Tuesday, November 29, 2016

Elementary School

 Where are you Kid?

When I was a kid I always wanted to be normal. I might not have known what normal was, but I knew I wasn't it. I grew up very short stature and androgynous. To be honest, I liked looking androgynous, I liked being both and neither. Unfortunately for me no world existed where a kid could just be a kid.

I grew up on the south side of Chicago, in a close-minded community where there was no room for someone like me. I grew up where men are men and women are women, and someone like me was never suppose to make it out alive. I think that's why in the beginning I enjoyed going to the hospital for numerous tests. I knew they would study me like a guinea pig, but it was like a vacation from my real life.  At first it was fun, meeting people from around the world. Every year during summer break we would all meet up again at the hospital.  But I soon noticed that even though we were all there for a growth hormone study, I was the only one whose genitalia was being examined. That's when I realized I am different.

Every morning a group of doctors would enter my room and expose my genitalia. They would all crowd around my bed and stare.  "What are they staring at", I often asked myself. When they left they often left without replacing my hospital gown. So I would lay there waiting for someone to rescue me. After the i.v.'s were removed and the examination was over I would be allowed to go play with the other kids. I don't ever remember asking anyone if they were examined like me, but I was a curious kid so I'm sure at some point I did.

Numerous times I would have an i.v. in both arms, and couldn't move. I was powerless against the parade of doctors coming in my room to examine me.  For years I had a reoccurring nightmare of that scene, of being surrounded by a group of doctors in lab coats and feeling afraid and vulnerable. Feeling like no one was there to protect me.  Losing myself behind a wall of emotions.

During this period in my life I also suffered from asthma, and was also hospitalized for long periods of time at a Children Hospital. To avoid missing too much school I had classes at the hospital.  This eventually caused problems for me because whenever I returned home and went to school I was told I talked white. So while I was still picked on, it was no longer because I was Intersex and looked androgynous, it was because kids thought I thought I was better than them.

This caused more stress for me, which caused my asthma to flair, which ended with me being hospitalized and attending more classes in the hospital, which ended with me being picked on even more when I returned home.  I cried myself to sleep on many nights,  not knowing what to do.

I suffered through elementary school with asthma attacks, summer vacations in the hospital for more test, and being picked on through it all.

One memory I still managed to hold on to, and probably the reason I love walking to the lakefront today, is once at the children Hospital I looked out my window and noticed the lake.  I've seen the lake many times, I've been to the lake many times, but this time I felt empowered.  I felt like life through everything at me and I am still here.

The day after my 8th grade graduation I had a major asthma attack, and would be hospitalized for a few weeks. I was happy I was leaving my elementary school.  I thought High School would be better. 

I was wrong.

Saturday, June 25, 2016

In the background

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, "Without struggle there is no progress". And it's true. Everything I learn through A.A, Buddhism, and Paganism wouldn't help me unless I apply it to my life. So what am I struggling with today?

When I was asked to join the board of directors for the AIS-DSD SG I thought about it before saying yes.  I have always been an Intersex Activist & Educator, but how could I make that work on the board, in the background?

The Intersex community like so many other communities are learning as we go along. For instance, I am the first black person on the board of directors of the AIS-DSD SG, what pressure. I struggled with how to stay true to my radical activism while being a board member. Once of the first duties I was assigned was to from a diversity committee to help diversify our organization. That too was a struggle in the beginning. I honestly felt like it was up to me, and me alone, to diversify an organization that recently celebrated it's 20th anniversary.

I soon realized I couldn't do it alone. Even with the help of others I had to depend on my spirituality to help me. So I meditated, lite candles and incense, and asked that everything I do I do from my heart.

It was hard at first being in the background. I wanted change to happen quicker. I wanted spirituality to be a part of the healing process for everyone. So many of us struggle with PTSD and trauma from years of medical abuse, myself included.  When the Diversity Committee was formed the radical activist in me was very helpful. I took everything I learned from my years of activism and applied it. I had awesome people work as hard as I did to get things done. WE started the Diversity Committee and WE work hard to see that everyone is welcomed.

