Citation
Intersex identity and the social work practice

Material Information

Title:
Intersex identity and the social work practice
Creator:
Lynn, B. Christina
Place of Publication:
Denver, CO
Publisher:
Metropolitan State University of Denver
Publication Date:
Language:
English

Notes

Abstract:
“Intersex” refers to anyone who does not fit the typical criteria for male or female. Intersex people are an underserved and under-researched population in terms of social services. This paper is a critical literature review of the literature available to social work students which will use minority stress theory to examine issues which intersex people face at micro, mezzo, and macro levels. This paper will suggest areas for improvement in the social work profession, including investing in studies specific to the population, family and group therapy, and advocating for policy changes.

Record Information

Source Institution:
Metropolitan State University of Denver
Holding Location:
Auraria Library
Rights Management:
Copyright [name of copyright holder or Creator or Publisher as appropriate]. Permission granted to University of Colorado Denver to digitize and display this item for non-profit research and educational purposes. Any reuse of this item in excess of fair use or other copyright exemptions requires permission of the copyright holder.

Downloads

This item has the following downloads:


Full Text
Running Head: INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
1
Intersex Identity and Social Work Practice B. Christina Lynn
Metropolitan State University of Denver


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
2
Abstract
“Intersex” refers to anyone who does not fit the typical criteria for male or female. Intersex people are an underserved and under-researched population in terms of social services. This paper is a critical literature review of the literature available to social work students which will use minority stress theory to examine issues which intersex people face at micro, mezzo, and macro levels. This paper will suggest areas for improvement in the social work profession, including investing in studies specific to the population, family and group therapy, and advocating for policy changes.
Introduction
In recent decades, our society has begun to acknowledge that sex and gender are not the same concept: with sex referring to a person’s physical anatomy, chromosomes, and hormones while gender refers to a person’s identity and self-expression, as well as the expected roles and behaviors of people with that identity. The concept of a spectrum of gender identities, including non-binary identities or those who do not identify as a man or a woman, has also become more widespread. These views have become more common, but are still not the norm in our society. In response, social work has sought, through education and policy, to be more inclusive of gender identities outside the gender binary.
The National Association of Social Workers’ (NASW) Code of Ethics, a document which guides the professional practice of social workers in the United States, says social workers should seek to understand all gender identities (NASW, 2008, sec. 1.05) and prevent discrimination based on gender identity (sec. 6.04). In response, social workers have begun to conduct research and provide services for transgender people. However, sex and gender studies


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
3
is still a growing area and research on intersex identities is lacking. Intersex people are people whose genetics or physical anatomy does not fit into the medically accepted standards for male and female. As we discuss gender diversity, we also need to be inclusive of the diversity of physical sex. It was only in the late 1990’s that the social sciences began to study intersex identities and issues (Rubin, 2015). The late 1990’s was also the beginning of the intersex rights movement, which raised the question of medical treatment for intersex children. This medical treatment has been the main focus of study (Rubin, 2015), but there is little else that has been studied about the intersex population.
Intersex people face a unique form of oppression that is not being adequately addressed at this time. This oppression comes in the form of the medicalization and altering of their bodies without their consent, both their sex and gender being unrecognized by the community at large, a lack legal recognition or protection, and many other issues such as hate crimes, child abuse, and, in some areas of the world, even infanticide (Luk, 2015) based on their unique sex characteristics. Although it is not currently a documented issue in the United States, infanticide of intersex children in countries such as China and Hong Kong speaks to the widespread dehumanization of intersex people. For social workers to best serve this population, they must address this dehumanization and the lack of services available specifically for intersex people. There are opportunities for improvement in multiple areas of social work practice including social science research, work with individuals, policy advocacy, and family therapy.
Defining the Population
To discuss the intersex population, we must first establish what this term means. Intersex is somewhat of an umbrella term as it refers to many different physical conditions, each with a unique cause and effect on the person. Intersex applies to any person with a biological sex that is


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
4
not typically male or typically female; this includes atypical sex chromosomes, ambiguous genitalia, and hormonal or gonadal disorders. Intersex conditions affect the reproductive system and secondary sex characteristics and are presumed present from birth (ISNA, 2008), even if they are not be noticed until puberty or until the individual attempts to have children. It is unclear how much of the general population is intersex, as definitions and results of statistical studies vary with the most common statistics being 1.7% and 0.2% of the population (Oil, 2013). 0.2% represents how common ambiguous genitalia at birth is (Preves, 2017). While 1.7% estimates all people who fall under the umbrella of “Disorders of Sex Development” (Oil, 2013). Other estimates may include hormonal irregularities or brain patterns (Preves, 2017). The working definition I will use includes all atypical sex conditions and is typically estimated at 1.7% of the population.
The umbrella term disorders of sex development, or DSD, has become a widely used term for intersex conditions in the medical field (Reis, 2007). However many intersex people do not use this term as they do not feel they have a disorder and do not approve of the medicalizing of their bodies. Although it is not a universally held opinion, those who are against this term argue that they are different, not disordered (Davis, 2013a). One respondent in a survey conducted by sociologist and intersex activist Georgiann Davis said, “Nobody wants to be a disorder ... who wants to be a fucking disorder? ... I don’t.” (Davis, 2013a, p. 20). Another term that has historically been used for this group is hermaphroditism. This term is inaccurate scientifically, as hermaphrodite implies the ability to produce two types of gametes, both egg, and sperm (Oil, 2010). While there is debate about which term is most accurate and appropriate, groups that organize for rights for this community typically use the term “intersex.” As language can be harmful or empowering to minority groups, I will use “intersex” which appears to be


