For the Portuguese MP Jorge Falcato, the key to advancing independent living for people with disabilities is increasing accessibility.

Jorge Falcato was left paraplegic after a police officer shot him during a protest in 1978. He struggles with his disability everyday and the stigma that it carries. But as a Member of Parliament, Falcato is also struggling to get the government to do more to help the country’s disabled population gain equal rights and opportunities.

“There is a mix of poor education, prejudice and negative attitudes against people with disabilities,’’ he tells Equal Times. When it comes to the labour market, for example, “normally having a disability is associated with a lack of efficiency, with bad quality of work and low profitability, even if that doesn’t correspond to reality,” he says.

Falcato is amongst the estimated one million people living with disabilities in Portugal, according to the last census in 2011. As there is no national personal assistance scheme, many people are dependent on their families for care or else have to be institutionalised.

To change that, the Portuguese government has been debating a pilot project for independent living, which is expected to run between 2017 and 2020, providing personal assistance up to 300 people with disabilities.

According to a document produced during the pilot’s public consultation, those selected must be over the age of 18 and at least 60 per cent disabled. Those who qualify will receive up to 40 hours of personal assistance a week to help with daily activities such as personal hygiene, food and transport, as agreed by the care recipient and the Centre of Support for Independent Living (CAVI).

The UN Convention on the Rights of Persons with Disabilities (CRPD) says states should ensure that people with disabilities are able to “choose their place of residence, where and with whom they live on an equal basis with others, and are not obliged to live in a particular living arrangement.” But up to now, Portugal’s disabled population has been deprived of this basic right to independent living.

Falcato says he is concerned that 40 hours of assistance a week is not enough for those in need of constant care, and he doesn’t see why the minimum age for the program shouldn’t be 16. Disabled people should be able to choose their own personal assistant, pay them directly, and define their own individual care plan, he also says.

Portugal’s Minister of Labour, Solidarity and Social Security, Ana Sofia Antunes, tells Equal Times that while she wishes the pilot project could be more extensive, it should be considered as a first step.

“It will be important for deinstitutionalisation,” she says. “People should have the right to choose [where and how they live].”

Paula Pinto, director of the Disability and Human Rights Observatory (ODDH) at the University of Lisbon, says that while she recognises the project as a first step forward, it does not yet embody the true values of independent living, which the European Network on Independent Living describes as a “combination of various environmental and individual factors that allow disabled people to have control over their own lives.”

“In my opinion, the criteria should include anyone who needs the help of a third party. I don’t see the need to translate disabilities into statistics, into a medical model rather than a human rights model,” she adds.

Yearning for independence

Eduardo Jorge’s dream is a case in point. He wants to live on a farm, surrounded by nature, and for someone to provide him with personal assistance. At 54, he is tetraplegic following a car accident 10 years ago. After a lengthy rehabilitation process, and on being sent back home, he was left feeling abandoned.

“It was terrible,” he recalls. “I would wet my bed and the mattress would always be damp because I had no idea that I had the right to have a washable one.”

Ten years later Jorge discovered the internet, which gave him the opportunity to read up about his rights. He eventually became a well-known activist, and in 2014 travelled for three days on his wheelchair – 180 kilometres from Abrantes to Lisbon – to raise awareness of the multiple issues people with disabilities face in Portugal.

A nursing home, touched by his story, offered Jorge a place to stay, and a job as a social worker.

“It is the best thing that has happened to me. I love my job and I am so grateful to this institution,” he tells Equal Times. However, things are far from perfect.

“This isn’t the life I want to live. I am now lying in bed, and soon someone is going to come over and dress me and feed me when they want to. It is very upsetting.”

Diana Santos, 32, a psychologist and the treasurer of Portugal’s Centre for Independent Living, was left tetraplegic at six months old due to a severe adverse reaction following a vaccine. Until recently it was her mother who helped to get her out of bed, get washed and get dressed.

But Santos is now participating in a pilot project organised by Lisbon City Council, where she benefits from seven hours of personal assistance a day at her new flat.

Santos says she will have to come up with new “strategies” now that she is alone during the night, like using incontinence pads in case she has an emergency. And while the pilot project gives her a taste of freedom, she says it’s not ideal.

For Falcato, one of the main keys to advancing independent living for disabled people in Portugal is increasing accessibility.

“The social model of disability characterises disability as a social condition. It’s not that I don’t like going to the cinema, it’s that I can’t go because there are steps. It is the way the city conditions me that makes me disabled,” he says.

While a law was introduced in 1997 forcing the country to adapt public buildings over a 10-year period, it had to be extended for another 10 years due to non-compliance. The deadline was 8 February 2017, and yet the inaccessibility of public spaces in Portugal still remains a major challenge.

Fighting stigma and austerity

The UN Committee on the Rights of Persons with Disabilities praised Portugal in its report released in 2016 for making progress through the adoption of laws, plans and programs. It cited, for instance, the fact that 98 per cent of students with disabilities attended regular schools in 2015.

Portugal also has professional training courses for people with disabilities and in 2015 it introduced a programme to help integrate them through employment, compensating both the worker and the employer for adjustments in the workplace.

However, the report did raise concerns that disability in Portugal was assessed “medically.” This refers to a model that views disability as a problem belonging to an individual, as opposed to a societal issue that affects the abled bodied and people with disabilities alike.

It called on the government to “urgently review austerity measures” and “provide support for living independently and for residential homes respectful of the rights of persons with disabilities.’’

Additionally, people with disabilities who work don’t receive any benefits in Portugal, even though the economic burden of having a disability ranges between €5100 (US$5,450) and €26,304 (US$26,120) each year, according to a study carried out by Portugal’s University of Coimbra.

Welfare benefits for people with disabilities have also recently been in public consultation, with the objective being to combat poverty and incentivise labour participation and autonomy.

Proposals are suggesting that people with over 80 per cent disability should receive €260 (US$278) per month, regardless of their salary level.

However, it is worth noting that unemployment rates amongst people with disabilities in Portugal are strikingly high. Only 44 per cent are in employment, and this figure does not include the severely disabled, according to a report by Eurostat.

While disabled people are often shunned and marginalised, through choreographer Ana Rita Barata’s theatre work, they take the centre stage and get the same roles as able-bodied performers.

Her company Vo’Arte, now in its 10th year, promotes the idea that inclusion should be a given.

“When I am working with a dancer, I don’t care whether the person has arms or legs or not,’’ Barata tells Equal Times. “I care about what the person is sharing with me.”