Bolivia: a high mountain to climb

Feliza Ali Ramos is the disability programme co-ordinator with the Bolivian field team of development agency International Service. She reflects on her own life as a disabled woman in Bolivia and discusses how she is working to support people with disabilities in the fight for equal rights

On 23 September 1997, my life changed forever when the driver of the bus I was going home on fell asleep at the wheel. We plunged 70 metres down a hillside and five of the 12 passengers died. I received fractures to my spine and right knee.

Since the crash I haven’t had any sensation in my legs. I’ve had six operations, in one of which doctors removed my right patella without permission.

Later, I found that two events had acted against my full recovery. Foreign doctors who happened to be travelling as tourists on the bus had picked me up face-down and warned I shouldn’t be turned over, due to spinal injuries, but the radiologists at the hospital seemed unaware of this and put me on my back, resulting in further disfiguration of the fractured vertebrae pressing down on the spinal cord.

In addition, because I was single, I needed authorisation for surgery which meant my parents had to come to the city of Potosi (where I was in hospital), delaying surgery until 48 hours after the crash. This was fatal because damaged brain cells related to the spinal cord die after about six hours and never regenerate.

If I’d received surgery sooner, further damage could have been prevented.

My first years in a wheelchair meant a constant fight for acceptance. I felt strongly the difference in how people with and without disabilities were treated. People think we have to have decisions taken for us, and we often have no chance to object. So I started to challenge this.

I did an analysis and found that disabled people in Bolivia are discriminated against. Public spaces or buildings are inaccessible; so are public toilets. I often wonder who can work for a day without going to the toilet. I think it’s inhumane.

Then there’s the social barrier: people’s reactions to disability. People think wheelchair-users are good for nothing or that we’re ill. I have a degree in social work and looked for a job in that area but colleagues thought I couldn’t manage, so I stopped looking.

People said my disability was a punishment from God. I asked forgiveness for my sins for more than four years but then realised that having a disability is neither a blessing or misfortune. It’s simply something that gives you a different perspective, allowing you to value human qualities differently.

I started to gather my disabled comrades and to suggest we organise ourselves. I formed the New Hope association of people with disabilities, then the Federation of Persons with Disabilities in Chuquisaca, and later the state-funded Committee of Persons with Disabilities in Chuquisaca.

Bolivia doesn’t have official statistics on disabled people so we use figures from the World Health Organisation. These state that ten per cent of the population in developing countries has a disability, which works out at over 827,000 Bolivians.

In addition, 62 per cent of our disabled population is poor; 39 per cent are classified as destitute; and 97 per cent get no education. That gives us almost no chance of individual development.

I joined International Service, a UK-based international development agency, as co-ordinator of its disability programme in Bolivia. We joined forces with disabled people’s organisations and other NGOs and managed to get disabled people’s rights recognised as part of the constitution. In January 2009 a new constitution was adopted that recognised disabled people’s right to education, free healthcare, good working conditions and the right to develop individual potential. The state now prohibits and punishes all forms of abuse, discrimination, exploitation and violence, and ensures access to prevention and rehabilitation services.

We’ve also worked to support the creation of job opportunities, the establishment of a national plan for equal opportunities, the development of a national register of people with disabilities, the recognition of sign language, and the reclassification of blind teachers so they can receive their due benefits.

The two main disabled people’s organisations in Bolivia are the National Federation of Blind People and the confederation of People with Disabilities.

These bodies have made progress in promoting our rights but there has been interference from different political parties and their ideologies have divided us, diverting us from our main mission. While they’ve put disability on the central government agenda, the movement as a whole has been weakened.

The Government has 40 million Bolivianos (approximately £4m) to spend on projects for people with disabilities. This is a huge step forward. However,
the professionals implementing these programmes don’t know about disability issues. They carry out activities from a medical rather than a social perspective, seeing disabled people always as objects in need of charity.

We’re convinced this is not the way to address the issue. We want social inclusion and this will only happen when society accepts and takes account of us in all the economic and social developments of our beloved Bolivia. We want our international motto to be fulfilled and translated into law: nothing for us without us.

Our strategy up to 2015 is to strengthen the dialogue between the grass roots disability organisations and the Government. Then we can ensure that national development programmes are truly inclusive.

Living in Bolivia with a disability is a constant struggle but I love my country and want to do my part in moving it forwards.