03 December 2019
Posteado en : Opinion
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”.
26 September 2019
Posteado en : Reportage
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.
28 March 2019
Posteado en : Reportage
International Women’s Day has become one of the most strongly supported international days of the year. At FIIAPP, we are aware of the importance of gender inclusion in our projects and we are committed to an equality plan within the Foundation
Currently, around 7.55 billion people inhabit the planet. According to United Nations data, 49.5% of these are women, which translates into 3.71 billion.
There are many obstacles that women face by simply being women. The OECD report “The Pursuit of Gender Equality: An Uphill Battle”, shows that women are still at a disadvantage in all areas of life and in all countries with respect to men.
The Global Wage Report 2016/2017 prepared by the International Labour Organization (ILO) highlights that the wage gap increases as wages increase. According to data in a Eurostat report, in Spain in 2016, the gender wage gap was 14.9% compared to a European average 16.7%.
Likewise, of all the people living in extreme poverty, 75% are women and girls. Of the total number of children who do not attend school, 60% are girls and, although women account for half of the food produced, they only own 1% of cultivated land.
8 March, International Women’s Day
International Working Women’s Day was institutionalised by the United Nations on 8 March 1975 under the name International Women’s Day. However, the day was celebrated for the first time on 19 March 1911 in Europe, specifically in Germany, Austria, Denmark and Switzerland, and since then its commemoration has expanded to other countries.
Year after year, 8 March has become one of the international days with the greatest impact on society, as it has become a day marked by a global call-to-arms in which women join forces to demand gender equality and a fair society. An ever increasing number of men are joining in and becoming aware of the problem of inequality that women face.
“Gender equality is, fundamentally, a matter of power. We live in a world dominated by men, with a culture that is dominated by men. “Only when we understand the rights of women as a common goal, as a path to change for the benefit of all, will we begin to tip the balance“, the Secretary General of the United Nations, António Guterres highlighted in his message for World Women’s Day in 2019.
“Think equal, build smart, innovate for change”
In 2019, the slogan for International Women’s Day has been “Think equal, build smart, innovate for change”. This slogan places innovation by women at the centre of their efforts to achieve gender equality, since this requires social innovations that are valid for both men and women “leaving nobody behind“.
In a similar way to 8 March, women are also joining forces to raise their voices to advocate for gender equality through the #Metoo movement, which has become a protest movement that is active 365 days of the year. Through it, women around the world have had the opportunity to write about their experiences on social networks, reporting cases of sexual abuse and receiving support.
SDG 5: Gender equality
According to the United Nations, “gender equality is not only a fundamental human right, but the foundation needed to achieve a peaceful, prosperous and sustainable world“. In order to fulfil the objectives of the 2030 Agenda, gender equality has been included as the fifth of the Sustainable Development Goals . The wide-ranging aims of this goal include seeking to put an end to all forms of discrimination against all women and girls everywhere, eliminating all forms of violence against them, the adoption and strengthening of sound policies and the applicable of legislation to promote gender equality.
Likewise, people with disabilities also suffer from gender inequality, especially when it comes to access to education. According to Ola Abu Ghraib, Director of Research and Global Influence at the Leonard Cheshire Organisation, “mechanisms must be improved to integrate girls with disabilities into the education system, and to integrate gender into the 2030 Agenda”.
FIIAPP and gender mainstreaming
On the occasion of International Women’s Day, on 7 March, FIIAPP held a round table that was attended by the Government Delegate for Gender Violence, Pilar Llop Cuenca, and the Director of the Spanish Observatory on Racism and Xenophobia (OBERAXE), Karoline Fernández, who highlighted the discrimination suffered by immigrant women in our society. The conclusion of this debate was the importance of “mobilising and raising awareness about gender violence through education“.
FIIAPP wants to position itself as the first Spanish foundation active in the field of public sector cooperation to apply gender inclusion both internally and externally. The Foundation is, therefore, developing an equality plan that aims to offer the same opportunities to men and women within the institution.