This year is the first year the AIS-DSD SG added a spiritual track to the conference. When I learned of the components that has been added to the conference this year I immediately thanked the person responsible.  This year for the first time ever there will be a healing circle, and a drum circle. Rather you are spiritual or religious it's all part of the healing process.

So much has changed in the two years I've been on the board of directors, but we still have so far to go. I am truly grateful my spiritual path and my intersexuality path are one this year. Last year at the diversity committee workshop "Embracing Diversity" several people expressed their desire to see a spirituality track at the conference. This year it is no longer something a few of us hope for, it's happening.

For over fifteen years I fought on the front lines of the Intersex movement. I've traveled to 30 of the fifty states of America, and Canada, educating people about Intersex.  Now, as I sit in the background, I can see how my path has lead me to where I am now.

If you or someone you know is intersex visit the AIS-DSD Support Group at aisdsd.org.

Wednesday, May 18, 2016

Where have all the children gone?

They are disappearing one by one
Where have all the children gone?
WHERE have all the children gone? . . .

-Ella Lynn

I read an article recently that said in a few years parents will be able to decide what sex they want their child to be, hair color, and color of their eyes. The article startled me because I know what's next. Next they will be able to "fix" an intersex child.  Finding the "gay" gene have already been discussed. So while scientist are trying to produce the perfect baby. Will Intersex be a thing of the past? If so do we call what the scientist are attempting to do genocide? 

But you can still hear voices singing out songs
And their blood is invisible ink on the walls
Where have all the children gone?
Sometimes I look at my baby picture and want to protect that kid. The kid that had no idea what life would be like in the future.  The kid that often times felt alone in a house full of people. I don't have a lot of pictures of me as a baby, I want to know how often did that kid smile? Is that fear in my eyes? Apprehension? Or just distracted when all I obviously wanted to do was eat the candy in the bag.

When I was in grade school I got picked on for being different. I was very androgynous, and people often asked me if I was a boy or a girl. It always bothered my mother more than it did me. When I looked in the mirror I didn't see a boy or a girl. Today I prefer Intersex as my gender.  While it may confuse some people, no one has to live my life but me.

They mock their pain and drove them farther into gloom
They shoved, and hit, and kicked
It was just a joke
Until they found their empty room
Where have all the children gone?

In the summer of 1975 our neighbor was chosen for a site of a movie, the movie was called "Monkey Hustle".  While my brothers were happy to get up early in hopes of being an extra I had no interest.  Even though I was very successful at avoiding the cameras, I wanted to see my brother play the  limo driver.  I rushed to the front of the crowd just in time to be caught on camera. I've probably watched the movie a dozen times, but it wasn't until recently that I saw myself.  I was 12 years old and my life as I knew it was about to get worst at school. I was shoved, hit and picked on more than ever. 

We remember when we saw them laughing, dancing
And swooning at anything that moved
They waved ribbons and tied strings
Those strings are now their death rope
They are disappearing one by one
Where have all the children gone?
WHERE have all the children gone? 

At the end of the article I was reading someone asked the scientist do they think it's wrong to play God, interesting that's the same question most doctors get when they perform genital mutilation on Intersex babies.

Thursday, March 31, 2016

Suffering in silence

When I was a child, and in the University of Chicago Hospital, I contemplated death more than life. At the age of 14 I was told I was infertile.  The doctor told me matter of fact, and never offered any sort of emotional support. I was told this at a time in my life when I felt I needed unconditional love more than ever. It was the coldest office visit I ever had. I didn't know what to do with that information, who was I to tell? I was asexual at that time, so the only person I could tell was my mom. I can't remember her response. All I remember is going home and attempting suicide. I remember feeling this emptiness within me that some part of me felt having a child, unconditional love, could fill. Once that was taken from me I had no reason to live.

I was being treated for Tuberculosis at time, something I had contracted from another patient at the hospital.  I went home and took all the medication they gave me. When I woke up that evening I cried. When I was asked what was wrong, I lied and said nothing! Who does a 14 year old Intersex child tell about the pain they suffer in silence? 

