Saturday, November 2, 2013

The First International Dwarfism Congress of Portugal

Talking about dwarfism

On last October 26th, I had the privilege of participating in the First International Dwarfism Congress of Portugal, which was held in Lisbon. The event was organized by a strong non-for-profit organization called Rarissimas. Rarissimas has been working to address the social and assistance gaps which impact the individuals affected by rare conditions, including the multiple forms of dwarfism. 

The congress was organized to raise awareness about the many unmet needs of individuals with dwarfism, starting by the medical, nutritional and physical aspects, to political and social assistance and inclusion. I was invited to speak about the potential pharmacological therapies for achondroplasia.

The event has been enriched by some important organizations from Europe, such as  Fundación Alpe, which has been a relentless fighter in favour of individuals with dwarfism. Alpe has brought specialists who talked about the medical, nutritional and physical care, but also about the social and political aspects of dwarfism. One specific talk by Cristina González Villar, Technical Director of Alpe, was specially relevant because of the core message it brought. I asked Cristina, who also have a rare bone dysplasia, her permission to reproduce her talk here in the blog. The translation from Spanish was done with the aid of Google Translator, with my final revision. I tried to keep the sense and meaning of the expressions which could have been lost, as the translator is not able to capture subtleties. 
3. Be disabled OR to have a disability?
At this point and reminiscing Shakespeare in Hamlet: 'to be or not to be, that is the question!'. In our case to be disabled or to have disabilities? Am I disabled or do I have a disability or different ability? That is the question we need to ask and to take to this society that looks only at mere appearance. I am a normal person who has a disability that limits certain aspects of my life, but I have many capabilities that differentiate me from the rest, who sometimes simply doesn't see. It's time to open your eyes and see beyond the different appearance because you will lose the opportunity to meet people who seek only to be equal in a society that only highlights the difference.
Within a few years, the society, the greater and better part of society, will no more have a humiliating stereotype of people with dwarfism or, at least, will have another view that may oppose to it, one which will mean normal: people with dwarfism in a variety of professions, families, participating in public life. To achieve this it is necessary that we make ourselves known as we really are, make our voice heard, make us visible.
I believe that to know is to respect and I keep holding on this concept because I believe in this every single day: when someone learns about the other or others respect, or at least a conditional respect, arises simply due to that knowledge. To see that someone is not a puppet, a caricature, a parody, it is like unmaking a costume. By keeping their eyes open to see the person that appears behind the costume, the respect due to every human being by the mere fact of being human, the dignity, also appears. 
Many Thanks

Cristina González Villar - Diretora Técnica Fundación Alpe

Here goes the link for the congress program (in Portuguese and English).

The future and the present 

I think that her message is of special relevance. Although there are several potential therapeutic strategies being explored for achondroplasia and other forms of dwarfism, they are supposed to improve only the health of the future generations, growing children, because these therapies can only influence developing bones. However, there are clear current and urgent unmet needs for the adult individuals with dwarfism, and they deserve due attention now. 

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