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Journalist Vicky Bendito tells us about her personal experience marked by the challenges of being born with Treacher Collins syndrome
When my mother brought me into the world, the diagnosis they gave my parents was that I was “retarded”. I wonder what would have happened to me if they had gone along with that diagnosis, if I had not had a stimulating environment around me, if I had not been born in a European country.
I was born with Treacher Collins syndrome, a rare, disabling and incurable congenital craniofacial malformation that affects two out of every 100,000 people. Those of us who have this syndrome are born without cheekbones, with microtia (that is, without one or both ears), the jaw does not grow, we have a very narrow pharynx and, sometimes, we are also born with an open palate, which gives us a highly characteristic face and causes various problems – with our eyes (dryness and ulcers in the cornea), digestion (we cannot eat well), breathing (apnea) and hearing (deafness), among others.
After they recovered from the initial shock of the diagnosis, my parents were clear that they had to make me an independent person. They took me to a special education school, where they gave me my first hearing aid and a lot of speech therapy classes and taught me how to lip read. By the time I was eight or nine years old, I was going to an ordinary school where I passed my exams with a little luck, but without any special technical support beyond my retroauricular hearing aid and sitting in the front row to better hear the teachers.
I remember my childhood as being happy, with my siblings, friends, summers in the mountains, cousins, a horrible adolescence, after which a relatively satisfactory stage arrived. There have been two clearly distinct phases in my life: one in which what weighed most heavily on me was my face, that physiognomy that I felt comfortable with when I looked in the mirror but that caused rejection as it did not comply with the imposed ideas of beauty, and, another, in which what weighed most heavily was my disability.
The first occurred when I was a teenager, the second became apparent when I joined the world of work. Who in their right mind, having been born deaf, would think of becoming a journalist? Me! I have been working for 25 years now, 20 as a journalist for a news agency and five in the communications department of a large company that has inclusive employment as one of its principles.
During these years I have become aware of how ahead of their time my parents were, because I was born at a time when people with disabilities were considered a family misfortune and a drag on society (invalid, deformed, useless, abnormal or deficient are some of the nouns with which they referred to us). Throughout these years, I have been aware of how lucky I was to be born in a European country, and how unfair it is that your life is so different because you have a condition that you have not chosen and you live in a certain place.
For me, the determination of my parents was essential to me becoming the woman I am. Someone recently told me about the case of a deaf woman who was almost 30 years old, who uses hearing aids, but hears very little and who has been so overprotected all her life that she did not go to university, nor did she learn sign language, she has an unskilled job and does not know how to do anything without her family. She is much younger than me, a daughter of democracy, European, born in a society that has been changing its views about disability, where there are laws that have been passed throughout our history for our rights. She had factors favouring her personal development, but her family, that fundamental pillar in the development of any child, but especially those with disabilities, has made her incapable. It is not the only case that I have heard about. And it hurts. It hurts that these things continue to happen in European countries, and if they are happening in Europe, what must be happening in less developed countries?
Some 15% of the world’s population has a disability, more than 80% are poor, 50% of people with disabilities do not have access to health care, a very small percentage work (it varies from one country to another), and I won’t even go into whether they have a job with a decent salary or not. The vast majority of the more than 1 billion people with disabilities in the world live in developing countries.
Disability is a condition that we did not choose to have, it is a condition that is a factor in impoverishment, discrimination and inequality throughout the world because, even in the most advanced countries there are many barriers, the biggest being the lack of accessibility, which prevent our inclusion, our participation in society as full citizens.
I have a disability, I have an independent life, I have been able to study and I continue to do so, I work in the profession I chose, I have access to health care … but I am the exception, not the rule. A painful and embarrassing exception difficult to understand. And when I take a look at the statistics, I can’t help wondering what would have happened to me if my parents had settled for that unfortunate first diagnosis, that “your daughter is retarded”.
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Since 2018, International Sign Language Day has been commemorated on September 23 and we at FIIAPP wish to join this celebration by showing the current situation of deaf people and how this disability and sign language have been welcomed by states and society
According to the World Health Organization (WHO), “466 million people worldwide suffer from disabling hearing loss, 34 million of them children.” Disabling hearing loss is understood to be a hearing loss greater than 40 dB in the better hearing ear in adults, and greater than 30 dB in the better hearing ear in children. In this regard, the WHO emphasises that the majority of people with disabling hearing loss live in low- and middle- income countries.
According to the World Federation of the Deaf, there are approximately 72 million deaf people worldwide. More than 80 percent live in developing countries and, collectively, they use more than 300 different sign languages.
