A New Perspective on Bathrooms

by Miriam Barnett
CEO of the YWCA Pierce County

No big deal. It’s just a bathroom.

Right?

That is exactly how I would have responded if someone asked me about our bathrooms at the YWCA. Then I attended a workshop at the YWCA USA Annual Conference called “Addressing Issues of Gender Identity and Gender Expression.”

As I sat in the audience listening intently to panel member Kylar Broadus, I heard his personal stories of violence for being a female-to-male (FTM) transsexual. I never thought about what it would feel like to have to decide which bathroom to use. And I certainly never thought of the humiliation and violence that trans people endure as a result.

In that ah-ha moment, the light bulb went on in my head (and heart). The best thing about being human is gaining knowledge and then acting on it.

Back at home at the YWCA Pierce County in Tacoma, WA we had bathrooms clearly labeled “Women” and “Men.”

I took my concern for the way we were labeling our bathrooms to our Cultural Competency Committee. Gaining their full support, we decided that we would discuss changing how we label our bathrooms at the next all-staff meeting that was almost a month away. Then someone said, “But we have a trans FTM (female-to-male) with a baby right now in our meeting room.” The only changing table was in the women’s restroom.

Waiting was out of the question.

Temp bathroom sign

While one committee member went to let the individuals in the meeting know of the change, another committee member printed up temporary signs, and I typed this email to the 45 members of our staff:

“The Cultural Competency Committee met today and on our agenda was a discussion about bathrooms and how people identify. At the national YWCA Conference, Jennine and I heard a trans speaker share how he has endured unbelievable personal violence as a result of the bathroom he chose to use. This made us aware that our bathrooms force people to make a decision that does not always include their identified gender.

Examples of bathroom signs were shared that create gender inclusive and welcoming environments for all. You may notice that we have placed temporary signs on the 405 main floor bathrooms.

We will be making some changes. For instance, the bathroom now identified as “men” will become a single locked door. The bathroom now identified as “women” will have privacy strips attached to the stalls.*

Until we get the right locking door for the former men’s bathroom, if you prefer to use the bathroom on the mezzanine level, it already is a single locking door bathroom.

If you have any questions or concerns, please free to discuss them with me or other members of the Cultural Competency Committee.”

I also sent an email to the board since they also meet here. All totaled, over 70 people received the email.

And one week later, only one concern has been voiced. That concern is that women will not be safe. Luckily I had read an excellent resource titled “Peeing in Peace.” It addressed that very concern by pointing out that woman are not safe now. Just because there is a sign that says “Women,” there is nothing to keep someone out if they want to do harm. They can hide in an adjoining stall or barge right in. I will point out that this has never happened. Regardless, if this staff member is worried, there are options. They can opt to use the other gender-welcoming and inclusive bathroom (formerly called the “men’s” bathroom) which is a single use bathroom with a locking exterior door.

I am reminded of the quote from Dr. Martin Luther King: “Injustice anywhere affects justice everywhere.”

Thank you, Kylar, for opening my eyes to an injustice I was not aware of. My hope is that one day in the not so distant future, labeling bathrooms for men and women will go the way of the dinosaur… into extinction.

Privacy strip 1*There is a vinyl product meant for stripping the edge of windows. It has an adhesive strip and is a very inexpensive way to provide privacy to existing stalls. It has always bothered me that you can look right in a bathroom stall through the space between the door and stall. Now that issue is resolved and it took a mere few minutes with a product we happened to already have in the building.

Posted in Beauty and Self Image, Empowering Women, YWCA National Conference | Tagged , , , , , , , , | Leave a comment

YWCA of Queens Attends UN Women Global Launch of Beijing+20

By Jane Lee
Communications & Outreach Associate, YWCA of Queens

From left: YWCA Queens HSE Students Umme Sheuli, Moises Churio, Adrian Lezcano, Director of Center for Education & Career Services Stacy Mckelvey, Communications & Outreach Associate Jane Lee, and HSE Student Erick Menendez at the Apollo Theatre in New York

From left: YWCA Queens HSE Students Umme Sheuli, Moises Churio, Adrian Lezcano, Director of Center for Education & Career Services Stacy Mckelvey, Communications & Outreach Associate Jane Lee, and HSE Student Erick Menendez at the Apollo Theatre in New York

