I’m the youngest of three, my eldest sister is not disabled and my middle brother has the same condition as I have. My parents worked and now both are retired. I live a more or less independent life in my own house with my partner for the last 11 years.
I’ve always had to live disguising certain things, since the “benefits” or aids to live according to the principles of “independent living” were to be provided by my partner or my family as stated by law.
My partner is at the same time my assistant, lover, friend, even co-worker. There are too many roles for just one person, so it is sometimes difficult to separate them, both for me and for him.
What is your personal experience of disability?
For over 20 years.
I consider myself a fighter. At the beginning of my diagnosis my first symptoms took a lot out of me, I saw myself as “disabled” as seen also by the rest of society, and more so in the ’80s, but soon I began to feel myself, different but the same as anyone else.
To begin with, at home, I had many problems because my parents overprotected me, for example they did not want me to study at college, although my brother, also with disability did not have that issue. I think mainly because I am a woman. On the other hand, inside my house there was no overprotection, if I wanted water I had to go to the kitchen, even if I fell down in the process. I appreciate that attitude more so now.
I also had problems in my relationships since my partner then, neither his environment, not even I knew the right approach to this new situation, and I was greatly de-centered. In spite of the social stigma around “disability”, life carried on and I wanted to live.
While I was at home it became more difficult to be understood, especially by my father, since he did not consider me able enough to do things for myself. After I left home and became independent, everything changed and now he values my opinions and even asks for help on certain subjects.
How did you discover the Independent Living movement?
I discovered the movement through a friend when I heard about the 1st Congress on Independent Living in Tenerife.
For me it was like a window opening because it meant I was not a freak. There were more people who thought like I did and were organized.
Is there an area of Independent Living that you are especially interested in?
I am interested in Personal Assistance, as the core of Independent Living. As I mentioned at the beginning, it is essential to separate as much as possible the role of the Assistant from other facets of your life, family, friends, work, etc..
For example I would also like to change certain things for women with disability, something as simple as going to the gynecologist, where they lack the means to assist a person with disability.
Who has influenced you the most, and how?
I can not say that no one has influenced me, if anything “Foro de Vida Independiente” as a constant source of important information.
What personal achievement are you most proud of?
To start my own business, together with my partner, and work there.
Do you have a favourite saying or proverb?
“We have learned to fly like birds and swim like fish, but we have not learned the simple art of living together as brothers.”
I think that this phrase encompasses everything. Even from the aspect of disability, we are not capable of living in harmony with our differences.
Also the motto of FVI stimulates me because it reflects reality and nobody better than we know what we need or want. “Nothing about us without us”.
What motivates you to get up in the morning?
I have to do what I have to do in order to live that day. That really makes me feel complete.
What do you like to do when you’re not working?
I’m learning to relax, since I am a person who always has many things to do and sometimes I can not stop my mind.
On the other hand I always try to have some time set aside for activities not related to IL, but I don’t always achieve it.
Who would be your ideal dinner guests?
Depends what for, if it is to achieve Personal Assistance it would be a politician or a multimillionaire involved in IL to help us implement a project.
Otherwise friends and/or family, which for me are more important.
What advice would you give to young adults with a disability?
I’m not much given to giving advice. But I would say go out, be outside, studying, working, practice a sport, go to the movies and the theater, travel, you will find difficult situations and be hit more than once but we have to be there and be visible.