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
5
preferred by the majority of the community. Social workers should acknowledge the power associated with language and control of language.
Intersex refers to conditions of sex and not gender, but an intersex condition may also influence or dictate a person’s gender identity. Intersex is not a third sex with a single list of sex characteristics, like male and female; it is a continuum of physical attributes that vary from “typical male” to “typical female” (Oil, 2010). Still, it is important to recognize this discussion is about sex, biology, and physical anatomy more so than gender identity or expectations. Intersex people are usually assigned male or female for gender socialization and naming. Current medical standards suggest surgery for children born with ambiguous genitals, in order to make them appear more typically male or female. This surgery is referred to as Infant Genital Mutilation or IGM by the intersex community. IGM is performed for aesthetic purposes and not to solve a functional issue. I will also use this term because it helps to differentiate between surgeries performed to make a child appear more “normal” and those which are functionally necessary, such as solving a urinary tract blockage. The assigning of sex and performing IGM is known as the Hopkins model and is a primary concern for intersex rights groups (ISNA, 2008). Intersex people may identify as the sex and gender that was assigned to them, but it is not guaranteed. An intersex person could identify as a woman, an intersex woman, or simply intersex. They could also identify with a man, intersex man, or any variety of non-binary genders. In addition to these gender identities, sexual orientation is another but separate complex aspect of one’s identity. Intersex people can identify as any sexual orientation, just as they can identify as any gender identity.
As intersex refers to sex and not gender, it should not be confused with the term “transgender.” Transgender is typically defined as identifying as a gender other than the one


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
6
assigned at birth, as determined by genital anatomy. This definition does not accurately represent the experience of intersex people who may still identify with their assigned gender or their bom sex characteristics. More importantly, it is not a word the community uses for itself. While individual intersex people may view themselves as transgender, the community at large does not (IHRA, 2010). Another issue with using the terms interchangeably is associating infant genital surgery with gender-affirming surgery. A transgender person chooses gender-affirming surgery, which often leads to a better quality of life, while intersex children do not get to choose early medical intervention. The NASW says social work supports the right to self-determination, and therefore social workers should support gender-affirming surgery but fight against infant genital surgery, which is not self-determined nor functionally necessary (NASW, Code of Ethics 1.02, 2008). It is also important to note that although an intersex person may not be transgender, they may also not benefit from cisgender privilege as their sex is not recognized by the general population so they may still be misgendered and excluded from society based on their gender.
Intersex people make up approximately 1.7% of the population, with calculations varying based on which intersex conditions are included in the definition (Oil, 2010). This is one to two of every one hundred people, enough that any social worker could reasonably expect to encounter someone who is intersex in their work. However, this is not the only reason social workers need to be aware of this group. Intersex people are an oppressed group who experience a unique form of violence (ISNA, 2008) and marginalization, many of whom require mental health and family services (ISNA, 2008).
Minority Stress Theory


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
7
The theory I will be using is Minority Stress Theory; Minority Stress is a lens for viewing mental health issues and stress-related physical health issues in people with oppressed identities (Meyer, 2003). Ilan Meyer popularized the minority stress theory in his work with gay men (Meyer, 2003). Stress refers to any physical or mental strain, but minority stress theory is focusing on social stress. Social stress is pressure originating from a person’s social environment: the tension between what is expected and desirable in their social environment and what is their lived experience (Meyer, 2014). Minority stress, as a type of social stress, is caused by the social environment and its values and not the individual or their history. If a person cannot safely adapt to or cope with stressors, it can harm their physical and mental health. Stress can cause or worsen mental health and stress-related physical health conditions (Meyer, 2014).
Meyer (2003) describes three crucial aspects of minority stress: minority stress is unique, chronic, and socially based. Minority stress is unique; it is not experienced by members of the nonstigmatized group, who do not require as much adaption to meet those expectations. Minority stress is chronic because it is related to relatively stable social norms, so it will exist for a long time. Minority stress is socially based; it stems from social norms and institutions and not the individual, their life, or any biological source (Meyer, 2003). These stressors are experiences a person with an oppressed identity has because of the social stigma or beliefs surrounding their minority status. For example, intersex people are expected to identify as male or female, even if their anatomy is very different. They are also often expected to look and behave only masculine or feminine, regardless of their personal preferences or physical attributes. In this case, it is not their identity or anatomy causing them to be stressed, but the expectation that they should strictly conform to a binary system (ISNA, 2008).


