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It is mid-afternoon on the central La Paz street, Mariscal Santa Cruz, but there is no traffic. Spread across the street are people wearing nothing but nappies. Behind them, three rows of police have built a wall of riot shields that stretches from one side of the road to the other.

Scrawled on their chests in black marker are the words “Renta mensual 500BS” (monthly benefit 500Bs). These are Bolivia’s disability rights campaigners, and their core demand is a monthly government benefit of 500 bolivianos (about £50). They say this would help people with severe disabilities to live with dignity and independence. In Bolivia, 500Bs per month is enough to rent a flat.

Behind us, a Mini is blaring out a protest song with the words “El pueblo unido jamás será vencido” (The people, united, will never be defeated). Occasionally, it is drowned out by shouts of “Qué queremos? Renta mensual! Cuándo queremos? Ahora!” (What do we want? Monthly benefits! When do we want them? Now!)

Bolivia’s disability rights campaigners have been camped out in La Paz since late April. Just to the north-east of Plaza Murillo, where Bolivia’s legislative assembly is based, they have set up a tent village in the streets. Police have erected high metal fences around the plaza to prevent the protesters from entering.

The campaign stretches back months. In March, disabled activists took to the streets in the central Bolivian city of Cochabamba in objection to the government’s failure to enforce basic equality legislation. To highlight the issue, they suspended themselves in wheelchairs hung from a highway bridge.

One of the activists to hang from the bridge was Rosemary Guarita, who has been heavily involved in the campaign since its inception. Tubercular meningitis left her in a wheelchair in 1992. She was not afraid to suspend herself from the bridge, except when the chain moved. “I was afraid it would come undone,” she says.

When the protests failed to prompt a favourable response from the government, a group of activists marched 380km from Cochabamba to La Paz, a journey of over a month.

In La Paz, regular demonstrations have been organised. The police response has been heavy-handed and involved water cannon and tear gas. “They plastered us with water,” Guarita says. “After we fall out of our wheelchairs, we can’t get back up. But still, they kept shooting us with jets, savagely, vindictively. It was as if they wanted to drown people.”

The finance minister, Luis Arce, said during an April press conference that the government would not grant the benefit, arguing that the country could not afford it. Alfredo Rada, the government’s vice-minister of coordination with social movements, echoed Arce’s comments during an interview with state radio station this month.

Current legislation allows those classed as being severely or very severely disabled to claim 1,000Bs per year in benefits. This is 2.70Bs per day – less than a return bus fare. In addition to regular living costs, people with disabilities often have to pay for essential items for their quality of life such as medicines and wheelchairs.

One of the protesters in nappies was Vladimir Tobias Vedia Flores. Since birth, he has suffered from seizures. He also has venous ulcers in his legs. “An ultrasound of my legs costs 700Bs,” he says. “I can’t afford that because I live in the streets. I can’t even buy medicine.”

Disabled people need a special identification card to claim benefits, and the process for obtaining this is often prohibitively expensive. Requirements such as a neurological examination can cost 500Bs. “Families often don’t know how to deal with the application process,” says Horacio Marengo, coordinator for disabilities at Cochabamba children’s disability support centre Casa de los Niños.

As part of the assessment process, people receive a percentage indicating how severe their disability is. Only those with 50% or more are entitled to the 1,000Bs annual benefit. Many disabled people say this system does not accurately reflect a person’s disabilities.

Marengo believes a 500Bs monthly benefit would help Bolivia’s disabled, but to transform lives, fundamental changes are needed in fields ranging from healthcare to awareness training in schools. “Often, therapy is more important than 500Bs,” he says.

While the demand for 500Bs per month has not been met yet, activists say the campaign has brought the issue of disability rights into focus in Bolivia. “The really big achievement is, they’ve woken up Bolivian society,” says one of the marchers, Leon Galindo Stenutz, whose daughter has spina bifida. “It’s generating a debate. You hear people talking about it on the bus.”

Guarita says that meeting other disabled people through activism has helped her to accept her disability. “Before that, I felt useless, because I thought I was the only one,” she says.

Politicians including health minister Ariana Campero, Arce and Rada, have all said that the monthly payment is not viable, and the demand is not under negotiation.

Nonetheless, the activists are determined to keep on demonstrating until the government agrees to discuss their demand for monthly benefits. On 6 June, industrial relations group Central Obrera Boliviana announced that it would attempt to mediate discussions between the protesters and the government. On 9 June, tragically two protestors were killed by a drunk driver.

Guarita had to sell everything she owned to pay her hospital bills, but if she had not received treatment, she would have been left in a persistent vegetative state. Now, she is determined to keep demanding her rights. “God gave me a chance at life,” she says. “If I can still fight for my brothers who can’t, that is my fight.”

The Guardian | Amy Booth

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