Courtney Rowe for Congress and her Interview with Mika

17798942_1840416086218309_2223149312025208280_nRecently, I interviewed Courtney Rowe who is running for Congress in Iowa Congressional District 1. 

Here are the questions I asked and her responses. Following them, I will give my thoughts on them.

Question 1: The average student-loan in 2014 was $28,950, representing a 56 percent increase from the 2004 average of $18,550. During that same decade, state funding for public colleges dropped from 62 percent to 51 percent. College is free in Sweden, Denmark, and Finland, while in France, public universities are free for students from lower-income families, and those from higher-income families pay about $200 a year. What would you do or support to reduce the cost of going to college or make it tuition free as it is in many nations?

  • Courtney’s answer: Increase Federal funding to make state and community college (including trade school) essentially free (no more than $50-100 per class).

Question 2: The Republican-controlled Congress appears to be fighting for corporations, insurance companies and for-profit hospitals in their effort to repeal the Affordable Care Act (ACA). Repeal would mean that 57 million senior citizens and disabled Americans with Medicare would see higher premiums and deductibles. Repeal would increase Medicare spending by $802 billion over the next ten years, according to estimates by the Congressional Budget Office. Repeal would also take Medicaid away from nearly 17 million people. I am one of the Americans who benefits from the ACA because I live with a pre-existing condition, cystinosis. The disease is a rare orphan disease that causes the amino acid cystine to accumulate in the cells, and it slowly damages my organs including the kidneys, liver, thyroid, eyes, lungs muscles, and brain. Do you support keeping the ACA?

  • Courntey’s answer: Yes, until we replace it with something better.

Question 3: The ACA is a significant step forward, and we must fight to protect it. However, even with it one of my medications, Procysbi costs over $75,000 for a 30-day supply. That is just one medication not including the 24 other medications I am taking. What do you propose which would correct the errors in the ACA?

  • Courtney’s answer: I support universal single payer healthcare. This is the most cost effective way to cover everyone.

 

In 2017, many transgender and intersex individuals still do not have access to high-quality comprehensive health care. Even when transgender and intersex individuals do access health care they are often faced with harassment and discrimination. Some of the issues that transgender and intersex  individuals face  include but are not limited to the follow, physicians and medical staff refusing to identify the individual by  their preferred name and pronouns (for many individuals it is difficult and sometimes even impossible for transgender and intersex individuals to correct their government documents to reflect their identities because of the cost and in some states a confusing process), insurance companies (including Medicare, Medicaid, Tricare, and VA) refuse to cover gender conforming treatments including surgery, sometimes transgender and intersex individuals are even refused care by physicians and medical staff. What would you propose to correct these wrongs?

 

  • Courtney’s answer: I’m excited about the new TransCare clinic at Planned Parenthood in Cedar Rapids. I talked with Planned Parenthood about the deployment of this clinic. Even a place as progressive as Planned Parenthood needed training for their staff. My wife works as a Chaplain at Unity Point, and is working with their staff on making it a more inclusive environment, including designating gender neutral bathrooms. I support the Employment Non-Discrimination Act, and would also support a Medical Non-Discrimination Act. As far as addressing people by the correct pronouns, we could set aside funds for medical facilities who want to get the training, and add a designation medical facilities could use to identify themselves.

Question 5: Over eight in 10 (85 percent) LGBTQIA students experienced verbal harassment based on a personal characteristic, and nearly two-thirds (66 percent) experienced LGBTQ-related discrimination at school (GLSEN School Climate Survey 2015). Most LGBTQ students report that they’ve heard homophobic remarks (56 percent) and negative remarks about gender expression (64 percent) from school staff (GLSEN School Climate Survey 2015). LGBTQ students who experienced high levels of anti-LGBTQ victimization were twice as likely to report they do not plan to pursue post-secondary education. Also, LGBTQ students who experienced high levels of anti-LGBTQ victimization and discrimination had lower GPAs, lower self-esteem and higher levels of depression (GLSEN School Climate Survey 2015). What would you do to protect LGBTQIA students? Federal Anti-discrimination law?  

  • Courtney’s answer: Federal funding for anti-bullying training for school administrators and teachers. Also, by making college free/cheap, we help the LGBTQIA kids who leave their homes as teenagers. Right now to apply for FAFSA you must enter your parent’s tax information until you’re 25. This means kids running from abusive homes, can’t even get loans for college. Federal funding for anti-bullying training for school administrators and teachers. Also, by making college free/cheap, we help the LGBTQIA kids who leave their homes as teenagers. Right now to apply for FAFSA you must enter your parent’s tax information until you’re 25. This means kids running from abusive homes, can’t even get loans for college.

Question 6: In 20 states and DC prohibit employment discrimination based on sexual orientation and gender identity. In two other states, they include sexual orientation but not gender identity. In 19 states and DC prohibit discrimination in public accommodations based on sexual orientation and gender identity. In two other states, they include sexual orientation but not gender identity. In 20 states and DC, they prohibit discrimination in housing based on sexual orientation and gender identity. In two other states, the include sexual orientation but not gender identity. What will you do to ensure full federal civil rights for LGBTQIA individuals?

  • Courtney’s answer: I support a fully inclusive ENDA Employment Non-Discrimination Act. We can’t leave out our trans brothers, sisters, and gender non conforming siblings when we pass this legislation.

Question 7: Since 2013, there have been over 200 school shootings in America — an average of nearly one a week (https://everytownresearch.org/school-shootings/). Data from the U.S. Centers for Disease Control and Prevention (CDC) show that on an average day, 93 Americans are killed with guns. What gun laws and or reforms do you support?

  • Courtney’s answer: I think most gun laws approach this problem incorrectly. They focus on banning a type of weapon, which isn’t the cause of most gun deaths. We have to look at the people who cause these deaths to correctly address this issue. I propose a ‘Responsible Gun Owner’ law which would focus on gun safety education to address accidental shootings, minimum gun storage standards (all guns should be stored in a safe), gun buy back programs in cities to help remove guns from high crime areas, temporary gun holds for people charged with domestic violence (to prevent the high rate of current/former husband/boyfriend killings/shootings of wives/girlfriends), increased access to mental health care to prevent the high rates of suicide and murder suicides by guns.

