Posts

Lianne Simon (1952-2021)

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It’s with a heavy heart that we inform the community that one of our beloved members, (Jennifer) Lianne Simon died of a stroke on August 25th. Lianne is our dear friend, colleague, the co-founder of Intersex and Faith , and a member of InterConnect for many years. Her obituary, part of which follows, can be read HERE .   "Jennifer Lianne Simon, age 69 of White House Tennessee passed away on August 25, 2021. She is survived by her loving husband of 21 years, John Simon; her sisters, Becky Bichlmeir, and Katherine Klett; brother-in-law Dave Simon, and is also survived by cousins, nieces, nephews, and extended family and friends. Jennifer was a firmware engineer, and she and her husband John were members of Faith Presbyterian Church in Goodlettsville."   Lianne has supported, advocated for, and befriended countless intersex people over many decades. Through her novels she enabled readers to envision growing up intersex. Lianne worked tirelessly to help religious people, especi

Official Name Change Notice

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    InterConnect Board and Staff     FOR IMMEDIATE RELEASE   INTERCONNECT SUPPORT GROUP Formerly known as AIS-DSD Support Group, InterConnect has transformed and is committed to serving all intersex people. [Columbus, GA - August 9, 2021] After community input, organizational alignment, and rebranding, AIS-DSD Support Group is now officially known as InterConnect Support Group. InterConnect Support Group shall hereby be referenced accordingly on all communication, content, and websites. Please adjust your content and resource material accordingly:   ● Organization Name: InterConnect Support Group ● Organization Nickname: InterConnect ● Website: www.interconnect.support ● Logo: Contact courtney@interconnect.support for files. ● Email: info@interconnect.support InterConnect is a compassionate and affirming virtual community, open to all intersex individuals, family members and allies, working together to promote a better quality of life through connection, support, education, and a

Dear Members, Family, and Allies,

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We hope the start of your new year is going well. This year, we are excited to have our three newest board members join the board. They each bring a unique l skill set. We are excited to see what we can accomplish this year! In addition to our new board members, we are so thankful for all those who volunteered in 2020. Wishing you the best in 2021, InterConnect Board and Staff

Living Out

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    with Banti Jaswal     As we celebrate Intersex Awareness Day we turn out attention to our incredible community for your thoughts on awareness and living authentically. Banti Jaswal (they/them), is an intersex artist, presenter, and Greater Boston Area PFLAG scholarship recipient. For this special IAD newsletter issue Banti shares about their experiences of becoming and living authentically. On Coming Out I was able to come out after I had a community of people who loved and supported me no matter what. With these intersex and non intersex people behind me I thought “well who cares what other people think”. I was fortunate that most of my experiences have been great. It's important to be prepared for questions that people may not know are offensive but this helps me with my speaking. The bad experiences don't hurt me as hard with my core family and friend’s love. Before coming out I wish I'd known that it is one step closer to being your true self. For me, at least, it f

Volunteer Spotlight

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  by L.J. Scott Seeking a support group in 1987, I had actually given up finding one by 2012. I wrote an autobiography and tossed it to the self-publishing winds thinking I’d only connect with other Intersex people over the fullness of time, long after my death. Imagine my surprise when I discovered this group in 2017! So used to being my own support group, I really didn’t know what to make of my first conference in 2018, but warmed up and connected with people starting with 2019's Camp Orchid. I’m thrilled to bring what few talents I have to the group. And for those who are curious, you may find my name on a Star Trek: The Next Generation episode somewhere out there...!   LJ Scott (she/her)  Member Engagement

A Message From the President:

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by Mary Mihevic   InterConnect (transforming from AIS-DSD) is committed to improving, growing, and learning from the highs, and lows, we have all experienced over our 25 year history. We look forward to incorporating the ideas and suggestions we received in the diversity listening session and from your conference feedback as we move forward through the future. InterConnect is on the final step of our legal name change!  We're just waiting on confirmation from the state where we're incorporated, and once we receive that notification, all of our group's private and public sites and our banking name will change. In a year like 2020, where distancing and concern for maintaining health are a central focus for most of us, it is more clear than ever that our connections to one another are so important and truly valuable.  We hope to increase the group's ability to maintain this connection throughout the year. It was really wonderful to see so many of you during our Virtual Con

