Public Education Update:

DSD Workshop, Gurnee, Illinois, September 19, 2008

Treasurer of HEA

As chairman of the Public Education Committee, I wanted to present an update. It is still disheartening to feel isolated due to the secrecy that surrounds the terms ‘Hypospadias’ and ‘Epispadias.’ It has been two years since I started full-time as a case manager with the Lake County Health Department in northern Illinois. It borders Cook County (Chicago) to the south, Lake Michigan to the east and Wisconsin to the north. When I made the decision to apply for employment in the county where I reside, I made a decision to put my activist affiliations on my résumé. Having served on the board of HEA for five years now, four years as treasurer, I volunteered to see what I could do in efforts to increase educational efforts. Each year we hold a conference and gain experience and better understanding. But I am always frustrated with the way that I can go to a health care professional (therapist, counselor, social worker) and they have never heard of these conditions. With that said, I went through numerous interviews and the questions were asked regarding Hypospadias and Epispadias. I found that as I met more people and I would share parts of my story, they would be curious and empathetic. I had been asked by several supervisors to do training on Hypospadias, Epispadias and Intersex differences.

I have attended several training seminars for CEUs (continuing education credits) as I advance toward licensure. Some have been quite effective while others seem like people are dealing with their own issues. I agreed to orchestrate the training for the county if I would not have to be a major presenter. I want the therapists, social workers, case managers, and other health care professionals attending the seminar not to be focused on me, but on the material. I will be doing introductions and be presenting the documentary ‘Is it a Boy or a Girl?,’ which shows a number of stories of persons living with intersex conditions including more severe types of Hypospadias.

For speakers, I was able to get David Sandberg, Ph.D., who spoke on DSDs (Disorders of Sex Development) at our New York Conference. I had also met David at the DSD Symposium in San Francisco in November of 2006. Dr. Arlene Baratz was also a presenter at this symposium. She has two daughters with AIS, Complete Androgen Insensitivity Syndrome. She shared medical information as well as her story as a mother of two daughters with this condition. During this conference I was fortunate to meet several different people with varying DSDs. We shared our feelings of shame and isolation, but also our resiliency, and our hope for change. With change in mind, I was asked to be part of a panel discussion regarding my life with Hypospadias. In February of 2007 I met with several others again in San Francisco to discuss legal rights for people born with intersex conditions and or DSDs. Arlene and I were able to share more information as well as form a bond for moving forward. She was recently on the Oprah show, regarding the topic of Middlesex. As far as the third speaker I was able to coerce our very own Executive Director, Billy! I guess I don’t need to go into how we met at the 2nd HAA (then) Conference in Denver, CO. But we did, and I’ve been happily codependent ever since.

The seminar will be held at the Grand Ballroom of the Holiday Inn Gurnee, in Gurnee, Illinois, on Friday, September 19. Registration is at 8:30am and the workshop will run until 4:00pm. There will also be discounted rooms available at the Holiday Inn. If you are interested in attending, follow these link to the flier/sign up form and program.

My hope is that with this training, we will better be able to offer CEUs as well as have a better formula for topics for one-day training seminars and topics that could be used at future conferences. Focusing on the health care community could also mean a future alliance with people who should already be in the know.