Ensuring opportunities for children with disabilities in Bolivia

BOLIVIA: End of year reporting can have its perks. It means I get to travel to distant parts of Bolivia, where I would never otherwise go – to bring to life UNICEF’s hard work, show our donors the human side of our programming, and find ways to demonstrate both our impact and the urgent need for continued support.

My trip to Oruro was one to remember. Delayed for a week by heavy rains and cancelled flights, I set off as the sun was beginning to rise over La Paz. Together with my trusty driver and film crew, we head up towards the Altiplano (high Andean plateau) and onwards to Oruro.

The objectives for the day are clear. The Department of Oruro (one of the nine regions of the country) is leading the country in terms of support and services for children with disabilities. I’m told a model has been developed that should be replicated and scaled up in the rest of the county, and I want to understand and document this experience.

First stop: the municipality of Caracolla. A very small but well-equipped rehabilitation centre was opened here in 2014, with dedicated staff. I meet Valentina and her daughter Jazmin. After suffering from meningitis when she was 4 months old, Jazmin now has severe epilepsy and cerebral palsy. The staff tell me that Valentina and Jazmin are among the most regular users of the centre.

Most parents lack the financial means to come, live in remote villages far away from the centre, or simply are not willing to dedicate their time to their children who have disabilities – maybe because they do not understand that their children can benefit from the support. Watching Valentina do her physio exercises with Jazmin, it’s clear that there’s a long road ahead, but Valentina’s early commitment is hopefully going to pay off.

I’m curious whether children with disabilities and their families suffer much discrimination and stigma here. Valentina takes a moment to think. “No,” she says. Then, almost as an afterthought, “but sometimes other women do ask me why I take care of her like this, ‘Wouldn’t it be better if she were dead?’” I express my shock to the doctor afterwards, but he confirms it’s not unusual for a family to try and kill their disabled child in Caracollo. It’s going to be a tough day, I think to myself.

We head on into the city of Oruro, where a dedicated worker from the municipal health network tells me about a family she wants me to meet. Along with a social worker, we head “towards the north,” stopping numerous times to ask locals the way. Long after we leave a tarmacked road, we pull up outside the house.

The backyard is littered with broken toys, and there are lots of children. Three-year-old Isabel is in her eldest sister Alejandra’s arms. Isabel was born with microcephaly and cerebral palsy, but despite the fact that her legs were crossed and she was unable to separate them as a baby, her disabilities were not detected in any of her routine health check-ups until she was 4 months old. I am fast discovering that this is the norm in Bolivia – and because early detection is crucial, huge efforts are being made to build staff capacities here in Oruro.

It soon becomes clear that Alejandra is Isabel’s principal caregiver, and among the family the most affected by her sister’s disability. “She doesn’t feel anything, she doesn’t cry, nothing. She doesn’t speak, and I don’t know why,” Alejandra says.

It’s a Monday afternoon, and I ask 14-year-old Alejandra why she’s not in school. She shrugs, says she needs to work. I get a similar shrug from a younger brother, but he explains that it’s because his father won’t buy the materials for him. The social worker confirms my suspicions: the father regularly comes home drunk, beats his wife and sometimes the children. The mother and children receive no financial support from him, but are too scared to leave or report the situation.

I would fear for any child growing up in a family of such extreme poverty, but when it comes to Isabel, fear doesn’t really cover it. I doubt she will ever receive the appropriate rehabilitation support she needs. Services have hugely improved here, but there is a lot more work to be done – with limited financial resources.

Finally, we head onto Huanuni, a mining town higher up outside Oruro, at around 4,300 metres above sea level. I find 2-year-old Milena with her mother Andrea in the physiotherapy room in the rehabilitation wing of the hospital.

“’She’s going to die’, they told me, ‘people with Down’s syndrome die’. ‘Let’s call her Milena of the Sky’, her father said, ‘because she will go to the sky, and from there she will be looking at us’,” Andrea recalls, her eyes filling up with tears.

But two years later, Milena has a chance in life, and it’s all thanks to this rehabilitation centre. Like many of the centre’s users, Andrea heard about the support it offers through the radio. Since Milena was 4 months old, she has been coming daily, often waiting up to an hour for transport to bring her here. After a risky but life-changing heart operation earlier this year, Milena’s prospects are a lot brighter. The centre provides holistic support; there is even a psychologist to support Andrea, as mothers of children with disabilities can easily slip into depression. Still, Milena can still only speak a few words – and the centre is hoping to have the resources to employ a speech therapist soon.

As I write this a few weeks later, I can’t stop thinking how humbled I am. Although it has now succeeded in becoming a lower middle-income country, Bolivia still faces huge development challenges. Its stunning natural diversity is also a huge barrier to ensuring children grow up with the opportunities that I was lucky to have as a child.

Yet the resilience of the children I meet doesn’t waver. Everywhere I go, the hard work, dedication and determination of our partners never falters. But there is still so much more to do. To ensure that children with disabilities have the opportunities and services they are entitled to, UNICEF is currently working hard to strengthen public policies that support a more integrated response throughout the country.

My own challenge is to bring Jazmin’s, Isabel’s and Milena’s stories to a wider audience, conveying their dignity and sparking empathy – so that my readers and viewers can be touched by their lives, in the same way that I have been. It’s time to get back to the office.

By Jessica Dixon is a Resource Mobilization and Reporting Officer with UNICEF Bolivia.

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