Intersex Awareness

 

Written by Kelsey Chieko Babb for AROMidwifery Blog

As we approach Intersex Awareness Day observed on October 26th, I felt compelled to contribute a post highlighting some of the excellent education out there that aims to increase visibility of intersex folks, as well as speak to the campaign to End Intersex Surgeries. Intersex people are those born with a range of biological sex characteristics that may not correspond to being distinctively male or distinctively female (4Intersex, 2018). The Association of Ontario Midwives (2018) reports, “people with intersex traits are a diverse group that face discrimination and often experience trauma when engaging with health care providers, beginning in infancy.”

Historically, cosmetic genital surgeries were performed before 18 months of age for the perceived benefits of early gender assignment (Intersex Society of North America, n.d.). Intersex children were generally not made aware of their condition and their medical histories were withheld from them by their doctors. Intersex treatments and surgeries in this manner are not only an inappropriate and unethical medical practice, it is an infringement on the child’s right to bodily autonomy. According to the United Nations, carrying out these procedures without consent violates human rights.

The United Nations states medically unnecessary genital surgeries should not be performed in light of the many serious, negative impacts they pose on children. The lasting and irreversible nature of repeated surgeries and treatment to intersex children can cause permanent infertility and lifelong pain, scarring, incontinence, loss of sexual sensation, and psychological trauma (United Nations, 2018). Conformation to the gender binary is not a basis for subjecting invasive procedures on otherwise healthy intersex children.

Many medical associations, such as The American Academy of Family Physicians (AAFP) have taken a firm stance against unnecessary intersex surgeries. Their policy reads, “scientific evidence does not support the notion that variant genitalia confer a greater risk of psychosocial problems” (AAFP, 2018). Unfortunately, even the most research based recommendations don’t always make it into current medical practices right away.

Where should midwives stand on these important issues regarding respect for bodily diversity? I believe that just as midwives safeguard and advocate for the rights of birthing people, midwives must also position themselves to advocate for intersex child autonomy. Midwives, as the baby’s primary health care provider, perform the newborn exam and care for the first six weeks of life. Midwives have a role in the identification of a visibly intersex newborn in their care. Therefore, they can hold a great deal of influence by simply addressing the misconceptions with parents, holding space for emotional processes, and further discussing the recommendations for care. Midwifery providers are well poised to help families navigate informed decision making, participate in medical consults, and make necessary referrals for the care of an intersex baby.

“Intersex babies are beautiful just the way they are”
-United Nations

Please consider showing your support by signing a petition to End Intersex Surgery at Lurie Children’s Hospital in Chicago!

 

Learn More Here! Resources for Intersex Education
InterACT Advocates for Intersex Youth
Intersex Justice Project
#4Intersex
Human Rights Watch and interACT Intersex Feature Video
United Nations Free & Equal

 

Resources for Article:
American Academy of Family Physicians. (2018). Genital surgeries in intersex children. Retrieved from https://www.aafp.org/about/policies/all/genital-surgeries-intersexchildren.

Association of Ontario Midwives. (2018). AOM position statement on intersex child autonomy. Retrieved from https://www.ontariomidwives.ca/aom-position-statement-intersex-child-autonomy

Intersex Society of North America. (n.d.) What’s wrong with the way intersex has traditionally been treated? Retrieved from http://www.isna.org/faq/concealment

United Nations Free & Equal. (2018). United nations for intersex awareness. Retrieved from https://www.unfe.org/intersex-awareness/

4Intersex. (2018). Intersex 101: Everything you need to know. Retrieved from http://4intersex.org/wp-content/uploads/2018/07/4intersex-101.pdf

Health care in the US’ biggest colony

By Tamara Trinidad-Gonzalez, Student Midwife

First, I must confess that making this post has taken longer in time and energy than I had anticipated. Writing about this subject and all its layers is a huge trigger of all the frustrations that living in a colony entails.  Pointing out one preexisting factor of why the care system in Puerto Rico has been so inefficient is not that easy as there is no such thing as one factor. This is more a cascade of effects, in fact, a very complex one than an isolated situation. I will try my best to explain it.

