Santiago, Chile – For the first three decades of her life, Maria Soledad Guerra did not know what was wrong with her. She spent her first two years and much of her childhood in the hospital and has been back countless times since.
Guerra suffers from a rare genetic disorder, but as a child, she was misdiagnosed with severe asthma and pulmonary fibrosis. Her father abandoned the family when she was a baby, after it became clear she had a serious illness, and her mother did not earn enough to afford private specialists in Chile.
“It is so expensive to find out what is wrong,” Guerra, 44, told Al Jazeera. “Public health facilities often do not have the capabilities to do so.”
Guerra only learned she suffered from a misdiagnosis when her first two children were also born with severe respiratory problems. Pregnant with her third, she scrounged together loans to cover advanced tests and biopsies at a private facility.
Finally, at 29, Guerra got the real diagnosis: primary ciliary dyskinesia, a rare genetic condition that primarily affects the respiratory tract. The accurate diagnosis enabled early intervention that has kept her youngest daughter, now 15, largely symptom-free. But Guerra, and her oldest son, a nurse, and daughter, a nursing student, require lifelong treatment of symptoms and frequent infections.
“Debt, illness, debt, illness. It is a constant cycle,” she said. “Sometimes, doctors help me out. Sometimes, I do not go for treatment.”
Able to work for a while as a graphic designer, Guerra now receives a monthly disability pension of roughly $375, the minimum wage, but she has to pay for most of her healthcare out of pocket. If she were to die, she noted, her pension would not pass down to her children, but her medical debt would.
Guerra belongs to an association of people with rare diseases, and it was one of more than 200 organisations of people with disabilities that united on Tuesday to mark the International Day of People with Disabilities.
“Some are visible, some of us are not,” said Guerra. “Now, we are visible.”
‘I want dignity’
Thousands of Chileans with diverse disabilities marched together in Santiago, and thousands more took part in protests in at least 20 other cities in Chile. They united behind 12 key demands, and constitutional recognition of people with disabilities is at the top of the list.
Mass protests against structural inequality erupted up and down the South American country nearly two months ago, and they continue. Universal access to public health, higher pensions, and inclusive political representation are among the many concrete demands shared by protesters in general and associations of people with disabilities.
According to the National Disability Study, a 2015 government study, 16.7 percent of Chileans – more than 2,800,000 people – have some kind of disability. Some national organisations of people with disabilities believe the number is higher, around 20 percent.
Marcela Castro attended the Tuesday march with her husband and their 12-year-old daughter Matilda, who joined the protest chants and music with her whistle. Her dad proudly carried a sign that read, “I am Matilda. I want dignity!”
Castro works at the blood bank at a private clinic in Santiago, but she had no benefits or insurance that covered the specialist who diagnosed Matilda with autism when she was a toddler, and the family has nothing now to help cover any therapy, she told Al Jazeera.
Matilda attends a public school for students with special needs, but the various therapies that could really help her would cost approximately $700 a month, said Castro. The family cannot afford anything close to that, but a young health professional from their neighbourhood on the periphery of Santiago has been donating their time and helping out for a symbolic fee of $12.50, she said.
“We are tired of all the abuse,” said Castro, who enthusiastically supports constitutional recognition of people with disabilities and other collective demands. “Hopefully, the government will listen.”
Alongside the continuing protests against the government and economic model, citizens around the country have been organising grassroots neighbourhood and thematic gatherings and assemblies to discuss the situation and proposals for systemic change. Diverse associations of people with disabilities, the Deaf community, and other groups have been doing the same, and together they have compiled more than 25 demands.
The top 12 priorities presented Tuesday include constitutional recognition of people with disabilities in a new constitution that could get under way next year, recognition of sign language and deaf culture, and the creation of a Ministry of Disability.
Victor Videla, 62, and Daniel Diaz, 58, participated in local discussion gatherings in Santiago, where they heard the perspectives of workers, women and youth and shared theirs as polio survivors.
“I was 10,” Videla told Al Jazeera. “I was in the fifth grade.”
The disease left Videla with partial paralysis on one side of his body, affecting his mobility and speech. He did not get the chance to continue his studies because the disease also affected his memory and his family could not afford a school for his special needs, he said.
Diaz contracted polio as a baby. There were hundreds of polio cases in Chile in the 1950s and early 1960s, and the disease was fatal in a third of cases, according to a study by the University of Chile.
“It was an epidemic,” Diaz told Al Jazeera. “Chile did not get the vaccine until 1960.”
Diaz was able to attend a regular high school, but there was rampant discrimination in those days, even from teachers, and children with disabilities were often kept hidden by their families, he said. But Diaz said he did not suffer from low self-esteem, crediting his parents for treating him exactly as they treated his seven siblings.
Attitudes have gradually shifted over time, he said, thanks to the decades of work by people with disabilities. Diaz and Videla have been at it, organising with others for collective rights, for decades.
“All of the government administrations have been failures,” said Diaz. “It has been 50 years of indifference.”
Now, amid the broader national movement for systemic change, is the time for action and constitutional recognition of people with disabilities, he said. Diaz wants guaranteed representation not only in a potential constitutional assembly but also a minimum of 10 percent in both the lower house and the Senate, and he firmly supports guaranteed representation for indigenous peoples and women.
“This is historic,” he said of the continuing protests and clamour for transformation. “And among the people who have woken up are also people with disabilities.”
This is the first time such a diverse array of movements of people with disabilities have all come together, Diaz said of the protest Tuesday.
“This was a catharsis,” he said, visibly moved during the rally that continued outside the presidential palace at the end of the march. “People do not want to leave.”