When I returned to school that Monday I was different, I had lost my flair for life. School was only a means to an end. That summer I tried marijuana for the first time. I didn't like it at first. It made me feel stupid, it controlled my thinking and caused hallucinations. But it was very successful at masking my pain. At the age of 17 I was smoking pot almost everyday. I was still doing good in school, so no one noticed.

Even though I still had regular visits at the hospital I started to skip my appointments more and more. Nothing the doctors said would help. I resented them. In 1981, when I was 18, I agreed to be hospitalized once more that summer.  This after being hospitalized for studies every summer from the age of 10 - 18. The doctors told me there was new drug that could possibly reverse me being infertile. This was a trial drug that had no positive affects on anyone, but they thought it would be great to try it on me. Of course it didn't work. I was more frustrated than ever. I grew angry at the medical establishment, and didn't trust any doctors.

I never returned to the University of Chicago Hospital again, until 2014 as a paramedic taking a patient to the emergency room.

I abused drugs for many years, escalating from pot to harder drugs. In February 1993 I signed myself into the rehab, and I've been sober every since. I made a promise to myself that I would never use drugs or alcohol again. I knew I had to find a way to deal with my pain. I knew I had to talk to someone.  Luckily I found a very good therapist, and I attended A.A. meetings regularly.  For years I tried to be what the doctors wanted me to be, and what my mother wanted me to be. It was time I decided what I wanted for myself.

On February 17, 2016 I celebrated my 23 year sober anniversary. Today my life is filled with spirituality, and my Intersex community. I am on the Board of Directors of AIS-DSD Support Group (aisdsd.org), and interACT Advocates for Intersex Youth (interactadvocates.org). I work hard for both organizations to prevent what happened to me to happening to Intersex youths.

Wednesday, March 16, 2016

What is Intersex?

I have a confession.

I am guilty of assuming that everyone already know what is the definition of Intersex. So often times it comes as a surprise when I meet people and they tell me they do not know the definition of Intersex.

Here is the definition of Intersex, from the UN Intersex Fact Sheet:

Intersex people are born with sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies. Intersex is an umbrella term used to describe a wide range of natural bodily variations. In some cases, intersex traits are visible at birth while in others, they are not apparent until puberty. Some chromosomal intersex variations may not be physically apparent at all.

According to experts, between 0.05% and 1.7% of the population is born with intersex traits – the upper estimate is similar to the number of red haired people. 

Being intersex relates to biological sex characteristics, and is distinct from a person's sexual orientation or gender identity. An intersex person may be straight, gay, lesbian, bisexual or asexual, and may identify as female, male, both or neither.

Because their bodies are seen as different, intersex children and adults are often stigmatized and subjected to multiple human rights violations, including violations of their rights to health and physical integrity, to be free from torture and ill-treatment, and to equality and non-discrimination.

Here is a link to the full UN Intersex Fact Sheet document:

Wednesday, March 9, 2016

Buddhism and Gaia.

I can't remember the exact moment I knew I would be Buddhist, but I do remember feeling a deep sense of serenity. I knew my path to being a Buddhist would not be easy, especially since my mother was a minister.

The problem was I never believed in a biblical God. I never liked the idea of suffering in this lifetime and not being held accountable except on Sundays.  It also upset me how organized religion was used to oppressed people of color.  And I never thought a loving deity should be feared.

The first book I read about Buddhism was "The Heart of Buddha's Teachings" by Thich Nhat Hanh. It explained the philosophy of Buddhism, and an cessation of suffering.

There are many sects of Buddhism, it's up to the individual and what your beliefs are.  For instance I am Mahayana, but I also believe in aspects of Tibetan Buddhism and reincarnation.  I've had too many past life experiences not to believe in reincarnation. Sometimes I think I am Mahayana only because I've been reincarnated so many times it may be my only chance at enlightenment. 

The Buddha in me was awakened around 23 years ago. It was around that time that I got sober and started to explore religion seriously. Maybe because in A.A. there is a lot of God talk.  I didn't think I could stay sober if I can to believe in a God.  However I did believe in Goddess.

