Meet Pilar O’Connor, Valencia (Spain)

Meet Pilar O’Connor, Valencia (Spain)

Although my surname might make you think that I am Irish, I was born in Valencia (Spain) forty-nine years ago. I spent most life in a small town on the Mediterranean coast until I moved to the city where I am living now and that is the same city where I was born. I share a flat with my brother but I have a free and independent life thanks to two personal assistants that help me 24/7. I am not married or in a relationship nor have children. Recession and family matters forced me to close down the personal assistance and baby sitting business that I had been running for five years. I also worked as a script writer for radio stations and as classical music critic for specialised magazines. I wrote a play for children that have been performed in some Spanish cities.

What is your personal experience of disability?

I have never had the chance to live without disability. My wheelchair and I have always been a team. When I was a child I wasn’t aware of my condition. I never questioned why one of my friends had to push my wheelchair when we were playing hide and seek or why I always had to grab one of the ends of the skipping rope while my sister played. I only felt like a weirdo when people on the street stopped, turned back and stared at me. Living in a very small town wasn’t easy. People there thought that being wheelchair bound meant being “a poor little ill girl” or, even worse, “a poor little retarded girl”. My mother taught me to stick my tongue out at the staring people. That was my first vindicative action.
When I grew up I saw my life in an other way and, for some years, I felt different. Sometimes your family builds walls around you, fearing you can be hurt, to keep you safe from suffering. That was my case. They didn’t realise it is better to feel and to lose than to never have known a feeling. I lived in a golden cage and I was afraid of the future. Fortunately, I met people who opened my eyes to the things I could do, bringing fresh air and new thoughts into my life. I changed.
My mother’s death compelled me to independent living and, what seemed like it would be free fall, was, in fact, free fly.
I learnt to do things by myself, to take decisions. I didn’t have the help of my family anymore and it was me, the dependant person, who had to look after my father at the end of his life. The roles had been reversed.
I can’t say I have an easy life. It’s really hard sometimes with ups and downs but I think that I am lucky, kind of lucky, for having the chance to do things that, in principle, I wasn’t entitled to do: Studying, working… To carry out an independent life. I am commited to making both possible and natural to other people in my condition, to enjoy the things I have enjoyed by a stroke of luck.

How did you discover the Independent Living movement?

Some members of Foro de Vida Independiente came to my personal assistance business; Mámen Nájera, Juan Benages… Juan asked me to attend an international meeting about independent life that was held here in Valencia. Meeting people like me, struggling to have decent a life, was an impressive experience.

Is there an area of Independent Living that you are especially interested in?

Personal assistance and not only due to my work also to my own experience. I wouldn’t be able to do the things I do without my personal assistants’ help. Thanks to them I am a free person. I would like that every person with functional diversity had the right to be helped in their daily life by the people they chose and not by people that someone imposed to them. I want people that think personal assistance is a decent job, that don’t consider us ill, that we can get on with; people who are our hands and our legs but that are not our brains.

Who has influenced you the most, and how?

My mother. Although she was over protective, she raised me to have an independent life and did her best so that I could study. She never listened to those who said it wasn’t worth I had an education.

What personal achievement are you most proud of?

I am very proud of being able to have my own life, independent from my family. I am really proud to be myself!

Do you have a favorite saying or proverb?

Be yourself, no matter what they say

What motivates you to get up in the morning?

People I love.

What do you like to do when you’re not working?

Write poetry and short stories, study English, listen to music, socialise with my friends, go to the cinema, walk my dogs. If the verb “To internet” existed, it would be the best option to describe what I do in the cold winter evenings.

If you could invite anyone to a dinner party, who would be your ideal guests?

Witty and funny people to talk and share with. Hugh Laurie, Robbie Williams. Cesar Millán (The dog whisperer) to control my three noisy dogs while we were having dinner, Boris Izaguirre, a good chef like Jamie Oliver or Darío Barrio to make the dinner and, especially, my best friends.

What advice would you give to young adults with a disability?

They have to delete the word “disability” from their mind;. everybody is disabled in some way. If, in his day, Carl Lewis had been compared with 99.9 per cent of the World’s population, this 99.9 per cent of would have been considered disabled compared to him, from those who were in a wheelchair to those who, on an atlethics race, couldn’t catch up with him. Like everyone, there are things that we can do and things we cannot but that doesn’t make us less abled in life.
They shouldn’t hide or be sheltered by their families. Family is a big support and help but we are not eternal babies. They have to be visible in society, fight for their rights and protest again injustice.
Enjoy what they have been given and don’t think about what they have been denied.

spanish

Spanish version

 

2 Comments

tonis kanaris

August 2, 2011, 7:03 am

very good comments in general, but plz inform who pays for the 2 assistants? herself or some EU programe?, need to know SINE I NEED a SECOND assistant
i became disable in a car accident in 2005 at the age of 52 untill then i lead a full life as a TV journalist, i never married today i run a small medical tourism company that SENDS PEOPLE IN INDIA FOR TRATMENT in order to get back to normal thru ,dificult boneand other operations, rehab,etc also infertility, eye problems and many many other medical problems. INDIA IS A CHEAP MEDICAL PARADISE, had in not been for INDIA i would still be in bed, full time thank god they succesfully operated on me and made me walk 67 months after the accident that left me with hemiplegia of my left side, SO FAR I’VELEARNED NOT TO GIVE UP, SURRENDER thats why i refuse to use an electric wheelchair. thats all, i hope havent bored u and truly hope, to meet some of u in one of these independant living conferences, that i intent to participate bye for now. TONIS

Pilar O'Connor

August 2, 2011, 8:15 pm

Hello Tonis,
This is Pilar O’Connor replying you. Thank you for reading my role model. You ask who pay for my two assistants and the sad answer is that I have to pay myself for them. I don’t have any specifical help for personal assistance from the Spanish government or the EU. I have a disability allowance of 500 Euros by month and that’s all. This amount doesn’t cover the salaries of 2 personal assistants and I’m paying them thanks to the money my parents saved along their lives and left me when they passed away. I am a lucky one because most of disabled people in my country can’t have 24/7 personal assistance and, if they don’t have a family who support them, they have to be institutionalised with the subsequent lack of freedom that this fact implies.
You didn’t bore me and I am sure you didn’t bore neither any of the ENIL members who read your post, quite the opposite, we are glad you are interested in Independant Living. Keep on being a fighter Tonis, don’t give up and who knows if we would meet someday in a Independant Living conference as you wish.
Cheers,
Pilar

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