Nebraska Medical Center and the Dominant Narrative

I live with a very rare genetic condition called cystinosis which slowly destroys my organs including the eyes, kidneys, liver, muscles, and brain. Because of this, I needed a kidney transplant in 2011.

At the time, I lived in Republican-controlled Nebraska where I went to the Nebraska Medical Center to get the transplant. However, the dominant narrative got in the way. This narrative says that society does not need to treat transgender people with dignity and respect.

On several occasions, while sitting in the waiting room at the Nebraska Medical Center Holly Fox, the transplant nurse coordinator would call my name. Instead of calling me by the name I identify with or the gender pronouns I prefer she called me Michael and Mr. Covington. Many of the staff there fought with me over their issue with the dominant narrative that says those who are different do not deserve to be treated as a human being. They even made excuses for their behavior and they claimed that it was illegal for them to use my preferred name and pronouns.

There was little for me to do because I accepted the dominant narrative and let them demean me.

The dominant narrative led to me not fighting when the Nebraska Medical Center staff treated me like shit and refused to do the kidney transplant. They even pretended to get ready for the surgery by actually scheduling it and having me go through all of the pre-operative appointments. Then at the last minute, they canceled the surgery. All of this happened even though I had a living donor ready to do the transplant. All they needed to do was perform the damn surgery.

These medical professionals obeyed the dominant narrative that said I am not worthy of life.

Because I did not get the treatment that I needed I was forced to have a less effective treatment that did not benefit me and in the long run hurt me.

Thus, because I did not get the transplant I needed I was forced to go on dialysis to extend my life. And because I did not get the transplant several complications occurred that was 100 percent preventable.

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I had many surgeries that I did not need. Some of the surgeries were dialysis catheters that were placed in my chest for access to perform dialysis. I experienced many complications that led to me going to the hospital and having even more procedures. It led to needing to switch to another form of dialysis which meant more surgeries.

Everything I went through for three years was 100 percent preventable. None of this benefited me and I could have died waiting for the transplant.

Because of the medications, surgeries, and dialysis, years may have been cut off my life.

Who benefited from this and from me accepting the dominant narrative? The hospital, the medical supply companies, the pharmaceutical companies, the insurance companies, and everyone who made a profit off my suffering. These people and institutions made hundreds of thousands of dollars off the unnecessary medical procedures and medications.

This happened because of the dominant narrative and because I and others were not fighting it.

Nevertheless, I have the power to change this and so do you. Together we can win the fight for universal health care as a human right and we can win basic human rights for all people regardless of your gender identity or gender expression.

Take action now! 

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Problem Facing America: Politics are not focused around Young Americans

In the United States, our politics on both sides of the aisle is not on the side of young Americans. Republicans claim the only way to grow the economy and secure a future for young Americans is to cut our domestic spending programs. Democrats claim the only way to grow the economy and secure the future for young Americans is to continue the same old policies pushed forth again and again. In the end, everything stays the same.

2015-02-18-EarningsbyLifeCycleHere’s the facts from the past 40 years via the Social Security Administration (SSA). SSA found that a typical employee, has the largest income gains between the ages of 25 and 35. However, the unemployment rate of 18 and 34 years old peaked at more than 13% in 2010 (doesn’t include underemployment or discouraged workers). While the average income increase for median earners fell to zero between the ages of 35 and 55. Finally, they found that incomes decline (“negative growth”) between ages 45 and 55.

During the recession, lower-wage industries constituted 22% of losses, but 44% recovery growth and higher-wage industries constituted 41% of recession losses, however only 30% of recovery growth, noted by the National Employment Law Project.  this caused an economic and perhaps even social crisis for young Americans are trying to enter or attempt to enter the workforce. Many of these young Americans are trying to get their first job to use their money to sustain themselves as they face the many challenges they have thrust upon them once they graduate high school. Many of them even use these jobs to help pay for their own education or to feed themselves while they are enrolled in college.

Now, they are not getting these jobs. Instead they are going to the people who before the recession were in middle-wage and higher-wage industries. These were people who had already made a life for themselves in many cases. Leading to young Americans with no avenue to work to start their lives to those who had good jobs now taking the jobs that use to go to young Americans just starting out.

Now, looking specifically at the jobs that were lost during the recession, Pew Research Center made some great points. the largest declines were in specialty trade contractors, construction 319, 800 jobs and local government, education 266,800 jobs. The largest gains have been in health care 1,481,400 jobs and food services and drinking places 1,385,400 jobs. Looking at these numbers you may notice that the second largest growing industry post-recession is also one of the industries that has the lowest pay and the least benefits for their employees.

2015-02-18-WhoOwestheMostAnother striking statistic, is the total amount of student debt owed, $1.3 trillion. Even further, according to the National Center for Education Statistics, the average amount owed for each graduate has risen from less than $10,000 in 1993 to more than $30,000 in 2013. With the bottom 25% of households owing 58% of student debt and the top 10% owing only 3%, according to the Pew Research Center.