All this inefficiency goes back to the origins of our colonial politic situation (starting in 1898), which opens the biggest gate for Puerto Rico to not being treated equal as the other US territories and jurisdictions. In addition to this, the predominant political corruption for decades, have been a fertile ground to make this a major disaster. You may have heard already through the media that there is a huge, and unfair $73 billion debt that Puerto Ricans are being blamed for. Economists keep studying this socio-economic issue and it is evident that the colonial control over the economy of Puerto Rico has contributed to create this crisis. This crisis is affecting the daily quality of lives of Puerto Rican’s especially when it comes to educations and health. Alvarez and Goodnough (2015) emphasize that the disparity of federal fund is responsible for $25 billion of the total debt because the government of Puerto Rico was forced to borrow money to be able to keep the Medicaid program running. They also explain in this article that the misery of Puerto Rico’s health care began in the late 60’s with the initiation of the Managed Care health system and the Medicaid Cap placed by the U.S. Congress for all of its territories. The managed care health system in Puerto Rico has proven to be very ineffective for decades. This type of health care plan only works in favor of the insurance companies and not to benefit the people nor the health care providers.

There is a huge disparity of federal funding available for Puerto Rico in comparison to what is available to the rest of the US jurisdictions and territories.  The federal funding and commonwealth funding need to be equally paired, but the Commonwealth pocket does not have the capacity to pair sufficient amounts so, substantially less amounts of funding are given to Puerto Rico. The problem is that in Puerto Rico, more than 60% of its residents (which used to be 3.5 million people before Hurricane Maria), receive Medicare or Medicaid. Thus, the funding allocated is just not enough to properly care for the health of people. Alvarez and Goodnoug (2015) make a comparison of how much funding is given to two other states equal in population, but wealthier than Puerto Rico, and I created this table to see it better.

State/ Jurisdiction	Population	Medicaid funding/year
Puerto Rico	3.5 million	$373 million
Oklahoma	3.49 million	$3 billion
Mississippi	3 million	$3.6 billion

Because of this situation, we (Puerto Ricans) grow accustomed to hearing of doctors leaving the island motivated for better income and work conditions. There are great physicians in Puerto Rico (PR), so they are being offered an income that is 3 or 4 times what they are earning, with moving expenses covered, health insurance, vacations and even with their liability insurance paid. To have a clearer idea of the magnitude of this problem, an article from 2016, a year before hurricane Maria, was already revealing the dangerous migration of Puerto Rican physicians to the mainland. From 2006 to 2016, around 5,000 physicians had stopped working in PR. By the summer of 2016, there were only 9,000 physicians with active licenses. And with a population of 3.5 million people, this meant having like 5 doctors for every 2,000 people. The chaos that this causes in the daily lives of Puerto Ricans is very present and evident.  Some examples of this is when patients must wait many months to have an appointment with a specialist, or when someone that is sick, does not get treated for something simple, and then dies; or when there is an urge for a treatment and people opt to travel to the US to get the needed treatment.

If this already sounded like a shortage and terrible health conditions, after hurricane Maria, a massive amount doctors left the island, abandoned their practices and their patients and many hospitals closed. This includes OBs which left many women without adequate prenatal care. Although the midwives stepped in to help as they could, they lack the resources to help everyone as they would like and deserve.

In conclusion, although we pay the same Medicare and Social Security taxes as the rest of the US, we are not treated equally. All this produces an unbalanced health system that is not fair for the people nor for the health providers that are compromising their humanity and their Hippocratic Oath.

References:

Alvarez, L. & Goodnough, A. (2015). Puerto Ricans Brace for Crisis in Health Care. Accessed online at https://www.nytimes.com/2015/08/03/us/health-providers-brace-for-more-cuts-to-medicare-in-puerto-rico.html?_r=0

Bodenheimer, T. & Grumbach, K. (2012). Understanding Health Policy: A Clinical Approach, 6th Edition. McGraw-Hill, New York, NY.

GFR Media (2016). Peligrosa fuga de miles de médicos. Retrieved from https://www.elnuevodia.com/noticias/locales/nota/peligrosafugademilesdemedicos-2225024/

Written by Tamara Trinidad-Gonzalez, Student Midwife at Bastyr University originally for a class in the Professional Issues series: Health Care Systems and Health Policy

Racial Disparities Persist

Despite the national Healthy People objectives established every ten years for the last three decades by the Office of Disease Prevention and Health Promotion, maternal and infant health indicators in this country continue to demonstrate a significant need for improvement, particularly among racial and ethnic minorities (Mathews & MacDorman, 2006).  In their call to action to the public health profession, Garcia and Sharif (2015) commented that “the health consequences of living in a racially stratified society are illustrated by a myriad of health outcomes that systematically occur along racial lines, such as disproportionately higher rates of infant mortality” (p. e28).

