Throughout elementary and high school, Piper Kearney says, she was bullied — taunted with “terrible verbal” insults. The London resident, now 30, was born intersex, which, according to the Intersex Society of North America, is “a general term for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male.”
“I didn’t want to go to school,” Kearney says.
After graduation, she gained weight and developed an eating disorder. “I was eating to cope with society,” she says. “I’m still doing it.” To escape unwelcome attention, she says she adopted a nondescript wardrobe of baggy jeans and loose tops.
According to a 2016 Australian survey, many intersex people face stigma. One-fifth of the 272 survey respondents had dropped out of school before graduation; only a quarter reported having had a positive experience during their school years.
By 2014, Kearney decided she needed to make a change. She felt she was luckier than most —she credits her parents with being supportive and understanding, and she’s glad they opted out of surgery in her infancy. “I just had a feeling inside me,” she says. “I needed to do something.” She decided that the general public needed to gain a better understanding of the intersex population — which, she says, is bigger than most realize. “I just want to improve other lives,” she says. “I’ve been there when there is no one there to get help or support.”
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Last year, with the assistance of Faith Connor, a local social worker, Kearney established Intersex London. The organization creates educational materials, conducts information sessions and a monthly support meeting, and advocates for legal changes to protect intersex people’s rights.
Today, Kearney is raising the intersex flag — a purple ring set against a yellow background — at city hall to recognize Intersex Awareness Day. “An intersex person out of Australia designed it in 2013,” Kearney says. “Yellow is non-binary.”
TVO.org sat down with Kearney and Connor to discuss the challenges facing the intersex community — and why it’s important to fly the flag at city hall.
What does it mean to be intersex?
Piper Kearney: Intersex is an umbrella term where sex-carrier characteristics — anatomy, gonads, chromosomes, and hormones — don't fit into the male or female category.
Faith Connor: The umbrella term actually fits over 35 different variations of sex characteristics. There’s chromosomal conditions like Turner syndrome, Klinefelter syndrome, and hormonal conditions such as androgen insensitivity and partial androgen insensitivity.
The numbers are quite small when you look at the specific variations. But when you look at all of them, [nearly] 2 per cent of individuals fall into the intersex umbrella. So in London alone, that's 8,000 people.
Are there medical conditions associated with any of these characteristics?
FC: There can be, depending on the variation. One situation where you do need to intervene is Congenital Adrenal Hyperplasia. It's called salt wasting, when the body can't hold on to different sodium and other nutrients that it needs. That's normally seen at birth. Or, if the urethra is closed over, then you really do need to intervene on that as well. Because if you can't pee, you're not going to live very long.
What are some of the other challenges?
FC: One out of every 2,000 births is visibly intersex. They have what doctors call ambiguous genitalia. Unfortunately, a common practice is to perform surgery to make the genitalia fit the typical notion of male or female. That can be as many as five surgeries in the first year of the child's life, causing scarring, infection, loss of nerve response — so lack of sexual sensation when they get older.
In the Criminal Code, in the part that makes genital mutilation illegal, there is an exception for intersex individuals.
Sixty per cent of those surgeries are normally incorrect, so they're assigned to the wrong gender, which is a pretty staggering number. So you have a lot of intersex individuals who will identify as transgender later on.
PK: What we need as a community is informed consent — so wait until the child's old enough to make the choice themselves.
In Canada, we need also need to change access to medical records.
FC: So if a doctor deems the client can't handle the information, they can withhold it from the client.
Some individuals don't know that they're intersex their entire life. Some individuals are told that it's just a hormone variation.
That does lead to a lot of trauma for intersex individuals because of the secrecy and the instability of not knowing who you are. Trying to go through life knowing who you are is so difficult, trying to figure things out. But then when you throw in the uncertainty of being raised as one thing, when you're not given the whole story, or if you're told to hide part of it — that can be so much more traumatic because you're always trying to keep up that facade.
Isolation is a real thing that a lot of intersex individuals face. That also overlaps with the trans community because when you're transitioning, or you don't feel that you have to go fully transitioned to be who you are authentically, people backlash. And it's scary to be in that. There's an overlap with substance abuse, homelessness, lack of employment, and the ability to hold a job because of trauma.
How have others in the community responded?
FC: We've only had one [group support] meeting so far, in October. We've met four individuals who have openly come out about being intersex. Two of them were like, “I didn't even know that that fell into it.” They were only ever given their hormone-variation category. And, when we were going over some of the different ones, one of them was like, “I have that!” It was amazing. It was really great to see that and to build that connection.
Why is flying the intersex flag important?
PK: It's the first time in London to have the flag raising, to have members of community come out to support this event. To see that London is changing slowly, hopefully for the better.
FC: And we're hoping that, after the event, maybe some more people will feel comfortable coming to our support sessions for intersex individuals, their families, their partners, their friends, so that people can build better community [and] show that they're not alone.
PK: We need allies. We need people to start educating themselves about the intersex community. We need to sow visibility.
This interview has been condensed and edited for length and clarity.