Republican Message:

The new Congress is controlled by the Republican Party (GOP) and they could act on these issues and take meaningful actions. Instead, they seem to be focused on repealing Obamacare (ACA), rollback of immigration reform, and destroy agencies that protect the environment, consumers, workers, and taxpayers.

20141108_gdm333_10Specifically, on immigration the U.S. House took a vote of 236-191 on funding the Department of Homeland Security to February 27, until President Obama reverses his executive order on undocumented immigrants. The vote was poised at killing the President’s effort to enforce policies that limited deportations of people who aren’t criminals or serial immigration violators. One amendment to that bill even went as far as ending the Deferred Action for Childhood Arrivals (DACA) program. DACA stopped over 600,000 young undocumented immigrants from being deported and allowed them to work legally.

Progressive Confront:

Progressives have a plan to confront the Republican’s and the Democrat’s standard. The progressive plan is to regulate Wall Street, transform the U.S. global tax and trade policies (oppose TTP), enforce a progressive tax rate, curb perverse CEO compensation policies, revive anti-trust, equal pay for equal work, raise the minimum wage, paid sick leave, free community college (President Obama’s plan), 21st century infrastructure (President Obama’s plan), end the outrageous amounts of money in politics (Citizens United), and take advantage of the Green Energy Industrial Revolution.

international-maternity-leave-timeline-2013The plan includes supporting progressive legislators. Thus, people who disagree with the status quo should stand with U.S. Senators taking the lead on these policies such as Sen. Sherrod Brown, Sen. Jeff Merkly, Sen. Bernie Sanders, Sen. Elizabeth Warren. It also means standing with the Congressional Progressive Caucus in the U.S. House, who are driving the same ideas.

Fundamental change comes only when the oppressed make it impossible to sustain the old order. – Robert Borosage, Campaign for America’s Future

In Mika’s Opinion:

Young Americans are our future, thus politics needs to take a major turn towards that which will benefit them. Right now, young Americans are turned off by both political parties.

Why? Could it be that both political parties have not spent much time focusing on the needs of young Americans? Could it be that both political parties are stuck in their same old ways, pushing their same old proposals?

This is why I believe in the progressive plan, the plan for our future, that includes and focuses on young Americans. That recognizes the need to take a turn and make changes. The plan includes some of the old proposals that are still relevant for today but recognizes that we are in the 21st century and need 21st century solutions. The progressive plan even will tackle social issues that many young Americans want to see dealt with. Many of these issues are not even seen as issues by many young Americans but are for older Americans and still are being debated within the two major political parties, which also turns off young Americans

It’s time we realize that immigration isn’t a side issue, it’s a national priority.marriage_equaltiy_3_0

It’s time we realize that women’s issues are not side issues but a national priority.

It’s time we realize that lesbian, gay, bisexual, transgender, queer, intersex, and asexual (LGBTQIA) rights are not side issues but a national priority. 

 

*Source: Campaign for America’s Future*

*Source: Politico*

 

I support HF 65, the Iowa Death with Dignity Act

10418868_898594466834939_2793299234189931894_nIn many states, including Iowa a person with a terminal disease does not have the right to decide their own death. I believe it is immoral and wrong that these people do not have this right. This is important to me because I have an incurable fatal disease called nephropathic cystinosis, there is only one treatment, and eventually I will progress to a state where my body cannot take any more and I die.

This is why I support the Iowa Death with Dignity Act, House File 65.

Nephropathic cystinosis is the most common form of cystinosis. Although all forms of the disease affect the body similarly, the disease causes the amino acid cystine to accumulate in the cells. As the cystine accumulates in the cells, it slowly damages organs including the kidneys, liver, thyroid, eyes, muscles, and brain. Those of us with this disease appear normal at birth, however before one year of age we have excessive thirst and urination, and failure to thrive. We are smaller than others our same age and often tend to be in the lowest percentile or even off the pediatric growth chart. In addition, we have delays with walking and bearing weight.

1424547_955425467818505_3206668591736846428_nUnfortunately, cystinosis has only one treatment, cysteamine. Cysteamine slows the progression of the disease by removing the cystine from the cells. There are only two forms of cysteamine, Cystagon and Procysbi. Cystagon was approved by the Food and Drug Administration (FDA) in 1994 and must be taken every six hours every day with many side effects. Procysbi, on the other hand, was approved by the FDA in 2013 for the treatment of only nephropathic cystinosis in adults and children six years and older. Procysbi is a delayed-release form of cysteamine that must be taken every 12 hours every day with many of the similar side effects as Cystagon. For our eyes, we have only one choice, Cystaran, which was approved by the FDA in 2012. The medication must be put in the eyes, one drop in each eye every hour while awake.

1461542_843304242363962_5143102290265247608_nNevertheless, this is not a cure. Therefore, our organs fail, with the kidneys going first. Thus, another kind of treatment is indicated, kidney transplantation, which as become a standard in the treatment of cystinosis because cysteamine only slows the progression of the disease. If not treated with cysteamine, kidney failure occurs around 12 years old or younger. With cysteamine, the damage of the disease commonly leads to kidney failure by the late teens into the early twenties. Most of us will need to be placed on dialysis to keep us alive while we wait for a kidney, which causes us more pain, and suffering; sometimes death occurs while waiting for the kidney. 