Two areas of concern, in particular, have been identified as leading health indicators with regard to maternal and infant health in the US: all infant deaths and total preterm live births.  These two health indicators, in addition to many others, provide clear examples of the health disparities faced by people of color in the US.  The rate of infant deaths (within the first year of life) is more than doubled for black or African American babies when compared to white infants (10.8 per 1,000 vs 5.1 per 1,000 in 2013).  Infants of persons identified as American Indian or Alaska Native are also disproportionately affected (7.6 deaths/1,000 live births in 2013) (Mathews & MacDorman, 2006).  While overall infant deaths have been decreasing, the health care disparities outlined above have persisted since at least 2006, the earliest year analysis by race/ethnicity is provided publicly by HealthyPeople.gov.  Preterm birth rates (before 37 completed weeks gestation) are also consistently found to be higher for mothers who are black or African American (16.0%), American Indian or Alaska Native (13.1%), and Hispanic or Latina (11.3%) when compared to white mothers (10.5%) in the US  (data from 2013).  While the causes of health care disparities and inequities are multifactorial, racial disparities are a well-documented factor.

NOTE: The phrase ‘maternal and infant health’ is used above due to its widespread use and recognition in public health literature.  The use of this phrase is not intended to exclude or ignore the health issues faced by transgender and genderqueer persons who may not identify as mothers.

References:

García, J., & Sharif, M. Z. (2015). Black Lives Matter: A commentary on racism and public health. American Journal of Public Health, 105(8), e27-e30. doi://10.2105/AJPH.2015.302706

Mathews T. J., & MacDorman M. F. (2010). Infant mortality statistics from the 2006 period linked birth/infant death data set. National Vital Statistics Report, 58:17, 1-31. Hyattsville, MD: National Center for Health Statistics. Available from: https://www.researchgate.net/publication/46146499_Infant_mortality_statistics_from_the_2006_period_linked_birthinfant_death_data_set .

If All Lives Really Mattered

The main strand of the alternative birth movement in the US which has been lead primarily by white, middle class women since the 1970s often conceptualizes their work as a pursuit of liberty and happiness.  Publications and participants characterize the movement as ensuring a woman’s right to an empowering pregnancy and birth experience.  The concepts of one’s rights are inexorably tied to notions of liberty, but much like the historical roots of freedom (and lack thereof based on race and gender) in our country, rights have been granted by the powerful only to those deemed fully human and deserving of happiness.  Happiness and rights are permitted by the systems of power currently in place only in forms still confined within the status quo.

Oparah and Bonaparte (2016) point out the ways in which the birthing consumer’s right to empowerment narrative has emerged and succeeded in public discourse precisely because it doesn’t challenge the deeper social and economic forces at work which serve to subjugate and ignore the most vulnerable pregnant people (15).  Indeed they argue that “legislators opposed to feminism…and to left-wing countercultural tendencies have found it possible to support the consumer right of (white, middle-class) mothers to ‘purchase’ the birth experience they desire”  (14).   

Empowerment is presumed by many in the modern white, middle class midwifery movement to be a desirable goal leading to happiness and therefore to be pursued in the name of all women.  The tendency in the second-wave feminist movement to claim to speak for all women while not taking “black women’s concerns seriously” (13) has emerged throughout the movement for reproductive rights.  In 2003, the Feminist Majority Foundation and others agreed to change the name of the protest march they were planning in response to criticisms from diverse stakeholders that the movement needs to broaden its perspectives and goals.  Black women and others on the margins, it was argued, are not available to simply protest for their right to safe abortion.  Instead, the diverse organizations courted wanted recognition that they are literally fighting for women’s lives.  As a result of the broad coalition formed, the March for Women’s Lives (2004) was one of the largest protests of all time in Washington, DC.  I see this example as illustrative of the ways in which the birth justice movement is more about life than about liberty and happiness.  Interestingly, life is the banner taken up by the inspiring present day grassroots movement Black Lives Matter.  Of course this second Civil Rights movement is also about liberty and happiness (in the form of dignity and respect), but who has time to espouse liberty when you and your loved ones are so busy fighting for your lives.    

