Persistence in the Age of Resistance

Today, May 18, is Infertility Advocacy Day. This year, RESOLVE: The National Infertility Association, is teaming up with the American Society for Reproductive Medicine. Nearly 250 constituents have gathered from around the country to fight for improvements for those living with infertility. Long-time advocate, Risa Levine, is among them and shares this message with us as today’s guest blogger.

To my fellow advocates,

We are at a strange place in our history for women of our generation.  After the dormancy of the post Viet Nam war era, we are finally seeing a reawakening of political consciousness, a resurgence of social activism in an era when most public engagement has been reserved for Super Bowl ticker tape parades. We are seeing people take to the streets outside government offices, we are seeing hundreds of thousands of women marching all over the country. And we are seeing crumbs of response. Bill O’Reilly is history. That’s something.

Most of us don’t remember the sixties, a time of anti war protests, suspicion of government, overthrowing of a well established social order. A time when “burn your bra” was not just a symbol or catchphrase, but a revolutionary, engaged act of actual resistance to social norms that far eclipsed the message attempted to be sent by wearing knitted pink pussy caps.

But for the most part, the resistance agenda has been reactionary, one of anger, fiery Roman candles in the night. An affirmative legislative agenda has not quite yet been identified and the methodology has been murky. This era of #resistance was triggered by one man, and the mistreatment of one woman. But there are myriad inequities that have been brewing for a long time. Occupy Wall Street reflected those divisions but failed to achieve meaningful change beyond sloganeering. Similarly, the signs at all of the recent marches range from reproductive rights to immigration to LGBT rights to guns – while all require respect for people, the only proposed solution, dump trump, doesn’t address the underlying problems.   “Resistance” alone, is not solutions-based.

Risa wth Gloria Steinem, her first role model, getting out the vote in PA

Anger – when properly directed – is good. Anger can be motivating. Anger can spur people to turn off the TV and take to the streets. But that “fight or flight” adrenaline response to anger without proper outlets, a cogent agenda and a clear end goal, can become unhealthy. And unrequited. The problem with resistance, like the mantra of the 60s, “never trust anyone over the age of 30,” is that it will, by definition, fail, as the aging process is scientific fact.

While our efforts to address the fundamental unfairness that is experienced by infertility patients should be – and because of some of our advocates’ efforts sometimes is – an issue for #resistance, it is more an exercise in Persistence. A diagnosis of infertility IS a pre-existing condition that could bar one from obtaining health insurance if the House legislation were to pass the Senate, but even the most liberal outlets neglect to include infertility on their comprehensive list of diseases that would bar infertility patients from coverage: we have much work to do to educate even our natural allies. Let’s not forget that.

However, when we hit Capitol Hill, we aren’t coming only from a place of adrenaline-producing anger. Anger at the unfairness, sure. But we aren’t acting merely in opposition to the current zeitgeist. We aren’t seeking confrontation. And we aren’t simply fighting a misogynist agenda. We are promoting education, family values, long term protection and science.  We are seeking to right a wrong practiced by both parties for decades. We are in it for the long game.  We are fighting for families. For traditional values reinforced by modern scientific advances. Love and Science, hand in hand. We must be above partisanship. We are above the divisions in this country. We personify Persistence.

Risa with Hillary Clinton in New York City: Discussing Matters of State.

Whatever your personal feelings about where we are at this very, very historical juncture, on May 18, stay focused on the positive. We are advocating FOR something. For more rights for ourselves and for our families. For future families.  For our military. For the safety and integrity of our bodies. We come in peace – we simply need to know that our health concerns are being addressed. We do and we will exercise our voting rights if we aren’t heard, but we come as constituents with problems that Congress can address. Ask them for their support. But don’t leave without their understanding.