A Message From The President

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by Mary Mihevic     Hi everyone! I am grateful for this opportunity to serve my community and to help lead this group into the future. We started off nearly a quarter century ago and we've grown to become so much more! We've blossomed into a vibrant peer based community and my goal is to find ways to enhance this. I'd like to have member voice and transparency become more of a driving force than ever, so please consider getting involved in a committee because we're strongest as a community when we work together to make our group better! As 2020 moves forward we plan to transition to the name InterConnect. Please stay tuned as we'd like input and creative ideas about our opportunity to re-brand. We'd like to get the website revamped and also consider a new logo. We want member ideas and contribution to be a part of this process. I do ask for your patience with the legal process of the name change, as we move forward, it may be necessary to complete after we handl

A Message From Kimberly

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b y Kimberly Saviano In late 1998, I was 28 years old; lonely, despondent, and suicidal because of a condition that I didn't understand and which I thought isolated me from everyone. I'd never allowed myself to be in any kind of romantic relationship because I just knew they'd find out about my terrible secret and that would be the worst thing in the world. I tried to fill my world with other distractions and activities, but the depression and anxiety continued to get worse and worse. I know I wouldn't have survived through the end of that year if I hadn't found this support group. But finding the group, making my first contact, attending my first conference, meeting the friends who I will always love and admire, and being nurtured as we all contributed our stories and voices to this group, made it possible for me to thrive. My own story sounds melodramatic to me now, I've told it so many times; and the life I lead now makes it almost impossible to believe that

We Have Decided On A New Name!

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  OUR NEW NAME WILL BECOME: InterConnect   As you are probably aware, AIS-DSD has been interested in changing our name to make it reflective of being the more inclusive and not specific to AIS group that we have become over the years. We are also looking forward to removing DSD from our name to remove the focus of medicalizing being intersex. We have spent over 3 years discussing it among different boards. We canvassed our membership, took member suggestions and held some online polling to see what folks thought. THANK YOU to everyone that submitted suggestions, and voted in our polls! We will begin the name transitioning process in 2020 There will be a legal name change and because of that we may need to announce methods to adjust ongoing donations that some of our members have generously established. There is no change in 2019 and no action is required form anyone at this time Stay tuned, as we prepare to re-brand we will have more information about tagline and other information!

Camp Registration EXTENDED!

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        Camp Orchid in Little Rock Arkansas, is 3 weeks away! Many of you have been to other conferences and wonder why this will be any different? Why do I need to go? What will be happening to the usual sessions? We have listened to feedback and many of our members were asking for more time to bond and connect. We have also decided to make this year all about our members and have moved away from having a CME or having clinicians at our event. We do have a special guest, Dr. Sue Stred, she will be there to help guide our new and old members through Intersex 101, 201, she will also be with us as a trusted ally for other topics and be available for private conversations if you would to ask her some questions or get some advice. For 23 years now we have been running these annual conferences with numerous speakers and agendas full of workshops and panels, but we are needing to expand what our members are needing. We know that the most powerful times that come out of our annual gatherings

Kimberly's Message

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    by Kimberly Saviano   Wishing all of you a very wonderful new year filled with all the joy and adventure you could want! I've started 2019 off with a fabulous beginning, heading down to Arkansas to meet with the board of directors and to check out the amazing site for this summer's conference. I can't tell you how excited and pumped I am after the wonderful weekend I got to spend with some amazing people, and the real start of planning for what I think will be the most amazing conference ever! I know... every year seems like the most amazing conference ever (and if it is YOUR first conference, then it TOTALLY is!), but this one is going to be really special. Every year, we ask for feedback about sessions and the conference, and we always get comments that are some form of "the sessions are great, but I wish I had more time to connect with people!". You also may have realized that there are people at the conference that you never really see because they are att

A Message From Our President

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b y Kimberly Saviano In less than 12 weeks, we'll be celebrating our community and fellowship together in Chicago ! If that seems like a long time to wait, it is -- but if you are involved in the planning and coordinating of this massive event, then it is feels like there is a blaring alarm waking you up every morning and you swear you can hear the ticking of a clock everywhere you go! Okay, okay... that might be a little extreme, but a lot goes into these conferences! We've got a great team of people helping out to secure speakers for our various workshops, plan parties and activities, coordinate with the hotel to ensure the amenities we need are in place and that the food options will work for our group. There are lots of ways to get involved too from helping out with registration, helping out in various workshops, donating items for the silent auction, and more! Write to us with any ideas you have to contribute or volunteer to help out! Don't forget that our early-bird p

