Disability visibility lifelong effort

First-person source

Constanza Orbaiz suffered two cardiorespiratory arrests in her first twelve hours of life. Doctors said she would only survive two days.

Despite not being able to project her own future, at 37, she overcame many barriers and help others in her same situation.

Background

The National Institute of Statistics and Censuses (INDEC) published the preliminary results of the National Study on the Profile of People with Disabilities, through which it is now possible to know that 10.2 per cent of the population of Argentina has some disability.

In absolute terms, it corresponds to an estimate of 3,571,983 people. Approximately 10 out of every 100 people who live in towns with 5,000 inhabitants and more have some difficulty.

The Cuyo region is the one with the highest proportion of people with difficulty (11.0 per cent), and the Patagonia region is the one with the lowest proportion (9.0 per cent)

According to the International Classification of Functioning, Disability and Health (ICF) published in 2001 by the World Health Organization (WHO, 2001), disability is considered to be any limitation in activity and restriction in participation, originated in the interaction between the person with a health condition and contextual factors (physical, human, attitudinal and sociopolitical environment), to function in their daily life, within their physical and social environment, according to their sex and age.

BUENOS AIRES, Argentina — When I was born, I had a cardiorespiratory arrest and another one 12 hours later. 

That led to a brain injury called hypoxic quadriparesis cerebral palsy.

From that moment, my future was clouded, and the condition set me up for a lifetime of doubt and discrimination.

All of us who suffer from a disability experience episodes of discrimination at some point.

Today, I have one goal: giving visibility to people with disabilities.

The incident that marked my life

Doctors said I would likely die as a newborn, yet 37 years have passed since that grim diagnosis.

I live with a disability that does not stop me from being who I want to be. 

Although I never knew if I would finish each school year, I managed to graduate in psychopedagogy.

I always say that my determination and desire to live have always governed my life.

That thanks to the love and perseverance of my parents, I always felt accompanied. Without their support, I would not have been able to achieve everything I did.

Every step, every goal I accomplished was thanks to them.

After many years, I dared to live alone, and they helped me a lot, and it was an excellent experience.

Although I have some difficulties and challenges to do daily things, I always try to find a way to overcome them.

Falling and standing again is part of the process.

In those moments, my therapy support team, my friends, and my family help me a lot.

Without them, I don’t know how I would do it.

I can tell you that my determination comes from the love of my support network. 

Complex society

As a person with disabilities, I always wanted others to understand our situation and tell them, “here we are.”

It seems that people like me are not here. Others don’t see us, but we exist.

Usually, societies are not designed for integration and we were never able to have a “normal” life as others. Our lives are a little more complicated than anyone else’s.

In recent years, society has advanced in various aspects. Still, it seems that there is a long way to go in terms of disability visibility and acceptance.

There were advances compared to 20 or 30 years ago, especially in school and the workplace.

But from the state, it seems to me that there is still a lot to do.

Without inclusion, disability brings poverty, and this situation has to change as soon as possible.

I hope that society becomes aware of this problem and helps to change the outlook.

A big idea

I have always felt a need to help and explain how people can collaborate to improve everyone’s environment.

I think that it is my purpose in life.

Today, I have one goal: giving visibility to people with disabilities.

That is why I created the “Desde Adentro” foundation, a project to give talks in different areas such as business, education, and therapeutics.

I felt it was imperative to give a voice to the voiceless like me.

I speak to companies about any issues that have to do with disability, including people in the workplace or education. The objective is to help them to integrate people with disabilities into the working environment.

Taking into account the pandemic context, the talks are evolving to a more motivational tone.

I put people like me at the center of the scene and explain our emotions and needs to others.

I like what I do, and the results are enthusiastic. 

Go on stage

For a long time, my work was invisible.

But one day, I was invited to give a TED Talk. I could not believe that they invited me to participate. 

I did not hesitate and said yes. 

It was an incredible opportunity to show the world that we are part of society. 

It was the best decision, and it allowed me to take our problems to the mainstream media.

From that moment on, I had months of great exposure.

People stopped me on the street to thank me, greet me, and show their affection. I will never forget that time.

A world of many opportunities, new talks, and projects also opened up for me.

Thanks to that situation, now I have more ambitious programs to help others.

The uncertain future

I can only tell you that I live in the present, I do not have any other option.

It is sad, but those who have a disability like mine know that we cannot have prospects.

I always wonder about what will come next and what I will be able to do. The future, my future it is not clear.

It is tough for me not to make plans; I do not know if my dreams will be fulfilled.

Today, I can only say that I will continue working to help those who suffer my exact pain.

That is my passion. That is my purpose in life.