 

 

Gearing Up for Advocacy Day – Andrena’s Story

Thanks so much to all of you who applied for our The ART of Infertility Advocacy Day grant! We wish we had the funds to help everyone who applied. The staff at RESOLVE: The National Infertility Association, was kind to choose the recipient and chose Andrena King who will be representing the state of South Carolina! In today’s post, we hear a bit about Andrena’s infertility journey and what she’s been doing to advocate for change. Thanks, Andrena, for sharing your story!
-Elizabeth

My husband Chris and I were married October 2013 and we decided to try to conceive two years ago. After actively trying for a year we started the process of getting basic tests done to make sure everything was working fine. One of the initial tests showed that I had a blocked fallopian tube so I was immediately referred to a fertility doctor by my gynecologist. Everything was happening so fast that initially I felt numb. I held my tears in until I went back to work and had a major breakdown in my supervisor’s office. I was heartbroken and afraid. 

We had a terrible experience at our first consultation. It was like we were on an assembly line. We were rushed in and tossed to people we were meeting for the first time who seemed more concerned about signing us up for the next group of couples getting IVF. My husband and I were devastated and no one cared. So, we took matters into our own hands and started doing research. We started our search for other fertility specialists in the area and reached out to friends who had overcome infertility for guidance. I found the RESOLVE: The National Infertility Association website and was blown away by resources available there.

While reviewing our health plans, we realized that our benefits included the opportunity to receive a virtual second opinion online. We had our tests and charts reviewed by a fertility specialist. While he couldn’t confirm that my fallopian tube was actually blocked, he did rule out male factor infertility. We found another fertility doctor that was a great fit for us. Our new doctor was recommended by mutual friends. As we talked during our first appointment, we knew we were in the right hands by his compassion and his ability to explain options. He advised that the next step was to have a laparoscopy done to see what was actually going on.

During the surgery, it was discovered that one of my fallopian tubes was severely damaged and had to be removed. The damage was due to a previous surgery I had to have a cyst removed while I was in college. My left fallopian tube was blocked by a cyst so that was also removed.  We felt optimistic after gaining answers from the laparoscopy and decided to move forward by taking fertility medication and trying on our own for two months. The third month, we had our first IUI which wasn’t successful. Month four brought another unsuccessful IUI.

Based on what the doctors said, it was the perfect opportunity for us to conceive because everything was in place. We were very disappointed and decided that mentally, emotionally and physically we needed a break. We are currently taking a break from treatments and have become very involved in raising infertility awareness in our community.

While busy with treatments and doctor appointments, I recognize the limited access to resources and support in my city related to infertility. After seeing the guidelines needed to start a support group, my cousin and I decided to start a RESOLVE Peer Led Support Group in Columbia, SC. Our first meeting was held in August of 2016. The group is one of two in the entire state of South Carolina. When our journey started, Chris and I quickly realized that our insurance plans would not pay for any of our doctor bills or treatments. This set back and financial burden prompted us to advocate to change this injustice, not only for ourselves but for others in our state. After months of meeting with legislators, the S.10 Legislation was pre-filed in December of 2016. The bill requests that insurance companies cover the diagnosis and treatment of infertility procedures. The legislation has some exclusions but this is a big step in the right direction. The legislation is currently in subcommittee waiting to be discussed by the Senate and House. We have great support from our family, friends, co-workers and non-profit organization WREN (Women’s Rights Empowerment Network) advocating with us to get this legislation passed.

I applied for the Advocacy Day grant to bring awareness to the lack of insurance coverage, legislation and support in my state for families trying to conceive. This has to change. I’m looking forward to learning how to properly interact with legislators to advocate for others on their journey to parenthood as well as collaborating with others who as passionate as I am about making a difference in our states. I hope to gain new friendships, guidance and be empowered to continue to advocate for others.

Chris and I remain positive that we will one day become parents as we rely heavily on our faith in God, prayers and support from loved ones.

Apply for Grant to Join ART of Infertility at Advocacy Day

In May, we’re heading to Advocacy Day for our fourth year. We know that there are many in the infertility community who would also like to attend, but find it difficult when they are already paying out of pocket to try to build their families.