The United Nations Entity for Gender Equality and the Empowerment of Women launched its year-long Beijing+20 Empowering Women, Empowering Humanity: Picture it! campaign on Thursday, June 26, 2014. The campaign is a year-long movement with the mission of cultivating global dialogue and actions on women’s rights and gender equality. Several staff and students from the YWCA of Queens attended the Beijing+20 launch event at the Apollo Theatre in New York City. Our High School Equivalency (HSE/GED) students were eager to listen to the amazing line-up of speakers and performers, ranging from the UN Women Executive Director Phumzile Mlambo-Ngcuka to noted feminist leader and activist Gloria Steinem.

The Beijing+20 campaign celebrates the 20th anniversary of the 1995 Fourth World Conference on Women in Beijing, China. Nearly 20 years ago, the UN adopted the Platform for Action, which outlined and defined a policy framework and plan to achieve gender equality and women’s rights.

By 2015, UN Member States aim to “renew political commitment to accelerate implementation of the comprehensive affirmation of women’s rights and empowerment adopted in 1995 by 189 governments, which remains only partially fulfilled.” With the modern issues that are being debated around the world on and offline, a new framework can be developed based on the real and transformative changes women need today.

It was truly inspiring to listen to such a range of successful women of all ages from all over the world, all advocating for gender equality and human rights, at the Beijing+20 launch. “Our goal is to rekindle the spirit of Beijing to re-energize all of us in our work to advance women’s rights, women’s empowerment and gender equality,” said Mlambo-Ngcuka. “The vision laid out in Beijing, with 12 critical areas of concern for women, still resonates deeply around the world. It is still unfinished business.”

Among the topics discussed were education for girls and women worldwide, the issues of rape and domestic violence, employment and wage gap between genders, women empowerment, and the importance of the role of men in our society to eliminate gender inequality. These subjects were discussed in insightful speeches, musical performances, as well as spoken poetry.

Tiffany Rodriguez, our HSE student who spoke at the United Nations Economic and Social Council (ECOSOC) Youth Forum, said “I was pretty amazed by how everything turned out. It was full of energy and definitely worth coming back to again. I enjoyed everything, especially the poetry; it stood out to me the most.”

Another student, Erick Menendez, stated, “The event was a good learning experience for me. I think it’s great that there [are] so many people supporting these [women empowerment and gender equality] movements. My favorite part would be the performances, all of them were wonderful.”

As an organization that serves underprivileged women from diverse backgrounds, the inspiring messages from this event gave us extra motivation to keep advocating for the rights of women and elevating our educational and social services that we provide to our community.

Jane Lee is a Communications & Outreach Associate at the Queens branch of the YWCA in New York. She graduated from Ithaca College in 2012 and spent a year teaching English and traveling in Southeast Asia before moving to New York to pursue her career in nonprofit.

Posted in Advocacy and Policy, Domestic Violence, Economic Empowerment, Empowering Women, Hate Crimes, Leadership, Sexual Assault, Violence Against Women, Women's Health, Young Women | Tagged , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

An Opportunity to Make a Difference

by Danielle Desrosiers
Direct Care Supervisor, Survivor Outreach and Advocacy Services, YWCA Western Massachusetts

Danielle Desrosiers

An open letter to the YWCA community and beyond:

I am writing to you as a member of our community and as someone who has had the privilege of working with survivors of sexual assault for the past five years. In those five years, I have experienced heartbreak, unbelievable pain and trauma beyond words, but most importantly I have experienced an unwavering strength that tethers it all together.

I have been a medical advocate for going on three years – a job I love; a job that has pulled me out of bed at 2 a.m.; that has pulled me from watching my favorite TV show or from spending time with my family, my partner, my friends; a job that has, time and time again, defined for me the true meaning of being a survivor.

Medical advocacy is only a part of the larger scope of being a rape crisis counselor. This particular component means that I am part of a 24-hour on-call rotation, 365 days a year. At the YWCA, we respond to five area hospitals whenever someone has identified as a sexual assault survivor. At the hospital, we are a sounding board, a support system, an information giver and above all: an advocate. We advocate for the survivor, in whatever way makes sense to them in their situation. We are there from start to finish, to hold hands, to explain processes, to sit in silence, to wait outside the room, and to just be there to listen. We are there.

