LIVING WITH DWARFISM - PUERTO RICO
My name is Brenda Martinez from Puerto Rico. I’m 52 years and I have a daughter who is 24. Currently I work for a Pharmaceutical company as Documentation Specialist in the Quality Assurance department.
When I was born the Doctors said that I wouldn’t grow as other people and although my parents consulted many Specialists in the island, none of them explained why or what caused my dwarfism. At that time we faced a lack of medical information for the dwarf conditions in my country. It was when I was 25 years old that the Doctors of LPA diagnosed that my type of dwarfism is SED. Currently is easier for parents who have children with dwarfism to get updated information on the subject through their doctors and the Internet.
My childhood was as equal as my younger sister’s because my parents never had a different or best treatment for me. I grew up knowing that I was a little person and never felt bad or mad at that. At home everything was “normal” but outside was not the same. When we went out for shopping or just have fun, people always stared at me and said comments. Sometimes were harassed comments, which I try to ignore, but most of them were blessings comments, and that still happens.
I recall all my student life being in the same school and having the same friends. But when I was 16 years old my family moved to a different town, meaning a new school. My sister was in Middle High School with a morning schedule and I was in High School during the afternoon and she offered to check the locations of my classrooms to facilitate the process to me. When I arrived at school I didn’t find her, so I decided to go by myself. As soon as the students noticed my presence they were very curious and started to follow me. At some point I had all of them around me asking many questions and some of them laughing at me. The teachers came and took me away from them; later the Principal went to each classroom to speak with the students and explained that they must respect me. I was so sad and didn’t want to return to that school, but I had no choice; my parents spoke to me and asked me to ignore the students if they do that again. They also encourage me to continue pursue my goals and not to give up. The next day I returned to school without any other problem. Everything was so good since then and at the end I was selected as the Queen of my senior class. I have been always very thankful for my parent’s advices; they always have been very supportive. Always I have thought that this kind of things was a cultural issue being from a small island in the Caribbean, but as I have knew people from other countries I have discovered that the same issues are all over the place, in more or less grade.
The way people in my country see little people varies from one person to another. Some people react surprisingly, other demonstrates affect immediately, others search for answering their questions about our day to day life, but there are a few that can tease about us. This has been changing through the years and lately the media has helped a lot to change the negative mindset. In Puerto Rico we still have people with dwarfism who avoid meeting other little people, maybe because they don’t like what I call the “mirror effect”. Most of them haven’t received good support from their family and maybe have bad experiences in the past with bullying. These issues had cause for many older people with dwarfism to remain hidden from the rest of the world. But, in the last few years a change has been noted in the new generation of little persons, as most of them are looking for a better academic and professional future. I believe that definitively this will have a very positive impact among our community and will increase new opportunities for us, as they will be able to demonstrate that we can be and do the same things of average height people but maybe with some adjustments because of some limitations.
Our attitude plays a big role in the way we will be treated by others. Because of that, we must treat ourselves with respect in order to others to respect us. If average height people learn that little people are as equal as they are, our next generations will live in a better society, not only in PR, but across all the countries.
Being born and raised as a little people in PR in general, has been challenging because of the mindset and the architectural barriers, but the best thing about being little is the love and support from my family and the friendship I get from the average height people once they meet me. I’m aware that people need to be educated in relates to dwarfism, since they have many misconceptions on why this happens or what things we can do or not. In my case I have met people that became surprise when they find that I work or drive and even more that I am a mother. That kind of things makes me feel sometimes angry and sometimes frustrated and brought me to confirm that despite all the work LP’s organization are doing through our countries, still much work to do.
I think that people needs to learn and understand that we are as equal as any other person. We need support and respect from them but that only will be achieved with our commitment to continue educating the world about who we are, what we need and above all, we must value ourselves while we achieve our goals.