This past winter I made the decision to attend the NOAH conference for the first time. I did so with intention, being fully committed no matter what. Once I make a decision very little stops me. Lodgings booked I then waited for registration to open. Of course once I could I did in fact register. For years I had stalked the NOAH website and later the Facebook page. Even though I wasn’t yet a member I felt compelled to keep an eye on what NOAH was up to, organizational speaking of course. I was accustomed to being the only me. I had a couple of friends with albinism I had cultivated in my adulthood so I did not feel alone.
Fast forward to July. As the conference quickly approached the more my excitement grew. “Im really doing this” I would tell myself. butterflies danced in my stomach, each fluttering of the wings propelling me forward. The night before I departed I could barely sleep. My family cheered me on as they were equally excited. I boarded my short flight to San Diego trying not to think to hard. Epic fail of course. My mind was full of questions. Would there be anyone there who looked like me? Would I be welcomed? Would the panel I was co moderating go well? What if I hated the conference? “Enough” I told myself. I had to believe all would work out well.
Upon arriving at the host hotel I saw small groups of people chatting, making plans for outings and just catching up with one another. My first thought was there were albino people everywhere. Oh My God!! I’m really here. i observed more closely seeing children with albinism. I was so distracted I had to be called by the concierge to check in. I was already overwhelmed emotionally. My eyes stung with happy tears, tension left my body and I reminded myself to breathe. I had come home.
I believe the biggest thing I came to see initially was the individuality within the group whole. We all have albinism and we all are uniquely ourselves. We look similar and yet our features, our characteristics are our own. When I was young I used to think that if I were in a crowd of several hundred people who looked like me I could blend in. I could be invisible. By Thursday evening I found myself in a ballroom with hundreds of people with albinism. Children, oh my there were so many children. And, no I would always be me. I am never going to be invisible.
As I walked through the ballroom seeking a seat I took in the various shades of albinism. There were those who like me had very fair skin and white hair. There were those who were sun kissed, Meaning they had that golden skin tone. There were those who were more ruddy in complexion. And they were all me. I marveled at families who seemed so very comfortable already. I regarded children after the opening session who ran through the room playing tag. While I only knew one other person there with albinism, my best friend, I would soon make dozens more.
As the evening came to a close I knew I was not yet ready to sleep. So like many others I joined the growing congregation of folks out near the pool. The night was still warm and the darkness was a welcome to my overextended eyes. We PWA’s can be a reticent crowd. We are always in observer mode initially, assessing new situations and environments, getting the lay of the land so to speak. This is also the case for me. Approaching the pool crowd, we were immediately welcomed. “Come on over. Here, have a seat. And enjoy the beverages on the table.” All statements that caused me to breathe easier. Like all first timers I was being enfolded into the community.
Friday morning the workshops and panels began. I soaked up everything. I learned more about albinism from the research viewpoint and my head was full with all the knowledge. Between workshops I continued to meet people. I know its a cliche, however I was like a child in a candy shop. Do I go to a workshop or do I enjoy the conversation I am having with this parent who has a child with albinism? For the remainder of the weekend I would do both. If a session called to me I went. If I found myself having a conversation with someone I stayed where I was. While the sessions were interesting abd valuable, it was the personal interactions that held most precious for me . I met parents, teens and other people with albinism like myself. Conversations with my peers, mostly the ones that took place diring the evenings while socializing, were wonderful. The exchange of information around technology, scopes and other visual equipment and skincare opened my eyes to what I had been missing.
I was awestruck. This is the only way I can explain how I felt. During an outing Friday I found myself pulled by someone as our large group was divided in half. “You’re with us.” A simple statement that meant I was embraced and accepted., nearly made me cry. We were mixed ethnically and age wise. Yet we were predominantly African American. We were ourselves and we were one another. Our shared commonality of albinism was just that. We laughed. We were unruly and we had so much fun. We were professionals and students. We were oblivious to how others in restaurants or on the street perceived us. Honestly, we didn’t care because we were comfortable in our own skin.
The things that worried me before the conference were a non issue. The panel I co moderated went quite well. I arrived alone and departed with new friends. I enjoyed myself immensely, I knew I would return for the next conference.
After the noah conference I returned to my daily life. I was changed. I had experienced an amazing weekend. met tons of new people, created new friendships. For the first time I felt as though I had a community. I had a pack. A family. One morning I sat at my favorite before work cafe reflecting on the conference. My mind was still awash with so many emotions and thoughts I found it difficult to write When I was slammed to my core.
I have fought for inclusion all my life. I cajoled my mother as a young child to be allowed to play outdoors with my brother and sister. A battle was fought on my behalf for me to attend regular school. Once in school, teachers advocated for me to have all the materials I needed to fully participate in my classes. I battled to have similar freedoms as my siblings. Tenaciously I pushed my intellect knowing it was my exit from my home circumstances to a different life. When I was a young woman I demanded inclusion into the women of color, the lesbian of color community. My presence made some uncomfortable because they could not would not look beyond color. When my body told me no I declared I would still become a mother. And I did. I am a scrapper. I am willful. I know that when there is something I want I manage to somehow make it happen. So I was completely unprepared when 20 minutes before I was due at work I had an emotional meltdown. All the spiritedness, negotiation skills and bravery in the world could not buffer me from myself that morning. As I cried, huge sobs wracking my body I realized I had been alone. So very alone. Furthermore I had grown so accustomed to being the only me in my world that I hadn’t even known I was alone until I wasn’t. Here was yet another aspect of my identity now awakened requiring its place amidst the other layers of myself.
Albinism for me is an extension of who I am. In the same fashion being African American/Black and being a lesbian are also vital parts of me. Just as being a mother of a now college student and being half of the twenty four year partnership also define me in my community. I live my life in an all encompassed way. And yet albinism has once again risen the forefront. Well, thats not exactly true. Albinism, and my albinism in particular has been very present for me in the last year as I have been working on my memoir. Attending the NOAH conference brought me to attention.