Dreams and Commitments

“We have critical situations here. This is a one involving four cousins in Loulé. The matriarch was the grandmother, who died recently, leaving the family completely unprotected. Right now, they stay in our support home Monday to Friday, and then they return to their own home for the weekend. But it’s always a risk because their parents themselves are mentally deficient, and very poor”, Eliane Cruz, 48, president of A.A.P.A.C.D.M. tells us.

“We have one young completely dependent lady in her 40s. Her mother is about to turn 80 and is terrified of dying before her daughter, as she knows that once she dies, her daughter will be totally on her own”.

“We have another boy in Loulé. He was born normal but contracted a virulent form of encephalitis and spent six months in a coma. The episode resulted in serious mental and physical handicap. He has to wear nappies and needs help to eat. His mother has four other children, and has to work in order to support the family”.

These are just some of the many cases that this institution founded in 1968 has to deal with, medium term. “What we really need is a residential home”.

“With the advances that have been made in medical science, handicapped people now live a lot longer than they used to. In the old days, someone with Down’s Syndrome, for example, had a relatively short life expectancy, on average”.

This new “longevity”, as well as bringing the hope of life, carries with it other social problems.

After school age, many handicapped young people haven’t the intellectual capacities to further their education. Nor are they equipped to enter the job market.

The only outlet for them is to attend the so-called “Centros de Actividades Ocupacionais” (occupational therapy centres, or CAOs).

To give an idea, CAOs existent in the borough of Faro cater for 1.94 per cent of the needs of the handicapped population. In other words, many young people remain cloistered in their family homes, simply waiting for a place.

Conscious of this huge shortfall, the “Casa do Compromisso” project also involves the creation of a new CAO, catering for 30 young people.

The good news is that the project will be financed to the tune of 75 per cent by public funds, through the “Programa Operacional do Potencial Humano” (POPH). The bad news is this only relates to a project costing 1.2 million euros. “And all the experts we’ve consulted so far have told us that the project will cost at least 1.5 million euros”, Eliane Cruz, a pediatrician at Faro Hospital connected to this cause since 1991, explains. “That means that on top of the 25 per cent that we’d have to come up with, we already have to find an extra 300.000 euros!”

Recently, Macário Correia, Mayor of Faro, guaranteed that he’d make available 15 of the 25 per cent not covered by state finance, so that the project could go ahead.

“The rest, we’ll have to find ourselves, by holding fund-raising events”, Cruz elaborates. “From the moment we sign the Terms of Responsibility – our contract, in other words, with POPH – we’ll have six months to get started on the project, and 36-months to finish building works. That’s with equipment and everything. It’s a huge amount of stress, but we’re all up for it!” she smiles.

The next fund-raising event is scheduled for 16th July at Faro’s Teatro das Figuras, from 4pm. Participating will be various young people who benefit from the support of the association, and a number of invited artists.

Ready to move into, but no money to pay...

Another dream on its way off the drawing board is the residential home of APPC, the Portuguese association for cerebral palsy.

Construction began at the beginning of the year at Montenegro, on the outskirts of Faro.

When it’s ready, it will offer 25 permanent places to handicapped youngsters, along with an innovative new concept – a first for the south of the country: a unit where five young people can live autonomously, with the back-up and support of care specialists.

In all, the home will cost around one million euros.

It developed from the need to create a home, a “safe harbour” “where young people can stay once their direct family has passed on”.

These words come from Graciete Campos, APPC director for the last 28 years. The project has been financed to the tune of 360.000 euros, by the PARES II programme – with another 207.000 euros coming from the local authority. The rest is up to APPC to raise.

“We’ve organized various fund-raising events, but we still haven’t got all the money. We’ve also thought of making a panel with 108 tiles to put over the entrance, with the name of whoever wants to buy a tile on them”.

“We’ve advertised the idea a lot, but there’s been very little response. So far, we’ve only sold 18 tiles, to parents and family members – most of them people with very little money themselves”, she tells.

“I think in general all our lifestyles have improved, and businesses are so much more aware of needs like ours – but still the signs of wealth that one sees in the Algarve haven’t really translated into “solidarity”, the spirit of giving to those who need it more than we do. There’s still a lot of work to do to change mentalities”, she considers. And in the meantime, “lots of people have been in touch with us, anxious for a place. We haven’t began the enrollment process yet, and we’re already getting calls from other regions!”

In the future home, priority will be given to “dramatic cases of young people who are already alone – whose parents have already died. We have a youngster at the moment that has finished school, and was going to university. His mother has since died, and he’s now being cared for by a neighbour, who has been truly amazing”.

Another extreme case is that of an 11-year-old boy whose parents and siblings died in a car crash. He was thrown from the vehicle during the collision – surviving, but now a victim of the consequences. He’s already spent six years in an institution that currently cares for 285 people, from the ages of 0 to 42 years.

“I would hope that we can open our home by December – but I really don’t know if this will be possible,” Graciete Campos continues.

Handicapped, or champions?

But it’s not just sad stories that live within this institution. Since 1992, A.A.P.A.C.D.M. has run professional courses – frequented by young people with “cognitive impairment”, from the ages of 15 upwards. For the moment, these courses are centred on the hotel/ catering industries and in gardening. “Before the crisis, we managed to find work placements for around 75 per cent the young people who took our courses”.

“Many of them, when they get to their new jobs, leave their employers open-mouthed! They’re not lazy. They don’t drag their heels; they get down to their jobs and work with great tenacity. There are those who take them in as charity, really, and then see that they can be really productive!”

And the interest this institution has taken over sport for the disabled, at top competitive level, has brought other benefits to their handicapped charges. José Gabriel, 25, is now a national swimming champion. He just hasn’t turned “Para Olympic” because “sadly, the Olympic committee hasn’t opened the competition up to people with mental and aural handicaps”, explained Eliane Cruz.

“He’s a young man with Down’s Syndrome. Right now, he works in the bakery at Jumbo supermarket – just like any other employee. His employers let him train every day, and make sure he can participate in competitions”.

With such examples, it’s easy to ask – why is it that we don’t see handicapped people in the streets?

“Good question! I think the majority of the Portuguese population are uncomfortable – I wouldn’t go so far as saying they’re embarrassed by handicaps, but definitely, they’re put off. You see foreigners going out, going on holiday with their handicapped children – but people here seem to think they’d be looked on with pity”.

But isn’t having a handicap cause for pity? “Not at all. I like to say that we’re all different. Even twins who share genetically so much are different. For this reason, the fact of being different shouldn’t be a problem. It should be the norm, a common part of life”.

“The problem is that a handicapped person is always looked upon as incapable. He doesn’t speak, he can’t do something… he’s not this, he’s not that. Here, we try to change this attitude. We concentrate one what he/she CAN do, what he/she IS capable of achieving. We try to promote the capacities that each person possesses”.