 12 to 25, all of whom had contracted the disease very young. The youngest among us, who had been receiving treatment for longer periods, were tall and walked more or less naturally. From behind, you would never be able to tell that they had developed the same condition.
"I spoke to a nurse and told her how wonderful it was that these young people did not have to put up with the difficulties that I would have to put up with for my entire life. She said to me: 'How wrong you are, how much better off you are with your arms the way they are and with your height.' She told me that some of these young people had been living in the hospital for eight to 16 years. They couldn't go back home as they had no friends, their family just went for visits. They had no life back home, their lives were at the facility. She said: "You have a life. When you go back home you've got a job, you're married and you're respected in your community. You're constantly talking of wanting to go back - and, more than anything, you have the skills to cope in the community. We consider you a difficult patient because you have your own mind'."
How much of a choice?
This newspaper then indicated that residing in the hub would be a choice and would not be forced on anyone with a disability. In response, Mr Camilleri questioned how much of a choice that would actually be. "How much of a choice will that be if your family can no longer look after you? Where will you go - St Vincent de Paul, Dar tal-Providenza? Where are you going to go, once you have no choice? You're assuming I would make that choice and say I want to live there instead of here, but how many would do that?
"Secondly, what criteria will be used to decide who will be chosen to live there? There will be a selection committee. Who will get to say who occupies a very expensive resource like a flat and who doesn't? With some of the choices made recently one begins to wonder, what the underlying criteria are for such a choice: friends, friends of friends?"
Mr Camilleri explained that he is not completely against the idea of a hub, but would prefer one in a different form. "In Malta the 'hub' concept is being visualised as a physical entity which, in real terms, translates into the centralisation of services, a concept that runs counter to the idea of mainstreaming disability issues. If a disabled person has a housing-related problem, or query, enquiries should be addressed to the Housing Authority and the same applies whether it's health, employment, rehabilitation, education and so on.
"I agree that disabled people and their families are often 'given the run-around' when applying for benefits, goods and services, but that means two things: a) we need to improve the efficiency of our service across the board and, b) disabled people and their families need regional information hubs to help them navigate the labyrinth of services and opportunities available to them. Information hubs must function online as well as face-to-face. Many young disabled people are quite able to access information online if it is readily available, in the appropriate format and regularly updated. For other, trained individuals should be available to inform, advice and support as and when necessary. No other minority in Malta has its service centralised into its own unique area. I have no doubt that to do so would create a form of mental segregation, further emphasising negative labelling of the 'them and us' variety".
Mr Camilleri emphasised the fact that the stigma surrounding people with disability still exists. "The difference is that, in the past, they spoke about it to me openly, and would say things they wouldn't even dream of saying to other people of my age and my background. But today, because of political correctness, they won't say such things unless they are in small groups with like-minded people.
Certain employers, for example, will ridicule the idea of employing a disabled person, but they wouldn't do so openly. Put them on TV and they would all say they are ready to employ disabled people and that nothing is stopping them from applying to do so. But then, when you do apply, they would say the position is filled and tell you that, when a vacancy becomes available, they will let you know. Forty years later you're still waiting for that vacancy."
He described a rather shocking telephone conversation he had received when he was still working for the KNPD. "I received a call from an employer at around Christmas time, and he asked me to recommend a disabled person who they could employ to work on the front desk. He wanted a female disabled person, with 'a nice disability'. In other words, he didn't want someone with the facial features of Down's syndrome, or someone who had had an arm amputated. He thought it ok to say such things because he was saying it over the phone. This mentality still exists. If you concentrate a large number of people with different impairments in one area for a long period of time, offering different activities, people will not go there and children will be afraid."
Referring to the jobs and managerial positions that would be available to people with disability in the shops and restaurants in the hub, he said it was still all "pie in the sky".
"Show me where you are going to find all these disabled people to do these jobs, especially managerial jobs. We don't find disabled people who can take on higher level management positions because they haven't been trained and haven't had the opportunity to be trained. This doesn't happen overnight. When you're dealing with employment at a certain level, managing funds and resources - especially catering resources - it's complicated.
