Encuentros: Some other thoughts from our meet-up Thursday…

What they mentioned about the older generations of little people they knew in Spain was very interesting. N’s mom said at first they had found a reluctance by the older generations with achondroplasia to participate in their foundation’s activities. However, they started getting calls from various groups that revealed the need for their help. For example, an architectural firm from the other side of the country called because they needed to alter a building to conform with new accessibility requirements, including accommodations for two workers with achondroplasia. The firm was calling to find out what these changes would be. N’s parents had no idea, since their daughter was still just a baby, and at that time there were no official guidelines anywhere.  So they needed the collaboration of older people to provide appropriate information. So, she said, their foundation has been working to incorporate people of various generations to meet their different needs.

One woman had shared with N’s mom that she had spent years in therapy trying to resolve the feelings that came about when her older siblings stopped taking her to the playground while continuing to bring her younger sister. They had explained, “We don’t want to take you, because when we go with you everyone stares at us.” She also told me that meet-ups they’ve had tend to be with parents of little people because the adult little people told her “We’re tired enough of people staring at us in public, why would we want to draw even more attention to ourselves by gathering together?”

I want to believe that these stories reflect growing up in a different Spain; that Spanish society today is more open to diversity than it was a generation or two ago. I know that the racial and cultural make-up is very different today than it was when I first lived here almost 15 years ago, and I would hope that this increased diversity is slowly changing cultural perceptions of difference and “the other”. If anything, the increased participation of parents of little people in groups, associations, and conferences seems to reflect a desire to situate their children within society rather than keep them hidden, as I’ve been told happened in the past. (I think of that woman whose siblings left her behind- why did her parents allow them to treat her like that?) Perhaps this effort will result in a generation of people who are proud to be part of a very special group and who are interested in guiding those younger than themselves and their families from their own experiences.

I’m basically thinking “out loud” here, and trying to sort out information as I come across it. I would love to hear your thoughts and reflections on these subjects. What am I getting wrong? What information am I missing? 

Encuentros: Vigo Meet-Up

Thursday afternoon we met the family who heads Fundación Magar here in Vigo. Their daughter, N, who is 13 years old, loved meeting Belalu and played with her pretty much the whole time. When Belalu was clearly ready for a nap, N rocked her in the stroller until she fell asleep.

As the kids played, the parents talked. We learned that they started the foundation when their daughter was just a baby, because when they searched the Internet for information about her condition and wanted to contact other families, they had a hard time finding relevant information. She said the primary aim of their foundation is to raise funds for research in achondroplasia, but that their web page also serves as a space for families to connect and keep up to date on conferences, reunions, and news regarding medical advances, etc. Regarding the social aspect, they know of about 15 families in this region of Spain (Galicia) whose children have a skeletal dyplasia, the majority with achon. They also said that almost all the young people with achondroplasia that they knew have chosen to undergo limb-lengthening surgery. N herself spent the past year lengthening her legs and just started on her arms. She told me it didn’t hurt at all, and her parents reiterated that the surgery was completely her idea. Her mom told me that they hadn’t planned to do it, but that N saw the results of one of her friends that did, and she wanted to do it, too.

We asked how it’s been for her socially, and they assured us that so far it has been very positive. They shared an anecdote about how when she was 5 years old, they realized she didn’t know how to button her shirt. Nevertheless, she always had her school shirt on correctly (in Spain all little kids wear a uniform at school - a type of over-shirt). The teacher watched her one morning and realized that she would put the shirt on, walk over to whichever friend was free at the moment, and that friend would button up her shirt for her. “She has a whole court of ladies-in-waiting ready to help her out,” laughed her mom. When we asked about strangers staring, they just dismissed that worry, too. “Oh, she doesn’t even notice anymore.” While I appreciate the positive perspective, I’m hesitant. After all, N was insistent on doing the limb-lengthening surgery. However, I didn't press the issue.

The families in Galicia usually get together for a day in the summer, and we just missed this year’s gathering, but we’ll be in touch for next year and they said they’ll try to match our schedule with theirs so we can meet more families.

N and her family were very open and welcoming, and we spent a nice afternoon with them. They assured us that the most important thing we can do for Belalu is to promote her self-esteem and confidence. N’s personality reminds me a lot of Belalu. I look forward to seeing them again next year and we’ll be in touch via email until then.