It is with real pleasure that I introduce Beatriz Lemus from Venezuela to the Platform, to share her story with us.
I hope you enjoy learning about her life, as much as I did, and learn I did. Beatriz life is lived with tremendous successes, a multitude of daily challenges and lived with a disability not always understood by the world around her. Her story allowed me to gain an insight into a life lived communicating without spoken words, while providing care to others, and navigating complex medical and social systems.
I am thrilled that Beatriz was willing to allow me to share her story. It reinforced what I already believe; that disability is not a reason to underestimate the potential in us all.
Tell us about yourself
My name is Beatriz Lemus, better known as Bea. I am Venezuelan. I’m 33 years old. I am a doctor, a specialist in the area of Physical medicine and Rehabilitation. In addition to working as a doctor in my specialty, and being a pianist, I am a piano teacher.
My father is a pediatrician, my mother is a teacher, and I am the youngest of 4. My older sister lives here in Venezuela with her 2 children, and my 2 brothers live in Orlando Florida with their respective families. In total I have 7 nephews.
I live with my parents, because despite having professions and jobs, I depend in many ways on other people and my caregivers are currently (given the economic situation of the country), my own parents. I am not married, nor do I have a partner.
What has been your journey of disability?
I have moderate autism or level 2 autism, I am non-verbal, my communication is written, through an application on my tablet. It has not been easy, because not only is it my difficulty to communicate, but I also have hypersensitivity in my 5 senses. That is why this world is very noisy, stimulating and even harmful to me.
I feel like a little girl trapped by a condition but with an adult timeline and responsibilities.
People with Autism, since we do not have a certain physical form, pass as an “invisible disability”. We have infinite difficulties, social, communication, language, behaviours, and sensory disorders. Despite all the endless campaigns, it is still quite unknown. There are endless myths around Autism, within those myths is one that we could never achieve great things. Obviously if people continue to insist on our difficulties, and do not highlight our talents, it will be like wanting to plow in the desert.
What it was like going through the education system? Were there any particular challenges in entering the field of medicine that you faced because of your disability?
To enter a medical school, as a person with my condition was not easy, intellectually it was not the challenge, since my IQ is 195, the problem was exactly communication with others, and my sensory crises. At all costs they tried to get me out of the race but, despite all the limitations, my academic performance was excellent, and I think that my very structured way of seeing life made me have great diagnostic skills.
My brain is brilliant, intellectually above normal, but that is not the problem, there are many factors of the way my brain works, which makes everything so complicated. For me, an hour of work can amount to four hours of work for a regular doctor, in physical and mental wear and tear I mean.
Why? Because I have to strive twice or triple to understand what others say to me, to process and to be able to give an answer. I have to deal with endless stimuli, stimuli imperceptible for others but overwhelming to me. Many times, my brain falls into a kind of mental loop and there are words, phrases, images, or some dialogue repeated over and over again, and I can’t control it. Sometimes that feeling of being overwhelmed ends in “inappropriate behaviour” for example, I hit my head or start moving my hands a lot.
My psychologist was probably right! I shouldn’t study such a demanding career, but I wanted to try. It cost me a world, but I made it. It keeps costing me a world, some days more than others, but I keep trying to overcome myself, that’s the goal. One day I win the battle, others, maybe not. But isn’t that what life is about!?
Have you always had access to technology and how important has technology been for you in navigating your world/community?
No, I have not always had access to technology. When I was a little girl my communication was through pictograms, I had a kind of book done by my mother, it was divided by activities or situations, people, emotions and through those cards that had the drawing plus the word, it was my communication. Then Mom taught me to read and write and the communication was already mixed, some things I wrote them on a small blackboard and others I continued using my pictograms and as a teenager was all written on the board. I have had access to technology, that is to say with a tablet and it’s applications for 10 years.
Can you share with us your experiences with interpersonal relationships as a person living with autism?
Interpersonal relationships are extremely complicated. My relationships (outside of with my parents) are purely professional. I am not a person to have friends, I try yes, because I understand that these types of relationships are necessary, but I find it difficult to maintain them. I am already overwhelmed by daily socialization, because of my jobs, that I come home and what I want is to disconnect from everything.