Question 8: Do you support comprehensive immigration reform with a path to citizenship?

  • Courtney’s answer: Yes. When people are not documented, they no longer have access to law enforcement to report other crimes. This makes it easier for crime to persist, and it affects everyone. We need to document everyone who is here. If people are here, not criminals, and have established a productive life here, we should document them and get them in the tax system under their own SSN. There should be a path to citizenship for those who meet the above qualifications, but it should not be a direct amnesty program.

Question 9: Do you support the DREAM Act (Development, Relief, and Education for Alien Minors), DAPA (Deferred Action for Parents of Americans), DACA (Deferred Action for Childhood Arrivals), TVDL (Temporary Visitor’s Driver’s License), and UAFA (Uniting American Families Act)?

  • Courtney’s answer: I’m not familiar with the specifics of each of these acts to say I support them in their current form. I support the concepts behind these acts, which is documenting everyone, not punishing people who arrived in this country as children, and not breaking up families by deporting law abiding citizens who are productive members of society.

Question 10: Do you support replacing the minimum wage with a “living wage”?

  • Courtney’s answer: I support a $15 per hour minimum wage.

Question 11: What is your stance on the Trans-Pacific Partnership?

  • Courtney’s answer: I oppose the TPP because it would prevent America from making it’s own laws if they negatively impacted any multi-national corporations profits. It also establishes free trade with not similarly situated nations (Mexico (already there under NAFTA), Malaysia, and the Philippines). Free trade with similarly situated nations (Canada, Australia, New Zealand, and Japan) is a good thing. It expands our economy. However trade with countries with drastically lower wages and few worker protections, creates slave labor countries. This reduces the value of labor in our own country, and allows multi-national corporations to oppress workers in poorer countries. We can trade with these countries, but we need to carefully craft the trade to ensure labor is valued.

Question 12: Do you support “too-big-to-fail” legislation?

  • Courtney’s answer: I support creating a hard barrier between investment and consumer banking. I did support the bailout, because we had to do that to prevent the economy from crashing. Now we need to create the necessary regulations to prevent that situation from occurring in the future.

Question 13: Do you support a 21st Century Glass-Steagall Act?

  • Courtney’s answer: Yes.

Following her answers, I had a couple follow-up questions and here they are.

Question 3 you said, “I support universal single-payer health care. This is the most cost effective way to cover everyone.” I support Medicare for All as well. However, it is something that will take time to get to. Thus, in the meantime what do you propose to curb the cost of prescription drugs? 

  • Courtney’s answer: I support Sen Sanders effort to allow for the importing of prescription drugs from reliable countries, like Canda. I myself am on an autoimmune prescription that costs around $650 per month. In Canada it is only around $100. Furthermore, although I would like to see Medicare for All or Single Payer healthcare, and if elected would work tiresly toward that goal, I would support any legislation that would make healthcare more affordable and accessible to all Americans.
Question 5 you said, “Federal Anti-discrimination law. Federal funding for anti-bullying training for school administrators and teachers. Also, by making college free/cheap, we help the LGBTQIA kids who leave their homes as teenagers. Right now to apply for FAFSA you must enter your parent’s tax information until you’re 25. This means kids running from abusive homes, can’t even get loans for college.” I agree with you. However, I do not support ENDA because of HRC’s debatable ethics of compromising away our rights through religious exemptions. I do support adding “sexual orientation” and “gender identity” to the 1964 Civil Rights Act without any religious exemptions in the form of the Equality Act. Would you support such legislation?
  • Courtney’s answer: #5 There have been many versions of the ENDA, which is why it can be hard to offer support of a particular draft of legislation. I think we should be careful in offering religious protection beyond the 1st Amendment. The 1st Amendment already protects religious institutions and offers people the ability to practice their religion. It is important to ensure that the language of a law does not violate the 1st Amendment protections, but we should not attempt to provide additional protection. I personally helped the committee of my denomination, the United Church of Christ, in the wording for our 2015 resolution at Synod against ‘Religious Freedom’ laws that are used to legalize discrimination. This resolution was passed, and the text can be found here:

My responses to her answers.

Question 1: I support what she is saying here but I am unsure if she supports tuition-free debt free college and universities from her answer. It seems to me that she only supports increasing funding to higher education and making community college tuition-free. But again, I am not sure what she is saying.

Question 2: I support and agree with her.

Question 3: I agree with her answer, however, I would hope she also supports adding further regulations on prescription drugs and allowing the federal government (Medicare and Medicaid) to negotiate prescription drug prices.

Question 4: I understand what she is saying. Nonetheless, I would hope that she would require health care professionals to add individuals to be referred to as they prefer including recognising their gender however they identify.

Question 5: I would hope that she supports a fully inclusive federal anti-bullying and anti-harassment bill. Which by the way we do not have.

Question 6: Well, that is great that she supports employment protections and the first amendment allowing religious protections. However, does she support protections in public accommodations, housing, and credit? This all would be provided by the Equality Act which she has not stated whether she supports.

Question 7: I am sorry but guns are not the cause of most gun deaths!? What the hell!? I do support her idea as a ‘Responsible Gun Owner’ law but I still believe that some kinds of guns must be banned, like an assault rifle, and high capacity magazines.

Question 8: I do support an amnesty program, with some restricts for instance on persons who have committed serious crimes. Not drug convictions or traffic violations. I do not believe that having a drug conviction or traffic violation should result in losing your immigration status or citizenship.

Question 9: I am glad that she supports these laws and bills.

Question 10: Awesome! We need more people who support a living wage.

Question 11: I am glad she opposes TPP, but I also am opposed to free trade. It should only be fair trade ensuring equal protections for all workers no matter what country they live in.

Question 12: I was hoping she would be in favor of Sen. Sanders “Too-Big-To-Fail-Too-Big-To-Exist” Act.