"I've just been involved in trying to set up a social catering venture with non-disabled people and we had to leave it because the complications were so great. When we brought in professional caterers who ran restaurants for 40 years to explain what it entailed, we couldn't cope. And I wasn't going to be doing anything myself except advising, so it was non-disabled people who were going to manage it. The actual day-to-day decisions are such that, unless you've started off in the business and have been trained and mentored by someone really good, you aren't going to make it. Running a shop also includes very complex decisions, it's not just running a counter."
Assertions made
Turning to assertions made by Parliamentary Secretary for People with Disability Justyne Caruana that he was part of the Committee that proposed the construction of such a hub in an isolated part of Siggiewi, he said: "I was against it. Where is this report, who was there, when did it happen?
He described the chronology of events. "This residential services business began back in 2014, when I was still chairman of the Commission. I attended a preliminary meeting and a working committee was set up. The committee then met a couple of times. The idea was to try and persuade people to change what was being proposed to something more acceptable, but we were far away.
The then Parliamentary Secretary Franco Mercieca was also against the idea of some horrendous number of residential units which Phillip Rizzo had recommended. He told me to keep an eye on it and try to come up with something that is acceptable for people with disability. In early March, it became clear that the Parliamentary Secretary was on the way out, and I was on my way out as I was going to retire. There was no point in me getting heavily involved as my successor would eventually take over.
"In fact, by February, I was already leaving most things in the hands of my successor, and I would be there to advise and help him should he need it. At that time, things were still very much up in the air. Just before I retired - and I retired on 29 March - the Parliamentary Secretary asked me to stay on in an advisory role as he did not want to lose my experience. I was willing but not on a full-time basis and would mostly have to work over the phone, Skype and computer, as my support network was now gone, having left the Commission. I wouldn't have anyone who would be able to help me out of the car into a wheelchair, for example. In fact, I don't often go out now, unless my wife is with me. He agreed and I signed the agreement."
"During the first month my services were used: I received phone calls, emails, etc. The following month was very slow and I just claimed the amount of hours I had worked. Then, between July and October, hardly any contact was made with me at all. I'm not someone who is going to sit back and be paid for doing nothing. I'm not going to create false invoices just to sit at home on Facebook receiving an income. My integrity would not allow it, even for that paltry amount. It became clear that they didn't need my advice. I worked out the amount I was owed, sent in an invoice for the amount worked and asked them to end the contract. I wanted to be free to be able to speak, without having to be careful because of some official post."
As for the Committee in question, he said he doesn't remember whether he had formally resigned from it or not as he sent a general resignation from everything in March as he was obliged to do, he said. "Remember, I retired from the KNPD around that time and rather than leaving everything hanging and dealing with circumstances as they arose, I tried to make a list of the committees I was on and sent one mail saying I was resigning and stating that my place would be taken over by the new KNPD chairman".
"I probably remained as a sort of advisor on the committee as the new chairman would have been the new representative - I'm not sure. However, if I was kept on, it was just on paper. But you have to understand, you can be listed on paper and not attend. I had little or nothing to do with the committee except in the beginning, when I said the proposal for this kind of hub was wrong, and the concept of shops and day-centres in one place was wrong. My first reaction was literally that, if this went through, I would oppose it, as it was a step in the wrong direction. Unfortunately, I wasn't taking formal minutes and that's the curse of what's going on right now: meetings with no minutes and then it's a case of A's word against B." Mr Camilleri said that he had made his feelings on the subject known at the time.
During the interview, he made a rather interesting proposal. The government has recently announced that families who employ a live-in carer for their elderly relatives will see half the minimum wage paid for by the government to that carer. The former KNPD chairman believes that this particular incentive would make a radically positive difference in the lives of people with disability, were it extended to them.
"I have friends who are far more physically disabled than I am. They have two assistants and they live a very independent life and attend many gatherings, such as when an international singer arrives on the island to give a concert".
"With the same degree of help, support and training as is to be part-funded for care of the elderly, far more disabled people could enjoy a much higher quality of life."