A Message From Our President

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b y Kimberly Saviano As winter moves slowly towards spring, you might be thinking "Oh, the conference is so far out, I wish I could see everyone sooner!" but for this Board of Directors we're thinking "What? there are only 20 weeks left to the conference! We have so much to do!" Please keep your ideas coming for sessions and workshops that you would like to see and attend. Is there a topic you wish were covered? Let us know what that is, even if you don't know who could speak on it. Know someone who would give a great talk? Encourage them to submit a session or let us know and we'll reach out! And while we're talking with people to make this a fantastic conference, we're getting ready to open registration in the next few weeks. We'll also have our applications for scholarships for those who need help with conference registration. Meanwhile, we're now looking for nominations for the Board and for a new Secretary officer position. This year

A Message From Our President

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b y Kimberly Saviano I want to wish everyone very happy holidays! 2017 has gone by far too quickly and it's been an amazing year. We've had some incredible successes including the wonderful Phoenix conference in the summer, the Human Rights Watch publication , the statement released by the North American Society for Pediatric and Adolescent Gynecology , a successful shift from the Orchid Connect forum to Facebook groups, and the initiative to restart the monthly newsletter! We also experienced some losses, including people we loved, and decisions and practices continuing that we all wish would stop. We continue our work to support, educate, and do outreach to foster healthy outcomes for adults, youth, children, and families in our community! As we roll into 2018, we're excited by all the initiatives and projects we're working on. In addition to planning our summer conference in Chicago, which may well be the largest conference we've ever hosted, we are looking into

What This Group Has Meant To Me

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A disclosure story for Intersex Awareness Day: by Mary Mihevic   I write this because I stand with my intersex siblings together to say, we exist, we are not tokens, and we will no longer let the medical community violate our basic human rights and mutilate us or lie to us! Here’s why: it is 2017 and we STILL have Intersex Genital Mutilation, IN THIS COUNTRY. WE HAVE DOCTORS IGNORING THE INFORMED CONSENT OF THE INDIVIDUAL. We have fear and shame based thinking that is taking away self-determination. We have doctors influencing parents to alter babies genitals, to ‘assign’ them a biological sex when there is some visible ambiguity. We also have cancer “risk” being used as a scare tactic, without any real evidence of increased risk. I AM A WOMAN, I AM A HUMAN, I HAVE AN INTERSEX CONDITION. When I was diagnosed, my story was told to some of those that I thought were friends that would be there for me and show me love. Yet, my story was taken away from me, twisted, and used to mock me. I’M

A Message From Our President

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  by Kimberly Saviano       How is it possible that summer is already winding down? People going back to school, taking those last moments of summer vacation before Labor Day, and getting ready for cooler weather coming. Time moves so quickly, and these seasonal transitions put us in mind for planning, preparation, and thinking about the future. To that end, I'll be hosting a new series of conference calls to dig in to the long term planning for this organization and putting together the strategic vision for the next several years of the group. So much about our organization is changing and our growth has been outstanding. The first meeting will be on Tuesday evening, September 19th . Anyone who is interested and has the skills to contribute, please contact me at kimberly.saviano@aisdsd.org so we can talk about it. As things coalesce and we move forward, I'll use the newsletter to keep everyone updated! Along these lines of thinking of our combined future, election

Spirituality & Diversity:

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by Lynnell Stephani Long In a few weeks the AIS-DSD Support Group conference will take place, this year in Denver. I am both excited and nervous. Lately I’ve been going through some sort of spiritual metamorphosis and it’s making me think a lot about not only the people I want in my life, but also the spiritual path I am taking. This year I can honestly say I feel my spiritual path and my intersexuality path are the same, for now. I have been a devout Buddhist and Pagan for as long as I’ve been sober, 23 years. Yet at the same time I can say I have moments where I struggle with my spirituality. Someone said, when life gives you lemons make lemonade.  What they fail to realize is it takes some sort of sweetener to make lemonade, otherwise you’re still stuck with a pocket of lemons. My sweetener has always been a belief that I am exactly where I belong. By holding that truth I can say the days I struggle with Buddhism or Paganism are so for I can learn. Frederick Douglas once said, “With