According to Manuel Sánchez, a project technician with FIIAPP, the Foundation “has two main challenges: one is to include a focus on gender within the foundation with a plan and a specific programme for this, and on the other hand the responsibility we have as male and female workers to incorporate this into our projects.
21 March 2019
Posteado en : Entrevista
Today, 21 March, is the International Day for the Elimination of Racial Discrimination. To celebrate this date, we are having a chat with Lucía Molo, technician of the “Living without discrimination” project.
Today is International Day for the Elimination of Racial Discrimination. What do you think international days are for?
One of the objectives of the initiative promoted by the United Nations to mark international days in the calendar is to draw attention and raise public awareness to a problem. These are issues where there is still much work to be done, which is why they are the perfect excuse to remind society and governments that they need to act.
What is racial discrimination?
According to European Union regulations, direct racial discrimination exists whena person is treated less favourably based on their race, colour, language, religion, nationality or national or ethnic origin than another person in a comparable situation. It also recognises that discrimination can exist when people are treated differently in similar situations, but also when they are treated identically in different situations. This latter form of discrimination is called “indirect” because it is not the treatment that differs, but its effects, which affect different people with different characteristics in different ways.
Every day there are discriminatory incidents due to racial or ethnic origin, affecting refugees and immigrants, the Roma community, as well as other vulnerable groups. If we stop, for example, to read job vacancies, we are certain to find one which clearly specifies a preference for candidates of Spanish origin, thus excluding the foreign population.
How engaged do you think the population is with this issue? More or less than before?
I believe that society, generally speaking, does not intentionally or voluntarily discriminate against people of another race or ethnicity. Factors such as ignorance, fear of differences, prejudice and misinformation lead to discrimination. But I also believe that these situations arise as a result of insufficient political involvement that should, in my view, focus more efforts on prevention, public awareness and information.
In fact, the United Nations has acknowledged the rise in nationalist populism, with extremist ideologies of racial supremacy and superiority, thus producing more racist movements. In the latest UN Special Rapporteur’s report on contemporary forms of racism, racial discrimination, xenophobia and related intolerance of August 2018, she explains the contemporary use of digital technology in the propagation of neo-Nazi intolerance and related forms of intolerance. It points to recent trends and statements that exalt Nazism and other practices that contribute to the promotion of contemporary forms of racism, racial discrimination, xenophobia and intolerance.
How can discrimination be prevented?
First, the right to non-discrimination must be supported by legal safeguards that help to prevent this type of situation. In addition, information, training and awareness actions in interculturality and tolerance ethics must be reinforced . This goes for both citizens and government employees.
On the other hand, it is important that there be public policies that ensure non-discrimination. Spain has launched different actions in this regard: the creation of a Spanish Observatory on Racism and Xenophobia (OBERAXE) in the Ministry of Labour, Migration and Social Security, the creation of the figure of delegated prosecutors for hate crimes and discrimination within the General Council of the Judiciary, the implementation of a system to gather incidents related to hate crimes and discrimination in the Ministry of the Interior and the Assistance Service for Victims of Racial and Ethnic Discrimination of the Ministry of the Presidency, Parliament Relations and Equality .
Is FIIAPP working on this issue? How?
The FIIAPP works directly in the fight against racial discrimination through a delegated cooperation project in the Kingdom of Morocco called “Living together without discrimination: an approach based on human rights and the gender dimension” funded by the Emergency Trust Fund for Stability in Africa of the European Union. The FIIAPP and the AECID participate in its management . It also collaborates with Spanish and Moroccan institutions such as OBERAXE, the Delegate Ministry in charge of Moroccans Resident Abroad and Migration Issues and the National Human Rights Council of Morocco.
What is the purpose of this project?
