How does one identify with a community they’re born into? Do they just turn it on?
Born with dwarfism, as the only person in your whole family, the journey to identity can be long and difficult depending on who and what makes up your emotional environment. For anyone, the identity is layered in ethnicity, color, gender, spirituality, family environment, etc. As a Filipino woman with dwarfism, these three major factors have definitely sculpted my identity. The journey to who I am today as a mother of a child with dwarfism and an Average Height child continues to evolve, yet remains strong via my roots in LPA. But, that identity doesn’t happen for everyone. We can’t just hold up our trident hand and wear our identity like a cape.
Why do I need to purchase LPA membership? We want our children to benefit from membership as much as we did. LPA membership didn’t give us automatic self or peer acceptance. But, it did give us the three major things most people with disabilities need:
- Community: Both of us (Dwarf Dad and Mom) were born from Average Height parents who were immigrants. Assimilating to American culture alone was a challenge. They then had the challenge of understanding dwarfism in it’s entirety with young children. Luckily, our doctors referred them directly to Little People of America for guidance. As young children, we were able to meet other children with dwarfism who shared the same struggles and acceptance that we did. Our parents and siblings were welcomed into a community that understood our needs as a family. The siblings met other siblings and LPs of the same age who strived for this community of acceptance and understanding. We had a place to just be, a place to belong. And those friendships didn’t just become our “LPA friends”, but long and deep or short and teachable, just with another layer of identity. Adults became mentors, aunts, and uncles. Now, both our LP son and AH daughter have that community for their lifetime.
- Medical: Let’s be practical. We are rare. Even with the most common type of dwarfism (achondroplasia (one per 26,000 to 40,000 births)), it is rare to find a doctor with the breadth and depth of dwarfism experience that our LPA Medical Advisory Board (MAB) has. There are other doctors not listed on the LPA MAB, but I would advise from personal experience to vet them via the MAB doctors. Involvement in LPA allows you to have those intimate conversations with other parents or LPs about medical issues, insurance, and who to see. With both of our types of dwarfism, we were lucky to be connected to the best-of-the-best doctors and then have our son be given the same healthcare with these expert doctors.
- Resources beyond the internet: The Age of the Internet has allowed us the means to reach communities beyond our physical ability. If Google gave $1 to LPA for every time someone searched for “dwarfism”, the resources would be endless. On the other hand, there’s something to be said about the face-to-face interaction that helps us understand dwarfism. That block turned walker suggested by another parent doesn’t mean as much until you see the 2 yo. achon child’s smiles and laughter up close at an LPA event. Those car pedal extensions by Best Little Extensions are awesome. But, until you see how it fits on you or your child after connecting at an LPA event, it doesn’t become a visible, vibrant moment of acceptance and knowledge of our dwarfism.
We think of LPA membership equiavalent to healthcare. It is essential for the social, emotional, medical, and community support they’ll need for the rest of their lives. In retrospect, we should have bought LPA lifetime membership for both our children after they were born. It wasn’t until our AH daughter inquired what happens when we (mom, dad, and brother with dwarfism) are not with her. She stated that no one knows she’s part of LPA if we’re not with her. How does she stay connected to the life she had in the dwarfism community? The community of friends and friends like family who welcomed her and saw her grow up needed to be connected to her too. After a couple of deep conversations about what LPA means to her and moments of mom welling up with pride and love, we bought her own LPA Lifetime Membership.
LPA membership. You may not need it today, maybe not tomorrow or next year, but someday and it will serve you for the rest of your life.