We work with wonderful people: an equally-devoted SANE (Sexual Assault Nurse Examiner) nurse team, emergency room nurses and doctors. We all work together to create a space for healing, for sadness and anger, for options.

I stumbled into working in this field my senior year of college, starting as an intern to complete a practicum for school. Five years later, I am still working in this field. Being a medical advocate changes the way you see the world, it changes the way you think about strength and, ultimately, it changes who you are. I invite you to take part in this change.

The YWCA Western Massachusetts is looking to add to its sexual assault medical advocate team. If you are someone looking for human service experience, for a volunteer opportunity, or for a way to give back, please contact: Danielle Desrosiers, Direct Care Supervisor, Survivor Outreach and Advocacy Services at 413.732.3121 x160 or DDesrosiers@ywworks.org.

Danielle Desrosiers has been with the YWCA of Western Massachusetts for three years and has been working with survivors of sexual assault and domestic violence for five years. She is currently the supervisor of the Sexual Assault and Community Based Domestic Violence programs. Danielle has a passion for working with and advocating for survivors and has been an advocate for women’s rights for 28 years.

Cross-posted with permission from YWCA Western Massachusetts’ Facebook page.

Posted in Advocacy and Policy, Domestic Violence, Empowering Women, Sexual Assault, Violence Against Women, Women's Health, Young Women | Tagged , , , , , , , , , , , , | 1 Comment

White House Summit Highlights Issues Facing Working Families

By Danielle Marse-Kapr
Senior Advocacy and Policy Associate, Economic Empowerment, YWCA USA

Danielle

Danielle Marse-Kapr

Earlier this week, 10 representatives from the YWCA joined over 1,000 attendees at the White House Summit on Working Families. As anticipated, the summit highlighted issues facing working parents – particularly mothers who do paid work. There was no shortage of clout in the room as President Obama, First Lady Michelle Obama, Vice President Biden, and Second Lady Dr. Jill Biden all delivered remarks. They were joined by House Leader Nancy Pelosi, Department of Labor Secretary Tom Perez, and White House Senior Advisor Valerie Jarrett and the First Lady’s Chief Of Staff Tina Tchen, both of The White House Council on Women and Girls. Prominent business leaders and celebrities also attended to show their support for an agenda of public policy and cultural change that helps working families.

Speakers highlighted legislation supporting workers and furthering the progress made on women’s equality in the workplace. While these issues are often touted by women and women’s advocates, the summit correctly highlighted the fact that paid sick days, wage transparency, paid family and medical leave, fair scheduling practices for shift workers, ending pregnancy discrimination, and raising the minimum wage positively impact ALL workers, not just women.

Employers like Makini Howell of Plum Bistro and Andy Shallal of Busboys and Poets spoke to the importance of not only providing paid sick days and fair wages to food service workers but also creating a culture where workers can utilize those benefits. They encouraged employers to trust workers and confirmed that no one from their staff had abused the progressive policies.

The push for progress in the workplace was inspiring: impactful bills are on the table, employers are beginning to reflect the perspectives of Gen Y workers who value both work and family life and desire flexibility, and leaders have begun to recognize that policies that are bad for women are bad for all of us.

However, our vigilance is still incredibly important. Even as we have these valuable discussions, the Supreme Court is ruling against women workers, an uncompromising Congress bars those important bills from becoming law, and income inequality along gender, racial, and class lines is still growing in the United States.

We must hold business leaders and legislators accountable. We must vote according to our values and challenge the manner in which campaigns are financed. We must continue to shine the light on CEOs who pay abysmal wages and use predatory employment practices. Workplace fairness for all workers cannot wait. Every day that we do not make these changes, income disparities increase, women and their families slip further into poverty, and the nation fails to thrive.

Danielle Marse-Kapr has been a part of the YWCA movement for five years. Prior to beginning her work as the Senior Advocacy and Policy Associate for Economic Empowerment at YWCA USA, Danielle worked at YWCA Orange County, N.Y. as the Manager of Gender Equity Programs.

