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A story to tell

03/12/2023

Published in

University of Navarra

Araceli Arellano Torres

School of Education and Psychology of the University of Navarra

Daniel Muñoz

El Molino Occupational Center

I wonder if I have changed during the night. Let's see: was I the same when I woke up this morning? I seem to be able to remember feeling a little different. But, if I am not the same, the question is: who am I in this world?

That is the great enigma!

Lewis Carroll, Alice's Adventures in Wonderland

 

This is a two-voice article with the goal to claim the participation of people with disabilities in all spheres of life staff and public. The achievement of an inclusive society necessarily involves defending the right of people with disabilities to express themselves, to make decisions and to direct their own lives. Fragments written by Daniel Muñoz, co-author of this article, who for months has been participating in a project of research with the aim of elaborating his life story, are included. Some of these fragments are the result of this research and others have been written specifically for this article, on the occasion of the International Day of Persons with Disabilities.

Who am I? What am I doing here? Where am I headed? These are questions that we all ask ourselves at some point in our lives, in the process of developing our identity staff, the answers to which are determined by a multitude of factors: family, peers, physical features, educational experiences, relationships, among others. This set of factors is what shapes the image we have of ourselves. 

Who am I?
I'm Daniel. I'm active, quite cheerful, I like to be with people and I like to help. I'm also hardworking, artistic, cuddly and affectionate, I love affection. I would love to organize more things, at home and at work. I have more responsibilities. I have to concentrate and think about the future, every moment, what I want to do, official jobs, like having offices. Or also carpentry.

In the case of people with disabilities, they often have to face the stigma associated with this label. Their identity is often viewed solely through the prism of disability, especially in a sociocultural context that values, above all, normative standards (strength, productivity, beauty, etc.). As a result, narratives about people with disabilities are heavily conditioned by this halo effect. Their lives are understood either as tragedies or as stories of overcoming staff. In both cases, the social impact revolves around grief. And, as Shapiro (1994) would say, grief oppresses. However, in recent years, this tragic view has (fortunately!) evolved towards more positive models. Thus, in line with authors such as Swain & French (2000) or Oliver (1995), we claim the right of people with disabilities to be proud of themselves, to have bad, good and average days. Disability is part of human diversity and should not be understood as an extraordinary experience.

What do others think about people with intellectual disabilities?
There is a man who usually accompanies me in the competitions of the FEDI federation because I need that support. There are people who have relatives like that, who go to work in some places like El Molino. People know, although we don't know them, who we are. They know us through Facebook and social networks because we show how we are and what we do. They look at us, and sometimes visitors come. They think we are artists because they see what we teach and what we are doing.

It is absolutely essential, for all that has been said so far, to listen to people with disabilities talk about their lives and support them in the construction of their identity. This is advocated by a multitude of professionals and researchers who explore new methodologies for the elaboration of life histories that make visible a population group that has historically been silenced. The goal: to approach the narratives of people with disabilities in order to recognize their individuality and the subjectivity of their experiences. 

How have you changed over time?
I think I'm growing, every year, and also every month I notice that I'm growing little by little. I am more adult, more of a man than before. I already have a man's voice. The rules are changing, everything is changing. I understand what things I can do and what things I can't do, I also know how to relate better with other people, even with people who think different things, with everyone. There are also friends I know from swimming, athletics, soccer... I have been doing more and more sports, now I am more sporty and I do more activities, that's why I have more friends. My way of being has also changed, now I know what it is to be an adult, how to walk down the street, do different things, shop, I can do more things alone, prepare food, prepare the Christmas shopping... I am very autonomous. I have learned many things.

Who are the important people in your life?
My family members are the most important, I love spending time with them, having lunch, dinner, doing things around the house. They take care of me, give hugs and lots of affection, it's true love. My mother gives me love, I know how much she loves me, and I love her with all my heart, very much. With my father and my brothers and sisters the same. Also my nieces, my cousins and my uncles and aunts, I have many. I miss my brother-in-law, now I see him less but he is still very important to me. I also miss my colleagues and friends, I have a lot of gangs, from the Occupational Center I have colleagues, and friends from soccer, swimming, athletics, from other teams, from the neighborhood, my brother's friends...

Providing spaces and tools for people to tell their story, and share who they are and how they are, is a way of recognizing their dignity. People with disabilities are not a homogeneous population and each person, like everyone else, experiences and responds to life events in a unique way. Listening to their stories remains an unfinished challenge . 

What would you like others to know about you?
That I am a carpenter, that I would like to have my own carpentry shop, and that I would like them to come and meet me at visit. And that I would like to have a house or an apartment.

What would you like others to know about disability?
It is the same as some who have cerebral palsy, but others do not. If they think they don't think, they are ignored, but they do think, although each one in a different way. That all people with disabilities are different and that each one can do some things, but not others.