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
8
Meyer (2014) breaks minority stressors into distal and proximal stressors. Distal stressors are events that are objective and wholly external. Examples of distal stressors are discriminatory laws and hate crimes. For intersex people, this includes IGM and lack of legal protection from discrimination. Proximal stressors involve the person’s internal worldview and thoughts. Examples of proximal stressors are worrying about how others will perceive them and negative feelings or beliefs about their identity.
The main distal stressor is the experience of prejudice (Meyer, 2014). Experiences of prejudice are external events, meaning words or actions from other people. Examples of these experiences are overt actions such as using slurs or physical violence, and more covert actions such as avoiding discussing an intersex person’s identity. Prejudice is a distal stressor because it is occurring outside the individual.
There are three main types of proximal stressors described by Meyer (2014); these are expectation of future prejudice, internalized stigma, and concealment. The expectation of future prejudice is the concern a person feels when they do not know how others will react or anticipate being mistreated. The anticipation of future prejudice is proximal because it is the person expecting discrimination that is causing stress (Meyer, 2003). Concealment is when a person hides their identity to avoid prejudice, which causes stress similar to the expectation of prejudice (Meyer, 2003). Finally, internalization is when a person accepts the beliefs and stereotypes that are harmful to their group (Meyer, 2014), such as an intersex person feeling ashamed of their body. People with internalized stigma believe there is a problem with themselves and their group members, rather than with the society which marginalizes them. A person may experience minority stress from multiple identities, such as a person who is intersex and also part of an oppressed racial or ethnic group (Meyer, 2014). Meyer (2014) argues that minority stress from


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
9
multiple sources has a greater effect on mental and physical health than the experience of a single minority status.
Minority stress is not the only form of stress people in these populations experience, but it adds to existing stress and makes coping with and adapting to stress more difficult. This increases the likelihood of stress-based physical and mental illnesses and stress increasing the effects of existing physical and mental illness.
In spite of all these stressors, minority people are often able to use coping skills and resilience to function day-to-day in a social setting. Resilience to stress is also a factor in mental health (Meyer, 2003). Resilience factors can be individual or community-based. Being a part of a community or group intended for that oppressed population allows a person to experience some social interaction where they are not stigmatized and seek support for stigma faced in the larger society (Meyer, 2003). An example would be gay clubs or support groups where gay people can interact with others who share their sexual identity. This can create strong community ties and empower those involved. Having access to community support has been found to be a very important resilience factor for LGB people, particularly when they had support from others of their same race or ethnicity (Meyer, 2016). Personal resilience factors are an individual’s strengths that help them cope with stress. Personal resilience factors include personality, supportive family, socioeconomic status, and other things that help to mitigate the impact of prejudice but are individual life factors and not available to all members of the group.
These resilience factors are important to strengths-based social work. Minority Stress Theory provides an understanding of how oppression impacts the wellbeing of individuals which can inform how we practice social work. The strengths perspective seeks to empower clients by identifying their resilience factors and available resources to help create realistic and positive


