Editor's note: Join me in welcoming Andrea Burga to the Debrief. Andrea writes from Peru about how the country’s political chaos impacts disabled people. This reporting is possible through partnership with Sodis, who work for an inclusive society. See also a version in Spanish. – Peter
I’m Andrea, an activist with disability from Peru. As well as working with Sodis, I make content on social media to make disability closer to people.
Many of us in Peru feel that our situation of estadillo social, social outburst and demonstration, seems to have no end. Even though we are not normally thought of in this type of context, people with disabilities are also living through these crises.
Our country has had six presidents since 2016, and only one lasted more than two years. We’ve faced years of distress and our health system collapsed during the pandemic, where Peru was one of the hardest hit.
We are worn out, but it feels like there’s always something worse. Currently my country is in protest against Dina Boluarte, who replaced the former president in December. Protests have been violently oppressed by police and armed forces. 66 have died from clashes and related accidents.
The protestors’ demand is “que se vayan todos”, for all of them to go, Boluarte and the parliament. Protestors ask for new elections this year and many are also asking for a constituent assembly to make a new constitution.
In this piece I share how the crisis affects us, and how we protest. It’s a situation that worsens our existing exclusion and at the same time shows the importance of our dreams of being a full part of our society.
Breaking stereotypes about protest
In the general imagination, people with disabilities are seen as receiving help, not as subjects that demand rights. Historically it has been assumed that we are not able to have our own opinions, or that simply we are apolitical. And when you think of people protesting on the street, the image that probably comes to mind is that of people shouting with posters in hand, but without any visible disabilities.
However, the reality we live in this moment breaks any stereotype. There are people with disabilities who have mobilized and there are others who are totally against the demands of protestors. Our collective is very diverse and each person or organization has different perspectives on what is happening.
The Mesa de Discapacidad y Derechos, a platform that brings together twenty organizations of persons with disabilities, issued a statement calling for the cessation of violence and bringing forward elections to 2023. And at the same time, there were organizations within the Mesa that did not sign the statement, since they did not agree with the requests of the document.
I have always been aware of the diversity of positions within my community and I will persistently defend everyone’s right to their own voice. However, I must say that I, like most organizations on the Mesa, was (and am) very shocked by the repression of the State.
Taking a position from where we are
The truth is that protesting in the public space, or as some activists call it, “poner el cuerpo”, putting your body on the line, is not always inclusive for people with disabilities, and especially when the police are shooting tear gas and pellet guns.
I also want to take a position myself: to say in a loud voice that it is outrageous that a population is assaulted for exercising their right to protest. But I was afraid to face the lack of accessibility in a context of extremely violent protests.
As a blind person, I knew that running or getting away to safety would be difficult. But I have found other ways to protest, through my social media: spreading information, talking with my friends and recording videos on Tiktok demanding that human rights be respected.
To think that the protest only occurs in the streets is ableist. There are those of us who will not be able to be present for our safety. We can resist in all the spaces where we engage.
“Protest as much as my body lets me”
However, there are people with disabilities who do choose to go to the protests, taking their own precautions. Ange, activist of the Anti-Ableist Autistics collective, who went to the demonstrations, knows very well:
“From the mental health perspective, going to a march is over-stimulatory. There are many lights, sound, movement. And now the repression is so intense that I have even had to medicate before going to each protest. If they gas me, it might cause a panic attack. I'm going to protest as much as my body lets me, because I feel it is a citizen’s duty, but I am aware that not all neurodivergent people can do it.”
Ange's decision to be part of the mobilizations has brought questions, including from the protesters themselves:
“There are people who have asked me, ‘Do you really want to go? Are you sure you can?’ One could say that these are questions that come from love and concern, that’s right, but that’s not how I heard them. For me, what they wanted to say is that I am a weakness and that they do not want to take care of me. But I never asked them to.”
For her, anti-ableism is absent in these social movements. “There is talk of anti-colonialism, anti-racism, but anti-ableism is not on the agenda of women's groups or the left. As people with disabilities we have to show that we exist too.”
Caught in police excesses
In Lima it seems we have gotten used to knowing that there are almost daily protests in the center of the city and also, to a certain extent, we have normalized the avalanche of arbitrary arrests.
By January, for example, hundreds had been detained. Lawyer Janet Marín, who was called to defend some of the detainees, was surprised to find, “that one of them had intellectual disabilities and epilepsy, and was not participating in the marches.”
The young man detained, Jessy Amílcar Aguilar, was carrying a sign that said “todo Wiesse”, a hallmark of those calling people to a route on Lima's minibuses, colectivos. The police simply detained Amílcar and, apparently, did not provide him with any accommodation during his detention or allow his mother to give him his medicines.
Even if Amílcar had been protesting, he should not have been arrested unless there was an offense. Detentions without justification and with the sole purpose of intimidation are a clear violation of the human rights of the entire population. And in a country where the majority of people with disabilities in work do so in the informal economy, often on the streets, this has dangerous consequences for an already-marginalized group.
Outside Lima, in the most fierce violence
The southeastern region of Puno, and in particular, the city of Juliaca, has been the place that has claimed the most victims due to brutal repression of protests. At least 18 people were killed, including 17 civilians and one policeman.
