* * *
«Laura»
«…From the interruptions, to make a new path; from falling, a dance step; from fear, a ladder. From dream, a bridge; from search, the encounter.»
-Fernando Pessoa-
“But NOT without mourning,” says Laura, when she explains in her own words what it means to become a resilient woman.
To be born again:
Laura (45) lapsed into silence when she was 23 years old, due to a medical malpractice which caused her to bein a coma for six months.
When she woke up, the first thing she felt was that her body did not belong to her anymore, and that an abyss of despair had come alive deep inside her.
Quadriplegia, hearing loss and 95% visual impairment. This was the diagnosis doctors gave to her husband and father of Nahuel, her only child.
Before that diagnosis, Laura was a young woman trying to break through life amongst her recent maternity, her marriage, and her wish to get a university degree and become a doctor.
From her childhood, she recalls being in front of a window, watching the shining stars in the night, and wishing to live in one, far away from that house.
By having a strict mother and a distant father who severely imposed traditional family roles and values; Laura developed a long-term breathing disease, known as severe bronchial asthma, together with the desperate wish for a different life.
“In my family things were accepted without questioning, and it was too hard for me to open my eyes and see things for myself.”
“There was a time when my mother was extremely sick, and I had to raise my siblings and be in charge of my entire family.”
“I spent my whole childhood and adolescence wishing for something else.”
As an adult, Laura tried to get rid of that social model she had deep inside, carved in stone, which she had used to build her identity.
“It is extremely hard for a woman to allow herself to desire and explore different worlds when the only worlds that are given to you are your home, your children and your family.”
“I was engaged in a bitter internal struggle that filled me with guilt as I wanted to develop professionally, being at the same time a mother and a wife.”
During that moment, Laura recalls that her breathing condition got even worse and she started to suffer from several asthma attacks frequently.
“Is it possible to be any kind of connection between wanting to reach that freedom of choice and the feeling of betrayal regarding those family values?” I ask her.
Laura’s words are filled with sweetness. While she speaks, her warmth and self-determination show in her voice.
“In time, I understood it was,” she says, “and that my asthma was nothing but the proof of it.”
The day of the silence:
Laura recalls that day as painful, filled with coldness and images that come to her mind, images that get darker and darker until falling in an entire darkness.
She says everything began at night.
That Nahuel, her baby boy, who was two and a half at the time, was sleeping quietly in his crib when she felther chest tightened in a way she never felt before, and that a narrow stream of air was barely filling her lungs.
“It felt as if I was falling down some stairs to emptiness.”
-Wake up her husband,
-Telling him she couldn’t breathe,
-Leave her baby,
-The ambulance that takes a long time to arrive,
-Entering the emergency area of a hospital,
-Crying out for medical attention,
-Hearing a nurse say «Wait your turn» «Do not disturb»,
-Screaming for seven hours that she couldn’t breathe,
-Being ignored,
-Go to another hospital,
-Get in the car,
-Running red lights,
-Shaking a white handkerchief out the car window,
-Puffs of air hitting her face,
-Refusing to enter her veins,
-Again«Wait your turn»,
-Her lungs about to collapse,
-«Impossible to intubate»
-Fainting on the floor,
-Darkness,
-Silence,
-And a point of no return: Hypoxia followed by coma.
Six months later:
Lying in a hospital bed, Laura opened her eyes for the first time, unable to see, hear and walk the world that surrounded her.
-Why am I blindfolded? – It was the first thing Laura asked when she was able to pronounce words.
-Your eyes are not blindfolded.
-Then, why can’t I see? –
– Quadriplegia, hearing loss and95% visual impairment. – Was the answer Laura received.
From that first moment, Laura mentions it was impossible for her not to feel overwhelmed by denial and self-pity.
She says that, unexpectedly, sadness took over her and she felt outside the time-space continuum, far away from life and its meaning.
«Loneliness, deep inside,” she says.
“How to think about the future when your whole world disappears, and it gets out of hand.”
However, her world is now full of hands, strange hands. Hands that touch her. Hands that carry her around. Hands that clean her. Hands that feed her. Hands that put her to bed. Hands that wake her up.
Hands that touch her, again, and again and again.
Sometimes with respect and dignity. Sometimes with indifference and coldness, violating all her privacy and the little intimacy she has left.
“These are hands that are not yours, these hands belong to someone else. To people you cannot see or listen to, who get inside your body and make you realize you are there, among the living.”
“Your disability takes over your identity.”
“I stopped being Laura, and now I am ‘the crippled’ ‘the blind one’ ‘the deaf’; everything but ‘Laura, a person’.”
