HomeBlogXabier Madina and LIFE in capital letters

Xabier Madina and LIFE in capital letters

I'm Xabier Madina, I'm not going to introduce myself by listing the things I can't do, nor the medical diagnoses that have been assigned to me throughout my life. For example, in 1993 I was given a paper that says I have an "82% disability" or, as I usually say, an "18% capacity" and then the word "permanent" is added.

But, Life (with a capital letter), is wise and has offered me a lot of tools and support to be able to go through it. I have had the good fortune to share great moments with beautiful people, and from these interdependencies we have tried to respond to the circumstances that we faced on a daily basis. To do this, I have had a lot of support, both technical and personal. Moreover, this support has varied over time, as new needs and expectations have arisen.

Today, I live in an IZA Residential Centre, which belongs to Matia Fundazioa. Surely, this fact could shock my former colleagues in the "Independent Living Forum", of which I have been a member since the "1st European Congress on Independent Living" (Tenerife, 2003). In fact, we shared a terrible opinion about the residences, they seemed to us like horrible institutions where people with disabilities were piled up and then annulled as people, at that time we compared them to prisons or to animal farms.

Nothing could be further from the truth. At the age of 49, I have been in IZA, my current home, for more than 6 years. I won't deny that I had a lot of reticence to share my life with so many people (now colleagues) and to the discipline and order that has to exist in any house. I doubted to what extent my decisions would be respected in everything that affected my life, my customs, and in continuing to carry out all those "activities of daily life" that I have been doing since I was very young.

But, it is also that Life, always changing, and often "capricious", can put you in new scenarios that would never have crossed your mind, and that require solutions that I alone cannot give. In these situations, I appreciate that you can count on me to look for the best answer among all of us.

By way of example: As well as being a computer scientist, I am a dancer. In 2016, together with Ebi and Maylis, we began to create scenes, until, in January 2017, we were invited to a festival of "Inclusive Dance" in Bremen, where we were able to premiere a 35-minute piece. In addition, we were selected to perform for four days in a row at one of the biggest festivals in Europe: The Fringe - Dance Base (Edinburgh). And, during this year, we are committed to 7 more festivals throughout the state. Obviously, we are talking about an experience that would never have crossed our minds. Neither I, nor many of the professionals at IZA, with whom we share our day-to-day work.

Xavier participating in an intensive course of integrated dance

Now, I have to explain to you that this year is going to be a little different and that I am going to ask you for a little more "complicity" and "patience", since my needs will vary during this year: from the time of the lunches and dinners (depending on the rehearsals and trips that you schedule for me), to my needs for documentation of the motorized wheelchair to be able to take it on the plane. From the maintenance manager, who will keep the pressures on my wheels ready, to the physiotherapist, who will understand that my neck is more "caught" than usual.

It will be wonderful to be able to share the successes with all of them! Thank you very much for reading me!

Signed. Xavier

Photographer: Katrin Aldanondo.

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