Turning to specific figures, in the European Union, France is the country with the largest number of sign language users with 300,000, followed by Spain with 100,000 and the UK with 77,000.
The CNSE Foundation emphasises that the “deaf community forms a linguistic and sociocultural minority and sign language is the element of cohesion in this group”. But what do we mean by deaf community?: “With the term deaf community we refer to the social fabric formed by deaf people who use sign language and share experiences and goals. They are people with awareness of a common identity that maintain an individual commitment to the group, cooperating in one way or another with it,” says Amparo Minguet, vice president of the State Confederation of Deaf People (CNSE).
“Sign language was frowned upon; the educational system did not allow it to be learnt. Our group has been shackled – and I do not say it figuratively – throughout its history. But society, which in the past hid us away and was ashamed of our natural language, has changed,” acknowledged Luis J. Cañón, former president of the State Confederation of Deaf People.
Starting in the 70s, various groups of people reclaimed sign language and culture. Different scientific disciplines, through studies and research, ratify the existence of this language and its culture, thus giving importance to the preservation of its cultural values and traits.
The situation of sign language in different countries
Currently, there are eight states that officially recognise sign language in their constitutions. Other countries have opted for state recognition of sign language implicit in the development of legal rules and public policies, generally in education.
In 1988, the European Parliament unanimously approved a resolution asking all countries to recognise sign language.
In the case of Africa, countries such as Uganda, Kenya and South Africa have recognised it and provided the deaf community with the necessary resources for their inclusion.
Central America and Latin America for their part currently have integration policies for people with disabilities.
Also, New Zealand considers sign language as an official language, unlike Turkey, which has no official recognition of it.
International Sign Language Day
The United Nations General Assembly denotes September 23 as International Sign Language Day. This international day was observed for the first time in 2018, when the Assembly established that “early access to sign language and to services in this language, including quality education in that language, is vital for the growth and development of the deaf and critical for the achievement of the sustainable development goals.”
The Assembly also emphasises the importance of considering and applying, focusing on the issue at hand, the principle of “nothing about us without us.”
The World Federation of the Deaf (WFD), consisting of 135 national associations of the deaf as representatives of approximately 70 million deaf people worldwide, was responsible for proposing that International Sign Language Day be held on September 23. This date was chosen in order to commemorate the establishment of the WFD in 1951 in Rome.
Convention on the Rights of Persons with Disabilities
The Convention on the Rights of Persons with Disabilities (CRPD) is a United Nations international human rights instrument designed to protect the rights and dignity of persons with disabilities. This is the first human rights convention open to signing by regional integration organisations in which a paradigm shift in attitudes and approaches to people with disabilities is established.
2030 Agenda and the SDGs
The fundamental principle of the sustainable development goals (SDGs), agreed in the 2030 Agenda, is ‘leaving no one behind’. In this sense, a new model has begun to be developed that takes into account the diversity of abilities in society, focusing on women and girls with disabilities, since they are at greatest risk of vulnerability and social exclusion. As highlighted by the Spanish Committee of Representatives of People with Disabilities, CERMI, there is increasing debate on such matters as “the relationship between disability and poverty, the contribution that people with disabilities can make to the rest of society, the relationship between disability and technological development, and others.”
Both society and institutions must come together to convey the needs of people with disabilities to improve their current situation. In this sense, international cooperation plays an important role in carrying it out, since it is a primary tool so that governments give visibility to this sector of society.
SDG 5 on gender equality, SDG 4 focused on quality and inclusive education, SDG 8 on decent work and SDG 10 on reduced inequalities are closely related to the importance of inclusion of people with disabilities. Likewise, if we talk about inclusion, we must highlight SDG 11, on sustainable cities and communities, in which the concept of universal accessibility must be integrated when making essential infrastructures in basic health services.
Bridging the Gap
FIIAPP manages the project Bridging The Gap, funded by the European Union, the objective of which is to reduce the social exclusion of people with disabilities in middle- and low-income countries in Africa and Latin America. The beneficiary countries of this project are Ecuador, Paraguay, Burkina Faso and Ethiopia.
According to the permanent secretary of the National Multisectoral Committee for the Protection and Promotion of Persons with Disabilities in Africa, Boukary Savadogo, at the annual event held by Bridging the Gap in November 2018 in Madrid: “in Burkina Faso people with disabilities are not welcome”, but to improve this situation, this country “is aligned with the SDGs and the 2030 Agenda”.
Bridging the Gap also contributes to the commitment to encourage and promote the social, economic and political inclusion of all people, the aim of the tenth Sustainable Development Goal.