Wrestling with Privacy, Visibility, and Legitimacy

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  by Georgiann Davis, PhD When I was a teenager I phoned The Jerry Springer Show seeking help in resolving my family’s conflict around finances. My working-class family and I saw the show as a legitimate source of assistance. The show didn’t return my call, but my search for help was very real. Roughly 20 years later I was speaking to a producer of The Dr. Phil Show about an upcoming episode where parents of an intersex child would share their struggles with one another over the formation of their child’s gender identity—a four-year old child named Aubrey. Within 72 hours, and thanks to Skype, I was on the Dr. Phil set ready to share my personal and professional experience with intersex. My hope was that I could help these parents, or anyone else with intersex experience, understand that gender was fluid and contextual. Mostly, though, I just wanted viewers to know intersex was a normal and natural variation. When the show previewed on the internet, I heard a number of val

A 2015 Conference Experience

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by Marissa Adams “The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart.”  Helen Keller Hello everyone! So I was asked by our lovely AIS-DSD president, Georgiann Davis, and also Amber Jones, to write a summary of what my first AIS-DSD conference was like. Well I love writing, so it’s not going to be a summary it’s going to be pretty detailed, I hope that is ok. This conference was truly an eye opening, life changing experience to me so I have decided to be pretty detailed in giving specifics of my past. Well I was born to two loving parents on August 24, 1992 at the Brigham and Women’s Hospital in Boston, MA. My parents were stationed in Maine at the time, and I was 2 months premature and there was no hospital at the time equipped for delivery of a baby that premature; so they put my mom in an ambulance for 2 hours to Brigham and Women’s in Boston. *The following is based off of what I have learned from my medical records and

2014 End-Of-Year Message From The President

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  Dear AIS-DSD Support Group Members and Allies   by Georgiann Davis, PhD   Before we celebrate the beginning of a new year and the 20 th year anniversary of our organization, I’d like to thank each and every one of you for your involvement in all that we’ve accomplished in 2014. When AIS-DSD Support Group was formed in 1995 (then known as AISSG-USA Support Group for Women and Families), I was recently diagnosed with complete androgen insensitivity syndrome. My parents felt isolated, and I felt scared. I was not told I had CAIS, but by the way my parents were Fun Group Shothandling the diagnosis, I assumed something was seriously wrong. My parents and I didn’t know about the AIS-DSD Support Group, and I grew up all alone.  In 2008, my world turned around and it felt amazing. I attended my very first AIS-DSD Support Group conference in Chicago, IL, and I was welcomed with open arms into a community that I will forever see as my home. I was also determined, as a young soci

On Learning How to Listen:

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  A Doctor’s Experience at the AIS-DSD Support Group Meeting by I.W. Gregorio Things they teach you in surgical residency: The best way to sew subcuticular stitches. How to place a central line. How to perform laparoscopic (keyhole) surgery. Things they don’t teach you, except by trial and error, in a sink or swim fashion: Empathy. How to talk to patients about difficult topics. How to connect them to people who understand what they’re going through. The first time I ever treated a woman with AIS, I’ll be honest: I was excited. So was my attending surgeon as he told me about the case while we scrubbed for the operating room. Typically, in residency, the senior doctor works the patient up–residents often don’t meet the actual patient until just before the surgery–so when I learned that my patient had AIS and was going to have a gonadectomy, I nodded my head. I blithely assumed that my attending had gone over the appropriate risks and benefits of the surgery. During medica

I Was Born Looking Like Other Baby Girls

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by ''Cindy'' I was born looking like other baby girls, and my intersexuality was not uncovered until age 17, when I visited a doctor since I did not menstruate. My doctor discovered I had male gonads and XY chromosomes, but — following standard medical practice in the 1970’s — lied to me about what they had found.  They simply told me I couldn't have children due to a "birth defect", but there was nothing to worry about, as I was a completely normal female.    I did not learn the full truth and the significant health risks of my syndrome until age 34 in the early 1990’s. I have the complete form of Androgen Insensitivity Syndrome.   Standard medical protocols today urge individuals with AIS to have our undescended testicles removed in our early 20's to prevent testicular cancer at mid-life.  Had I not become inquisitive on my own at age 34 about my medical needs, I might have developed cancer and died very prematurely – no thanks to these doctors. I ha