Question 13: Awesome!

If you wish to learn more or ask her question please visit her page here: https://www.facebook.com/courtneyroweforcongress/

 

 

 

 

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2016

 

This past year has been very exciting and challenging. Many events have taken place. Let’s begin with January.

In January, I started working for the Bernie Sanders campaign. On the campaign, I worked under a field organizer to help ensure they met all of their goals. I was working in Iowa on the caucuses where I was based in Council Bluffs and also did organizing in Harrison County.

On February 1st, Sen. Sanders won half the Iowa delegates. Iowa was a tie this was huge news for the Bernie Sanders campaign. The official results were 49.8% for Clinton and 49.6% for Sanders. Therefore, Sen. Sanders won 696.82 state delegates, and Hillary Clinton won 700.9.

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Locally, Pottawattamie County, which was supposed to be a stronghold for Hillary Clinton went to Bernie Sanders, 50.7% to 49%. Further, in my precinct, Council Bluffs 11, it went 62.5% for Sanders and 37.5% for Clinton.

Bernie Sanders had a great showing in Iowa for a long-shot candidate.

Following the Iowa caucuses, I began working in Nebraska on their caucuses as a Field Organizer. During this part of the campaign, I was based in Lincoln. Thus, on the weekends I would spend my time there and weekdays in Council Bluffs organizing in Omaha and Dodge County, NE because I was still a full-time student at Iowa Western Community College.

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After the Nebraska Caucuses, I went back to working in Iowa, but now I was organizing the Sanders campaign participation in the County and District Conventions. We worked to make sure that Sen. Sanders would get a fair representation of the delegation he won on the night of the caucuses.

I also worked in Kansas on their District Conventions doing the same job and in Colorado on their State Convention doing similar work, but I also had the opportunity to monitor the official counting of the ballots and helped with the certification of those ballots as the Sanders, campaign representative.

Moving forward, in June at the Iowa Democratic State Convention, I ran for Democratic National Committee (DNC) member. I did lose the election. Together we won. We won at the state conventions around the nation, in California, Missouri, Nebraska, Texas, and Washington.

Even though I lost, we won, because we won enough votes to show a strong standing against the party establishment demonstrating that we want change.

Specifically, at the Iowa State Convention, we passed one of the most progressive Democratic State platforms.

  • Calling for single-payer healthcare
  • Supporting the death with dignity act
  • Protecting LGBTQIA elders against discrimination
  • Support of health insurance coverage for transgender individuals
  • Support of tuition-free state college and universities
  • Opposition to the Trans-Pacific Partnership
  • Support of equal human rights for Palestinians and Israelis.
  • Calling for 100% renewable energy by the year 2025.
  • Opposition to fast-tracking trade agreements.

The convention even agreed to a plank calling for the abolishment of superdelegates.

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In July, I officially came out in support of Hillary Clinton. This was after 29 million people voted in the Democratic primary. Bernie Sanders won 1,831 national delegates, 13 million votes, and Hillary Clinton won 2,220 national delegates.

It was an honor to have volunteered and been a staffer for Senator Sanders. Together, we began a revolution to transform American politics and that revolution continues. We fought and are fighting for a government that works and represents us all, not just the one percent.

In August, I moved to the University of Iowa to get my Bachelor’s degree in psychology and perhaps sociology. At the University of Iowa, I have taken the following classes, Behavioral Neuroscience, Clinical Psychology, and Sociological Theory.

However, moving to Iowa City wasn’t all fun because a couple of things happened after I got here. I received terrible news of a friend passing away. Her name was Pauline Beck.

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Pauline was a great person who would do anything for the people she loved. She even had an impact on many lives by her generous heart. She was a friend to many and was like a mother to others.

I first met Pauline the first day she walked into the 2016 Bernie Sanders office in Council Bluffs, Iowa. From that day forward she was in the office nearly every day. She took care of many of the needs of the office, or she would find someone who could. She provided many home cooked meals, cleaned the office, and made many creative decorations.

She is greatly missed by many.

Then we have November where Hillary Clinton won the popular vote but lost the undemocratic Electoral College vote to Donald Trump. We lost the battle but not the war.

On November 10, the vote total was 59,695,628 popular votes and 279 electoral votes for Donald Trump to 59,920,291 popular votes and 228 electoral votes for Hillary Clinton which her lead would grow to nearly 3 million votes.

As a progressive Democrat, I was proud to have voted for Hillary Clinton, and I am deeply saddened by the results of this election.

Even though Democrats did not win back the Senate as expected or gain more seats in the House; Democrats did not lose everything. Just look at the states. In states like California, Nevada, Washington, Colorado, and others they all passed progressive ballot measures.

Arkansas

  • Legalized medical marijuana

California

  • New background checks for ammunition and prohibits possession of large capacity magazines
  • Legalized marijuana for use by adults 21 and over

Colorado

  • Raised the minimum wage
  • Allow terminally ill patients to end their life with assistance of a doctor

Maine

  • Legalized marijuana for use by adults 21 and over
  • Raised the minimum wage

Massachusetts

  • Legalized the possession of marijuana

Montana

  • Legalized medical marijuana

Nevada

  • Expanded gun background checks
  • Legalized marijuana

North Dakota

  • Legalized medical marijuana

Washington

  • Increased the minimum wage

14956434_1272438012819316_4901109538472250760_nAdditionally, in November Blair Lawton announced that he would run for Chair of the Iowa Democratic Party and I threw my support behind him.

I support Blair for the position because of his experience working on campaigns and his ideas on how to rebuild our party. Blair believes in contesting every legislative race and spending less time courting big donors and more time building grassroots donations from activists.

20160412_114409On December 5, I announced my candidacy for Vice-Chair of the Iowa Democratic Party. The election will be held on January 21.

I am running for Vice-chair because I want to give back to the party that has fought for my civil rights and fights for health care for all. I am running because I want to rebuild the party.

My passion stems from the fact that I know that if I want to have rights, I need to step up and fight for them.

