Interview with Andrea Medina, Representative of OIFE’s Associate Member Chile

Who are you and what is your relationship to OI?

I’m the founder and chairwoman of the board of Fundación de Osteogénesis Imperfecta Chile (FOICH). I have OI myself, and that is why my interest was born in creating an organization that brings together people with OI in the country.

In what way does OI affect you personally?

I’m a woman with OI and OI is part of my life. From a very young age I’ve been aware of my condition, and to a large extent, it defines who I am. I’m fortunate to be able to do the things I’ve wanted, always considering the OI as an important part of me, of my essence.

Can you tell us a little about how and where you live?

I live in Santiago, the capital of Chile, but I was born and raised in Rancagua, a city 90 km south of Santiago. I moved for my university studies and stayed here for work and for its accessibility, which is the best in the entire country (although there is still a long way to go). I live in the heart of the city, a place full of buildings, offices and businesses. It suits me because from this place I can easily get to any point in the city. It may be a little noisy, but it suits me quite a bit.

What do you do when you’re not doing OI-work?

I’m a journalist and I have a Master’s in communication. I’ve developed my career in the digital area and social networks. I’ve specialized in issues of diversity, equity and inclusion, with an emphasis on promoting the rights of people with disabilities, access to information, independent living and accessibility. Currently, I divide my time between FOICH and my media channel Integrados, www.integradoschile.cl. The channel was founded by me and is focused on disability. Among my hobbies, I love reading, watching series and traveling.

Are there things you have to struggle with in daily life?

Life after the start of the pandemic has changed a lot. Before, I worked in an office near my apartment, I walked to the office every day, I also went out to do some small purchases and met with friends. With the pandemic I started working at home and I don’t go out much anymore. I have had to adjust my routine, because only last October, the last Covid measures were lifted in Chile, such as the use of masks in public places and the limit on capacity in public places.

All of this has meant that I have changed my routine and decided to make changes in my life, leaving my job to dedicate myself completely to OI and people with disabilities. Because of all of the social consequences caused by COVID-19, we must add that in Chile people with OI must fight for the lack of accessibility in different areas and above all, for the lack of social security. This influences the quality of life that people with OI have, since basic things for our development are not guaranteed. This includes access to medical treatment, mobility aids (for example wheelchairs, canes, etc.), personal assistance and more.

In a few words – tell us a little bit about the organization you represent:

The Fundación de Osteogénesis Imperfecta Chile, FOICH, was created in 2017, due to the interest of five adults with OI and two of their relatives, since there was no organization in the country that brought together people with OI and their families. Today FOICH represents 145 people with OI and is run only by volunteers.

Ongoing projects/activities?

We want to make up for the time lost due to the pandemic, which affected every person in the organization and made our constant work weaker. The long quarantines and sanitary measures that limited capacity, as well as the same personal precautions to avoid the virus, meant that we did not have a constant job and now we see that things are changing for the better. Now we want to take advantage of the time by organizing various initiatives for 2023.

In your opinion – what is the most important job/task/area for national OI organizations?

We have the huge task of bringing together people with OI from our countries and representing their needs and requirements before public opinion, generating links beyond our borders, and finding new initiatives and opportunities that can help us. We are the voice of people with OI and our responsibility is to ensure a better quality of life.

Do you have any other messages for the readers of OIFE magazine?

We are very grateful for the reception from the OIFE to our organization. Personally, I had the opportunity to travel to Sheffield for the OI 2022 conference (see photo) and I was able to share with you, meet you in person, beyond video conferences and emails. The work and commitment of all the people who are part of OIFE is vital for us, you teach us with your years of experience and encourage us to continue working for the rights of people with OI.