Posted in Advocacy and Policy, Economic Empowerment, Empowering Women, Racial Justice, Voting | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

When Women Succeed

By Matt King
Director of Employment & Regional Services, YWCA Seattle | King | Snohomish

“When women succeed, America succeeds.” It’s not just common sense; it was also the theme of the White House Summit on Working Families on June 23.

President of the Center for American Progress Neera Tanden spoke at the White House Summit on Working Families. Photo via US Department of Labor on Flickr.

Too many working women and families live in poverty, and too often, working parents must choose between the demands of the workplace and the needs of their children. From the President and First Lady to Vice President Joe Biden, Dr. Jill Biden, Valerie Jarrett, Nancy Pelosi, and Gloria Steinem, the policy recommendations were consistent:  affordable, high-quality child care; paid sick leave and family leave; a higher minimum wage; and flexible workplaces.

Business leaders discussed their efforts to create more family-friendly workplaces. Many business leaders, including CEOs of national corporations like BET’s Debra Lee and small business owners like Makini Howell of Seattle’s Plum Bistro, recognize that workplace policies that are good for women and families are also good for the bottom line.

But other employers resist efforts to increase workplace flexibility and improve pay and benefits. And as the President pointed out, the Administration’s proposed minimum wage hike and other legislative proposals have stalled in Congress. So what can we do to move these policies forward?

Think nationally, act locally. The President praised and encouraged local action as a way to create pressure on Congress to act at the national level.  Here in Seattle, our community recently enacted a paid sick leave requirement and a higher minimum wage.  And similar efforts have resulted in better policies for working women and families in a number of cities and states.  The next step in Washington is to work with our state legislature to enact paid sick leave and the higher minimum wage statewide.

Cultivate a values shift. Maureen Conway of the Aspen Institute noted at the Summit that we accept as a given that many jobs offer crummy pay, unpredictable hours, and no benefits. That’s because we think of jobs in food service, hospitality, home health care, child care and retail sales as “stepping stones” rather than “real jobs.” But in reality, more adults than ever are supporting themselves and their families in these jobs, and these are the occupations with the greatest predicted employment growth. And, of course, the workforce in these sectors is disproportionately made up of women, particularly women of color.

It’s laudable to provide girls and women with the support they need to secure careers in higher paying sectors like science, technology, engineering and math. But many of the women we serve at the YWCA Seattle | King | Snohomish are unlikely to enter those sectors for a number of reasons. Education and job training are only part of the solution.

We don’t have to accept that those who work as sales clerks, health care aides, child care providers and housekeepers will continue to work for near-poverty-level wages. The low pay and undesirable working conditions in these occupations reflect our values. The YWCA can be a leader in the effort to shift those values and improve the lives of the women who work in those jobs.

 

Posted in Advocacy and Policy, Economic Empowerment, Empowering Women | Tagged , , , , , , , , , , , , , , | 1 Comment

Potential to Power Girls Symposium Kicks Off NYC’s Girl Agenda

by Heather Nannery
Communications Manager, YWCA New York City

Who is the 21st Century Girl? How can we support her aspirations? What happens when 200 girls and women unite to find out?

The YWCA of the City of New York (YW) took on these questions and more on June 2 at the First Annual Potential to Power Girls Symposium. The YW convened over 200 girls and 50 influential women to engage in important discussions about racial and gender equity in New York City.

The event kicked off with girls and women walking into the room to the sound of musical empowerment by DJ Abby, 17, on the turntables and then a special step performance by the youth from The Door.

The day featured a blend of fun and enlightening discussion between the girls and women. Young women were able to let their voices be heard as the event featured a Youth Keynote by Mehar Gujral followed by two panel discussions. CEO Dr. Danielle Moss Lee facilitated the panel discussions, which featured two high school girls and two college aged young women who expressed the challenges that arise for teenage girls and young women.

After the youth speakers, the floor was opened for discussion at each individual table between the girls and the influential women. Influential women guests included author of Orange is the New Black Piper Kerman, MSNBC Host Melissa Harris-Perry, and Political Analyst Zerlina Maxwell and model and activist Christy Turlington-Burns. To see the full list of influential female guests, click here.