Half of the year, I have been fighting for health insurance because the Social Security Administration decided that I am no longer medically disabled. However, the issue is that they not only want me to go to work which is fine but they terminated my health insurance, and I am left to my own devices to find health insurance. Meaning that I must find health insurance that will cover my medications including anti-rejection and cystinosis medications, which add up quickly, one of the drugs alone Procysbi cost over $63,000 for a 30-day supply.

This on-going battle with the Social Security Administration is quite stressful and demeaning. Especially because of the psychological evaluation, an enormous amount of paperwork, and calls I have endured during the last six months.

Participating in a psychological evaluation to determine if one need help through the Social Security Administration can be hurtful and demeaning especially when the psychologist has their biases against the client.

From the beginning, she was expecting a male and instead got me. On top of that, I was involved with the Democratic party.

Therefore, reading her evaluation makes one feel inferior and worthless. Specifically, in the evaluation notes, she states, “She appeared to be low average intellectual ability,” and she did this without doing any intelligence assessments. But we cannot forget how she calls me male several times.

How would I rate 2016?

The first part of the year was awesome I was full of hope and energy but as the year went on that energy and hope drained.

Currently, I have little hope for a better future, and my energy is draining fast. This is because of these recent events with Hillary Clinton losing, Democrats losing control of the Senate in Iowa, not gaining control of the U.S. Senate, and not to forget this on-going battle that I keep fighting with the Social Security Administration. I seem to be losing this fight, and I keep getting this feeling that hits me in the gut, it feels like I’ve already been defeated.

Nevertheless, with the hope I have, I will fight on!

Sen. Sanders the New Democratic Party Leader

Photo Credit: Washington Times
Photo Credit: Washington Times

Sen. Bernie Sanders lost the 2016 Democratic Party presidential primary. However, he has emerged from the general election loses as a new Democratic Party leader. He is concerned with rebuilding and growing the Democratic Party.

I stand with Sen. Sanders in his effort in doing this!

The Democratic Party has become a party more concerned with raising money from wealthy individuals than they have been about bringing working people into the party and taking on the billionaire class, taking on Wall Street, taking on drug companies or the insurance companies – Sen. Sanders (Garver)

Therefore, Bernie believes that the party must have a “fundamental reassessment.” He believes that the Democratic Party cannot continue to dependent on wealthy donors and big money interests.

Instead, he thinks that the party must reorient themselves to the electorate and stand in strong opposition to President-elect Trump’s oppressive policies.

Additionally, Bernie believes that there must be a change in the leadership of the Democratic National Committee (DNC) and he is supporting Representative Keith Ellison for DNC Chair.

Rep. Keith Ellison is a leader of the Congressional Progressive Caucus and was a supporter of Sen. Sanders during the primary. He has gained the endorsements of Sen. Bernie Sanders, Senate Minority Leader Harry Reid, Sen. Charles Schumer, Sen. Amy Klobuchar, Sen. Chris Murphy, Rep. Raul Grijalva, Rep. G.K. Butterfield, Rep. Joseph Crowley, and New York Attorney General Eric Schneiderman (Washington Post).

Join the movement: Keith for DNC

Blair Lawton for IDP Chair

14956434_1272438012819316_4901109538472250760_nThe 2016 general election was bad for Democrats, and we lost, and we lost big. We lost control of both houses of Congress and the presidency. Here in Iowa, we lost control of the House and Senate again.

Many people feel down and want to give but we cannot. Now is the time to stand up and fight back. Now is the time to create real change in the Democratic Party.

Moving forward, I believe that we must listen to the voices of the youth, which are the next generation of Democrats. We must work to bring in new people into our party and gain the trust of those first-time caucus and primary voters who voted for Sen. Bernie Sanders but then left the party when they felt that their voices were unheard and their opinions were not valued in the general election.

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Therefore, we must elect new leadership and hold people accountable at all levels. This is why I am supporting Blair Lawton for Iowa Democratic Party (IDP) Chair.

Blair is a campaign staffer who has worked on the Obama, Sanders, and Mowrer campaigns.

This election showed that the IDP needs a renewed focus on building the party from the grassroots up. To me, that means getting serious about organizing in rural areas. It means contesting every legislative race, as well as spending less time courting big donors and more time cultivating donations from grassroots activists – said Blair Lawton.

I support Blair for Chair because he has a history of being a professional campaign organizer and he knows how to bring people together. This is what we need to rebuild our party and to start winning elections again.

To join the campaign like the Facebook page here: https://www.facebook.com/blair4chair/
Sign up to volunteer here: Sign Up!

From There to Here

 

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Pott. County Democrats Lunch (Photo Credit: Linda Nelson)

Chapter 1

 

A child lays in a hospital bed with tubes running into her allowing medications to flow into her. This child is very sick, and the doctors do not know what she is suffering from or how to treat it. Her family is there waiting, not knowing what to do or how to help their daughter.

After hours of waiting, the many doctor’s visits, and multiple hospital stays they have an answer to what their daughter has and a possible treatment. The doctors informed her family that she has cystinosis, a metabolic disease that causes cells to crystallize causing early cell death. The disease slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and brain. They tell them that their child has an incurable disease that will eventually take her life.

I am that child. I, Mika Jayne Covington, am the daughter that lives with that fatal illness. I am 25 years old and still living thanks to the doctors and researchers at the National Institutes of Health (NIH). I am still alive.

Cystinosis has been a struggle, and it has been a challenge for me including those who care about me. Yes, perhaps I’m a survivor. However, I’m still living with it every day. There is no break, and I do fall apart from time to time because of it.

When I was a kid, I was always seen as different. Every day, I would go to the nurse’s office to take medications. Many days I had bad breath and body odor from my medications, and I felt sick to my stomach, which usually ended in me vomiting.

Elementary and middle school were particularly challenging for me because of this. Not to forget all the doctor appointments and hospitalizations that I had which caused me to miss a lot of school. Growing up with cystinosis is challenging and quite the journey.

