https://elpais.com/autor/constanza-portnoy/ (Spanish version)
´There is no Justice without Equity´
´If the rights I have, others don’t; then these are no rights, but privileges´
Gabriela Perafán (24) went into several children shoe shops before finding the white loafers Kevin -her son- wanted for his fifth birthday.
“He said white shoes, ones that make him look older,” she says,
“But it was not easy to find those loafers in such a small size.”
Later, Gabriela bought white fabric to sew him some suit trousers, a shirt and a matching little vest.
“It was nice to see him that happy, wearing his new clothes and celebrating his birthday.”
“He suffers from much pain every time he breaks one of his bones. Sometimes he wakes up at night and says he would rather die.”
Currently, Kevin is seven years old and lives in Argentina, with his father, his mother and his little brother Brian in La Rioja, a Northwest province situated 1150 km from the Autonomous City of Buenos Aires, in a small, dry and mountainous town.
Kevin was born with a genetic disorder known as “Brittle bone disease” (Osteogenesis Imperfecta), which means that his bones break easily and he suffers from bone deformity. This occurs due to a defect in the genes that are responsible for the production of collagen. There is no cure for it, and the type Kevin has is one of the most severe. Its treatment consists of medication, physical therapy and different mobility devices that help him move around.
Alarmingly, there are three high-impact environmental issues which are related to this geographical area of Argentina known as NOA (Argentine Northwest).
On the one hand, open-pitmining has been exploiting the area since pre-Hispanic times; on the other hand, the crop fumigations that use agrochemicals, and -as if this was not enough- over thirty years ago a leather tannery was set in the region. There have been many complaints made by the local neighbours and also by environmental assemblies due to this tannery, as it produces highly polluting effluents that connect directly to earth and water. Traces of chromium, lead,sulfuric acid, hydrogen sulphide, ammonia and calcium oxide, -among other chemicals- have been found in these polluting effluents.
There is a clear indifference coming from the State and public policies about these issues, as they have been influenced by the private investment in the area, even when the private capital threatens the local population´s health.
Also, among the inhabitants of the area there is not a unified consensus about the environmental danger and its impact on health, both short and medium term, asmost of these families depend on the mentioned labour resources to subsist.
Despite water, earth and air are polluted in this area; few dare to speak up. Life goes by among intense mountain heat, social silence and all kinds of threats.
Despite having done all prenatal screening and tests during her pregnancy, Gabriela did not receive any diagnosis of Kevin´s condition.
“These are things I do not understand. One asks again and again to the doctors, but there are no answers.”
Kevin was born with both his arm bones and his femur broken. He did not stop crying for weeks.
One month after his birth, his parents received his diagnosis. Up to the date, he has reached the number of thirty-three bone fractures in his body and, due to the fragility of his bones, the doctors do not recommend him to wear an orthopaedic cast.
“Everytime he breaks a bone he must be in bed for weeks, using only bandages.”
Leonel Messi is Kevin´s greatest idol. He dreams of meeting him and showing him the football game he invented with his little table tennis ball.
A few meters from Kevin’s house and his family, is Alayn´s house (3) who lives with her mother Yamila (19). He is 3 years old and was born with a metabolic disorder called Mucopolysaccharidosis Type IV. This disease is also a genetic defect. It is a multisystem disease which refers to the lack of one or more enzymes (orthe necessary amount) to break down or process long chains of sugar molecules. As a result, these molecules accumulate in different parts of the body,gradually leading to a degenerative process which affects organs, bones and systems.
Its treatment consists of improving health conditions and trying to prevent progressive deterioration through an enzyme replacement therapy.
It is one of the most expensive treatments in the world, which is why most of the families who endure this diagnosis have to deal with different obstacles and bureaucracy; often due to the health insurance services in order to get the medicine required for long-term hospital interventions.
Both Kevin and Alayn´s treatments are continuously affected or interrupted due to this situation. The geographical isolation, the State apathy and the absence of sanitary control and regulations deeply affect the possibility of these children to get their treatment properly and on time. This was also seriously aggravated due to the COVID-19 public health emergency.
During this year 2020, both the treatments for Kevin and Alayn have been suspended and postponed uncertainly for months; that included getting the specific medicine for each disease.
The onlymulti-specialized hospital in which these children can be treated is in La Rioja Capital city, a three-hour-drive from their homes. In the town they live in, there is only a community health centre and a single ambulance which tries to satisfy the high health demand.