I've always thought God was a woman. When I was a child I had dreams of a woman protecting me. So I studied paganism, and fell in love with the notion of Mother Earth, Gaia. When I became Buddhist I thought I had to let go of Goddess, but Buddha, unlike the Christian God, never said thou shall have no other God before me. So when I pray and meditate it is to Buddha and Gaia.

They both work for me.  In times of trouble I say, "Buddha walk for me". Or "Gaia speak for me".  That way I always come from a place of love and compassion.

(meaning I respect the Buddha in you)

Thursday, March 3, 2016

Growing up Intersex in the black community

I started to pick an easier topic in which to discuss but I have never been one to take the easy way out. I was the kind of kid that always snatched off the band-aids instead of peeling them off slowly.

I grew up on the south side of Chicago, in an all black community. I liked to call myself honorable child number 6, my mother had eight children. My medical career, as a patient, at the University of Chicago Hospital, began when I was around 8 years old. My mother originally took me to the hospital because I wasn't growing as fast as other kids my age.  Turned out I suffered from Growth Hormone Deficiency. One of my many diagnosis I was given.  Others include Panhypopituitarism, hypoadrenalism, hypogonadism, gynecomastia, and several others.

There was never any difference between the way I was treated by people in my community until the hospitalizations started. While I was originally treated for growth hormone deficiency once I hit puberty the madness began. ( I will write about this at another time)

I'm not sure if I was made to feel different from others, or if that was some internal fear, but being hospitalized for weeks at a time, every summer, for 8 years, can take a toll on anyone. I think instead of breaking, and losing it, I lost myself in books. To be honest I think I was treated different because I talked different, and acted different.  While I was hospitalized I socialized with a lot of people outside of my race, so my diction - the way I spoke - became proper. To me it was just another reason to be picked on.

Growing up Intersex in the black community was not easy being intersex.  No one could identify with me because I looked different.  Even though I was raised male the boys couldn't identify with me because I had breast and acted like a girl.  Some of my female friends were cool.  In a way I felt protected by the girls in my class. They prevented me from being harassed and beat-up just for being different many times.

When I first got involved in intersex activism I was sent to the University of San Diego, by the ISNA (Intersex Society of North America). I, along with several others, were to educate medical students about Intersex. It would my introduction to life as an intersex person, let along life as an intersex person of color. I was scared, and felt very intimidated.  But I knew, I've always known, the work we do as intersex activist is very important.  It's important to end the shame and secrecy of being intersex.  It's important to stop intersex genital mutilation.

When we left the University I felt a sense of accomplishment.  I knew I could do that again, stand in front of a crowd and say, "My name is Lynnell Stephani Long and I am Intersex". One thing I learned early on is when you are speaking to a crowd of people it's important to look them in the eyes.  You want them to see you as a human being, not a specimen. I wanted people to see me as a survivor, not a victim.  What happened to me, and countless other Intersex people, is devastating. That is why I do what I do.  That is why I out myself as Intersex over and over again.

I think in a way I was always destined to be an activist. To fight for those that do not have a voice.  I remember playing on the playground as a kid and defending those weaker than myself even though it would bring attention to me.  But someone had to do it.

Wednesday, March 2, 2016


March 2, 2016

I've decided to make a blog.  Even though I've never blogged before I do journal.  Although I do not anticipate my blogging to replace my journal.  Somethings are just too private.

I never wanted to be an Intersex Activist. I only wanted to find the support I needed. When I first met Bo Laurent it was she that convinced me to be an activist.  There weren't many people of color fighting for intersex rights, so somebody had to do it.  In the beginning I was the only black intersex activist I knew. Can you imagine the pressure.

But I stood up to the challenge again and again. There were things happening to intersex children that not many people knew about.  Things like Intersex Genitalia Mutilation, and kids forced to live with PTSD without the proper tools to heal and grow.

After awhile I never looked back. It was like it was Goddess' mission for me all along.

Next time I will talk about my first time speaking in public.