"MoTher-Carers"

 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.

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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.

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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.

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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.

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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.

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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.

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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.

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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).

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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.

The reality of these women, daughters and sons cannot and must not be thought of as a fairy tale  despite the personal strength they show to move on. In these places there are  no heroes or heroines,  but State abandonment and violated rights.

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.

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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.

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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.

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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

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Artist statement:

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.

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