An ignorant response to the Black Lives Matter movement has been “#alllivesmatter.”  If “all lives matter”ed as much as the lives of white wealthy people, particularly men, then the health care disparities in the US based on race could not possibly exist to the extent that they do.  Reforms to the US healthcare system have consistently benefited racial and ethnic minorities less than their white counterparts and this trend continues today.  US statistics on maternal and infant mortality and morbidity demonstrate that babies and women, especially black and brown babies and women, do not fare nearly as well as whites.  While the US healthcare system is in many ways failing women and infants in general when compared to other developed countries, women and babies of color are dying at alarmingly higher rates than white women and babies.  The statistics on which my above claims rest have been around since the previous century.  Despite awareness of health care disparities and social determinants of health in some sectors of the US health care non-system, meaningful changes that affect peoples’ lives on the ground have been slow to develop.  

So what do we do with this information?  Where do we go from here?  Visit our blog post titled Plugging Into this Important Work

Reference:

Oparah, J. C., & Bonaparte, A. D. (Eds.). (2015). Birthing Justice: Black Women, Pregnancy, and Childbirth. Routledge.

http://www.blackwomenbirthingjustice.org

Infant Mortality Awareness Campaign

by Jessica Roach on Sunday, September 30, 2012 at 7:14pm
In what is the final day of September and the end of the Infant Mortality Awareness Campaign, I am compelled to write down these thoughts and send them around. I am often vocal about what I believe to be my truths, with some quiet time in between. Speak when it is necessary, reserve your energy for when it is time.

I am the mother of a pre-term, low birth weight baby and the Godmother of one as well. I have held a baby gone too soon born at 32 weeks and had a nephew that didn’t see his first year. If we all look at our families, we see that most of us (1 in 3) have a baby that is of a “statistic” in our lives. It has become so much a part of our norm. That is a statement, not a question, because I do not have any. What I have, is the need to have the real discussion, rather than the politically correct normative blah blah that discusses us and our babies as being “Minority Health Disparities” for the sake of framing language to solicit more funding to “examine” and “prevent” the problem. Do not mistake me here, there is a great deal of good work being done to raise awareness and work towards a solution. I am simply saying, we are still dancing around the core of the issues most of the time.

Let me be clear, because we do not have time for anything else, it is Women of Color, particularly African- American and Native American, that are most affected. I do not believe this is by chance, nor do I believe it should ever be allowed to be discussed by a healthcare practitioner as a matter of fact in the first appointments of pregnancy. It starts to formulate our stories for us, which creates a physiological stress response from the beginning of fetal development. So imagine how our babies feel inside of us. It should never be a “therefore” in risk factors.

Time and time again, it is shown that even when the playing field is leveled and issues such as economics or access to care are removed as variables, our babies are still affected at a disproportionate rate. So what is left? Why is this happening? I have my thoughts and we have the research that backs those thoughts up….and it is the uncomfortable conversation that most are unwilling to have.

I have said it before and I will say it again, this is not about the need for education, but rather the lack acknowledgement of the complete dismantling of our values and customs in order to control mass populations. It is the realities that our “race” is automatically a check box on a form that puts us as a risk factor. Think about that for a minute, being called a risk factor. How does that equate to appropriate support and care from the beginning of pregnancy?

I do not claim to have the answers, no one of us does. It is part of the problem. It takes a village, a core group of support, to raise a child, how could it not be the same in growing one. We do not stand as a singular entity, rather as one of the many cells that create the whole of the being. We are interconnected on multiple levels, the human body is reflective of life as a whole. The social constructs we use to define, are also used to oppress, and if mamas have to start their journeys with their child fighting oppression, their energy is being refocused in a manner that does not allow for healthy birth and birth outcomes. If you want to have a conversation and start to answer the question “why?”, start talking about the atmosphere of colonialism and systemic institutional racism, discuss the lack of trust we have in a healthcare system that treats us as a statistic rather than a human being. Get to the core of the conversation, let us sit at the table, rather than giving advice from outside of it. Mostly, take responsibility to learn for yourself, because it is a distraction from our very survival to spend the time and energy educating.

Tomorrow, is October 1st….and our babies will still be born at lower birth weights and too soon….and many will not see their first year birthday. EVERY day is an awareness day, until our story has changed. The work will not stop for any of us after today. It will not stop until the context of the conversation changes and we are able to tell our stories and dictate our realities vs allow anyone else to define.

So when you wake up tomorrow, remember that being aware is a 24/7. Stay woke, because there is no time to sleep on this, or to wait until next September to have the conversation. Keep having them, until someone is sick and tired enough of hearing it that they will work to change it. Be the solution, rather than part of the problem. Hug a mother, hold a baby, never take either of those two for granted…and keep doing the WORK

For Jaden, Malcolm, and Hendrix (R.I.P)