The main objective of the project is to reinforce instruments and public policies aimed at preventing and combating racism and xenophobia towards the migrant population in the Kingdom of Morocco. It seeks to strengthen the capacities of key institutional and non-state actors (civil society, media, private sector …) in the implementation of initiatives to prevent racism and xenophobia towards the migrant population, through accompaniment, exchange and transfer of knowledge.
Any reflection on the subject to make us all think?
One of the reflections that emerged repeatedly during the workshop organised by the EUROsociAL + programme on human mobility on 19 March was that everything looks different when we put ourselves in the shoes of the other person .
I like the idea raised by the NGO Movement against Intolerance that there is only one race: the human race. If people began to see each other as sisters and brothers, I am sure that it would not be long before we no longer had reason to mark this day.
30 November 2017
Posteado en : Opinion
The Bridging the Gap project aims to contribute to the effective implementation of inclusive policies for people with disabilities in five middle and low income countries: Burkina Faso, Ecuador, Ethiopia, Paraguay and Sudan
According to the World Report on Disability published by the World Health Organization (WHO) and the World Bank (WB), disabled people make up 15% of the world population and 80% of these people live in developing countries. These figures make the link between disability and poverty more than evident. However, inclusive development, with its focus on disability, is not yet sufficiently integrated into international cooperation projects.
While developing countries are making great efforts to include the disabled population in the design of their public policies, in practice they still find many difficulties in implementing these policies due to a lack of economic and professional resources.
It is precisely this objective of contributing to the effective implementation of inclusive policies for people with disabilities that Bridging the Gap is pursuing. It is a European Union-funded project to promote the rights and effective inclusion of people with disabilities in five middle and lower income countries (Burkina Faso, Ecuador, Ethiopia, Paraguay and Sudan).
To do this, the project proposes specific actions in each of the beneficiary countries in accordance with the needs raised by public institutions and disability organisations in each country. In Burkina Faso it will focus on improving universal access to health for people with disabilities; in Ecuador, on the right to inclusive education for children with disabilities; in Ethiopia, on promoting an adequate standard of living and social protection for people with disabilities; in Paraguay, on improving the collection and processing of data on disabilities and on promoting inclusive education; and in Sudan on improving universal access to employment for people with disabilities.
The fact that five specific country actions are planned means that it will be possible to obtain visible results and, more importantly, it will allow all the countries to appropriate the results. Bridging the Gap hopes that the good practices generated by this project will be replicable, that they will be taken up thanks to a knowledge management strategy and could be projected at a global transversal level, promoting the mainstreaming of the inclusion of people with disabilities in international cooperation.
The five areas which the project is focussing on are included in the Convention on the Rights of Persons with Disabilities (CRPD), the international instrument for the protection of the rights and dignity of people with disabilities. Article 32 of the Convention establishes that the party States must ensure that all their actions within the framework of international cooperation, including development programmes, are inclusive and accessible to people with disabilities. In addition, the promotion of the rights of people with disabilities is reinforced by the Sustainable Development Goals of the 2030 Agenda for Sustainable Development and the new EU approved European Consensus on Development.
The inclusion of a focus on disability in international cooperation is, therefore, an urgent matter if the Sustainable Development Goals are to be effectively fulfilled and if nobody is to be left behind. Bridging the Gap will work to lay solid foundations to enable it.
The Bridging the Gap project will be officially presented next Tuesday 5 December in Brussels, as part of European Disability and Development Week (EDDW).
Carmen Serrano is the Communication Technician for Bridging the Gap II
07 September 2017
Posteado en : Entrevista
Olga Montúfar, president of the Fundación Paso a Paso and of the Global Network of Indigenous Persons with Disabilities, talks to us about her experience as an advocate for the rights of indigenous persons with disabilities
Olga was born 38 years ago in Mexico in the heart of the indigenous community of San Miguel Totolapan in the state of Guerrero. Polio left her with a motor disability that prevents her from walking.
