Berna Cortez is a native of Ecuador born with Muscular Dystrophy (MD). At the age of 32 she is living independently, working at the Independent Care System (ICS) in New York City as the Membership Coordinator for Transportation and Wheelchair Assistance and is a student at the Bronx Community College. Her greatest aspiration is to get her degree to become a Social Worker.

LC: When and why did you come to live in the United States?

BC: My family immigrated to New York because in Ecuador there were limited services and technical equipment for people with disabilities. One example was that before my sister was diagnosed with MD my parents took her to doctors in Ecuador to diagnose her. The doctors were not able to identify her illness so they were doing all kinds of tests and experiments on her. When she went to the hospital she was still walking and when my parents took her out she could not walk anymore.

Since my sister and I were both born with MD, my father knew that we would need better services and he did not feel that we would get it or were able to afford these services in Ecuador. The motorized wheelchairs were so expensive that my parents could not afford to buy one let alone two.
My family and I came to US in 1996. My sister and I were both living with our parents. I first went to study English at the Spanish American Institute. It is difficult to learn English, especially the grammar part.

LC: How did you find out about ICS?

BC: Actually my sister was the first one to apply for the services at ICS. I found the services the center was providing my sister were very helpful to her, so I also joined the center because I wanted to learn how to do things for myself.

While living at home, I was working at the Bronx Museum as an administrative assistant. It was hard to get that job and after I started my family decided they were going to move to North Carolina. It was difficult to find a job in North Carolina so I came back to New York and contacted the ICS. They gave me a clerical job. I have now been with ICS for two and one-half years and my life has completely changed for the better. Because of ICS I now live independently, I have been promoted to Membership Coordinator for Transportation. In addition they are providing me with a grant to go to school after work.

LC: Tell me about your childhood and life in Ecuador.

BC: My live in Ecuador was very simple. Our family never treated us like we had a disability. I had a nice childhood. I lived in an environment where I never felt that my sister or I were different.

My sister and I are the only two in the family who have MD. The doctors say that MD could be genetic but there is no one else in our family that we know of that was diagnosed with MD. My sister is older so she was the first to be born with it.

In school it was a different story at first. I went to a mainstream school and it was different with the other children. Some of them asked questions like "Why you don’t walk? Why you can’t play with us?" Most of the time I just sat in the classroom and spoke only with certain friends, because some of the other children were mean and liked to embarrass me. They made sure I knew I was different and could not be involved in their activities. Many times I came home and told my mother about what had happened and my mother always told me "Don’t worry Berna they will change their attitude toward you and will learn to accept you as you are." She always tried to reassure me that I was not different but special and that they would also learn that eventually. Until this day I believe that about myself.

Independent Living
LC: Why was it so important for you to live independently from your family?

BC: The most important factor is that I always knew that my parents were not going to live forever and that I had to be strong and learn to survive on my own. Being independentl makes me feel strong and I feel that I can do anything if I put my mind to it.

LC: How did your family react when you told them that you were moving out and would be living on your own?

BC: Although my family is very supportive of my goals and wishes when it came to letting me live on own it was a very different story. I had to fight with them to make them understand that I am able to live independently. I guess it may be more difficult for them because they live in North Carolina and I am living in New York. When I first told them that I was going back to New York, well you can imagine their reaction. But now I have shown them that I can and am able to do more than what they thought and I know they are very proud of me.

Barriers, Past and Future
LC: What would you say are the biggest barriers that people with disabilities have to face?

BC: To find a job is the most difficult barrier for persons with disabilities. For me it was especially difficult in North Carolina and that is why I came back to New York. I have been to many interviews that I felt I was qualified for, but once the interviewer saw me sitting in a wheel chair their face showed immediately that they did not feel that I could do the job. When I saw the negativity in their eyes I knew that they were not going to call me back although they told me they would.

The main barrier that I will have to overcome is to get my degree. I am going to Bronx Community College and have one more year to go to get my degree. I have set myself the goal to become a Social Worker and although I am not an A student now, I know that I just have to work harder and I will get my degree. I know that it will be hard because I am going to college full-time and working full-time so there is not much time for studying.

LC: Do you feel that independent living is right for all persons with a disability?

BC: Yes, to some degree I feel that we all have potential and need some degree of independence. As I said before, our parents will not live forever.

LC: How do you feel when someone who has a disability and will not attempt to do anything but depend on their parents?

BC: When I meet someone with a disability that refuses to live independently or is not attempting to reach any goals because they use their disability as an excuse I want to tell them that their disability is not an excuse. I tell them they shouldn’t let their family run their life. My sister is a good example. She refuses to live on her own. She is older than me and her MD is a little bit more severe than mine. She uses that as an excuse. I have tried to convince her that if she moves out she will learn that there is so much more that she is capable of. But her mind is set, and it may have to do with my parents catering to all her needs.

I am a positive person, when I want something I will try and will not give up until I accomplish it. When everyone told me I could not, I said I could and would. I feel that we can all accomplish our dreams, may be not all but many of them and that is the biggest self reward when you accomplish one of your dreams, no matter how small.

My parents now feel that I don’t have a physical disability because I have shown them that I can defend myself and live on my own and have realized my dream. Now they know.