Deaf-blindness:
Laura says nobody explained to her that her condition, that involved the loss of hearing and sight, had a specific name: Deaf-blindness.
And that was the reason why, during so many years, people treated her like a baby, or as if she were a bunch of disabilities.
“People with deaf-blindness represent between 0.2 and 2% of the world population. In many countries, they are not considered as aseparate group among people with disabilities. Deaf-blindness is often misunderstood and underestimated; and this situation contributes to the multiple barriers these people have to face (…) Some of them are entirely deaf and blind, but also many of them have some remaining sight and hearingthey can use.” [1] .
As for Laura, she can easily communicate through a screen magnifier technological device which allows her toread and write.
By having some remaining hearing, she has a better reception of sounds if spoken to her left ear. And just recently, she began to wear a calibrated hearing aid that adjusts to her hearing levels.
Regarding her mobility, she is an electric wheelchair user and she can move around as long as she has another person guiding her through the sense of touch by showing her different points over her body.
In the last years, thanks to the virtual era and social media sites, she began to get in touch with people with deafblindness and multiple disabilities from all over the world. Only then she could learn that her disability was not merely the addition of different disabilities.
“It is very important for a person to know what his or her disability experience is. Only then we will beable to understand the supports we need in order to have an autonomous life.”
After that, she also learnt that in Argentina there is a lack of a legal, sanitary, institutional and interdisciplinary framework and of adequate professional training.
That is why, the parents of children with multipledisabilities started a fierce fight to try to revert this situation thatinvolved lack of State presence and rights violation. [2]
“It is a brand-new fight, and it has been fought by those same parents of children with multiple disabilities.”
“Only when you closely experience disability, the marginalization and exclusion we feel every day can be fully understood.”
«Nowadays, nursing homes are the only solution for adults like me.»
“When I was 24, I was taken to one of them for four years, and after that I was left in my parents’ ´care´. Honestly, I do not know which place was worse.”
Laura lived with her parents for ten years. During that time, she suffered from many situations that involved physical, emotional and verbal violence.
“They hid me in a room so that nobody could see the bruises in my body.”
At present, Laura lives in a rehabilitation centre for the elderly that focuses on neurological conditions and motor disabilities, in Buenos Aires.
Decisive moments:
Darkness and melancholy wander around restlessly. There are only two possible ways: keep on going or stop breathing.
“There is no other choice.”
She refers to it, as if it were something unimportant, by using the words «it is a silly thing to say» but, in fact, she knows it is not.
«To wear a bra again, put on my favourite perfume, wear flowery scarves around my head and learn how to put on some lipstick, even though I cannot see myself.»
By listening to this, one could jump to many (hasty) conclusions about this behaviour linked to these socially built gender roles mentioned by Laura. A behaviour that has led to several constructive debates regarding conditioning and oppression of the female body. However, it might be important to think of it from the isolating situation led by multiple disabilities and the need of being part of a society and a historical moment.
Laura had a chance to re-buildher subjectivity through this previously internalized gender behaviour.
To her, to take care of her own body, even though it is due to the socially imposed rules enforced by the western paradigm of cisheteronormativity, was like getting into the world again, and breaking into pieces that ‘disabling’ and prejudiced social look towards women with disabilities.
Because in the end, it is notonly about rehabilitating the body with disability, but also (and mainly)arousing the desire that keeps us motivated in life.
“I hadt o cling to the wish of living and find the strength to live another day.”
Laura decided to live after she went through a terrible grief. And currently, she has a way of living the present that might be thought of as ´resilient´. [3] .
“One of my greatest challenges was transforming the way of living my disability.”
“Stop living it as a personal tragedy and a deficit; stop frequenting those places where I was seen as (and where I felt like) a sick patient.”
Learn to fly:
One day, a valuable opportunity came into Laura’s life. She decided to go to a reading and writing workshop in the Public talking-book library ´Nuevo Ser.´[4]
“My dream, the one of a woman with visual impairment and hearing loss, came true; I could write a book.”
After considerable efforts, her book was published in 2014. Its title is ‘Aprender a volar.’ [Learn to fly]
This experience allowed her to express her own self-determination and leave that docile imprisonment behind. As she explains in the prologue:
“I am not trying to lecture anything, what I want to show is that, even though our dreams seem to be out of reach, we can make them true if we do not let them die.”
“While we yearn for things, we are alive. There is no difference between one person or another. It does not matter if a person has one or two hands, if he or she has legs, or hasn’t. We are all human beings.”
“The discrimination we, the ones who are on this side of the road, face every day vanishes if we close our eyes and we let out imagination flow. If I just say that we are all the same, it is not the same as proving it to you.”