However, I must say that there are special people in my life, that although I do not maintain contact so often, they are people that I like having them in my life, because they understand my way of being, they support me, they are there when I need them. They have earned a special place in what they say is “my world”.
I’m not submersed in my “own world” even if it always seem that way , I’m in this same world as you, I’m only focusing my attention on some details that I find fascinating or just trying to deal with some stimulus that is bothering me. The fact that this is happening doesn’t mean that I’m deaf either. I listen to what people say, although I can’t answer. Autism is difficult, yes, but its not a disgrace, ignorance and prejudice is – Yes.”
“I’m not submersed in my “own world” even if it always seem that way , I’m in this same world as you, I’m only focusing my attention on some details that I find fascinating or just trying to deal with some stimulus that is bothering me. The fact that this is happening doesn’t mean that I’m deaf either. I listen to what people say, although I can’t answer. Autism is difficult, yes, but its not a disgrace, ignorance and prejudice is – Yes.”
What can you share about the joys, challenges and attitudes you have experienced?
I am like a small girl, every day before my eyes it is like to discover the world again. I’m happy with simple things like smelling a flower, or see a rainbow drawing, still play with my pieces of Lego, or a puzzle.
I am happy when people recognize my talent, when I give a great concert. My attitude towards life is that, always as a child.
There will always be challenges, but I think you always have to try, if it’s something you want, if that’s your dream. Never saying “I can’t”, maybe I can’t do it the ordinary way, but what if I try to do it my way? What could result?
What would you say is your greatest strength?
My greatest strength is perseverance, my desire to improve myself.
Are there things about you that people misunderstand because of your disability?
Yes, there are people who do not understand my way of communicating, they do not understand that certain stimuli can be very painful. For example that I cannot tolerate the yellow color, or tolerate hugs or certain type of clothes. They do not understand my stereotypes, which are repetitive movements that I do when I am very anxious or overloaded and it is my way of regulating myself.
What does the use of the word Inspired mean to you?
Inspired, that word to me means like that magic spark that drives us to do great things. to keep going despite the difficulties.
Who inspires you?
Wow, who inspires me? My parents are the people I admire the most in the world. In addition to them my piano teacher Clara Rodríguez and a girl I love and admire very much, her name is Victoria Sánchez. They give my life meaning, because they are extraordinary beings and for them I always seek to be a better person. In addition to myself.
Which three words would you use to describe yourself?
Smart, persevering, talented
What is one thing, experience or person you have had that completely changed your life?
There is a person who completely changed my life, she is my boss, Dr. Miriam Chacón, for accepting me as I am, for not seeing my difficulties but all those abilities that I have. Because she was the only one who has not rejected me or seen my autism as an impediment.
Who or what has been the most significant influences on who you are today?
My parents, my music teachers, my boss
What’s one thing about you that surprises people?
My talent for playing the piano, the ability I have to convey my feelings and emotions in each piece I play. In addition to that, people are impressed by my intelligence, and my great memory.
My music is simply my language, because common language fails me, in music is my magic and in music is the only place where my dreams fit. That is why I believe in music as much as others believe in fairy tales. Music puts wonderful people in my path.
For what are you most grateful today?
I think I am grateful for everything. There is nothing specific to be thankful for, it seems to me that my whole life is a miracle.
Knowing what you know now, what advice would you give your 18-year-old self?
I think I would tell her not to give up on her dreams, to work hard for what she wants and to always have confidence in herself.
What is your greatest achievement to date?
wow, my greatest achievement … I think each of my academic goals achieved is a great achievement. Going back to music and being a great concert player is also a great achievement.
Is there something that you would like people to know about you or about people with disability that they might not know?
That we can do many things, be productive in society, even if it is not in the same way as ordinary people.
Do you have any advice or something you know that made a difference in your life journey that you would like to share with other women with disabilities?
Women despite being undervalued in this society, we are great, we have many things to contribute, and we can go far, if we set our mind to it.
What would you say to people that might help them be better able to welcome and include people living with autism?
My advice is that they respect the learning times of each person with autism, that instead of focusing for example on speaking, they better focus on giving them communication tools, that they see what their talents are, and are in charge of developing them, because in that ability that person will be excellent.
For what would you most like to be remembered for?
As an excellent pianist and doctor with autism.