Priscilia is 14 years old. Her brother Diego is two years younger than her. Diego has severe cerebral palsy as a consequence of some meningitis symptoms he had when he was six months old. Her mother María (36) worked in the olive crops when she was pregnant and had to handle agrochemicals without any biosafety protocol. Like most of the neighbors who do these jobs in a system which shows extreme precarious labour conditions.
Priscila wishes to obtain a scholarship to study in University and become a special education teacher for children with disabilities.
“There is nothing like that in here, I wish the Government gave me a scholarship that let me study at University.”
“Children like my brother Diego have no chances in towns like these. People see them as poor little cripples, and I want to change that.”
It is not only the access to schools and mainstream education what they need urgently, but also treatment, different types of therapy, medical supplies, professional training, transportation, allowances and everything they must be granted by Law in the International Convention on the Rights of Persons with Disabilities.
Gema (2) was born with a severe pulmonary valve stenosis. She went through three cardiac catheterization procedures and an open-heart surgery when she was eight months old due to a medical malpractice and a late diagnosis of her disease. Consequently, she shows a generalized paralysis on the left side of her body.
“Everytime I go to the City of La Rioja to do some allowance and rehab procedures for my daughter, they never cover the total amount of the expenses. I usually complain and yell, feeling powerless. I always get a blank stare from the employee,” says Delia (30), Gema´s mother.
Also, ten-year-old Thiago and nine-year-old Rosa, neighbours from the same town, are in a similar situation. Without receiving the appropriate treatment, without receiving any disability allowance, they only count on their mothers as sole support.
Anita, a young 25-year-old woman from Bolivia, is a seasonal migrant worker. She came to Argentina when she was fifteen years old to work in the onion farms. There, she suffered both physical and sexual violence from the farm foreman. She was afraid to report this to the authorities as she was not only an immigrant, but also underage.
“When I went to the community health centre, the people who treated me said -Fucking Bolivian- go back to your own country.”
Seven months after this event that included both sexual assault and rape, Leonela (10) was born. During labour, a hypoxia situation took place and the baby was born with severe cerebral palsy, which led to permanent motor and cognitive consequences.
Anita had to wait until she was eighteen years old to get the Argentine citizenship. Only then, she could claim the doctors to make a diagnosis for her daughter Leonela, and start the requests for medical assistance, treatment and rehabilitation for her.(Many of which were barely recognized by the State and Anita is still claiming for them up to the date).
In these isolated and remote places, far from the big cities, the disability Law is not recognized by the citizens. These boys and girls must have all their rights secured, and are entitled to a monetary compensation. This should also include their mothers,who are their only family support. However, this is far from happening, and these women wander through the health system and the public institutions, without accurate information and effective solutions.
In this way, a social model of disability is generated. In this model, the environmental barriers are the ones who cause and enhance the exclusion and disability situation.
One similarity stands out and is repeated over and over again in almost every family of these children with disabilities:
The mother-carer role the mothers of these families have to take on. This gender role is accepted and even adopted exclusively by them without any questionings. The fathers of these families occupy a passive role, as mere observers of this relationship; the ones in charge of working the fields. It is also notorious that, more often than not, the father figure tends to abandon the family.
These women show an impressive strength and determination, but they also suffer from physical and mental exhaustion, which shows on their faces and emotional state. This situation therefore favours the development of several disabilities and acquired diseases.
These are women whose rights have been violated together with their motherhood and its enjoyment. They are unable to imagine a life project beyond their mother-carer roles. These women are affected by several ways of violence and discrimination due to both disability and gender.
The disabilities of their daughters and sons passes to them by association and, due to the lack of support and financial resources (that must be granted by the Law), they are the ones who have to provide that support and infinite care at the expense of their own lives and autonomy. Daughters and sons whose childhood rights have also been violated.
It is important to mention that on December 13, 2006, at the United Nations Headquarters in NewYork the General Assembly approved the International Convention on the Rights of Persons with Disabilities and its Optional Protocol. A total of 158 countries signed and ratified it.
This convention is an international Humans Rights Instrument which purpose is to protect and ensure the full enjoyment of all human rights, and at the same time, ensure people with disabilities full equality under the law. It includes a series of fundamental rights, such as accessibility, liberty of movement, health, education, employment, habilitation and rehabilitation, participation in political life, equality of opportunity and non-discrimination.
In 2008, Argentina ratified the Convention with Law 26378, getting later Constitutional value in 2014 with Law 27044.