Cystinosis is not the only thing that defines me. I am more than my diagnosis. I am a progressive democrat, a feminist, a human rights activist, an organizer, and a student, beyond all of this, I am a person.

However, cystinosis is part of everything. It is with me every day and intersects everything I do. Because I must take medications daily and I must make sure that I have health insurance no matter where I go to school or work. I even cannot leave for a weekend vacation without packing medications, and it is not just a couple, it is thirty different drugs. Because of them, I am reminded of the disease every several hours.

In the second grade, there was a boy in my class; we would go to his house and play games together. We frequently played at school during our recesses. I was drawn to him. He always stood up for me against the big bad bullies. He would hug me and tell me, “Don’t cry, I won’t let’em hurt you.”

At that age, I did not think that I was different or see that there was anything wrong with me. I had no idea what being gay was. I was me, and he was my best friend, that was all I saw back then.

Later, my family moved to Wahoo, Nebraska and I never spoke to him again. I was in the third grade when I first heard the word ‘gay.’ I did not understand what it meant and I was too busy playing and being a kid to worry about it. Until my classmates started calling me gay and a sissy because they saw me as weak and I did not do or like what most of the other boys did. There were also these feelings that I did not quite understand. I thought that they were normal, so I did not pay much attention to them.

I was busy trying to be ‘normal’ while living with cystinosis. Taking medications and dealing with side effects. Making up school work from missed classes because of hospital stays and doctor’s appointments. I just did not have the time or want to deal with another thing that made me seem different from everyone else.

Around the end of third grade, someone called me a ‘faggot.’ I cried that day for hours. I could not understand what it meant but knew that it hurt me that people would call me these names. I began to realize that I was different and I had no idea what they saw in me that was bad or wrong with me.

It was in the fourth grade when I began having sexual feelings and started to think that I might be gay. I tried to push them away and tell myself, “No, it’s wrong to think like that.” I believed that I was sick and depression set in. I had no idea what to do. I wanted to go back to second grade and be with my friend; he would make all the bad things go away. I tried to pretend that I was sick all the time so I would not have to go to school or be able to leave early to get away from the bullying.

In 2010, my senior year in high school, I turned 19 and lost my health insurance. In Nebraska, a person becomes a legal adult at age 19 and per Medicaid rules, one must re-apply for coverage. I did just that and was denied. I was told that I was not eligible for coverage for having a pre-existing condition (cystinosis). I tried applying four times with the same results.

Thus, while attempting to be a regular high school student and completing my senior year, I needed to figure out how in the world I was going to get health insurance. I needed the insurance to cover all my medications that kept me alive and keeps the disease at bay.

At this point, I was working at J.C. Penney, but not nearly making enough money to cover private health insurance. Not to forget, I was beginning my process of coming out as transgender. And finding my political affiliation as a Democratic Socialist.

While many of my friends were talking, and laughing about who they were dating, talking about what college they planned to attend, and what classes they would take, I wasn’t, no not me. They made me feel angry, hurt, and mad at the world and God. Nevertheless, I understood that perhaps I saw the world a bit more clearly than they did. I guess they all may have made me stronger, and that they made me into the person I am today. I was even forced to make sacrifices that I did not want to make, but I knew I needed to so that it would protect me and get things done.

National Institutes of Health (NIH)
National Institutes of Health (NIH)

With no avenue to appeal their decision, I decided to focus on graduating high school and going to college until my scheduled trip to the National Institutes of Health (NIH) that fall. I went most of that year without any medications, which resulted in me going into end stage renal or kidney failure and it probably cut a few years off my life. I went from needing a kidney transplant in 2-4 years to needing one in six months to one year. If I had had health insurance and access to the medications, I might have been able to wait until after college to have a kidney transplant.

After I had graduated from high school, I knew I wanted to contribute to society in any way possible and work to create the change I seek. Unfortunately, having cystinosis and going on dialysis forced me to stop working. To stay busy, I volunteered on issue and political campaigns, such as fighting for full federal LGBTQIA (lesbian, gay, bisexual, transgender, queer, intersex, and asexual) equality, voting rights, and healthcare for all. I am passionate about these because I look forward to a future where everyone has the right to vote, has full and equal human rights, and access to high-quality health care. For me, these causes are important because I know first-hand how not having access to health care can cause a chronic disease to get worse like mine did.

Chapter 2

In 2011, I faced more challenges that made it more difficult for me to attempt to put cystinosis in a box as just one detail of who I am because my kidneys failed. I would need a kidney transplant or start dialysis. Therefore, my doctors put me on hemodialysis and at the time I did not have an organ donor.

hemodialysis1Hemodialysis is a form of kidney dialysis that can be done with a catheter (a plastic tube) placed in the chest into the superior vena cava (a very large vein right about the heart) that is used to cycle blood into a machine that cleans it and returns it. I was on this form of dialysis every other day for four hours in a medical center for about ten months.

I knew that I would need to look for a kidney donor because I could not indefinitely live on dialysis. After a couple of months of searching, I found one, and her name was Erika von Kampen. She was a match, and we had the transplant scheduled at the University of Nebraska Medical Center (Nebraska Medicine). Unfortunately, the operation was unable to happen there, and I had to move on.

PD Bag
PD Bag

Therefore, in February 2012, I switched to peritoneal dialysis. This form of dialysis uses my body, the peritoneal membrane in my abdomen as a filter to clear wastes and extra fluid from my body and returns electrolytes.

I was on peritoneal dialysis for fifteen months. This form can also be continuous, which I did go to when I had a cycler so that it could cycle the fluid at night while I slept. I was on it from 2012 to May 30, 2013, when I received a kidney transplant from the University of Iowa Hospitals and Clinics (UIHC).

PD Cycler
PD Cycler

Sophomore year at Wahoo High School was sort of the best and worst year I had ever had in Wahoo. I decided that I could be ‘normal.’ I worked to open up to people and put myself out there. I just wanted to be like everyone else, to be normal. I decided that to be normal, and I should find a girlfriend. My cousin had a friend who I also knew, and we had several things in common. I asked her and my cousin to go to the homecoming dance. I thought it would be a safe way to attempt to belong.