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
10
strategies for coping with or overcoming the problems that client has (Zastrow, 2013). Social workers using the strengths perspective would look to these resilience factors to help their client cope with minority stressors.
Current Policy
Before we can discuss improvements to current policies, we must understand what the current policies are. In this section, I will describe the current relevant laws and medical policies and how these policies impact intersex people.
Medical Interventions
Intersex bodies are highly medicalized, meaning their bodies are viewed and treated as a medical issue. They are labeled as “disorders of sexual development,” (DSD) sometimes softened to “differences,” but still being used to describe physical attributes that are considered problematic by medical standards. Even if their differences do not cause physical health issues, they are still labeled “disordered.” Intersex bodies can have unique health risks, but male and female sexes also carry unique health risks. For example, females have a higher chance of breast cancer due to higher levels of estrogen (American Cancer Society, 2014). Yet, male and female are not diagnoses, and intersex is.
Since the 1950’s the standard practice in the United States has been using surgery to “correct” the anatomy to male or female. This practice is known as the Hopkins Model as it was developed by the John Hopkins School of Medicine (ISNA, 2008). The Hopkins Model is a surgery typically performed on infants that turns ambiguous or non-standard sized genitals (See Figures 1 and 2) into “standard” size and shaped genitals for aesthetic, non-functional, purposes.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
11
If's a girl! (under 3/s") T unacceptable (surgery!) i It's a boy! (over 1") Intersex Society of North America PO Box 3070 Ann Arbor Ml 48106-3070 www.isna.org « >
TTT rrTT Tun I I I | I I I I II I | I
9 X 1 o' 2 3
| . \ \ ,' >"C ’> A '.' ■ Phall-O’Meter@
Actual scale. The above are actual current medical standards. Challenging these arbitrary standards, ISNA works to create a world free of shame, secrecy, and unwanted genital plastic surgery for children born with mixed sex anatomy.
Figure 1. A ruler visually representing the standards used to determine ambiguous genitalia. If the phallus is between three-eighths of an inch and one inch at birth, the child is considered intersex. From Triea, K. (2000). Phall-o-meter. Intersex Society of North America.
v y v ,/ v y
00 U) CD
4 5 6/7
Figure 2. Representation of the Quigley Scale. Grades two through five represent ambiguous genitalia. From Marcus, J. (2010). Quigley Scale. Copyright 2010 by Jonathan Marcus.
The Hopkins Model has been highly criticized by intersex groups, who refer to it as Infant Genital Mutilation (IGM). Other treatments and surgeries, such as removal of gonads and hormone therapy, are usually done at puberty. When done to children or adolescents, it is typically still the parents making the decision, although the child may have some input.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
12
While it is difficult to get generalizable statistics of this small, diverse, and private population, studies have shown that many intersex people are unhappy with the early-life surgery that was performed on them without their consent. A qualitative study by Morland (2008) looked at the emotional and physical impacts of IGM through interviewing adults with intersex conditions. Some report life-long health issues and pain related to the surgery (Morland, 2008). Others report self-esteem and relationship issues related to the secrecy and stigma surrounding their intersex condition (Morland, 2008). The mental and physical health of this group is ignored in favor of appearing typical. This is an example of minority stress, as social norms are being forced onto this group through surgery, which directly causes physical health problems and can lead to life-long mental and social struggles. Additionally, not all intersex people identify as the sex they are assigned during this surgery. One study used a numerical scale to measure if intersex people identified as their assigned sex and how satisfied they were living as the expected gender for that sex. Those who were surgically assigned male are more likely to be unhappy with their assigned gender (Schweizer, 2014). However, the sample size used in this study is small and self-selected, so it is hard to generalize to a larger population. This creates gender dysphoria that perhaps would not have occurred and cannot be medically treated the same after surgery on the genitals and removal of gonads. Many intersex people also express a desire not for a male or female sex, but for their own original bodies and status as intersex (Human Rights Watch, 2017).
Another issue with the Hopkins Model is that it encourages parents to keep information from the child. Intersex participants in a study reported that their parents, surgeons, and geneticists, had been secretive and refused to share information with them (Meoded-Danon, 2016). Parents are encouraged not to ask questions and keep what they do know secret from the child, with the hopes that the child will grow up a heteronormative and gender conforming man


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
13
or woman. Some are even encouraged to lie to their child about what has caused the need for medical intervention (Meoded-Danon, 2016). Intersex people, including those whose condition was not known until puberty or adulthood, report feeling that doctors are not sharing information and decision making with them (Alpert, 2017). Some parents of intersex children report being given false information by doctors. One family who participated in a study for the Human Rights Watch were told the surgery was required to prevent urinary tract infections, but when pressed found the doctor had no evidence to support this claim (Knight, 2017). Intersex people cannot make informed decisions about their own bodies or offer information about their condition to other medical professionals when needed when medical information is kept from them.
Many medical professionals have spoken out against this system, but a lack of data on children raised without surgical intervention and a lack of awareness by policymakers has prevented real change (Human Rights Watch, 2017). Social workers can use research and advocacy to bring this awareness to policymakers and hopefully lead to changes in the standard of treatment.
Exclusion
Along with the popularization of the Hopkin models, the intersex (represented by X) and unknown (represented by U) options were removed from birth certificates and other legal documentation in the 1960’s. Currently, only Washington, Oregon, California, and New York allows an “intersex” or “other” option on birth certificates and legal identification, and this change only began in 2016 (Cummings, 2017). In all other states, parents are still required to choose female (represented by F) or male (represented by M). Intersex people are, at a very basic level, erased from existence in law.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
14
Because intersex people are not a legally recognized group, they are offered very little legal protection. Chase (2004) provides a powerful example of the issues faced by intersex individuals in the legal system. Miki DiMarco was an intersex woman whose genital anatomy remained ambiguous into adulthood. In 2002, DiMarco was arrested in Wyoming for writing fraudulent checks and sentenced to jail time. Upon discovering her intersex condition, DiMarco was moved to solitary confinement for 14 months, despite presenting no risk of violence. A federal judge ruled that although there was no justified reason to move her to solitary, intersex people are not a “suspect class,” or legally protected group, and so there was no issue of equal protection under the 14th amendment (Chase, 2004). Without any protection, sex-segregated areas, such as restrooms or shelters, are not easily accessed by intersex people whose sex characteristics keep them from safely using either male or female areas. Policy must include intersex people because their exclusion leaves them vulnerable to further mistreatment and marginalization.
Micro Practice
Social work is done at three levels: micro, mezzo, and macro. Micro social work is practiced with individuals and families. Mezzo social work involves groups and communities. Macro social work is at the societal level, looking at policy and law. In this section, I will discuss the issues individual intersex people and families of intersex people face and how micro-level social work can address these issues.
Mental Health
Intersex clients may come to social workers with mental health concerns. Although there does not exist data on the needs of intersex people, it is known in other oppressed populations that the experience of oppression and minority stress can contribute to mental illness (Meyer,