An engineer by training, the difficulties she had to face in finding a job in her field led her to decide to dedicate herself to working to defend the rights of people with disabilities.
In July of this year she participated as an external expert in the opening seminar of Bridging the Gap II, a project funded by the European Union and led by FIIAPP aimed at contributing to socio-economic inclusion, equality and non-discrimination of persons with disabilities in low- and middle-income countries through institutional strengthening and more inclusive and responsible policies.
Participating in the project are three cooperation agencies of the European Union (Austria, Italy and Spain), a European organisation of persons with disabilities (EDF), a network of disability and development organisations (IDDC), the Directorate-General for Development and Cooperation of the European Commission (DG DEVCO), as well as the Finnish Ministry for Foreign Affairs and the United Nations High Commission on Human Rights, as observers.
What are the main problems faced by indigenous people with disabilities?
The main problem we face is that this dual identity often makes it unclear which administration is responsible for developing the public policies or the programmes to benefit indigenous people with disabilities. The indigenous people with disabilities themselves also experience this same confusion. Many people within the movement of indigenous peoples identify themselves only as indigenous and not as persons with disabilities, and vice versa.
In addition, our active participation is not highly visible, and often family members, lack of economic resources and lack of accessibility limit our participation.
In the case of women, there is also a situation of triple intersectionality and the risk of multiple discrimination based on gender, indigenous identity and disability. What are the specific challenges of this group? What progress has been made in the situation of indigenous women with disabilities?
Indigenous women mainly face the chauvinistic structures of our autonomous governments, educational backwardness and scant support from other indigenous women. These limitations are multiplied in the case of indigenous women with disabilities because the negotiations regarding their participation in society are initiated in their family environment, where our right to autonomy is often not understood.
What measures need to be taken to ensure that indigenous people with disabilities benefit from the protection of the CDPD (Convention on the Rights of Persons with Disabilities) in the same ways as other persons with disabilities?
The most important challenge is understanding the legal pluralism that exists within the indigenous systems and not falling into the trap of identifying indigenous communities with rural areas, because this is not always the case and leads, for example, to policies being designed for rural areas that cannot always be applied to indigenous communities living in urban settings.
The rural areas are governed by the legal instruments the State designs. In contrast, indigenous communities are governed by uses and customs established by their ancestors from their origins, and, over time, they gradually add new agreements for social coexistence suitable for new generations.
Additionally, it is necessary to make a rigorous interpretation of the United Nations Declaration on the Rights of Indigenous Peoples regarding the rights established by the Convention on the Rights of Persons with Disabilities. For example, the Declaration does not mention the issue of accessibility, but it does talk about the right to enjoy our territories, which requires that we have mechanisms that guarantee access to them.
Bridging the Gap II involves the participation of a European organisation for persons with disabilities (EDF) and a network of disability and development organisations (IDDC). How do you feel about the incorporation of civil society organisations in international cooperation projects?
Generally the organisations of persons with disabilities are consulted when the projects require our participation, but we rarely have the economic capacity to get to the places where the information and projects are centralised. That makes it more difficult not only to be consulted but also to participate as direct stakeholders in those processes. Therefore I think that it is a very good thing for civil society organisations to accompany the process or to somehow provide input on the life experience and solutions closest to reality.
You participated as an external guest in the opening seminar of Bridging the Gap II. Tell me about your experience at this meeting. What do you think the main challenges of this project are?
For me it was a wonderful experience because it was the first time I had been able to be present at the kick-off of a major project. I consider the main challenge of this and other projects that work on disability and development issues to be the ability to get good information from the fundamental stakeholders. That’s why it’s very important that the organisations of persons with disabilities or of indigenous peoples include indigenous people with disabilities who are still living in their communities of origin, because many of the social organisations and leaders in this field have never been in an indigenous community and they assume that the needs are the same in all of them. But every community is different, just as an indigenous community is not the same thing as a rural area or an urban setting.