So, this year, we’re offering a grant to allow a first-time attendee from an under-represented state to make the trip to attend this event, hosted by RESOLVE: The National Infertility Association.

You can get all the details below. We hope that those of you eligible will apply, and that everyone will share the word with their online and in real life support groups, their clinics, families, and friends.

Details:

  • The grant will cover airfare and ground transportation, lodging, and a stipend for meals.
  • All eligible entries will be considered and staff from RESOLVE: The National Infertility Association will choose the awardee.
  • All information must be submitted by Tuesday, April 4th at 11:59pm EST and the grant recipient will be notified on, or before, April 12th.

Eligibility Requirements:

  • To be eligible, you must live in one of the following locations: Alabama, Arkansas, Georgia, Idaho, Indiana, Iowa, Kansas, Louisiana, Maine,  Mississippi, Montana, Nebraska, Nevada, New Hampshire, New Mexico, North Carolina, North Dakota, Oklahoma, Oregon, Rhode Island, South Carolina, South Dakota, Vermont, West Virginia, Wisconsin, Wyoming.
  • You must also be able to travel to Washington, D.C. on May 16th, 2017 and stay through the evening of May 18th, 2017.
  • Eligibility requires participation in all Advocacy Day activities, including physical assistance with a pop-up exhibit featuring Advocacy Day stories and artwork that will be curated by The ART of Infertility and on display during the welcome reception on Wednesday May 17th.

To Enter:

Please fill out the following form: http://bit.ly/ADGrant_2017

About The ART of Infertility:

In March 2014, the first exhibit “The ART of IF: Navigating the Journey of Infertility” debuted at the Ella Sharp Museum in Jackson, MI. Elizabeth Walker curated this exhibit which emerged from her own experiences with infertility. In an effort to make sense of her infertility diagnosis and surround herself with people who understood the difficulties of navigating infertility, she joined an infertility support group and realized the importance of sharing her journey with infertility. She also began creating artwork representing infertility and with others in her infertility support group collected artwork and stories for the Ella Sharp exhibit. Shortly after its exhibition, Maria Novotny met Elizabeth at Advocacy Day, an annual event hosted by RESOLVE: The National Infertility Association, which lobbies Congress on access to care and other issues important to the infertility community. Both being from the state of Michigan, Elizabeth and Maria spent the day lobbying MI congressional representatives.

Spending time together, we shared how infertility was shaping not just our personal lives but professional ones as well. Maria explained that she was studying “rhetorics of infertility” as part of her PhD at Michigan State University. Elizabeth described how she was trying to bring the exhibit to other cities and collect more stories and artwork from around the country. We both shared a desire to become more involved in the infertility community and less concerned with becoming pregnant ourselves. We shared how we were finding our own healing in creative outlets and connecting with other infertile women and men. After the advocacy event, Maria sent Elizabeth some short non-fiction vignettes detailing the everyday struggles of being young, recently married and diagnosed with infertility. In turn, Elizabeth shared mixed media art pieces representing the pain, frustration and isolation of experiencing failed fertility treatments. Through this sharing, we both noted how central creativity was to our healing and, so, we decided to collaborate. Through this collaboration, we developed “The ART of Infertility” the national art, oral history and portraiture traveling exhibit.

Why Advocacy Day:

Advocacy Day holds a special place for The ART of Infertility. It is where Elizabeth and Maria first met and where the project really began to grow. Advocacy Day serves as a reminder of why we travel the world curating exhibits and raising infertility awareness. As two infertile women, however, we understand that affording Advocacy Day can be a challenge. This grant is aimed to provide support for an infertile person who would like to attend but could otherwise not afford to come. It is our hope to inspire another infertile person by granting them the opportunity to join hundreds of passionate women and men fighting for infertility justice.

Click here to learn more about Advocacy Day.