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
15
2003). Transgender and gender-non-conforming (GNC) individuals are shown to have high rates of depression and anxiety associated with minority stress (Bockting, 2013). While transgender identities are not the same as intersex, this population also struggles with issues of gender identity and stigma around their physical sex. So, it is likely that intersex people likely suffer from minority stress.
IGM is the main focus of research on intersex mental health. But, it is not the only factor contributing to intersex mental health. Minority stress can be caused by other forms of prejudice and stigma as well. While there is no data on intersex people who did not experience IGM or who were not diagnosed until puberty, they would still experience minority stress and therefore may still need mental health help. The Intersex Society of North America (ISNA) used qualitative evidence from interviewing group members to suggest that all intersex patients should be provided with mental health counseling, with an emphasis on the importance of group therapy (ISNA, 2008). Group therapy has been found to be useful for transgender and GNC clients, so it is likely useful for intersex people as well.
Barriers to Service
Despite the suggestions of the Intersex Society of North America, a 2008 study found that only 15% of intersex patients and parents of intersex patients in the United States receive mental health services after diagnosis (Liedolf, 2008). This is likely due to barriers to services, such as not having access to someone trained in intersex issues. In Liedolf s (2008) study, Doctors in hospitals and pediatricians all across the United States were interviewed, and the doctors reported that while mental health services were available in 69% of the hospitals, the hospitals typically did not have anyone who was educated on intersex issues. Furthermore, the mental health services that were provided were typically not integrated with the medical services,


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
16
with emotional support coming only from the doctors with the most experience with intersex patients. One doctor said, “none of our social workers have actually counseled and [sic] intersex patient (Liedolf, 2008, p. 237)”. Unfortunately, to date, the study has not been replicated or expanded upon.
Social workers can provide for the individual needs of these clients. Much of this population requires psychological and emotional support and likely would benefit from family and/or group therapy (ISNA, 2008). Intersex people do not have access to therapy that addresses their unique situation and needs, in part because mental health practitioners, such as social workers and counselors, are not learning about intersex people as part of their standard education programs (Liedolf, 2008).
It is important for individual practitioners to seek further education on this topic so that they will have the competency to work with intersex people.
Finally, social workers do not include intersex identity and issues in their standard educational programs. All social workers should have some knowledge of this issue, because they may encounter intersex people and friends, family, or significant others of intersex people in their practice. This information should be included in courses about human behavior, development, and sex and gender. Social work programs that look at development and adolescents should include atypical puberty in order to support those experiencing it. Discussions of gender roles and gender socialization should include the unique experiences of intersex people, such as gender training. In addition, when discussing oppression based on gender, sex, and sexuality, it is important to include intersex people who are also affected by these issues (Wilchins, 2004). Social workers working with families, children, or in medical settings need to have knowledge about this population and the language used to discuss intersex conditions. This