New Year’s Eve, I was with my older sister and cousin, we were celebrating the promise of the New Year, and I told them that I was indeed bisexual. Both my cousin and sister said, “Yea, we know.” They poked fun for a bit, in a loving way, and we continued chatting as we always had. I finally felt like I could be myself.

The next day was a new year; I felt it was time to live openly, and I experienced firsthand what living honestly meant. Including the pain of being different in a small town high school in the United States, and especially in Nebraska where it was legal to bully and harass a fellow student based on their sexual orientation. To this day, there are no state or federal laws banning bullying or harassment based on sexual orientation or gender identity.

As an openly ‘gay’ student, I experienced bullying and harassment in a new way, but I decided I would have to live with what was thrown at me. Soon the bullying escalated to the point where I needed to leave Wahoo. I became very depressed and angry. I didn’t completely understand why I felt that way. Especially since I just came out and from my research, I should be feeling better. Nevertheless, I didn’t feel any better. I still felt wrong in my body.

One Summer day, after watching my older sister have her nails done, something happened. It was like a light went on. I started to wonder what it would be like to have my nails painted. Thus, when I went back to school a couple of my friends, and I painted my nails, and I liked it.

Soon, I felt more comfortable and started looking at expanding my gender expression. I looked at wearing tighter jeans from Hot Topic. I knew that guys were not ‘supposed’ to paint their nails or wear so-called ‘girly’ clothes. However, I wanted to wear them, and they made me feel more safe and comfortable. They also scared me to death. Then, I became active in other things to express myself such as choir, drama, and activism.

 

As I’ve said, cystinosis is only a part of my life, and peritoneal dialysis changed my life to make it a smaller part of it. It was like I had some of my freedom again. I was able to follow my passion and fight for what I believed in again. I was able to become active in politics, and I met many wonderful people including Amber Bordolo a Field Organizer with Organizing for America (OFA).

While I went to college at Iowa Western Community College (IWCC), working on my Associate’s degree in psychology, Amber invited me to a couple of her events. I finally attended one of them, became friends with her, and she recommended that I apply to become a Summer Fellow (intern) at OFA. Little did I know how big of an impact that was going to have on my life.

398777_10150940759848430_1366498105_nIn the beginning, I worked to organize house parties and other events to get supporters together, fired up and ready to go to work to get the President re-elected. Soon, I moved into a different stage of the campaign where I made many calls to convince voters to support him. Additionally, on the campaign, I had the chance to go to Des Moines, Iowa to see the President speak to a crowd of supporters at the Iowa State Fairgrounds where I was able to stand on stage behind President Barack Obama.

While I worked with OFA, I considered going to UIHC to get on their transplant list and perhaps have a living donor transplant.

University of Iowa Medical Center
University of Iowa Medical Center

In September of 2012, I went to Iowa City, Iowa for medical tests and evaluations at UIHC Transplant Center to see about being placed on their list. I passed and was placed. Additionally, I went out to find a living donor. This included me sharing my story and health condition with people. Then I sent out packets of information and forms to eight individuals who were interested. However, only three were returned to the transplant center, and one was a match, but had complications and could not donate. I had to make a choice, spend more time sending out packets or see if Erika was still willing to donate her kidney.

I was lucky because Erika was still interested in donating. Once she filled out the forms, and they were returned to the transplant center, they immediately scheduled her for an appointment to be evaluated since we already knew she was an excellent match. The operation was scheduled for May 30, 2013, which I dubbed adoption of Serenity because I named the new kidney Serenity.

Chapter 3

IV meds post-op transplant.
IV meds post-op transplant.

I wake up feeling pain and choking on the dryness in my throat. The nurses around me are talking and doing things with my iv lines. I couldn’t understand exactly what they were doing.

One of them asks me, “Mika, what is your pain level?” I don’t respond, and I just groan because I still am fighting the hoarseness and dryness in my throat. I try to swallow the saliva that isn’t there and fall back asleep.

I wake again hearing someone ask me, “Mika, can you tell me what your pain level is?”

I clear my throat and say, “I feel pain. A lot of pain.”

The person replies, “Yes, what is the pain level? One to ten.”

I reply, “It is an 11.” I then feel someone touching my arm, and I fall asleep once again.

Jon and me after our surgeries!
Erika and me after our surgeries!

The next thing I remember is people talking and being in a different room but I was not wearing an oxygen mask. Someone in the room was speaking but not towards me. I ask, but to no one in particular, “Water, I need water.”

At one moment of my consciousness, before I was fully awake, I turned to my grandmother and weakly said, “No more dialysis.”

I am a bit more conscious and aware, and I see that I am in a private patient room with family around. A nurse is trying to talk to me about the surgery, the morphine pump, only being allowed ice, and needing to get up to walk by 10:30 pm.

I am living with full kidney function thanks to Erika and the staff at UIHC. The transplant gave me my life back literally and figuratively. I started the journey to kidney transplant on November 22, 2010, to May 30, 2013. Those were three very long years of two types of dialysis, doctors’ visits, and hospital stays. All I must deal with now is immune – suppressants, cystinosis medications, blood thinners, transgender hormones, and fighting to continue to have health insurance.

But, it is still hard. I don’t know what it is like to just live. To live without there being a struggle or some challenge to overcome. Ever since I graduated high school, I have been living from one struggle or challenge to overcome to the next. No time to breath, no time to relax or get comfortable. Or at least the moment that I start to relax something new happens, another challenge confronts me. I know how to survive but do not know how to live.

Nevertheless, cystinosis and most of the challenges that I have faced have not halted my endeavors. I wanted to do more for society, and I have done that. Therefore I volunteered with the Iowa Pride Network and volunteered to be on their College Leadership Team.

On their team, I organized and ran the IPN Southwest Regional Gay-Straight Alliance Coalition. This Coalition was a great way for LGBTQIA youth and students to come together and have a safe space. Additionally, the coalition consisted of one meeting a month, and the meetings were educationally based on filling the education gap on LGBTQIA studies and issues.

