Rio Paralympics: protecting the prospects of Brazil’s ‘Zika babies’

10 September 2016

by Barney Cullum

The president of ANDEF in a wheelchairLeonard Cheshire Disability is in Rio de Janeiro this month. Brazil is not just providing the backdrop to the Paralympic Games this year, it has also – through the Zika virus and microcephaly – become host to the main global disability concern of 2016.

The latter is rarely described in those terms. The World Health Organisation says we all face a global health crisis. The media has at times gone further, alarmed and alarmist in its portrayal of Brazil’s ‘Zika babies’.

While lots has been sensibly said about stopping the spread, little noise has been made about protecting the prospects of children born with the severe neurological conditions that characterise microcephaly.

Charities helping those with Zika

Representing Leonard Cheshire, on Friday I visited one of the Rio-based institutions providing children born with microcephaly with care and physiotherapy.

Pestalozzi, in the northern suburbs of Rio, currently provides support to nine children with the condition. Five of these, those with the most severe symptoms, have microcephaly known to be caused by the mosquito virus.

I asked about the children. One member of staff used his finger and thumb to make a shape an inch wide to illustrate the head size of new-borns that have been brought to them this year.

The institution is funded by the government and only as of three months ago has money been provided for sessions to support both the children and their families.

20 Brazilian reals per session (approximately £5), is being made available to Pestalozzi to provide individual care/therapy to low-income families for free.

The subsidies, in theory, cover the cost of equipment and therapists. The severity of the disabilities has not been witnessed in Pestalozzi’s history and Vinicius Martins, the organisation’s spokesperson, tells me the grants ‘are not enough’ to cover what is required. The institution benefits from philanthropy, which helps.

And a relative of a boy with learning disabilities — Pestalozzi caters for hundreds of children with diverse neurological conditions in addition to those with microcephaly — tells me the care provided remains of a very high level.

Pestalozzi, however, say they will not be able to offer personal support to all the families who need it going forward.

Sport and disability

ANDEF's swimming poolThe unprecedented and complex demands brought about by Zika have coincided with a national recession. Martins feels the Paralympics, which are now being embraced by Brazil, could lead to disability support being prioritised again.

If it does, Pestalozzi may not be the only organisation in the sector to receive the new investment urgently needed. ANDEF is another. Formed in 1988, the charity has a different model to Pestalozzi, with an emphasis placed on delivering access to sport.

I visited to speak to the charity’s president, Guilherme Ramalho. We met just before the opening of a creative meet and greet event he’d arranged involving the Brazil and USA wheelchair basketball teams.

The facilities I saw included impressive sports courts and two 50-metre swimming pools, testimony to the generosity of the donors.

Formed almost 30 years ago, young ‘graduates‘ of ANDEF’s sporting initiatives regularly go on to enjoy Paralympic careers. The Niteroi-based organistion also have a proud track-record in creating employment opportunities for disabled Cariocas (locals of Rio).

Sadly and ironically however, Ramalho told me ANDEF have also been impacted by the recession. ‘Hundreds of disabled people who had gained employment through ANDEF work placement programmes — or were employed by ANDEF directly — have already lost their jobs.’

Economically and socially, there is much to indicate Brazil is at a crossroads in 2016. Time will tell whether the Paralympics will, as both Pestalozzi and ANDEF hope, lead to greater compassion and means to empower disabled people in Brazil.

Leonard Cheshire will keep in close contact with Pestalozzi and ANDEF to see which path Brazil takes.

Barney Cullum is an external communications officer for Leonard Cheshire Disability and a freelance journalist.

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