Interview with Benjamin Mejía, artist & activist from El Salvador

Who are you and what is your relationship with OI?

I am Benjamin Mejía, I am 28 years old and live in the City of San Salvador, Capital of the Republic of El Salvador, Central America; Currently I am a Fourth Year Student of the Architecture Degree at the University of El Salvador. I have OI type I.

When I was born, my parents were told I would never walk. But thank God, at the age of 28, I can walk without the help of orthopedic devices, even if I have some walking problems due to previous fractures. For a couple of years, I received Fosamax, to strengthen my bones. And fortunately, I have recovered from all my fractures. At the age of 14 I began to have hearing loss, which progressed. Currently I use intracranial hearing aids, which I can control with an app on the phone.

How is the situation of people with OI in El Salvador?

Unfortunately, most people with OI in El Salvador have low income. The majority of people with OI are excluded from society because of their disabilities. In El Salvador there are few people with OI who manage to study, complete high school or a university career. There is no registry of people with OI in the country, nor demographic data of people with OI or other disabilities in general. The only thing that exists is a group of children who receive intravenous medicine from time to time at the Benjamin Bloom National Children’s Hospital, in San Salvador. Most of these children have few economic resources, and sometimes they receive donations to pay for the medicine. But I am sure there are many cases, to which the help does not reach.

Do you have an OI-organization or group in El Salvador?

There is only a group on Facebook called Osteogenesis Imperfecta El Salvador, but it is made up of parents of children with OI. Personally, I only know two adults with OI. I tried writing something in the newspaper to create awareness on Wishbone Day. But the newspaper chose a completely different angle which didn’t focus on OI at all, something which made me both angry and disappointed. This made me give up on projects related to OI for the time being. But I can try again if there are other adults with OI in El Salvador who would be willing to help. In the meantime, I am involved in general disability activism promoting human rights for people with all kinds of disabilities.

We have heard that you have been involved in disability advocacy lately?

In November 2019 I graduated from the first training in Politics, Public Policy and Governance given to young people with various disabilities. The purpose of this training was to train leaders who would be agents of change for the benefit of people with disabilities, thus enforcing Article 32 (Right to Participation in Political and Public Life) ” in the Special Law of Inclusion of Persons with Disabilities of El Salvador which has been in force since 1 January 2021.

Unfortunately to date, our Law, although it is already in force, does not have an assigned budget to be executed or an implementation plan, to secure the fundamental human rights of people with disabilities in El Salvador. In December 2020, I graduated from a training in public policies and Sustainable Development Goals of the 2030 Agenda (SDG 2030), which at the global level, nations and states parties intend to meet by 2030. It was a training for young people who are involved in political and social advocacy, and I represented the voice of disabled students together with one other person. Leave No one Behind! In June 2021, I obtained a scholarship to study Human Rights and Advocacy, from which I successfully graduated on December 3 of this year 2021.

What do you do as an artist?

Art is more of a hobby of mine. But I do practice a Pencil-Based Sculpture Technique. This mean I cut and paste coloured pencils and create small sculptures from them. I was part of an art contest in 2012, where the use of BIC products was requested. In the Creativity Category we had to create a sculpture with any product of that brand, based on the theme of the contest, which on that occasion was: My Country El Salvador. The next year the topic was My Family. I won the first price both years. After that I have created various sculptures, some with a patriotic character, and others with a character of awareness and Inclusion of people with Disabilities. You can follow me on Instagram @bengi_mjart

What kind of artwork do you like to make the most?

Those that leave a message of awareness, and those that recreate objects of Nature.

What role does the artist have in society?

An Important role, because through art we can express emotions, transmit positive messages, social awareness and leave a legacy to society.

Do you have a message for the readers of the OIFE Magazine or for OIFE?

A phrase that I want to share with you is the following: “People like birds are different in flight, but the same in their right to fly”. Let us remember that the most democratic states are those that respect human rights. People with disabilities in general are subject to rights, therefore, everyone’s job is to respect, raise awareness, and fulfil the human rights of people with disabilities.