The disabled community in this region is no stranger to what is happening on their land. According to Felipe Flores, leader of the Puno Federation of Persons with Disabilities, there are people with disabilities who have signed the protesters' requests and have joined the mobilizations individually:
“Those who can go out to march. I have seen a group of blind people, for example, but it is difficult to join from our organizations, because there is a lot of repression and there are people with disabilities who cannot run so fast if a tear gas bomb falls”.
Another issue that draws Felipe's attention is that there are wounded who do not go to hospitals for fear that they will not be properly treated in retaliation for having gone out to demonstrate. Felipe is worried especially about those that acquire disabilities: “we do not know if the State will guarantee them adequate care.”
Felipe sees the same indignation among people with disabilities as that felt by the general population: feeling ignored by the centralized focus on Lima. Rehabilitation services are centralized in specialist institutions in Lima and not received by the majority of persons with disabilities. The Puno community has seen for many years that work on disability focuses only on the capital and it does not reach the regions.
The challenges of staying informed
Social networks have allowed me to keep abreast of the news on the local scene. As a blind person, one of the most accessible mediums for me is Twitter, because a lot of the information that is shared there is in text. Since the crisis exploded I have not stopped refreshing it.
However, it is not always easy to stay informed, since some of the content shared is not accessible to screen readers. In the case of the calls for protests, the flyers were almost never accompanied by an alternative text that allows me to know the time and date of the protest. Knowing this is not only useful if I want to go to the march, but also if I want to avoid going to the rally site.
This lack of accessibility is increased for the deaf community. Susana Stiglich, a deaf activist, tries to find out about the situation on a daily basis through Twitter, and she shares information in a Telegram group with deaf people and interpreters.
“The only accessible television channel is TV Peru, the state channel. I find out what is happening because I understand Spanish and I get information from the networks, but many deaf people who only speak sign language cannot do the same.”
On the internet, Susana has found the advantage that the videos have the option of automatic subtitling, but, as she indicates, this option is only useful for deaf people who understand Spanish.
There has also been an increase in false information on social networks. In the case of the deaf community, the exposure to misinformation is even more evident. “There are deaf people and interpreters who broadcast videos in sign language with inaccurate information, such as news accusing all protesters of being terrorists,” Susana says.
The information is not entirely friendly to neurodivergent people either. For Rosa Victoria, an autistic activist, subtitling is also very important for her community:
“There are videos that have sounds which affect me, so it helps me to mute them and watch with subtitles, but if the video doesn't have them, I risk playing it knowing that it can make me uncomfortable. The videos could also have sensory warnings, a message that says: 'contains loud sounds,'”.
“Worse than the pandemic”
The conflict with its clashes and roadblocks has made the situation of disabled people harder. And in a context of widespread crisis, people with disabilities are not a priority for government authorities.
In Cusco, another region where large mobilizations have been registered, lives María Raquel Pilares, an activist with a physical disability and president of the Organization for People with Disabilities in her area. She shared how the situation of disabled people had been affected by both the government and those protesting:
“There are people with disabilities who are dedicated to street vending in Cusco, now many cannot go out due to the fighting. I have had to accompany a young woman who has schizophrenia and needs to go to [the city of] Cusco every month to collect her pills. I had to beg the municipality to give me a vehicle to carry it.”
“I feel that we are worse than in the pandemic. The State is not taking measures, in my community we run the risk of running out of gas. The women of the area want to send a document to the Ministry of Women to ask them to do something. We even want to ask for a truce, but the organizations that are participating in the mobilizations do not listen to us either.”
At both municipal and national level, advocacy cannot take place to meet with government entities or demand better services. There is a lot of delay, offices are closed, administrations are changing, and, according to one member of the Mesa, “disability is not a big issue for them in this period.”
Dreams for a more inclusive country
It is worrying that in times of crisis our situation worsens. We see there is no guarantee of our rights to protest, to freely move without fear of arbitrary detention, to access information, and to enjoy basic services in all corners of the country and not only the cities.
The government does not seem willing to dialogue, and does not seem willing to attend to the needs of a population tremendously hit by widespread exclusion, the centralization of health services and the pandemic.
Society continues to think that we are subjects without opinion. Despite this, the disabled community experiencing the crisis breaks with these prejudices by showing the diversity of our political perspectives.
Some of the biggest obstacles we face are stereotypes. It’s never too much to show the world we engage, we move and survive in times of instability. We are people that resist in protests or demand better care in regions with little access services. We should stop being seen as victims and be recognized as people capable of playing an active role in the society and politics of our country.
As long as the State continues to have the perspective that people with disabilities are the least important in times of crisis or that they are apolitical individuals who have no interest in the local situation, the neglect of our rights will continue to deepen and the dream for a more inclusive country will remain postponed indefinitely.
Esperemos lo que viene. Let's see what comes,
The illustration is by Tan Kuan Aw.
Andrea's reporting is made possible by Sodis, who work for an inclusive Peru and to guarantee of the rights of persons with disabilities. This partnership was made possible by Alberto Vasquez and Pamela Smith.
This English version was translated from Spanish by Peter and Google Translate. It benefits from direction and guidance from Alberto and Pamela.
Many thanks to all those who spoke with Andrea and shared their experiences and activism.
Thanks, as always, to the readers and organizations that make Disability Debrief possible.