The Loneliness from the Others. Those who define ‘normality’:
Prejudice, lack of information and interest, and discrimination become cultural barriers and attitudes which impact negatively on a person with disability.
However, the risk of it is even higher if this person is a woman who also has multiple disabilities.
If Laura had got the necessary supports (that by right she should have) to carry on her motherhood despite being a woman with multiple disabilities, perhaps her baby, Nahuel, would not have been raised by another ‘abled’ woman who took her place.
“The father of my baby made several decisions without asking me. He left me isolated and confined to a nursing home. I spent the first four years there after I woke up from the coma.”
“He got together with another woman and took my baby away from me”.
“Everything happened without my consent.”
Fear emotionally paralyzed Laura. She was afraid of losing the few moments she was ‘allowed’ to be withher son Nahuel and be a part of his life.
“All these family values triggered off again; and also my medical diagnosis condemned me to invisibility.”
How could she ask for help? Who was going to listen to a vulnerable deaf-blind woman whose body has been taken by a quadriplegia; and who wanted to perform her mother role?
“No one.” That was the answer she received in the nursing home she was confined to.
“Some build barriers so that people from the outside do not enter; others, so that the ones inside cannot leave.”
As she was suffering from many types of violence, gender discrimination[5] , disability discrimination and rights violation; waiting for a retributive justice with gender and disability perspective that could protect Laura twenty-two years ago was practically utopic.
“If we are still fighting for something like this today”
While many women fight against the enforced role of motherhood; women with disabilities still fight for their right to be mothers, as they are usually forced to compulsory sterilization or; to a lesser extent, more subtle (but still oppressive) impositions such as ‘you should not have children’. [6] .
Research shows that no other social group has been this restricted regarding its reproductive rights, or has been treated in such a negative way as women with disabilities have been. [7] .
Regulatory Framework:
On December 13, 2006, at the United Nations Headquarters in New York 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[8]
This Convention shows a historical change in terms of the concept of disability, by claiming that barriers and social prejudices are disabling, and focusing on the recognition of human rights.
In 2008, Argentina ratified the Convention with Law 26378, getting later Constitutional value in 2014 with Law 27044. [9]
Such convention, in its article 6, section I (sub-sections Sand Q) states clearly the responsibility of the States Parties by acknowledgingthe following:
“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.”
Article 23 on Respect for Home and the Family, undertakes State Parties to render the appropriate assistance, if needed, so that people with disabilities can take on their responsibilities regarding parenthood, stating that under no condition a child would be separated from his or her parents on the basis of a disability of either one or both of the parents. [10]
In accordance with Article 12 Paragraph 2, «States Parties shall recognize that people with disabilities enjoy legal capacity on an equal basis in all aspects of life.»
In this way, the figure of the legal guardian as the one who assumes responsibility over the person, would be replaced by a support model in order to enable decision making. «States Parties shall take appropriate measures to provide access to people with disabilities to the support they may require in exercising their legal capacity.»
So, in this legal context of recognition, it is to be assumed that the rights of the people with disabilities, particularly women, are protected and guaranteed in Argentina.
“One would assume that…” says Laura, sighing heavily.
“My son was twelve years old when the Convention came into force.”
“I kept on finding barriers everywhere when it came to exercise my right to motherhood.”
“Barriers that hampered my ability to communicate. I found out that a deaf-blind person faces a lack of support, of calibrated hearing-aids, of accessible technology. There were also economic barriers, physical barriers that prevented me from going out to the streets and doing Justice, attitude barriers, indifference…”
“Isolation, tons of isolation. And of course, oblivion.” [11]
Let’s go over some important aspects:
In Argentina, Law No. 26.485 which came into force in 2009, represented an improvement in the inclusion of gender perspective in the Public policies. This law is oriented to comprehensive protection of women, as it intends to prevent, punish and eradicate violence against them in all their personal environments.
At the same time, the National Plan against Violence to Women is designed to create Public policies and coordinate actions and strategies to enforce that same law.
However, several situation reports show some alarming results: «A lack of agreement on the Gender Perspective and Disability in legislation a and on Women-oriented Programs; mostly in what comes to violence, access to justice, sexual and reproductive rights and access to the labour market.” [12]
In this way, some perspectives are still valid, such as the validation of legal guardians, pathological stigmatization, stereotypes, disabling and incapacitating situations, isolation and imposition of will. All this at the expense of human rights, autonomy, and gender perspective and disability.
