Dialogue between Maria Lúcia Miyake and Geane Poteriko (Curitiba PR)
Lúcia. I am Maria Lúcia Miyake Okumura, professor and researcher in assistive technologies. I am part of the group of Systems Production and Engineering. And in 2014 I met Geane.
Geane. I am Geane Poteriko, I am a teacher, and I am a member of Lucia’s research group. I started working on inclusion and accessibility after the birth of my daughter Dara. It was a big surprise when my daughter was born with a physical disability, the agenesis of the hand. At that time, I didn’t know whom to turn to, however, on a certain day I got a call. I met Lúcia in 2014, Dara was just some months old, and that’s when it all started.
Lúcia. When I met Geane and started receiving lots of emails from her, I saw a mother without any support and with an incorrect perception, right? that she was looking only at the missing part of her child.
Geane. I was just looking at my little girl’s deficit: I only saw the issue of agenesis and I didn’t realize she was a child with full functionality who would be able to learn to do everything. Her 3D-printed prosthetic device is a tool which support her, help in certain activities, and allows for greater autonomy, along with physical rehabilitation. Lucia came to me as a person who held out her hand to me, she gave me all the knowledge I needed, not only to help myself but others as well.
Lúcia. When I met Geane I began to understand that she had a void in her heart and at the same time she was thirsty for knowledge and willingness to learn. The first thing I saw was that there were several mothers in the same situation. And I said something like “Geane, what about exchanging your experience with other moms? ” Hence, from the pains and the achievements of a little girl, today there are several parents from all over Brazil who are in contact with each other and exchange experiences. Furthermore, in this project, we have also included a facility for prostheses manufacturing and maintenance. We also have professionals specializing in assistive technologies, who have knowledge about the needed services and also products. This structure has grown up to a size that is no longer sustainable by a simple group of parents; so, we had to establish an association called “Dar a Mão” (give a hand),
Geane. Which is a non-profit entity (social organization), which operates at national and international level. Today there are over three thousand families assisted daily. We identify the interventions that the family needs, from medical aspects to school inclusion. The service is carried out both remotely and in presence. We also offer training courses; our network of volunteers is large because it is spread all over Brazil. The “Dar a Mão” Association operates entirely on a voluntary basis: our professionals are not paid, our entire Council, which has representatives from all over Brazil and other countries, does not receive any remuneration, it is only solidarity that drives us. We see that the little girl can do absolutely anything with her stump, with her limb with agenesis: the main problem is rehabilitation, how to support the rehabilitation program.
Lúcia. This device enriches the possibilities of autonomy in her daily life; its personalization helps the rehabilitation process, makes it more motivating. Here I have one device made by a volunteer from Caruarú (Pernambuco), he did it for a girl who wanted to be “Wonder Woman”.
Geane. What I really want is that all these families that come to us come out of a painful condition and switch to an active attitude, fight for the cause of people with disabilities. For me, a life goal is to be able to go to a playground and take my daughter to play together with other children without any kind of differentiation, without perceiving attitudes of extraneousness. This can be generated by a broad movement of fight and activism, not just talking about inclusion, but acting in a context of inclusion.
Lúcia. We should “live the other”, don’t we? And to know the diversity present in society, to understand the limits and the specificity of each person. I think this sharing will bring us a better world.