When I was little I once heard my grandmother talking about me
She didn’t know that I was there listening and she said: "what a pity,
my little girl, she has such a beautiful face but nobody will want her!”
I was born with spina bifida that means that since I was little
I wasn't able to walk very well.
I grew up in Costa Rica: a small beautiful country in Latin America,
and there I always felt loved and supported by my family.
I grew up like any other kid; I played, I went to school, I learned to swim
Once I was asked what part of your body would you change if you could,
and my answer was “none”.
I was happy, I was free and I was encouraged to do whatever I wanted.
Yet, later in life, when my first daughter was born
my father was holding her in his arms and he told my mother
“I never dreamed this moment was going to be possible”
and I was surprised because I thought my grandmother belonged to another generation
but my father, my loving father; the one that told me that there were no limits,
he couldn't believe that I was going to be a mother.
Today, I am the mother of three. I'm a lawyer, I’m married and as you've heard,
I'm the Special Rapporteur on the rights of persons with disabilities.
In my work, I promote human rights; I travel all around and I meet
with persons with disabilities; all sorts of persons with disabilities:
children, older people, indigenous peoples, women. I seat, I go,
I visit schools, psychiatric hospitals and I learn about their challenges.
I then go and meet governments
and discuss with them those challenges, trying to find solutions.
And I've been in very different countries in all the continents:
in Asia and Europe, in Africa, Latin America, North America…
rich countries, poor countries, less and more developed countries
and what is interesting is that all around,
the challenges that we face as persons with disabilities
are very similar, and here are some of our shared frustrations:
many of us feel excluded, out of schools, and without jobs;
many feel undervalued:
-you know, in some places, people with disabilities cannot vote.
Many feel angry because they cannot leave their houses, or use public transportation.
Some want to form families and have partners but they're not expected to,
and some are tired:
we're tired of people feeling sorry for us because we don't like pity
and much too often, decisions are made for us.
We're not allowed to decide what we want to do with our lives.
Others have the power over us, others can decide for us. It could be doctors,
it could be professionals, it could be teachers, it could be even caregivers…
and this again, is not something that happens only in the poor countries against
the rich countries, or in the more democratic countries
against the less democratic countries. No, this happens everywhere.
This is for instance the case of Alice:
Alice is the nine-year-old daughter of my friend, and when she moved here to Geneva,
she wasn't allowed to attend any school.
Professionals here thought that her down syndrome
justified her exclusion from other children.
Alice wasn't able to attend school for more than four years,
and this seems incredible, right?
But it's true and it's what happens to millions around the world.
So we must change that. We need to change those powers imbalances.
Persons with disabilities need to contribute and to participate in
our communities just like anyone else.
And for that we have been fighting for decades, demanding change,
and thanks to that fight, we now have a very important tool:
That tool is the United Nations Convention on the Rights of persons with disabilities.
This convention is a law, an international law, so it creates obligations for States.
It was drafted with the active participation of persons with disabilities
And I was privileged to be one of them.
And the convention has at least, two clear messages:
The first one is: the problem is not us.
The problem has never been us: the problem is not personal,
it's social, it's not about curing us, it's about removing barriers.
So, the problem is that there are only stairs and not ramps to enter a cinema;
the problem is the law that allows others to make decisions for us.
The problem is the school that is designed for some and not for all children.
And the convention is also reminding countries that they need to seat,
talk and listen with persons with disabilities
because we know better what are the problems
and we know better how to stop those problems.
Of course we have to work together and with others in building the solutions,
but we are the experts we cannot do without.
And let me give you an example:
I once met with a young man.
He was very upset, Oscar,he was upset because he just got a new wheelchair;
a fancy wheelchair, the municipality had spent a lot of money in that wheelchair
But the problem was that Oscar lived in the mountains, in a rural area,
and with that wheelchair, he couldn't go out.
All he wanted was a horse, but nobody had asked him. So nothing about us without us.
That's the motto of the disability community. Nothing about us without us:
and that's the key that is gonna help us gain the control over our lives.
And a lot of things are happening; we're seeing change all around.
More and more we see persons with disabilities participating in school,
as co-workers, we have more awareness about the need to have accessibility.
Technology is supporting us to strive. But, to be truly successful
and to achieve the full participation of persons with disabilities,
we still have to look at the root causes.
What is causing this exclution? Why is this still happening ?
And what I see in my work, and my life is:
that this is because the way in which we are perceived.
This is about the social perceptions, because unfortunately,
there still many that think that we cannot lead fulfilling lives,
that we are a burden, that we cannot be independent and have a familie,
so mothers might even think that our lives are not worth living,
that our experiences are surrounded by sadness and ugliness,
that our lives experiences need to be avoided and prevented.
Some might even think that disability is a worse fate than death.
So we need to challenge these perceptions and this may sound daunting,
very difficult but I'm very optimistic, because: in the same way that
we have made progress in fighting sexism, in fighting racism,
in fighting homophobia, we will make progress in fighting ableism.
The discrimination and social prejudice against persons with disabilities.
And we can do that by embracing disability as part of human diversity.
By understanding that persons with disabilities and disabilities are just
a normal experience. One, that should be celebrated.
So, this is about disability as a normal part of human diversity
And one that should be celebrated… That's strong isn't it?
Let's break it in two:
So, disability is a normal part of the human experience and that's an easy one,
because it's a fact.
We represent 15% of the global population: that means 1 billion people.
That's a lot of people, and I have news: we're here to stay!
We aren’t going anywhere, and if anything, the numbers may only increase,
because the population is getting old,
but also because thanks to advances in science and technology,
we are supported and now, you know, we live more.
So we can even say that we are the result of human progress,
and this is not to scare you! Because you know, once I was in a radio interview,
and I was talking about all these numbers,
and the interviewer stopped me and say: Oh my god!
So now there are more persons with disabilities?? We have to do something!
No, it's not about that, this actually takes us to the second point:
the point of the celebration. We have to celebrate,
because just like anyone else’s, our lives can be exciting, beautiful and cool!
Just like anyone else, we have expectations, and we have dreams,
and, just like anyone else when we have opportunities, we flourish.
And also, just like anyone else, we have moments of loneliness,
and sadness, but that's life, right?
So we don't want to be cured, we want to have access.
We don't want to be pitied, we want to be proud.
And I'm proud: my disability has enriched my life in so many ways,
and it is actually enriching the lives of those around me:
my colleagues, my friends, my family, my lovely daughters… even perhaps my husband!
You never know. So, we need to celebrate, And we need to celebrate
because no one should have the power of deciding about us,
or over us; no one should decide about the value of our lives.
And this is a revolution; a deep philosophical change.
One that will not allow any father to limit his expectations about his daughter.
Every revolution starts at the mind.
This is not about you or me, this has always been about us.
How far do you want to come with us in this journey?