Questions can be directed to: info@artofinfertilty.org

 

Artwork Wednesday: An Apple and its Seeds

Back in 2014 at Advocacy Day in Washington D.C. Maria and Elizabeth developed art packs. These packs were designed to provide an outlet of freedom of expression and healing to those affected by infertility.

Did you receive one of our art packs in D.C. and have an artistic story that you want to share that you haven’t shared with us already? We would love to feature your piece in one of our future #ArtworkWednesday posts.

If you’re unable to complete your project, that’s okay. We understand that creating artwork can be intimidating. However, it’s more about the process of setting aside the time and giving yourself some space for a creative outlet than the results.

Recently Elizabeth Sobkiw-Williams created a piece from one of those art packs. Read her personal story and view her moving artwork below:

Elizabeth Walker's untitled piece from one of the Advocacy Day art packs.

Elizabeth Sobkiw-Williams’ untitled piece from one of the Advocacy Day art packs.

Untitled

Elizabeth Sobkiw-Williams

mixed media – yarn, watercolor

I once had a child ask me why an apple had seeds, and I told her that they could be planted and new apples would grow. In that moment I felt like something in nature had gone wrong with me. I was like an apple with no seeds, an anomaly, an end of the line. There would never be a piece of me that would be a part of the world.

I always look for the unique in nature, something to remind me that I am not alone in my struggle. And beauty can be found in these imperfections.

News Round Up: All About Veterans

senate

CSPAN announcing HR 2577 passed.

This week’s News Round Up is all about veterans because a historic vote just took place and passed! The Mil-Con Bill, now named HR 2577, passed yesterday in the full United States Senate by a vote of 89 to 8, with Senators Corker, Crapo, Flake, Lankford, Lee, Paul, Risch, and Sessions voting against it and Senators Boxer, Cruz, and Sanders not voting. Confirmed: it *included* the Amendment providing funding for IVF for Veterans. It will now move forward to a conference committee to reconcile the bill and then go back to both the House and Senate for a vote.

Kuddos to all of you who called Congress this past week encouraging your local Senators to support this bill. Citizen advocacy does work!

Today, we localize the importance of this bill by sharing a recent news story of Michelle Wager, a MI veteran who has been facing her own infertility journey.

michelle wager

Michelle Wager, a MI veteran facing infertility.

“A roadside bomb blew off one of Wager’s legs, badly damaged the other and broke her back. Doctors say she coded three times. Her recovery was long and painful. Military health benefits covered the cost to get Wager back on her feet, but there was another problem. Her menstrual cycles had completely stopped, doctors say her injuries threw her body into early menopause. She was just 31 years old and her chances of having a child were slim to none.”

You can read more of Michelle’s story here.

We invite you to learn more about the challenge veterans face when pursuing family-building options and to contact your federal representatives asking them to co-sponsor S 469, the Women Veterans and Family Health Services Act. Find your representatives here.

 

Myth: Advocacy Day is Over and The Work Is Done

This past Wednesday Elizabeth, myself and several hundreds of other infertility professionals and infertile individuals met with our representatives asking them to support The Veterans Amendment to the Senate Appropriations Mil-Con Bill. This bill would provide funding for the VA to offer IVF to wounded veterans. Currently, the VA does not provide IVF coverage to our Veterans. You can learn more about this injustice hereWe just learned that the Senate will be voting on this issue this week! And so, our #IFAdvocacy work is not over — it is just beginning! Please take time this week to contact your Senators and urge them to support this very important bill! 

Below, we are busting the myth that Advocacy Day is just a one-day event. We provide reflections on Advocacy Day and some strategies to help you encourage those in your infertility support network to continue this important advocacy work all year long.

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Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

tapper

Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

13230315_10154236330306742_2925500788373099402_n

Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Let’s Remember Advocacy Day Is Just the Beginning

Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

tapper

Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

13230315_10154236330306742_2925500788373099402_n

Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

 

 

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Last Call for Interviews in D.C. Next Week

A week from now, Advocacy Day will be over. However, your story can be shared to promote #IFadvocacy throughout the year and beyond, by recording an interview for our oral history project. Maria and I are scheduling mini interviews on Tuesday May 10 and Wednesday May 11 and would love to hear about your infertility journey.