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
17
is because they will be the ones working with children and families who have recently discovered their intersex status, either at birth or puberty. These social workers need to have the information to provide emotional support and help parents and young intersex people make informed decision (Leidolf, 2008),
Family and Relationships
Intersex conditions, due largely to the social norms surrounding sex and gender, can put stress on intersex people’s familial and intimate relationships. Familial and intimate relationships are very different from each other, but they are often grouped together in research. The fact that intersex conditions have to be disclosed and explained sets intersex people apart from others.
This difference is experienced as children learning about their bodies and later as adults in sexual relationships.
The stigma around intersex conditions impacts parent-child and sibling relationships. A study published in the Journal of Family Strengths found that the most common way for intersex people to learn about their condition is to be told by a parent who already knew (Jones, 2017). The other common ways were finding out from a doctor or records, but in both of these cases the parents often already knew and hid it from them (Jones, 2017). One participant said that her mother withheld the information even into her thirties and they she only found out by stealing doctor’s records (Jones, 2017). The participants commonly responded that their parents did not just withhold information, they also lied about why they were going to the doctor or why they had surgical scars (Jones, 2017). Many intersex people report feeling betrayed by their parents, who have been hiding or lying about this information and have permanently altered their bodies (Jones, 2017). This harms and sometimes even destroys relationships with parents.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
18
Another source of family strife and stress reported in the study was gender training; 43% of the participants also reported gender training, meaning they were pressured to present and behave according to their assigned sex. Gender training goes beyond typical gender socialization which all children experience when they learn gender roles and pronouns. Gender training includes extreme pressures to conform and to accept medical intervention to change their appearance Gender training can also include physical abuse for failure to meet gender expectations (Jones, 2017). Gender training is also commonly used on transgender or gender non-conforming children and has been shown to lower self-esteem and fail to produce the desired result of gender conformity (Langer, 2004). Intersex children are also pressured to behave and look like mature adults if puberty delay is a concern (Jones, 2017). This further harmed their relationship because they reported their parents were disappointed in them for and pressured them to grow up more quickly than other children (Jones, 2017).
However, it is also important to recognize parents often report that doctors encouraged them to lie, believed it was medically necessary, or simply did not know how to explain to the child they were intersex (Meoded-Danon, 2016). These parents are not inherently malicious; they may simply be unaware of the damage they are doing, both to the child and their relationship with the child. Parents of intersex children may choose medical intervention or strict gender training because they fear for their child. While the children’s feeling of betrayal is understandable, so is the parent’s confusion and fear when pressured by doctors.
Family therapy may be helpful to repair and strengthen these parent-child relationships (ISNA, 2008). Mental health practitioners should support and assist intersex people who desire to repair family relationships. Family therapy may benefit the family and help it to return to normal functioning after the trauma caused by the surgery and stigma of their child’s identity.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
19
Strengthen family relationships can also provide an additional source of support for coping with stress.
The other form of relationship that requires disclosure of intersex conditions is intimate, sexual relationships. Data gathered from studies in Australia found that 65% of intersex people reported that their intersex condition impacted their sexual relationships (Frank, 2017). Similar studies found about half of the intersex people surveyed were concerned about their gender identity and how potential partners would view their body (Frank, 2017). Fear of rejection based on their anatomy and fear of pain and physical discomfort during sex are common in this population. There was also concern about a lack of knowledge about the risk of pregnancy and sexually transmitted diseases for their unique conditions. (Frank, 2017) Studies on intersex intimate relationships mostly focus on heterosexual relationships. These relationships typically involved one intersex person who identified as either male or female and one non-intersex partner who identified as the other. Studies involving multiple intersex people, non-binary, or non-heterosexual intersex people are needed. These relationships could be different if the partner also experiences minority stress from their gender or sexual identity. In addition, there is not a lot of information on intersex people outside of Australia, so it is unknown if these feelings are common among intersex people in the United States.
Frameworks for Practice
Inclusive, strengths-based interventions are important for individuals dealing with minority stress. Using inclusive language and affirmative practice helps to fight stigma, and strengths-based interventions help individuals discover and build on their existing resilience
factors.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
20
The strengths perspective is a widely-used form of social work intervention.
Affirmative practice may also be a valuable framework for social workers working with this population. Affirmative practice supports the value of an individual’s identity and unique experience as equal to that of the non-oppressed identity (Crisp, 2006). Affirmative practice stresses a strengths perspective to support a person’s existing resilience to stress and validates minority identities to help fight internalized stigma (Crips, 2006). Use of affirmative practice with transgender patients has been found to improve client-therapist relationships, become comfortable with their identity, and improve their mental health to a point they no longer needed regular therapy (Applegarth, 2016). Affirmative practice may also provide these benefits to intersex patients, although it has not been studied. Again I will stress that intersex and transgender are not interchangeable and are not the same population, however, due to a lack of research on intersex individuals, we can only look at how other groups being oppressed based on sex and gender identity respond to certain treatments
Use of inclusive language in practice may also improve client-social worker relationships. Some ways to use sex-neutral language and be more inclusive are to include an intersex or other option on forms, to ask for pronouns and use the singular they when pronouns are unknown, and to avoid conflating gender and gender terminology with sex characteristics.
An example of conflating gender and sex characteristics is asking a female presenting client if they plan on becoming pregnant, rather than asking if they plan on starting a family. Asking about pregnancy implies they must have a uterus and be fertile, which is not the case for many intersex women. Through this, we give the power to define the issues facing intersex people to intersex people. Beyond ending IGM, little is known about how intersex people feel or what


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
21
services they desire from social workers. We do not know what services intersex people and their families are likely to use, because very few receive any services (Leidolf, 2008).
Mezzo Practice
Next, I will discuss community-level issues and how mezzo social work practice can address these issues. The community is a major source of support and resilience when discussing minority stress (Meyer, 2016).
Resources
Intersex people do not have access to many resources and even fewer that are specific to them. Resources are services which add to an individual or community’s resilience and ability to adapt to stress. Examples of community resources are organizations that provide education about an issue, groups for therapy or social interaction, emotional support, and advocacy groups. Social workers also connect individuals to resources that can help them to cope with life stressors, such as financial aid, education opportunities, and housing assistance.
LGBT+ or similar acronyms that focus on gender and sexual minorities often add an ‘I” for intersex. LGBT+ stands for Lesbian, Gay, Bisexual, and Transgender+, with the plus symbol seeking to include other gender and sexual minorities. I will use this acronym because LGBT is the most widely recognized and used acronym to describe this group and it includes the plus symbol to be inclusive of other sexual and gender minorities. When LGBT+ groups include an “I” for intersex, this advertises to intersex people that resources are available there for them, but often they are not. In her book on queer theory, Niki Wichins (2004) talked to gay and lesbian groups and transgender groups, which served as advocates and social support for their target group. These groups reported that intersex issues are not their issues, even though intersex


