This is one story as part of the Voices of People with Disabilities during COVID19 Outbreak series
Names have been changed to protect the individuals mentioned in the story.
(Espanōl)
Juan Carlos is a middle aged educated man living in an urban area in a coastal city of Ecuador. He is president of a local organisation of persons with disabilities and has a physical disability. Interviewing with the International Disability Alliance, he describes multiple barriers Ecuadorians with disabilities face during the pandemic.
Juan Carlos explains that the work of organisations of persons with disabilities (DPOs) has been enormous, as well as the exchange of information: “Peer-peer support has been vital to get through the hardest situations”. He is proud to say that there has been a spontaneous solidarity between DPOs and persons with disabilities. Since the outbreak, they have offered medical and financial help, assisted with the distribution of food, etc.
The COVID-19 pandemic was reported to have spread to Ecuador on 29 February 2020. Ecuador has been described on several occasions during April as emerging as the "epicentre" of the pandemic in Latin America. As of May 7th, Ecuador had 25,211 active cases, meaning it is one of the countries with the most active coronavirus patients in the world, in relations to its population.
The official numbers regarding COVID-19 are not realistic and accurate in Ecuador, as in many other countries around the world. For instance, Juan Carlos explains that out of his four colleagues that died due to COVID-19, none of them died in a hospital nor received medical attention. “They died at home and won’t even be counted as a victim of the pandemic”, he says. He adds that not enough Ecuadorians are being tested for COVID-19 and tests are not yet being widely used. Also, there is also no disaggregated data on how many persons with disabilities have died or have been infected or received medical care.
“There is no plan for persons with disabilities for the COVID-19 outbreak. What are we supposed to do if there is no public transport available? How do we obtain food? There is no strategy for us”, says Juan Carlos.
Barriers in accessing medical care
Juan Carlos explains that a couple of his DPO colleagues went to the hospital, were briefly assisted and then asked to leave. One of them died a couple of hours later at home. “Persons with disabilities are not being prioritised nor seen as a high-risk group”, he says.
Juan Carlos’ DPO have sent the International Disability Alliance’s General Recommendations & Guidelines to the President of Ecuador, Lenín Moreno, a wheelchair user and first President with a disability in Ecuador and Latin America. They were told that the information is relevant and would be sent to the Ministry of Public Health. “We haven’t had any news since. It looks like there is an intention and willingness to include us but nothing really happens”, he says. However, the Mayor of the city has been more receptive to change and has arranged meetings with all DPOs in the area but change still remains to be seen.
One of the main issues in access to healthcare is that local pharmacies do not have home delivery services. “I have high blood pressure and have issues obtaining medication for it as there is no treatment protocol for persons with disabilities, but there never was one”, says Juan Carlos. On top of that, most pharmacies are out of stock and it can be extremely difficult to secure medication. As for hospitals, Juan Carlos explains that they are mainly focusing on COVID-19 patients, pregnancies and emergencies and all other appointments have been cancelled. “There is a lot of panic. People are scared to go to the hospital and private doctors are afraid of seeing patients. What are you supposed to do if you are sick?”, he says.
Furthermore, “telemedicine” is becoming increasingly common since the outbreak, which refers to the practice of caring for patients remotely when patients are not physically present. Common tools include phone or video-conferencing. However, as Juan Carlos explains, many persons cannot access telemedicine for various reasons: the patient must own a telephone and have enough credit to make or receive phone calls. In addition, “when they recommend you take medicine, how are you supposed to secure it when pharmacies do not have it?”, he wonders.
Most persons with disabilities in the region often do not have enough financial resources and can rarely secure a basic cell-phone plan, at best. Basic plans does not allow you to call all numbers or you’re are charged extra for calling special numbers. “This means having access to telemedicine is not an option for everyone”, says Juan Carlos
As many persons with disabilities, Juan Carlos explains that his mental and physical health has been severely affected during COVID-19. He has experienced anxiety and depression as a result of the confinement, high number of reported deaths in the region and uncertainty about the future. He explains that his physical health has worsened due to a poor diet due to the scarcity of food, and the lack of exercise and fresh air. He made use of the psychological support line, however, he received advice from a paramedic, not a doctor or psychologist. “I can’t say it helped much and it was costly”, he says.
In addition, Ecuadorian culture is prone to using natural medicine to cure illnesses, and COVID-19 is not an exception. “This is our first option, but when it fails or the patient is becomes critically ill, we turn to conventional medicine” says Juan Carlos . However, as hospitals are overwhelmed, more and more people have natural medicine as their only option. Private clinics have also increased their prices and tariffs, meaning alternatives to obtaining medical attention are non-existent. “Unfortunately, self-medication is becoming increasingly common and therefore, dangerous’, he says.