After the discussions, 2014 NYC Youth Poet Laureate Ramya Ramana silenced the crowd with an original poem written for the symposium (read it here) and a special reading of Maya Angelou’s “Phenomenal Woman” to commemorate Angelou’s passing.

Following Ramana, the YW’s Board Chair announced that the Mayor’s Office had issued a Proclamation stating the Mayor’s commitment to women and girls and declaring June 2, 2014 “YWCA’s Potential to Power Symposium Day.”

The energy in the room was electric and erupted into celebration as #yw21cg trended on Twitter. Women and girls alike were posting their thoughts and reactions to the event! Here are some examples below:

After an inspirational morning, the girls broke out into groups facilitated by Global Kids where they began to lay the foundation of policy recommendations for the New York City Girls Agenda before they returned to the main space for a moment of reflection.

Girls queued up to the microphone and shared their thoughts and impressions of the event discussions. It was a powerful moment of sharing and excitement for a new movement of feminism.

Dr. Danielle Moss Lee said, “We made it clear to girls in New York City, you are valid now, you matter now, and you have power now – in essence, you are power… not potential.”

The First Annual Potential to Power Symposium was the start of a movement – join us in changing New York City for women and girls.

We got now, New York City.

Posted in Advocacy and Policy, Economic Empowerment, Empowering Women, Leadership, Racial Justice, Young Women | Tagged , , , , , , , , , , , , , , , | Leave a comment

Men have the power to end violence against women

By Patricia Glaser Shea
President and CEO, YWCA Nashville & Middle Tennessee 

shea0621

Patricia Glaser Shea

Nearly nine months ago, domestic violence victim advocates stood proudly in front of the Metro Courthouse as our city’s leaders presented recommendations for system-wide improvements to Nashville’s response to domestic violence. The recommendations came after Mayor Karl Dean commissioned and completed a domestic violence safety and accountability assessment and shed a bright light on the gaps in our community’s legal, judicial and law enforcement practices.

One shocking fact that was exposed by the mayor’s assessment: More than 40 percent of alleged offenders are released by night court commissioners before their statutory 12-hour hold ends. That means that 40 percent of the time, victims of domestic violence are not given the time needed to get themselves and their families safe. They are not provided time to get health care needs met. They are not provided time to gather their belongings, find a hotel or a shelter, like the YWCA’s Weaver Domestic Violence Center — anyplace where the batterer cannot find them and re-offend.

We were so hopeful, with recommendations being made that beautiful Nashville day, that they would become the starting point for permanent change. In fact, District Attorney Torry Johnson and Metro Police Chief Steve Anderson announced ways that their departments had already begun implementing the recommendations. Unfortunately, not everyone was listening.

When the story broke regarding the release of a prominent local contractor and the alleged second near-fatal beating of his girlfriend, we knew some things had not changed at all. We still had “good ol’ boys” doing what “good ol’ boys” do: supporting a culture that contributes to violence against women and girls.

This week, we heard loud and clear from Chief Anderson that he is not a good ol’ anything. Instead, our chief did his job, as a leader in our community and someone whose job it is protect all of us. He spoke out for what is right. In his seven-page statement, Anderson called out the behaviors of men who continue to contribute to the staggering amount of violence perpetrated against women in our community.

Tennessee ranks sixth in the nation for the rate at which men kill women, and more than half of all crimes against people in our community are domestic violence. While men are committing a majority of the violence, they also hold the majority of positions of power. That is why we need men, like Chief Anderson, to speak up with outrage and the authority to end it.

Chief Anderson is part of our city’s solution to end domestic violence. He understands it. He is willing to publicly admonish those who should and don’t. He is refusing to collude with social norms that value the freedom of an alleged abuser more than the life of an alleged victim. He is choosing to speak up — as he knows all too well that silence is affirming. He has taken the responsibility that we wish all men would take — holding other men accountable for their behaviors and pointing out their role in the perpetuation of violence against the women who live in our community.

Thank you, Chief Anderson.