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
22
people are receiving unwanted medical treatment for the overt purpose of making them heteronormative and fit within a binary sex system. In this way, homophobia and transphobia contribute to the oppression of intersex people (Wichins, 2004). In addition, the argument behind IGM presents LGB and transgender identities as the result of a medical abnormality that could be fixed with early medical intervention, which we would expect LGBT+ groups to fight against. Wichins (2004) believes that the reason they were not addressing this issue is a matter of language; intersex people were labeled as a medical problem for doctors to solve and not an oppressed group which shared many of their members and social stigma.
Possibly as a result of this perceived lack of concern for their needs, many intersex people do not wish to be included in the LGBT+ community. Intersex Human Rights Australia (2011) explains that intersex people are often erased and forgotten when grouped in with LGBT+ people, which they believe furthers misunderstanding of intersex identity, fails to address their needs, and even appropriates their struggle. This appropriation refers to using intersex conditions as an argument against the binary ideas of gender without contributing to the needs of the intersex community (MRA, 2011).
As LGBT+ groups do not always have resources for intersex people and some intersex people do not feel that they are being included in those groups, we must look to intersex-specific groups for resources. Intersex-specific groups are few and far between and are shutting down quickly. The Intersex Society of North America closed in 2008 due to lack of funds, and several other intersex or sex variant-specific groups have closed since (Oil, 2018).
Connection with Community


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
23
Intersex people can benefit from a connection with other intersex people, as it would provide them support and advice for dealing with stress. Connection to community has been able to provide resilience for other populations dealing with minority stress (Meyer, 2016). It can also help cope with the stressors of concealing one’s identity and associated shame by allowing them to “come out,” or disclose their minority status, in a safe place (Meyer, 2016). There is a severe lack of physical space for intersex people to meet each other. So, most of this connection is made over the Internet (Frank, 2017). Using the Internet to create a community has some unique benefits. Digital interactions mean people can stay anonymous to avoid physical danger and the potential of others in their life finding out about their intersex condition and involvement in an intersex group. This anonymity allows intersex people to be more open and honest about their experiences and makes their stories available to other intersex people to read and engage with (Frank, 2017).
Social workers can, and should, become involved in creating new resources and supporting existing ones for intersex people. Mezzo level social workers may be involved with group therapy sessions, which can serve the same purpose for alleviating minority stress and connecting intersex people with a sense of community. The ISNA (2008) has used interviews with intersex adults to argue that group therapy is likely useful for this group, but there does not seem to have been trials done. Group therapy that focuses on counseling and social support can provide many benefits (Brandier, 2016). The group can be a place for intersex people to hear stories similar to their own and know they are not alone. They can express their own emotions and personal history in a setting that is considered safe, due to the inclusion of other intersex people. Group members can also get support and advice from people who have gone through similar experiences. Finally, they can feel empowered when they provide support to others in the


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
24
group (Brandler, 2016). A more education-focused group can teach skills needed to cope with the social stigma and any trauma caused by it (Brandler, 2016). These groups may also benefit family members who are dealing with their own emotions about the intersex condition and the impact of social stigma on the family. Finally, action-oriented groups may help intersex people work together to fight for their own rights, build new resources, or otherwise work together to benefit the community (Brand’er, 2016).
Social Workers as Educators
Social workers can act as educators and advocates for increased education with this population (Zastrow, 2013). This may involve educating other school or medical support staff, finding and connecting available services, advocating for new services, and management or administrative work in intersex organizations. One example of advocating for increased education is a school social worker proposing that a school add information about intersex conditions to their puberty or sex education and ensuring this information is taught in a way that does not further stigmatize the group. This would let young intersex people in that school have some idea of what is going on with their body and give them the vocabulary to ask questions of doctors, discuss concerns with their emotional supports, or disclose to friends if so desired. It may also help to fight stigma by introducing the idea to non-intersex people when they are still young.
Macro Practice
Macro-level social work looks at society and policy. This is where social workers can fight the discrimination of intersex people through advocating for changes to law and policy. According to the National Association of Social Workers (NASW), “The primary mission of the


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
25
social work profession is to enhance human well-being... with particular attention to the needs and empowerment of people who are vulnerable, oppressed, and living in poverty (2017, p. 1).” Social workers are called to end social injustices. The intersex population is experiencing social injustices that affect their mental, physical, and social well-being. Therefore, social workers should seek to alter the policies and social institutions that commit these injustices through advocacy and research.
Activism and Advocacy
Social workers use macro practice to advocate for changes to policy. Many intersex people would like the option to identify as intersex legally and encourage designating infants as intersex on birth certificates. Intersex activists believe the use of the X for intersex on birth certificates would normalize intersex conditions and discourages attempts to change children’s bodies. Forcing parents to choose from a sex binary gives the parents the implicate idea that being intersex is wrong and unacceptable and the child must be fixed (Davis, 2013b). This lack of legal recognition also leads to a lack of legal protection from discrimination, as with the case of Miki Demarco (Chase, 2004). A social worker can serve this population, by utilizing social work skills for this civil rights movement. Social workers can advocate for this group by pressuring policymakers. This can be done by petitioning, working with the media to disseminate information, planning demonstrations and protests, and mobilizing group members. Social workers can use resources management skills such as fundraising, budgeting, and grant writing, to support existing intersex rights groups (Kirst-Ashman, 2018). Social workers have performed these duties for other social movements in the past (Reisch, 2013).
Research and Utilizing Data


