Sunday, 25 November 2012

The Teletón: Image and reality of disability rights in Chile

(Originally published by the Santiago Times)

Sitting in a TV studio, nine-year-old Catalina is so happy she can barely speak through her hysterical sobs. A video documenting her six month rehabilitative transformation from a wheelchair-bound little girl to a buoyant, able-bodied child has just been broadcast to millions of Chilean viewers.
 
“I just wanted the chance to have an operation,” she weeps, “I never imagined my rehabilitation would be so successful!”

Interviewing her live on stage, the flamboyant presenter turns to the camera and sends out a final message before the commercial break: “Let there be no doubt, we are the world champions of solidarity.”

Bar general election years, Chile has united around the common cause of raising money for disabled children annually since 1978. The phenomenon, known as  the “Teletón,” occurs in the form of a 27-hour fundraising show broadcast live on every major Chilean TV station, and sponsored by a number of major business partners. Money donated by corporations and individual members of the public helps to finance 11 Teletón foundations scattered around the country which offer rehabilitation services to children and young people under the age of 25 with specific disabilities.

Presented by host and founder Mario Kreutzberger - better known by his stage name Don Francisco - popular musicians perform live music, comedians leave audience members in stitches and young children relay emotive accounts of the incredible standard of care they received as a consequence of the money raised the previous year.

To first approximation, it may seem odd that a charity event with such seemingly noble ends could be the subject of vehement criticism. Yet a number of noted disability activists argue that the show deflects attention away from the government’s lack of investment in services for Chile’s disabled, and allows businesses to profit from the publicity generated by the campaign.

Alejandro Hernández, president of Chile’s leading disability NGO, the National Foundation for the Disabled (FND), believes the Teletón is disturbingly symbolic of the state of disability rights in the country.

“If children are required to cry hysterically on TV just so they can have access to something as basic as a wheelchair, what hope is there for the disabled in Chile?” he asks.

Despite being one of South America’s strongest nations economically, Hernández insists the Chilean government has consistently failed to provide adequate disability services, and accuses the Teletón of successfully masking this fact by delivering an annual message of false hope.

“Unfortunately the Teletón gives off a smoke screen which prevents the majority of Chileans from understanding the reality of the situation,” he says. “For example, people remain unaware that 97 percent of disabled people have never had access to comprehensive rehabilitation, believing instead that this annual campaign covers everything - which is very far from the truth.”

According to the World Health Organization (WHO), around 15 percent of the world’s population live with some form of disability. The figure for Chile stands at 20 percent, owing in part to a high rate of mining and fishing accidents. In 2008, Chile ratified the U.N. Convention on the Rights of Persons with Disabilities stating that, under international law, the government must “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.”

But Figures from FND paint a bleak picture for disabled people in Chile. The NGO claims only 1 percent of disabled Chilean adults have a work contract and a startling 42 percent of disabled children fail to complete basic their basic education.

Hernández contrasts Chile’s situation with that of its progressive neighbor, Argentina, where there is no Teletón and the disabled rely entirely on the government for their rehabilitation centers. Unlike Chile, Argentina has its own domestic laws covering those with disabilities, in addition to ratifying the U.N. convention. The Unique Disability Certificate Act guarantees disabled people certificates from the health ministry, which they can use to obtain a range of health services. Those suffering from disabilities are also given passes which grant them unlimited access to free transport.

“In Argentina people are more aware of their rights, that’s why they don’t have a Teletón,” argues Hernández, “It’s time that the rehabilitation centers of the Teletón were passed into the hands of the state so the Chilean government can take charge of this issue once and for all.”

On the streets of Santiago, the scale of the problem is all too visible. Mauricio Muñoz, 29, is one of an estimated 99 percent of disabled adults without a work contract. Blind from birth, he earns money selling goods on a street market stall and has set up his own internet radio station run by blind people for blind people. Muñoz has never qualified for Teletón assistance (which offers no services for the visually impaired) and reiterates Hernández’s assertion that government assistance for people like him is minimal.

“The government hardly spends anything on disabilities,” he says. “There are other countries where the situation is better - in Argentina there’s loads of support but here we lack government support, and the institutions aren’t doing their job properly.”

His feelings towards the Teletón are mixed. “It’s a great way of getting the people together behind a great cause, but much more is needed. It should help people with other types of disabilities, there should be a Teletón for all disabilities,” he argues.

Less nuanced are the views of 49-year-old Claudio Gonzalez, who sits in a wheelchair selling watches on the same street: “They [the Teletón’s sponsors] use us to earn money, they get publicity from the show. They want us to make the public feel sorry for us so they can profit!”, he says.

Perhaps surprisingly, Executive Director of the Teletón Ximena Casajeros, does not altogether dismiss the criticisms aimed at her show. She claims the Teletón’s founders naively believed they would be able to provide a solution to Chile’s disability problems within five years of running the event, a prediction she now describes as “a massive error.”

Asked whether she thinks Chile should be following the Argentine model of public investment in disability services, Casajeros insists the two countries are incomparable.

“Argentina is a country which has different laws to ours and has free healthcare for everyone - which our country does not,” she says. “If we had a government which had laws and social benefits, a society in which the disabled were integrated and not excluded we’d be having a different conversation.”

Nevertheless, Casajeros remains convinced her show has been responsible for spreading awareness of disability and forcing the Chilean government to confront the issue, a point which is reiterated by arguably Chile’s most prominent disabled person, Catalina Parót.

Parót rose to prominence in 2010 when she was appointed national properties minister - the first and only disabled cabinet minister in Chile’s political history. As a child in the 1960s, she remembers feeling socially isolated, forced to endure the stigma of being disabled at a time when society did not regard her as an equal. She watched as her classmates deliberately crossed the street to avoid talking to her, but is grateful to the Teletón for creating a shift in public conscience which, she claims, allowed her to pursue a career in frontline politics.

“I know what it is like to grow up with a disability,” she says. “What Don Francisco has done, beyond any criticism that might exist, is to make people confront their fear of the disabled.”

2010 was also significant for being the year the Chilean government created SENADIS, a public body set up to provide technical and financial assistance for people with disabilities. Funding, however, remains a major problem. In 2011, SENADIS’s budget was around US$22 million, less than half of the US$55.4 million raised by the Teletón in the same year.

Parót admits these figures are unacceptable.

“It’s really important that funding for SENADIS is significantly increased,” she says, “that way communities, private organizations and charities which are dedicated to helping people with disabilities and rehabilitation can be given far greater resources.”

Outside her office in central Santiago, red and white Teletón posters with pictures of smiling children flap around in the warm spring breeze. Volunteers wearing Teletón t-shirts persistently hassle passer by, shaking colorful buckets and handing out leaflets. The country is gearing up towards Nov. 30, when close to 17 million people will tune in to witness a record amount of money raised for disabled children like 9-year-old Catalina. This year, however, there is even more at stake than usual. Next year’s general election means there won’t be another Teletón until 2014, so the funds will have to last twice as long.

But while the hype preceding the event is inescapable, not everyone feels excited. Although Teletón money greatly surpasses that of government expenditure, only 7 percent of Chile’s disabled population actually benefits from it. This discrepancy is reflected as much in the criticisms of activists like Hernández as in the despondent attitudes displayed by many disabled Chileans.

From his market stall, an exhausted Mauricio Muñoz is ready to pack up for the day. As he does so he mutters something under his breath, inadvertently capturing the mood among many of his disabled peers.

“The Teleton runs for less than two days,” he laments, “but the disability that we are burdened with lasts the whole year round.”

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