Another clear example of this was the passing of the 65/2015 National Ministry of Health resolution. [13]
On the one hand, this resolution represents a great improvement in the rights of people with disabilities, by getting the right of having accessible, acceptable and high quality sexual and reproductive services. It acknowledges, at the same time, the right to have supporting systems that contribute to decision making, but that do not replace it. Particularly, to bring to people the notion of informed consent.
However, there is still a lack of bonding with real life issues that allows its implementation by means of programs and specific strategies based on gender perspective and disability.
“There are no accessible birth control pills or pregnancy tests, so that deaf-blind women can use autonomously.”
“A deaf person or a person with hearing impairment cannot go to a health centre on its own as there are no sign language interpreters.”
“A woman who is a wheelchair user does not even have an accessible gynaecology stretcher and more often than not, the doctor’s office is not accessible for them to even enter the room.”
“The telephone help line 144 which gives advice and counselling to women who suffer violence, does not include deaf women or with hearing impairment.”
Accessibility is recognized as a fundamental right of the people with disabilities, and it is vital to achieve inclusion and equality (Article 9 of the Human Rights Convention on the Rights of Persons with Disabilities).
So, how can we put this into practise and claim these rights if there is no access to them? [14]
Self-ownership:
It is not only the Convention’s lack of enforcement and the absence of a legal framework based on gender perspective and disability, along with the missing programs and policies that accomplish this. One must also bear in mind the ways of oppression that society enforces and naturalizes through habits and situations which are systematically reproduced and which violate the rights of the people with disabilities.
For many sectors of society, Laura does not own her own body. Despite having lived extremely painful situations, these allowed her to gradually gain acceptance and transformation so that finally she could empower herself over her disability.
“I am 45 and I live with people much older than me. The health personnel who work in the institution calls us ‘guys.” (In a childlike sense).
“There is no explicit rule which forbids us to enjoy our right to sexuality or intimacy. But, when it comes to the institution itself, there are all kinds of restrictions in order to avoid this.”
“For women with disabilities, and mostly for the ones who are institutionalized, that part of life is a taboo. They take for granted that we are no longer allowed to express or access our sexuality, and that we cannot enjoy intimacy with somebody else.”
You should be thankful:
People have said to Laura that she should be thankful for having a roof over her head, for getting food everyday and having a place to sleep. As if all her rights merely involved that. To subsist and keep having the basic needs every human being has.
She has been told this so many times, that she came to doubt about her own position of citizen to fight forher rights.
In 2018, in a completely illegal way, ‘Incluir Salud’, [15] a program from the National Disability Agency which guarantees access to the health services, removed her the support benefits that allow her to have anautonomous life. (Law No. 24.901, Basic Benefits in Comprehensive Habilitationand Rehabilitation Systems in favour of the people with disability, and law 26.480 of domiciliary aid).[16]
“All people need some kind of support to keep on living their lives, some more than others, but nobody is entirely self-sufficient.”
“I need a qualified person who helps me in all what comes to orientation, mobility, communication and social participation.”
“For example, if I have to take the bus to go to my writing lessons in the library.”
“Same when it comes to doing some paperwork, or picking up my medicine and the multiple demanding devices I need because of my disability.”
“Or even if I want to go to a park, to breathe pure air, or to go to swimming lessons, which contribute to my emotional and physical wellbeing.”
“I have been living locked inside these four walls, as if it were a domiciliary prison.”
The ombudsman Office, both from the Capital City and the Province of Buenos Aires, addressed Laura’s complaints about the violation of her current rights regarding the removal of the health care aid.
Even though some in court declared themselves unable to rule in this matter, Laura had to deal with bureaucratic paperwork and finally, there was a judicial ruling that came to a favourable resolution. Even so, that ruling was never delivered as the Health System continued denying the supporting aid that corresponds to Laura.
Perhaps they have forgotten to read Article 19 from the Convention on the Rights of Persons with Disabilities, especially the specific section in paragraph B about the right to live independently and to be included in community, stating that «Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.»
The ugly truth: Denial and concealment of rights is a crime, not guaranteeing them.
Laura explains harshly it has a single name ‘forced disappearance’.
What saves you in the end?
«I dream of writing another book and establishing the first Association for people with multiple disabilities and deaf-blindness in Argentina.»
“That is a dream they will never take from me.”
–LAURA –
(And all the people who identify with my life story)
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[1] See risk of exclusion regarding the implementation of the Convention on the Rights of Persons with Disabilities and Sustainable Development: Inequality and people with deaf-blindness. Initial global report on the situation and the rights of people with deaf-blindness. World Federation of the deafblind. WFDB. September, 2018.pp. 3-4
Id. “Based on Nordic definition (*), the WFDB (World Federation of the deafblind) definesdeaf-blindness as a differentiated disability related to the sensory deficiency, to such an extent that it makes it difficult for the affected senses to compensate each other. In the interaction with the environment barriers, it affects social life, communication, information access, orientation and mobility.»