While I was a member of the College Leadership Team, I was a college student at Iowa Western Community College, and in the summer of 2012, I had my first taste of political campaigning.

As I spoke about before, I became a Summer Organizer for Organizing for America (OFA) or the Obama campaign. In that position, I had many responsibilities including working closely with volunteers and talking with Iowa voters. I recruited, managed, and trained volunteers to organize their communities and neighborhoods into teams that registered, persuaded, and motivated voters. I organized my turf, which included most of Iowa House District 16. I planned and successfully organized one of the largest Equality Nights in Iowa.

During that Equality Night, I lead a discussion on the accomplishments of President Barack Obama and the Democrats for the LGBTQIA community. Additionally, I worked to grow neighborhood teams on a grassroots level and managed team leaders.

For me, this was an excellent experience to develop as an adult, learn how to handle several tasks at once and focus on total goals. It was also fun. I loved talking to voters and making connections with them about what is important in their lives and how Democrats can work with them to better their lives.

In 2007, I left Wahoo, Nebraska with my family. Most of that summer we lived in a subdivision of Omaha, Nebraska. When school started, I moved in with my cousin and her family, that way I was able to attend school with her at Millard South High School. There I met many new people. People were finally accepting of my sexual orientation and gender expression. I even met other openly LGBT students. Millard South was a safer environment for me. I was able to open up and become the person who I truly was all along.

Millard South even offered many additional academic opportunities than the small-town school. I was able to take part in the German program at Millard South. I was able to thrive there, and I gained some confidence.

Students and teachers at Millard South thought something of me. They believed that I could accomplish some awesome things in my future. I had a couple of teachers who believed in me especially when I did not believe in myself. They kept giving me encouragement. They told me to keep fighting for what is right. They believed in me when I needed someone, even when my family was not there for me. I will never forget all that they have done for me, and I hope I can repay them.

My new pride and confidence did not help me at home. As I become more open about myself, my mother and her boyfriend became negative towards me. My mother not only did not understand who I was, but she also seemed not interested in trying to learn. Both thought that I needed mental help for who I was.

On that particular issue, perhaps they were right. I needed help dealing with the damage that they were causing. I also needed someone who could help me understand myself. I’d known for years that I was different and my time at Millard South allowed me to develop and embrace parts of my identity. But, I felt that there was something more. I could not piece together why I felt that I was incomplete.

The therapist that I did see understood that the problems at home were multifaceted and did have a lot to do with my mother and her boyfriend. She understood that some of the challenges I faced were related to being queer and dealing with bullying and harassment in my life. These sessions helped me begin to accept a fact about myself that I had previously been unable to come to terms with. I could identify the roots of some of the problems and discovered more about my identity. I realized that the only way to overcome the feelings of injustice I had was to continue to fight for my rights.

At one of the sessions where my mother and I were at, I remember yelling, “Well, I am sick of listening to you cry about your problems! We are here about me! I am transgender!”

That day forward, I began coming out to people. On October 11, 2009, I told the store manager at J.C.Penny that I was transgender. I told her that from that moment on I would be identifying as female, using female pronouns, and prefer being addressed as Mika. This is the time I began the process of coming out at school and requesting my teachers to address me the same.

Chapter 4

Coming out as transgender was one of the hardest things I’ve ever done. I was terrified. I knew my family didn’t like me being queer. I was concerned about how my friends at school and work would treat me. I even expected to lose my job.

It has been a long journey. I wonder why I did not notice or understand sooner. Coming out opened my mind to new possibilities. It helped me accept myself, and I could improve my academics and work beyond what I thought I could.

After nearly six years of living openly as myself, I have started the medical transition to assist me in confirming my gender. I recently started transgender hormone therapy. The hormone therapy helps in establishing my secondary gender characteristics.

During the hormone therapy, I take two medications spironolactone (Aldactone) and estradiol (Climara). The spironolactone is used to suppress the male sex hormone (testosterone), and the estradiol is used to add the female sex hormone (estrogen).

Furthermore, I have hypogonadism, which causes my body’s sex organs not to produce healthy levels of testosterone. Because of the hypogonadism, my body was never exposed to large amounts of testosterone. Therefore, I could transition into my real gender much easier socially.

Coming out as transgender, has abled me to become a full person. I can be who I was all along. Yes, there were many challenges that everyone including myself faced. For example, many of us cannot access high-quality health care, find health insurance, change of identity documents, fair housing at colleges and universities.

In my case, I had numerous experiences of health care providers refusing to recognize my gender identity. This led to many occasions of embarrassing moments where a nurse would call my name, and I would walk over. The nurse would then ask me who I was, and I would tell them. They would say, “You aren’t a male, I am looking for a male.” Yes, that kind of occasion. There were also those events where the doctor comes in and asks me, “Where is Mika at?” I would tell them, that I am the patient. Then, I would get, “Oh! Well, I guess I have the wrong room.” Yeah, it was wonderful!

In regards to gaining health insurance, transgender individuals can get health insurances regardless of their gender identity. Despite that, most insurance policies do not cover any gender confirming treatments, and they are unlikely to include gender-confirming surgeries. Consequently, transgender individuals do not get the health care they need and in many cases or must pay out of pocket.

Thus, many transgender people are not getting the health care they require. Hence, why I waited six years to start any form of gender confirming treatments. Only recently did government policies change to allow Medicare and Medicaid to pay for some gender confirming procedures. At the moment, all of my gender confirming procedures are covered under Medicare part D. I am lucky because many transgender individuals do not have cystinosis that qualifies them for Medicare and Medicaid.

Furthermore, changing your identity documents is not a walk in the park either. It costs money and if you do not have that money you just cannot change them. As a transgender person, it destroys you every time you must show that card to someone, and it doesn’t represent who you are.

Imagine, how would you think you feel if you go to an airport to go on a vacation and going through security you must show a card that says you are male. But you apparently look like a female, and on top of that, you must use a name that isn’t you. This is the situation for many transgender individuals.