Opponents claim that this bill is in violation of their moral and religious values because it is taking away life instead of supporting life. They claim that suicide is never the right or moral answer. This belief does not pertain to the bill, the bill is giving a terminally ill person who already is suffering and near death to have a choice in the manner in which that person dies. They wish to die with some dignity. This could be their religious way of ending their very intense physical suffering.

I believe forcing them down a path of pain and suffering to where they have no control is immoral.

My disease, nephropathic cystinosis is fatal. It causes pain and suffering.

We fight, I have fought, and I am fighting.

10710987_933353376692381_3075517113658853186_nHowever, when that year arrives and my family and I know that enough is enough, I would like to be secure in knowing that I will have the right to choose death with dignity instead of the current alternative. A painful death, where I have no control over my own body and its functions, where I will have tubes going in and out of my body everywhere. I have hope that there will be new discoveries in treatment and a cure, however anyone who is terminally ill should have the right to die with dignity. 

Please contact your legislator and ask them to support House File 65, the Iowa Death with Dignity Act. You can find them here: Iowa Legislature

Iowa Legislative Update: Iowans Facing Important Decisions

Iowa_Senate
Iowa Senate

This legislative session in Iowa, I have found that the Iowa Legislature is taking up some important issues. Issues ranging from updating sexual assault policies to raising the minimum wage. Iowans are faced with many important decisions to weigh in on this session. Nevertheless, there are harmful bills that have been introduced that would harm families and strip people of their civil rights.

The following are bills that I support:

Senate File 79 – Introduced by Bolkcom and Dvorsky

  • This bill would update and strengthen college sexual assault policies.
  • It would include an affirmative consent standard, meaning that consent is an act that must be affirmative, conscious, and voluntary, in terms of sexual acts. 
  • It would also update policies to include domestic violence, dating violence, and stalking.

LGBT-Teens-Equality-PetitionSenate File 31 – Introduced by McCoy

  • This bill prohibits mental health providers to engage in sexual orientation and gender expression so called “reparative” therapy for any person under the age of 18 years old.
  • It also provides disciplinary action for those mental health providers who violate this section.
  • Please sign my petition urging for the ban of Anti-LGBT reparative or conversion therapy in Iowa!

Senate File 18 – Introduced by Base

  • The bill would require employers to provide reasonable accommodations to an employee based on medical conditions related to employee’s pregnancy or childbirth.
  • It also provides penalties for discriminatory actions.

House File 71 – Introduced by Hunter, co-sponsored by Kelly, Staed, McConkey, Gaskill, Keams, T. Taylor, Smith, Lensing, Anderson, Abdul-Samad, Winckler, Wessel-Kroeschell, Oldson, Dawson, and Steckman

  • The bill would raise the minimum wage to $8.20 by January 1, 2016, $9.15 as of July 1, 2016, and $10.10 as of January 1, 2017.
  • The wage would be indexed to the same percentage as the cost-of-living increase in federal social security benefits.

House File 76 – Introduced by Hunter, co-sponsored by Anderson, Abdul-Samad, and Oldson

  • The bill would prohibit the sale or transfer of semiautomatic assault weapons

House File 65 – Introduced by Meyer, co-sponsored by Winkler, Stutsman, Mascher, Brown-Powers, Wolfe, anderson, and Wessel-Kroeschell.

  • The bill would create the Iowa Death with Dignity law, for persons who qualify.
  • The bill would only apply to an adult of legal age of 18 years old and resident of the State of Iowa.

The following are bills that I am opposed to:

tumblr_lfe0onjnTd1qbpx9nHouse File 101 – Introduced by Heartstill, co-sponsored by Holt, Salmon, Gassman, Fisher, Sheets, Kooiker, and Watts

  • The bill would prohibit county registrars from granting civil marriages licenses where both persons are the same-sex until an amendment to the Iowa Constitution defining marriage as between one man and one woman is submitted to the electorate for ratification.
  • It would also establish that the Iowa Supreme Court has no appellate jurisdiction over any civil marriage licenses in the state. 

House Joint Resolution 4 – Introduced by Heartstill, co-sponsored by Holt, Wills, Baulder, Salmon, Gassman, Fisher, Sheets, Windshilt, Baxter, Kooiker, and Watts.

  • The bill would add an amendment to the Iowa State Constitution redefining civil marriage as being only between one man and one woman. 

In addition, Republican Senators and Representatives have introduced several anti-family and anti-reproductive health bills, all of which I am opposed to.

Please be sure to visit the Iowa Legislature website to tell your Senator and Representative how you feel about these bills. Visit: Iowa Legislature

*Don’t forget to sign the petition demanding the ban on Anti-LGBT conversion therapy in Iowa: petition*!