Inter/Act member Emily B. teamed up with our coordinator Pidgeon on August 8th to lead a workshop & presentation on advocacy, collaboration & improving care with the clinical team over at Lurie Children’s Gender & Sex Development Program. We’d like to thank Lurie’s team for the wonderful opportunity and look forward to working together again soon. The following is Emily’s recap of the significant presentation.
For me, August 8th was a day of important firsts.
I was invited by Inter/Act to spend an hour talking about youth intersex advocacy and improving care with doctors in the DSD team at Lurie Children’s Hospital. That day was my first time meeting another intersex person—Pidgeon Pagonis, the youth coordinator of Inter/Act—face-to-face. It was also my first time on the other side of DSD (Difference of Sex Development) care, as an advocate sharing my experiences with this DSD (DSD is how clinicians usually refer to intersex) team.
After a morning of location mix-ups and delays, it seemed like the meeting might not happen. Just as I’d begun to lose hope, the doctors arrived smiling, introducing themselves, and settling in to listen to our presentation. They listened carefully to our thoughts, particularly intrigued by our brochures on “What We Wish Our Doctors Knew” and “What We Wish Our Parents Knew”. Pidgeon really impressed them with their thorough knowledge of current intersex advocacy efforts. While we didn’t always agree on everything, the doctors genuinely seemed to appreciate hearing our thoughts.
These doctors really impressed me. As part of my introduction I said, “I have Swyer Syndrome—I assume I don’t have to explain what that is?” However, I wouldn’t have been surprised if I did. At the specialist clinic in the same hospital I was born in, I still have to explain my condition at most visits; I spell out “S-w-y-e-r-s”, detail why I’m on hormone replacement, and remind them, “Yes, I actually do have a uterus.” I even created an “About Me” card so my doctors can just read about my condition, my medications, and how to discuss it with me. So when these doctors all nodded that they recognized the name, almost smirking at the idea that they wouldn’t, I was truly pleased. The team was so knowledgeable and appreciative throughout the afternoon, staying after their working hours until we’d been there for an hour and a half, longer than we had planned. And they asked detailed, interesting questions right up until the end.
One of the things that surprised me most, in a good way, was the doctors’ hesitant approach to surgical intervention. I was born with undeveloped proto-gonads which were surgically removed when I was three years old. My Swyer’s “streak gonads” were always going to either A) function in no useful way or B) become cancerous. Although I would have preferred to wait until I could make the decision about surgery for myself, I had reconciled myself to what I thought was a fact: doctors were always going to recommend surgeries like mine, no matter what. These doctors, however, understood why patients still want the opportunity to choose and understand the course of action taken on their body, even if only one course of action (like removing streak gonads) makes sense.
In short, I was completely thrilled that I’d made the trip to meet these doctors. They were kind, engaged, and respectful toward us—both as human beings and as intersex people who are experts on our own experience. I felt that we learned from one another that afternoon. Pidgeon and I shared our experience and perspectives, and the doctors connected with us in a meaningful way and shared their experiences and thoughts, too.
I wish I could see this team again and meet with other doctors as a part of the Inter/Act team. Although I am leaving soon for the Peace Corps, I look forward to my return. I want to continue growing with other Inter/Act members and sharing with other medical professionals.
So, after 21 years, I feel like I’m doing something more with my experiences and story. I’ve met another intersex person in real life, I have members of Inter/Act to think and work with, and I’ve met doctors who were eager to hear my experiences and think deeply about the care they provide. All in all, it was a pretty amazing opportunity.