Cross-posted with permission from The Tennesseean

Posted in Advocacy and Policy, Children's Health and Safety, Domestic Violence, Empowering Women, Violence Against Women, Women's Health | Tagged , , , , , , , , | Leave a comment

A Clear Message at YWCA USA Annual Conference: More Women Need to Run for Political Office

by Amberlie Phillips
Chief Development Officer, YWCA Utah

The YWCA USA conference a few weeks ago was full of inspiring speakers, great networking, and wonderful educational opportunities. I learned so much during each portion of the conference – from watching my CEO and a YWCA USA Board Member gracefully navigate an advocacy day meeting with an unsympathetic legislator, to getting insights into how different generations approach their philanthropy. It was three days of reinvigorating immersion into the power of persimmon!

For me, a repeated theme of the conference was one that holds personal meaning at our YWCA in Utah: in order to make change in our government, we need to have more women at the table, in the halls of Congress, and in the White House. Leader Pelosi made this point during her Capitol Hill Day address to attendees, and Neera Tanden of the Center for American Progress echoed this sentiment during her luncheon keynote on Friday.

This message is particularly poignant for Utah women: in Utah, not a single woman holds a seat in Congress or statewide elected office. Since Utah became a state in 1896, we have elected just three women to Congress (Martha Hughes Cannon in 1896, Karen Shepherd in 1993, and Enid Green in 1995). In this year’s state legislature, women made up just 16.3% of legislators, while nationally the ratio was 24.2%.

At the YWCA Utah, we are working to bring these national and state numbers up, and also to get more women elected at all levels – county, municipal, you name it! We are the founding partners of a local initiative that is designed to encourage more women to run for office at all levels: Real Women Run. Real Women Run is a bipartisan, collaborative endeavor that will begin its fourth year this fall. Our partners include local universities and colleges, current and former female elected officials from both parties, and other nonprofit and community groups who share our belief that more women in the halls of power will result in better government.

Real Women Run provides training and networking opportunities for women interested in running for office, working on a political campaign, or serving on a public board or commission. Our most recent general training attracted close to 100 women, and this was in an “off” year, with only municipal elections planned!

Initiatives like Real Women Run and continued conversations about the importance of diversity of all kinds among our elected officials are just two ways that this issue is being addressed.

I was grateful to hear a call to action from speakers at the YWCA USA annual conference, and hope to see more women on the ballot with each coming year. Women are 50% of the population, and I believe that equal representation will better serve all citizens of this country. What efforts is your community or local YW making to encourage more women to run?

Amberlie Phillips became a member of the YWCA Utah’s management team in 2012. She reports directly to Anne Burkholder, YWCA CEO and oversees all fundraising, grant writing, marketing, communications and volunteer efforts for the organization. Phillips earned a Bachelor of English and a Master of Public Administration from the University of Utah. She has over 12 years of experience in fundraising and marketing and has worked raising major gifts at San Diego State University, as Development Director of the Utah Food Bank and also in development at Ballet West. While at the Utah Food Bank, her team’s work was honored with USFR’s 2006 Development Communication Campaign of the Year Award. Early in her career, Phillips was selected as a member of the inaugural YWCA Young Women’s Leadership Board.

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Recap: YWCA NCA Capitol Hill Day

By Tamika L. Gittens
Contributing Blogger, YWCA NCA

Did you know that 85% of domestic violence victims are women? (Bureau of Justice Statistics Crime Data Brief, Intimate Partner Violence, 1993-2001, February 2003)

The YWCA National Capital Area recently participated with several other YWCA associations across the nation for Advocacy Day on Capitol Hill to talk about domestic violence, an issue plaguing local and national communities. In an effort to demonstrate the damaging and permanent effects that domestic violence has on women and children, we engaged Rep. Eleanor Holmes Norton (D-DC), Rep. Donna Edwards (D-Md.), and Rep. Chris Van Hollen (D-Md.) in discussions on gun violence and its impact on domestic violence. We shared statistics to help them reexamine current laws pertaining to ownership of firearms, and the need for more policies and programs to safeguard and support victims.

Advocacy Day was a prime opportunity to share our work towards our mission, but to address a longstanding issue that is critical to the safety and quality of your lives. Since the event, Congresswoman Norton has cosponsored H. R. 3566, a proposed legislation that aims to strengthen state and federal laws surrounding ownership of firearms, and prevent domestic violence homicides.

We are one step in the right direction, and looking forward to next year.