ART-of-Infertility-ArtifactThe interviews will be short, about 30 minutes in length including a quick photo session, and we invite you to bring along an object that helps you tell your story. Maybe it’s a photo of the embryo that became your child, the journal you kept, a necklace you bought to remember a baby you lost, or a bill from your clinic. You can read a bit about our sessions at Advocacy Day last year at this link.

If you’d like to share your story with us, please fill out the Google Form found here. After today, we’ll be looking at all of the responses we receive and will contact you with your interview time slots. Due to the tight schedule, it’s likely we won’t be able to talk to everyone while we’re in D.C., but will work with you to record your story at a later time if we can’t meet up next week.  We hope to hear from you and look forward to seeing you in D.C.!

Elizabeth

Share Your Story with the ART of Infertility in Washington D.C.

In exactly one week, we will be in the Washington, D.C. area for RESOLVE: The National Infertility Association’s Advocacy Day. For those in the area or those who are traveling to D.C. for Advocacy Day, we invite you to consider participating in the ART of Infertility project. This project will be traveling around the U.S. this year sharing your inspirational infertility stories at a variety of venues and events — some directly related to the topic of infertility and some interested in storytelling from a broader vantage.

Renee, Annie, Elizabeth, Maria, and Jo at the wrap up reception during Advocacy Day.

Renee, Annie, Elizabeth, Maria, and Jo at the wrap up reception during Advocacy Day in May 2015.

These interviews in D.C. will be brief — 30 minutes at the most. And we invite you to bring an object that helps you talk about a part of your story. In the past, these objects have ranged from a tattoo, to a quilt to even a poem. We invite all objects and all stories. You can read and hear snapshots of interviews from last year’s event, here.

If you are interested and would like to participate, we ask that you fill out this brief Google form. We look forward to meeting new and old faces in D.C.!

 

Myth – Infertility awareness is only important for one week in April.

Last week was a big week for us, it was National Infertility Awareness Week. We believe in raising awareness about infertility year round and one of the biggest days of the year is right around the corner. What is it? Advocacy Day. It’s a day when those in the infertility community, and their friends and family, descend on Washington, D.C. and have meetings with their legislators, encouraging them to support the bills that will improve the lives of those with infertility by helping them build their families. If you’ve never done anything like that before, it might sound a bit scary. I’ll admit I was a bit nervous the first year I attended. However, that nervousness was quickly replaced with a feeling of strength and empowerment I hadn’t before felt in my infertility journey.

Maria and I attended our first Advocacy Day in 2014. It's where we met! Here we are with Maria's husband, Kevin Jordan, and one of my best friends, Sarah Powell.

Maria and I attended our first Advocacy Day in 2014. It’s where we met! Here we are with Maria’s husband, Kevin Jordan, and one of my best friends, Sarah Powell.

Advocacy Day is on May 11th this year. The deadline for registration is this Wednesday, May 4th. Have ever felt discouraged by the out of pocket expenses you’ve incurred due to your disease? Ever wished that there was more research being done about conditions like Endometriosis or PCOS that can contribute to infertility? Have you wished that there was more support for potential adoptive families? Have you thought it’s an outrage that there is a ban on IVF for veterans? If so, this is an opportunity for you to tell law makers how you feel and be a part of changing things for the better. Maria and I will be there, along with many of the individuals you’ve read stories about here. Candace Wohl, Judy Horn, Lindsey, Jennifer, Katie Lelito, Cindy Flynn, Brooke Kingston, Risa Levine, Angela Bergmann, and more. If any of these people’s stories inspired you, here’s a chance to meet them in person! I will happily introduce you!

Need more inspiration? Check out the videos below!

Please, meet us at Advocacy Day!

Elizabeth