“Assuming the fact that the majority of people with disabilities live in conditions of poverty. Stressing that children with disabilities should have access to all human rights and fundamental freedoms on equal terms as other children. Recognizing that women and girls with disabilities are often exposed to a greater risk, inside and outside the home,of violence, abuse, neglect or negligent treatment.”
The NOA (Argentine Northwest) region presents a dramatic and worrying rate of births with orofacial cleft (including cleft lip and/or cleft palate). These conditions are congenital malformations which require a multidisciplinary treatment and many surgeries that can repair the lip, nose, gum and palate as the child is growing up.
One of the many dangers this condition presents consists of severe child malnutrition, a situation many of these children show as they present problems during the oral intake.
“When Samir was born, I cried for three days. I did not understand why my baby had an open palate. I thought the worst that I could never feed my baby”
“It is very difficult to save money to cover hospital expenses. Even more so for single mothers with low economic resources” says Noelia (19), Samir´s mother.
Many of these children suspended their treatments and surgeries due to the geographical distances andthe lack of money needed to get to the city hospitals.
Consequently, the lack of treatment and/or surgeries results in both craniofacial anomalies together withoral expression disabilities, among others.
The house of Doña Inés is (50) known in town for being one of the oldest families in the area. Don Lucho Moreta (64) is her husband, and together they had five children. Three boys and two girls.
“The buses don’t have any ramps. I had three children on wheelchairs. I had to carry all of them to get them into the bus and take them to hospital; I did this until they were taller than me,” says Doña Inés Abregó.
The first boy was Miguel, and a few years later, Ángel was born. These two children began to lose muscular strength and motor stability by the age of nine.
“They fell and could not walk. After that, they paralysed and needed wheelchairs,” says Doña Inés.
“I went to several hospitals until I could not lift them into the buses anymore.”
“I claimed and cried, at the hospitals I wanted them to make those blood tests to my children, but that never happened.”
Those “blood tests” Doña Inés mentions refer to genetic tests that could put an end to her maternal suffering, and a name and diagnosis to the syndrome that caused two of her children to show (at the age of nine) a progressive and degenerative impairment of their systems that caused their death at fifteen due to heart, kidney and lung failure.
“They went from playing football and jumping as any other boy, to gradually fading away with no medical explanation or treatment,” says Don Lucho, explaining harshly.
Ismael was their third boy. He was only a baby when his brothers died. He is currently eighteen years old.
“It is terrible, because he knows what happened to his brothers.”
This family never got any disability allowance. They have not been part of the system, despite the many medical certificates and reports Doña Inés has presented to the state institutions of the province every time she can spend her time in a three-hour ride and get Ismael on the bus without ramp. Completely inaccessible.
Don Lucho cannot travel with them as he is losing sight as a result of diabetes. Doña Inés is the one who takes care of the entire family, to the extent that she leaves herself aside.
Since the day she received the diagnosis of her three-year-old daughter, Renata, Maricel (30) has not slept at night any more.
“During the past three years I have slept only an hour per night. I do not know how I am still standing on my feet,”
“It is extremely hard when medicine lacks and the health insurance does not cover the expenses,”
“Our children depend on that to go through the night,”
“The only thing I want is to give her the best quality of life I can.” she says
Renata suffers from Tay-Sachs disease. It has been detected after she turned one. It is a genetic metabolic disorder which presents lack of enzyme production. It is a neurodegenerative disease that shows rapid progression. (*)
The disabling situation generated due to the poor State and health insurance involvement in La Rioja that included lack of medicine, treatment, professional assistance, medical resources and transportation -among other issues-. This resulted in all women in Renata´s family getting together and creating a sort of “tribe” to constantly support Maricel and help her take care of Renata and the endless paperwork she has to do in the city.
Her grandmother, aunts and cousins are also “mother-carers”. Even so, Maricel cannot sleep at night, she wakes up begging there were not any electric power cuts; then she kisses Renata as she makes sure every oxygen delivery device is working properly, and cleans the endotracheal tube her daughter needs to breathe.
(*) All the families that have received this diagnosis for their children are currently demanding more scientific studies and investment to find a cure for this cruel disease: @cutasa @unacuraparataysachsysandhoffargentina
The present text and photographs are part of a photographic documentary investigation with a conceptual development, which was possible due to the Oxfam FNPI journalistic scholarship 2018.
Violence and gender discrimination, together with disability allow several types of violence and discrimination, all of which must be considered urgently by the State and the Civil society.