Thank you YWCA USA for organizing a great day on Capitol Hill and Annual Conference!

Cross-posted with permission from YWCA NCA Advocacy. Follow YWCA NCA on Twitter. 

Posted in Advocacy and Policy, Children's Health and Safety, Domestic Violence, Empowering Women, Violence Against Women, Women's Health, Young Women, YWCA National Conference | Tagged , , , , , , , , | Leave a comment

To Be Cured of HIV

For about a year, there has been much discussion about the possibility of a cure for HIV. Visit POZ’s website to learn more about the many different aspects to this conversation.

For BABES Network-YWCA’s summer newsletter, we asked the question: What would it be like to be cured of HIV?

Some people in our community have been living with HIV for 6 months and some have been HIV+ for 30 years. Each person’s life has been impacted by their HIV diagnosis in different ways and have done their best to live healthy and engaged lives. Being cured of HIV is not something BABES Network has often thought about – but now that we could possibly have a cure in 10 years, we think it’s important to consider what that would mean for us as individuals and for our communities.

Different people in the BABES community wrote in and shared their thoughts on this question. Here are two of their stories.

I was asked recently what my life would be like without HIV, if we had a cure. I was shocked to realize (and am probably the only person in the world with HIV) that I had never even thought about that possibility in spite of being well informed on the medical advances in that field.

When I stopped to think about it, the first thing that crossed my mind was I would no longer have to watch those I care about and love die from issue’s related to HIV/AIDS. That would be a day to celebrate. It would also be a sad day as most of the world would not be able to afford it, even if it were as cheap as an aspirin tablet. Much as it is today with our treatment options. But, nonetheless it would be a great day for humanity.

On the personal side, it would make no difference to me at all. I would not rush out to get cured, even if I could have it paid for by someone else, again much like today. But the possibility of a cure raises questions I had never even considered, questions of self-worth and the value of my life to the community if I no longer had some of the conditions that have made me somewhat unique, my Hemophilia (bleeding disorder), AIDS and Hepatitis C infection. These are difficult dilemmas I’m sure I will be wrestling with for many years to come.

~Gavin

Ever since Timothy Ray Brown (the Berlin patient, 2007) was cured of HIV there have been quiet conversations among family and friends about the possibility of a cure. But that’s all it was, just talk. Today, because of Mr. Brown’s treatment we know so much more, and a cure is becoming nearly a reality. So what would a “CURE” mean to you?

In my life, for me, that idea creates more questions than answers. Would everyone still living get the cure? Would we be required to get the cure? Would AIDS service organizations just close up shop or would they be phased out over time? Would there still be case management and/or clinics like Madison? Would those of us who have AIDS and are disabled be required to return to work after the cure? Would HIV/AIDS funding be cut from the national budgets? Would prevention still be a priority? Would there be support groups for people who are cured and trying to find balance in their new reality? And most importantly, how would I spend all that time that is being taken up with doctor’s appointments and self-advocacy?

I was diagnosed on July 1st of 1985 just seven days after my 21st birthday. My whole adult life has included living with HIV. Quite frankly, I did not expect to live this long and, I’m not sure that I know any other way to live. Please don’t get me wrong, I want a cure to be available. No one should have to live with our reality. But I’m also afraid of the unknown. I’m pretty adept at advocating for myself and use a minimum of services but if I run into trouble I have that safety-net of case management. I just survived breast cancer, am turning fifty and I’m entering yet another phase of my life. If the cure was available to everybody in ten years when I’m turning sixty would I go for it? I honestly don’t know but I hope so.

But here is something I do know! Along with continued self-care, medical care and self-advocating, we as HIV + people need to start having earnest conversations on policy regarding the “CURE”. As always, we need to be proactive. We need to look at the science and both the pro’s (and there will be many) and the con’s and create smart policy. Otherwise we may be just as overwhelmed as the day when we were first diagnosed.

~Eldonna

Visit the BABES Network-YWCA website to learn more about our program and to get in touch with a BABES Peer Advocate, email us or give us a call at 206.720.5566 or toll-free at 888.292.1912. Email us to start receiving newsletters and/or e-newsletters.

Cross-posted with permission from YWCA Health Access. Follow BABES Network YWCA on Twitter.

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