Additionally, transgender individuals face many difficulties when applying for on-campus housing at colleges and universities. Many college and university housing policies say that they make placement decisions based on the legal or biological sex of a student. This is unfair and a problem.

In my case, I first applied to live on campus at Iowa Western Community College, and the campus housing administration had to have a discussion with me on my “trans issue.” They told me during that conversation that I could live on campus if I lived in a male dorm, and they said I would probably need to dress as a male.

Ever since getting involved in politics in 2012, I stayed involved because I felt that it was an important endeavor. Therefore, I became more active within the local party and learned more about Iowa politics, my new home. I stayed involved in Nebraska as well, where several Nebraska citizens were interested in fighting for second parent adoption.

It was in the winter of 2012, and I worked with these residents who did not have the ability to secure their families through second parent adoption or join adoption in their state. After we had done extensive research, we began working with Nebraska State Senator Sara Howard (District 9) to introduce a bill in the state legislature.

photo (1)Senator Howard introduced LB380 in February 2013 to correct Nebraska law. I then ran a grassroots campaign for the bill that consisted of an online petition, emails, and calls to State Senators. And I organized postcard making parties in several cities throughout eastern Nebraska, which was sponsored by MoveOn.org. Unfortunately, the bill did die that session, but Sen. Howard continues to fight for families in the state legislature.

While, I was working on the second-parent adoption bill, I was the field director of Forward Equality. The organization was formed by myself, several friends of mine including a former professor of mine. Forward Equality worked on progressive issues ranging from workers’ rights to civil rights. I worked (non-paid) at Forward Equality from April 2010 to April 2014 when it dissolved.

Chapter 5

As I said, I continued to be involved in the Iowa Democratic Party. I was elected to serve as the Pottawattamie County Affirmative Action Chair, and I served from February 2014 to October 2015.

11391246_981335545240787_107062442060574773_nAs the Affirmative Action chair, I organized an Affirmative Action Committee in Pottawattamie County for the County Democrats. We worked to ensure that our party was following the Democratic Party’s rules and regulations on the Americans with Disabilities Act of 1990 and their diversity requirements. This included organizing our involvement in several Pottawattamie County events such as Celebrate Council Bluffs and Heartland Pride LGBTQIA Parade and Festival. We also assisted in ensuring that the Pottawattamie County 2016 Caucus locations were ADA accessible to the best of our abilities, and we worked to bring those who historically felt unwelcome back into the party.

Moving forward, I have been involved in the 2016 Democratic presidential primary. I supported Senator Bernie Sanders for President, and I first met him back in September 2014 at an event he was speaking at in Des Moines, Iowa.

From that moment on I knew that he was a person that I was willing to fight for and put in long hours campaigning for. Sen. Sanders wasn’t running for president at that moment, though. He was only considering it. I decided that I had to work to get him to run. Thus, I volunteered with the Run Bernie Run campaign to convince the Senator to run for President as a Democrat.

On May 26, 2015, Sen. Bernie Sanders surprised many people including myself by announcing that he was indeed running for president and that he was going to run as a Democrat. I knew at that moment that I had to learn how I could help him while living in Council Bluffs, Iowa. However, I was still the Affirmative Action Chair, and I was forced to make a choice. I had to decide if I wanted to throw my full public support behind him.

The decision was thrust upon me the last week of June when I received a call by the Sanders campaign asking me if I would be interested in introducing the Senator at his town hall in Council Bluffs on July 3rd. I felt overwhelmed with excitement and terror. I have never spoken publicly to over 2,000 people. Thus, my first response to the staffer who called me was to give me some time to think about it. I said this even though in my heart I was screaming to go and do this.

On July 3, 2015, I gave one of the first speeches kicking off the Bernie Sanders campaign in Iowa. I was nervous, but I did my job and did it well for Bernie. That day forward, I began volunteering for the Senator. I did this for his campaign for months until December when I was hired on to the campaign as an Organizing Fellow. I was officially on the Bernie Sanders campaign payroll.

Introducing Sen. Sanders
Introducing Sen. Sanders

I was an OF for two months before I was promoted Field Organizer. I that position, I recruited managed and trained volunteer. I built and led several volunteer canvass and phone banks.

14102677_10153641460691923_3415136486597262791_nOn the campaign, I worked in Iowa and Nebraska on their caucuses. While in Nebraska, my turf included Lincoln but I also knew people in three other counties. Thus, I helped to organize them as well. Two of the three counties went for Bernie.

After the Nebraska caucuses, I was sent back to Iowa to work on our county conventions making sure that Sen. Bernie Sanders got a fair representation by having all his delegates show up.

Between working on the Iowa conventions, I was sent to Kansas to help organize the campaign’s participation at their state district conventions. Afterward, I went back to Iowa to work on the district conventions. Nonetheless, I was sent to Colorado to assist with organizing for their State Convention. In Colorado, I helped in several ways including monitoring the official ballots and observing the counting of those ballots. I also signed off on the initial hand count of the official ballots as the Sanders, campaign staffer.

I am proud to have worked for Senator Bernie Sanders and voted for him in the Iowa caucuses. I worked for him as an FO from February 2016 to May 3rd, 2016. Nonetheless, I was not finished working for and representing the movement for a progressive future and the political revolution started by the Senator. At the 3rd Congressional District convention, I ran for national delegate to represent Iowa at the Democratic National Convention. I did not win enough votes to go.

Later at the State Convention, I ran for Democratic National Committee member to represent the movement of progressive voices and the youth voice of Iowa. I won a significant number of votes to make me a strong challenger against the party establishment. Unfortunately, I did fail to gain a majority of the votes. Moreover, we did show the establishment that their politics are no longer what many in the party want and they should begin to listen to us otherwise, they may lose their power.

Today, I am living my life. I am out and open about who I am. This is who I am, a human being who has a tremendous passion for making this world a better place for all. I am a person who lives with cystinosis and who is a transgender woman. I am a sexual assault survivor, a human rights activist, a feminist, a student, and a fighter.

This is my story, and it continues.