(*)The Deafblind Nordic Cooperation Commitee. The Nordic definition of deafblindness. n.d[CITED 2018 June 2]; Available from: http://www.fsdb.org/Filer/DBNSK%20English.pdf
[2] See. http://www.elheraldo.com.ar/noticias/135578_una-ley-en-atencion-de-las-personas-con-discapacidad-multiple-o-sordoceguera.html
[3] Resilience refers to the sum of psychological resources that a person is capable of building to face traumatic situations. This process is unique and its development is not associated with mandates or demands, but with the gradual discovery of self-evaluation mechanisms that allow building security, self-esteem and confidence.
* See. Amelia Dell ‘Anno Chap:Social Perspectives on Disability. In «Debates and perspectives on disability in Latin America» pp22. http://biblioteca.clacso.edu.ar/Argentina/fts-uner/20171107061404/pdf_468. pdf
[4] http://bibliotecapopularyparlantenuevoser.blogspot.com/
[5] For the purpose of the present Convention, the expression ‘Discrimination against Women’ includes any distinction, exclusion or restriction based on sex, on the basis of diminishing or denying women recognition, enjoyment or exercise, regardless of their marital status, based on men and women equality, human rights and freedom regarding political, economic, social, cultural and civil rights. The convention on the Elimination of Discrimination against Women (passed by UNGeneral Assembly in 1979, came into force in Argentina in 1985, Law No. 23.179,becoming part of the constitution in 1994)
[6] María Mercedes Monjaime «Sexuality without barriers. Sexual and reproductive rights of persons with disabilities» INADI. Year 2015. pp17. https://www.argentina.gob.ar/sites/default/files/sexualidad-sin-barreras.pdf
[7] See. Report on violence against women, its causes and consequences, Document No. A / 67/227 (2012).
[8] See. https://www.un.org/spanish/disabilities/convention/qanda.html
Convention on the Rights of Persons with Disabilities:
https://www.ohchr.org/SP/ProfessionalInterest/Pages/ConventionRightsPersonsWithDisabilities.aspx https://www.un.org/esa/socdev/enable/documents/tccconvs.pdf
* Convention background: Inter-American Convention for the elimination of all forms of discrimination against persons with disabilities (OEA, 1999), approved in Argentina by Law 25. 280 (Year 2000).
[9] http://servicios.infoleg.gob.ar/infolegInternet/anexos/140000-144999/141317/norma.htm
http://servicios.infoleg.gob.ar/infolegInternet/anexos/235000-239999/239860/norma.htm
[10] Except when competent authorities, subject to a judicial examination, determine according to the Law and the applicable procedures, that the separation is necessary for the greater interest of the child.
[11] ‘Discrimination due to disability’ will include any distinction, exclusion or restriction due to disability that has the purpose or effect of interfering or withdrawing there cognition, enjoyment or exercise (based on equality of condition) of every human right and fundamental freedom in every political, economic, social,cultural, civil or of any kind. It includes all types of discrimination, among them, denial of reasonable adjustment (Article 2, International). Convention on the Rights of Persons with Disabilities.
[12] Concluding Observations of the Committee on the Rights of Persons with Disabilities 2012.
See; Women with disabilities (article 6) pp3. Protection from exploitation, violence and abuse (article 16)pp5. Respect for the home and family (article 23) pp6.
https://www.agro.uba.ar/sites/default/files/discapacidad/crpd-c-arg-co-1_sp.pdf
Concluding observations of the Committee on the Rights of Persons with Disabilities 2017.
See Women with disabilities (article 6) pp6.
[13] See, http://servicios.infoleg.gob.ar/infolegInternet/anexos/255000-259999/257649/norma.htm
[14] See. Agustina Palacios, Lecture on «The configuration of support systems in the context of universal accessibility and reasonable adjustment» Madrid Sin Barreras http://bit.ly/2ialv1B
[15] See. http://www.incluirsalud.gba.gob.ar/ – https://www.argentina.gob.ar/acceder-al-programa-federal-incluir-salud
[16] http://servicios.infoleg.gob.ar/infolegInternet/anexos/45000-49999/47677/norma.htm
http://servicios.infoleg.gob.ar/infolegInternet/anexos/150000-154999/151986/norma.htm
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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 (Oxfam Intermón and Fundación Gabo de Periodismo Iberoamericano)
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.
-For a detailed Spanish version of this text, please contact me by e-mail-
Constanza Portnoy