Disability and inclusion: training and supporting caregivers

Ada Luz Masco, 46, was born in Peru, but she has lived in Bolivia for over 30 years with her aunt and her family. 19 years ago, her aunt gave birth to Ángela who had hydrocephalus, a buildup of fluid in her brain that had to be drained continuously. As she grew up, Ángela developed a cognitive delay and regularly suffered epileptic seizures. To make sure she is doing all she can for Ángela, Ada has been taking part in the support and awareness-raising groups on disability and inclusion organised by HI.

Two very close cousins

The two cousins are very close.  Ada is also Ángela's main caregiver, helping her when she has convulsions, fainting spells and vomiting caused by the small tumour in her brain. Although the size of the tumour has shrunk over time, Ángela's health remains fragile and she has to take seven different drugs a day, which is very costly. Ángela's parents travel around the Santa Cruz region all week selling books to earn enough money to pay for these drugs. Ada admires the strength and determination with which her aunt takes care of Ángela whenever she can spend time with her.

“I've lived through all her frustration; I've been with her in her fight to get the best for her daughter. She's someone I really admire for the way she has brought up Ángela and for what she teaches her: to be strong and courageous, not to give up, even when circumstances conspire against her”, recounts Ada.

Supporting caregivers and promoting inclusion

“Thanks to HI, we are now familiar with the laws that protect people with disabilities and feel more confident in demanding that Ángela's rights be respected by the authorities, hospitals and society,” explains Ada.

For eight months or so, Ada has been taking part in workshops run by HI in Santa Cruz. These psychosocial support and peer exchange workshops are organised for caregivers of people with disabilities. They are an opportunity to exchange advice, identify barriers to accessibility and discover tools for overcoming them. They also serve to raise awareness and provide information about the rights of people with disabilities, because caregivers are agents of inclusion and, through their actions, help to bring about change in society as a whole.

“Thanks to Ángela, by spending time with her and through the workshops I've taken part in as her caregiver, I've been able to develop my knowledge. I feel privileged because I learn more from her than she learns from me. Here, I have the opportunity to watch her grow and see her progress every day. That fills me with joy and satisfaction.”

Ángela’s determination

Ángela went to school until she was 10, but her parents took her out because she was being bullied and discriminated against by her classmates – and sometimes even by her teachers. This was taking a heavy toll on the young girl. Since then, the family has home-schooled her and Ada helps her to practise her reading and writing. Ángela is also supported by educational psychologists. With admiration and affection, Ada has watched Ángela develop into an intelligent and determined young woman.

“For me, Ángela embodies the desire of disabled people to be better integrated and to participate more fully in society, to be able to grow, play and work like everyone else. I know that she will follow her dreams. She wants to be a TikTok influencer and has told her mother not to worry about money because she's going to become famous on social media. I know she'll succeed, because she's very intelligent and the world is now more open to accepting differences”.