(Em)Powering Our Futures: Breaking the Silence on Women and Turner Syndrome

As this article collection slowly draws to a close, there is no better time than now to revisit my first article, which examines the history of women’s health and the continuing battle for women’s rights across all areas of their lives. Although each of my articles is rooted in my beliefs about the importance of continuing to fight for women’s rights, particularly when it comes to health and healthcare, I believe it is necessary to closely investigate the issue once again. Like many issues we are continuing to face in this country, there is a tendency to assume that once we are saturated by personal tales of injustice and pass a few laws, the problems of racism, sexism, fear, and hatred will disappear. Unfortunately, changing notions that are deeply rooted in our country’s history is not so simple.

We speak about women today as if the problems women have faced in regards to equality exist only in the past. We see women vote, run for President, and choose to be mothers on their own time and in their own ways. We like to say that women are equal to men, but it often doesn’t feel that way — just ask any woman how she feels about the wage gap, or how much “choice” she really feels when deciding whether or not to pursue a certain career, motherhood, or both. As we continue to fight for true equality — a long, difficult, and often mysterious process — there’s no denying that women’s empowerment is an important step along the way. This holds especially true for girls and women with Turner Syndrome, who face additional obstacles beyond that of their sex. The idea that we should all work to empower women to empower themselves was one of the first tenets that I was introduced to when I joined the team at the Turner Syndrome Foundation. As I’ve pursued my research over the past nine weeks, this idea has stuck with me, and it has proven to be undeniably true.

The fact that women’s empowerment has become a small obsession of mine would have shocked my past self. Just two years ago, I would have stated that feminism didn’t apply to me, that I wasn’t a feminist. I’ve lived a very privileged life as an upper-middle class white female, complete with great education, good grades, a supportive family, plenty of opportunities, and a healthy mind and body. Throughout my school years, I excelled in science and math, and never felt I was treated any differently because I was a girl. No wonder I felt that I didn’t need feminism: I couldn’t see its use when I had been so extremely fortunate in almost all aspects of my life. During this time, I also used to conceptualize friendships differently. To me, a friend was someone who would confide in me, but not someone I would often confide in. I was scared to rely on people, scared that my trust or loyalty would be betrayed, especially when I felt any problems I experienced in my life were nothing to complain about. A few momentous events in my life completely flipped these perspectives. I came to realize that feminism did apply to me, and even when I didn’t personally feel its necessity, there was always a woman somewhere who did, and that was worth fighting for. I also realized that friends are an invaluable support network, and I found myself making more meaningful and lasting relationships once I trusted that my anxieties and experiences were worth talking about just as much as anyone else’s.

I know I am not the only woman, or person, who has felt these things. Whether it be because of privilege or a deep-seated belief that they are not worthy, women can and do question the relevance and importance of feminism and healthy, supportive relationships. The truth is, we are never really alone as we face adversity in our lives; there is always someone there to support us. Even so, we are sometimes physically on our own. Our family does not follow us around the halls of school or trail us as we make our way across campus; our friends have jobs of their own from 9 to 5. While we will always find people to rely on, in certain moments we can only rely on ourselves. That’s why women’s empowerment is so important. We need to empower women so they feel empowered through themselves, so that they feel encouraged and supported any time they communicate their feelings or take a stand, regardless of who they are interacting with.

Nearly all of the girls and women I’ve spoken to about their experiences with Turner Syndrome have this quality. They speak so openly about their diagnoses, about the challenges and the highlights, and it is clear that they not only have supportive networks, but that feminism most certainly applies to them. While becoming your own advocate is the most powerful tool you can create for yourself as you face the obstacles of the world, it is not always easy to get there. In fact, it takes tremendous effort and courage. This is, in part, due to a continuing culture of silence around women’s issues, and an even more prominent culture of silence surrounding Turner Syndrome. For much of our history, women were assumed to be the quieter sex, reflected in the way we have been treated by society and the field of medicine. No one should ever know we’re on our period, and we should never engage in politics. These remnants of our past continue to impact women today, and are only compounded for a girl or woman with Turner Syndrome, who is often pressured to feel that the best way to handle her diagnosis is to keep it a secret. We need to break these cultures of silence, even though doing so is hardly ever comfortable. It’s loud, and people fight back, but unless the information is out and exposed, it will never be accepted. It takes time for things to settle and for people to accept change, but soon it becomes the new norm.

When we learn new information that challenges our assumptions, although it is often uncomfortable, new truths and possibilities arise. We learn more about ourselves, even the ugliest facets, and through doing so, we can work more deliberately toward solutions. Take “Women Primed to Give Big — if Nonprofits Are Willing to Change,” an article by Megan O’Neil published in The Chronicle of Philanthropy just this past June. In the article, O’Neil outlines the fact that while men tend to give larger one-time donations to nonprofits, women are in many ways the smarter resource for nonprofit companies. Although women make smaller donations than their male counterparts, they donate more frequently, and because they statistically outlive men, they have more opportunity to donate throughout their lifetimes. Despite this promising finding, nonprofits continually target men for donations. Unfortunately, this bias toward men is found in nearly all aspects of our sexist society. We continue to see men as the breadwinners, or at least primary breadwinners, for their families. Men are even paid more than women in part because of this underlying assumption, therefore perpetuating the assumption and grounding it in some reality, allowing it to perpetuate further. However, there are certainly cases where a wife makes more than her husband, or where she is the sole provider for the family. Clearly, our assumptions are not often based in truth — it all depends how you frame it. Nonprofits could accurately consider women to be more beneficial donors than men if they simply change their framing of what it means to be a valuable donor. Similarly, individuals can frame Turner Syndrome in whatever way they see fit, but in order to do so, they must first be willing to talk about the condition. After all, invisible things cannot be framed.

We can’t force people to do things they don’t want to do, but we can change the environment they find themselves in to encourage empowerment and activism. We can and must strive for a world where women feel they truly have choices and impactful voices. We must keep working toward women’s equality through our laws and the power of our own voices, but also through what we present in the media and what we teach our sons and daughters at home and at school. These battles are all intertwined. We cannot assume that a law will instantly establish equality — it can’t and it doesn’t. It is our responsibility to ensure this equality permeates all aspects of our lives through the way we speak about ourselves and others, both to ourselves and with others.

If we are empowered to speak up, we can empower others to do the same. The more people are informed and speaking out, the more likely we are to navigate our way through our complicated history and seek a path to a truly equal future. This path will not be easy or short, but by empowering ourselves and one another, at least we won’t be stagnant as we wait for times to change. We’ll be taking the steps that are required to make it happen.

Weekly Challenge: If you’ve made the generous decision to donate time or money to the Foundation, now’s the time to take your generosity one step further. This week, I urge you to participate in a Turner Syndrome Foundation event as a sponsor, volunteer, or participant. Check out upcoming volunteer and fundraising events on the Foundation’s event page. Participate and help empower girls and women with Turner Syndrome to empower themselves!

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