CBE has already changed ten-year-old Rehema’s life. She has been enrolled at Mukuru Kwa Njenga Primary school in Kenya under the care of teacher Samuel Isaboke. He visits to her home at least three times a week to support her parents in educating her.
In line with the holistic approach of CBE, Rehema has been provided with physiotherapy sessions three times in a week to complement the therapy being provided by her parents and teachers. Her mother comments: “Sense International has helped my daughter a great deal. My daughter’s life has been transformed by this project. Rehema’s communication skills have improved and she is making very good progress in her mobility skills too.”
1 l .senseinternational.org.uk. Sense International is a small corporate member of DbI.
Sense International (East Africa) has programs in Kenya, Tanzania and Uganda.
2 l .biglotteryfund.com
“Everyone is in the sphere of power”
How Sense International (Peru)’s1 strategic approach to advocacy meant that deafblindness is now recognised in law.
This article describes the strategic goals and activities developed by Sense International (Perú), which led to the creation of Law N° 29524. This recognised deafblindness as a distinct and unique disability for the first time – and set out provisions for the care of deafblind people. This success has led to the development of a series of private-public partnerships to deliver programmes and services as defined by the deafblind people.
“Everyone in the sphere of power” was the core principle that Sense International pursued in order to achieve its goal of getting recognition and the full implementation of the rights for deafblind people in Peru. Everything had to emanate from the needs and demands of deafblind people and their families and be directed by a core group of key stakeholders who worked together to form the necessary critical mass. Sense International (Peru) built on this platform to develop its advocacy strategy with:
1. A clear definition of what we wanted to achieve,
2. The identification of allies, opponents and adversaries,
3. Clearly distinguishing and defining the proposal from among the different alternatives
4. Agree on the approach and activities,
5. Agreeing on a strategic communication plan (including key messages, definition of brand, use of images etc.)
6. Agreement on the indicators we would use to monitor the process.
Because the existing law on disability (Law N° 27050 “General Law of Disabled Person”) did not recognise deafblindness in any form, there was extremely limited statistical data on the needs and numbers of people who were deafblind2. The first requirement of our Advocacy Campaign therefore, was to achieve recognition of deafblindness as a unique and specific disability – and to identify the specific requirements of deafblind individuals, as opposed to those with other sensory disabilities.
Our partners & our approach
The second step was to influence and involve key actors who could identify with the cause and were opinion leaders and especially those with senior decision making power. Following the development of a layered stakeholder analysis and agreed approach, in 2008 we utilized our close contacts and allies within the Peruvian Parliament to obtain a series of meetings with Mrs. Auriestela Obando, Chair of the “Fifth Committee on Social Affairs and Human Development of the Andean Parliament”.
At this point, Peru had recently ratified the United Nations Convention on the Rights of People with Disabilities (UNCRPD)3 and was one of the first countries to do so. The climate for advocacy for the rights of people with disabilities was therefore very positive. In the meeting we discussed how important it is that deafblindness is recognized – and the consequences for individuals of its absence in national legislation. An important part of this lobbying was also to share experiences from the Parliaments of the European Union, Spain and Columbia which all recognize deafblindness in their legislation. Following this lobbying exercise we received a formal request to prepare the draft law for recognition of deafblindness as a single disability. This draft was then discussed and adopted by the Andean Parliament and, subsequently, published with the Decision N° 1217 in the Gazette of the Andean Parliament by June, 2008.
This was a significant strategic achievement.
The decision by the Andean Parliament called upon its members (the Andean Community of Nations; Bolivia, Colombia, Ecuador, Perú and Venezuela) to individually adopt legislative, executive and administrative measures that would lead to the national recognition of deafblindness as a single disability – and to call on them to implement specialized services to meet the needs of this group of people in social policy areas such as education, health, employment promotion and human development.
As said, this precedent was a crucial prerequisite to start working at national level and to involve more personalities – such as the Congressman of the Republic and President of the Special Commission on Disability of Congress, Mr. Michael Urtecho Medina, who is also a disabled person.
Based on the concept of “legal capability” which should guarantee respect for the dignity, freedom and autonomy of persons with disabilities, covered in article 3 of the UNCRPD4, Sense International (Perú) convened several workshops and meetings of young people and adults with deafblindness that allowed us to collect and consolidate proposals that came from their demands, needs and life expectations. On 24th June 2008, the first draft of the Peruvian Bill on the recognition of deafblindness as a unique disability was presented by a group of 20 young people with deafblindness in the Peruvian Congress of the Republic – being finally approved and published in the official journal “El Peruano” on May 2nd, 2010, as the Law N° 29524.
This Law was a watershed moment in the achievement of our objective “of obtaining recognition as well as the full implementation of the rights of deafblind people in Peru”. Not only did the national legislation recognize deafblindness as a unique disability and regulate for the provisions for the care of deafblind people in Peru, it also recognized the official communication systems (sign language, Braille and Dactilology), and also recognized the obligation to provide guide interpreters for deafblind people.
With the new law and, subsequently, its regulations approved by Supreme Decree N° 006-2011-MIMDES, Sense International (Perú) continues to engage and work constructively with public sector groups to help them to fulfil their legal obligations.
For instance, with the Peruvian Ministry of Education, a nationwide survey was conducted into alternative communication systems. This led to the recognition and validation of seven alternatives communication systems for deafblind people. Furthermore with the Ministry, SI Peru has developed and delivered a series of tailored education training programs specifically addressing the skills development of special needs education teachers, the development of deafblind materials and curriculum adaptations.
Recently, evidence of our advocacy success came when the Ministry of Education appointed Mrs. Genoveva Mejía Farro as the first Latin American specialist in the field of deafblindness in the General Direction of Special Education. At the same time we are now developing a series of similar strategic activities with other national Ministries including: the Ministry of Health, the Ministry of Labour, and the Ministry of Women and Vulnerable Populations. For us this confirms: the sustainability of our approach towards deafblindness, the quality of our relationship with key ministries, and the success of our initial strategic approach.
The unique way to achieve a positioning of deafblindness in our country has been through the process identified earlier in points 1 to 6 above. Once the goal had been determined, critical to our success has been the situation analysis and understanding the advocacy environment as well as the identification of opportunities to influence decision makers and to change legislation. Through the search for spaces where the voice of deafblind people can be heard, to ensuring that SI Peru had the skills and capacity to deliver support once the legislation had been passed we recognise that building and working closely in partnerships with key stakeholders was critical to enhance our capacity and to put the plan into action.
It is true that the work has really just begun and the challenges ahead are many and varied. However, we know that the quality of the organization, planning, mobilization and proposal will have a direct impact on deafblind people’s lives and their families, so that they can achieve their goals.
Kiomi Parraga, Project Assistant, Sense International (Peru)
For more information contact Ricardo Zevallos (firstname.lastname@example.org)
1 .senseintperu.org. Sense International (www.senseinternational.org.uk) is a small corporate member of DbI.
2 The First National Survey of Disability, in the country, was developed by the National Institute of Statistics and Informatics (INEI) in 2012, where it is determined that there are 1 575 402 people with disabilities in Peru, which means 5.2 % of the total population. file:///C:/Users/User/Downloads/resultados.pdf
4 Article 3 principles of the present Convention shall be: to) respect for inherent dignity, individual autonomy, including the freedom to make their own decisions, and the independence of the people. This Convention was issued by the United Nations and ratified by the Peru on January, 2008.