Likewise, persons with psychosocial disabilities are particularly affected during the outbreak, as public and emergency services have been cancelled. One Juan Carlos’ colleagues is currently struggling obtaining prescription and securing his medicine which is vital for his mental health and wellbeing. As he is not receiving any medical support, he has been obliged to rationalize his pills so they will last longer. Juan Carlos’ DPO has proposed an initiative to the Mayor of the city to secure access to vital medication for persons with disabilities.
Psychosocial consequences of COVID-19
Juan Carlos tells us about the painful experience of witnessing death of many people he knew and DPO members, who were unable to receive medical attention.
“Cemeteries were overwhelmed and could not keep up with the number of deaths. Many of our colleagues who sadly passed away remained in their house with their relatives for many days, or put in coffins or bathtubs with ice and fans”, he explains. “This is inhumane and everyone should have a right to a death that is as dignified as possible”. Juan Carlos explains that these episodes have had a high psychological impact for the disability community specifically. “Imagine to have a dead relative in your house for many days and being unable to hold a vigil and burry them, how do you get over that?”, he says.
The mass media such as CNN has also covered the story of families in a city in Ecuador who claim hospital authorities lost the bodies of deceased relatives, or bodies are being left in the streets.
Lack of accessible information
Juan Carlos explains that information provided by public officials regarding COVID-19 has been very basic, not very informative and not available in accessible formats. A specific guide for persons with disabilities was released by the National Council for Disability Equality of Ecuador (CONADIS) 15 days after the confinement was implemented. “This means a lot of persons with disabilities became infected due to lack of accessible information”, he says. He explains that around 60% of persons with disabilities in the region are living under the poverty line. This means most do not have access to a television, telephone or internet.
Juan Carlos explains that at the beginning of the outbreak, sign language interpretation was available during Presidents’ speeches, however, the image/frame was extremely small meaning the information wasn’t entirely accessible for persons with hearing impairments. Captioning was not available. Juan Carlos’ DPO has advocated for this to change and emphasized the right to accessible information. In regards to the City Mayor’s speeches, there is still no sign language interpretation available nor captioning. As for Ministers speeches, it varies from time to time but there is no general rule. “Despite having a national law and the CRPD that ensures information is accessible to persons with disabilities, many are left behind”, he says. Some specific formats are rarely available, “I have never seen any information in braille”, he says. Ecuador joined the CRPD in 2008.
Food shortages and inefficient social protection plans
When the state of emergency was declared, the whole city was on a lock down and the number of container ships reaching the city was extremely low. This meant that the products were insufficient to cover the needs of the entire population in the region. This had severe health consequences for the general population as diets were incomplete and poor, mainly based on carbohydrates. The price of products was also increased.
Moreover, most persons with disabilities are either unemployed or have very precarious jobs. Some are involved in micro enterprises and trade. Juan Carlos explains that persons with disabilities continued working despite the government measures and restrictions. “We either die of hunger or coronavirus”, he says. “We don’t do it out of irresponsibility or bravery, we do it to survive”.
A voucher scheme was established by the government to secure food for poor people, also called “emergency vouchers”. However, these vouchers only lasts for a few days and does not solve the long-term issues. “As a DPO, we are helping the government by providing the contact details of persons with disabilities that are in need of those vouchers, however only 20% were taken into consideration. We also receive funds to share with our DPO members”. Juan Carlos explains that if you are a person with a disability and have a formal profession, or own a shop, you are automatically refused any help as you are not considered at risk. “It’s not fair because most persons with disabilities, even professionals or owners, cannot continue working and have no income”, he says. Also, if a person with a disability lives in a household in which another member already receives a social benefit or government allowance (such as retirement pension), they are automatically refused this voucher.
Another issue Juan Carlos mentions is that there is a lack of official data regarding the persons with disabilities registered both in Ecuador and the city he lives in. This means that not enough support services are guaranteed for persons with disabilities and their needs are not properly taken into consideration. Also, if you are receiving a disability allowance, you are not entitled to food vouchers or any emergency support due to COVID-19. Another issue is that not all persons with disabilities hold a disability certificate, meaning that they fall into a gaps where they don’t receive neither a disability allowance nor COVID-19 emergency support.
Unequal opportunities in accessing education
Juan Carlos has a big family and his children that are unable to continue receiving education. He notices a big difference between public and private schools and universities. In the latter, students were able to continue studying remotely, there were advanced programs and software. However, in public schools, the quality of education was poor and remote courses were almost impossible to follow. Many have poor internet connection, or do not even own a device. “There is a clear inequality and gaps, meaning that if your family has enough money, your children will be able to continue studying, if not, your children are left behind”.