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
26
Social work, and the social sciences as a whole, can serve this group is through research. Intersex people are an understudied population, to the point where many social workers are completely unaware of this population. Social sciences have mostly focused on the effects of IGM and satisfaction with assigned sex, but need to encompass other areas. For example, studies are needed which include non-binary genders, those other than male or female. Most studies of intersex people have asked participants to identify as male or female and failed to account for other identities. For example, a study published in the journal Psychology & Sexuality asked if respondents were satisfied with their assigned sex. However, the phrasing did not include nonbinary genders. Female-assigned respondents who said they did not consider themselves male were written down as satisfied (Schweizer, 2014), but their comments revealed they were not. Thus, there is a lack of knowledge about how intersex people identify when given more than two options.
Research is also needed in regards to intersex people raised without medical interventions. In response to questions about IGM, some doctors have cited fears that not intervening may be worse because the experiences of intersex people who did not receive surgery have not been thoroughly tested (Knight, 2017). Qualitative data of a few personal experiences have been gathered, but the doctors interviewed desired more quantitative data in order to accept it as a valid alternative (Knight, 2017). Intersex people who do not have medical interventions as children because their condition is not known until puberty are also excluded from research which largely focuses on IGM. Although they make up a large portion of the community, their opinions and needs are not researched at all.
Social work often considers how gender or sex influences the effectiveness of interventions and should include intersex people as a separate category to ensure they are being


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
27
given the most appropriate treatments. Although many intersex people identify as a man or woman and can typically be grouped with other men and women, studies have not been done to determine if their treatment needs are the same as other men and women. Researchers should look into this because it is possible that intersex women are being given the same treatments as non-intersex women but with different results. Both their unique biology and the minority stress they experience may influence their needs, but this has not been studied. For example, intersex people in Australia have the same high level of homelessness that is found among transgender people but is not found in non-intersex cisgender people (Jones, 2017). Therefore, in Australia, homelessness would be an area of concern with this population and should be taken into account when considering treatment needs. However, such studies have not been done in the United States to determine if this issue occurs here.
Finally, there is little data beyond statements published by intersex rights groups to determine which terms intersex people are using for themselves in the day to day life and what they wish to see available on legal records. This topic would be a good starting point because it would help set a foundation for the language social workers should use when discussing this population. It may also provide quantitative data to show policymakers how common the desire for legal recognition is, as they may be more interested in an issue that can be shown to affect many people than a few who are willing to go to court.
Conclusions and Next Steps
In order to truly serve this population, social work must be as dedicated to intersex rights as it is to another civil rights movements. Social workers can advocate for this group by being more inclusive of them in research, practice, and social work education. In social work education, intersex people should be included in areas such as human behavior and the social


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
28
environment classes, child development classes, and classes that look at sex and gender.
Chapters of the NASW can hold informational forums and continuing education options for social workers who are already practicing. Social work values, particularly respecting people’s right to self-determination and fighting discrimination, can be incorporated into policy that includes intersex people. Examples of this are advocating to end IGM but also being more inclusive in our language and personal practice.
Research is the area I was interested in when starting this project. I am still very interested in conducting research with this population if at all possible. One area that is lacking in research is including non-binary, intersex, or other options in survives. I have created a sample survey that could be used in future research to gauge interest in the “X” option for documentation, attached in Appendix A. I am interested in the terminology intersex people use for themselves, how they personally would like to be identified, and support for the “X” option for infants. If gathered, I feel this information may help to strengthen the argument for changing documentation by discovering how common support is. This could also be extended to a general population to discover how common knowledge of the issue and desire for non-binary options is. I also feel it will help future researchers to know how intersex people identify themselves before moving on to questions of efficacy of treatment or population needs. This will allow researchers to use appropriate language when conducting surveys or interviews. I feel that research on other topics involving this population, such as testing group therapies and affirmative practice specifically with intersex people or gathering demographic data about issues like homelessness and experiences of prejudice would greatly benefit this population which is largely unrecognized and we simply do not know about. Ideally, the issues of IGM and legal recognition will someday be settled and no longer be an area of focus, but social workers should keep in mind it is not the


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
29
only issue facing intersex people. Intersex people are an oppressed group who may have mental health concerns impacted by minority stress and therefore can benefit from social work. Social work is an evidence-based profession and so should seek evidence that can help us better support this population.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
30
References
Alpert, A., Cichoski, E. & Fox, D. (2017) What lesbian, gay, bisexual, transgender, queer, and intersex patients say doctors should know and do: A qualitative study, Journal of Homosexuality, 64:10, 1368-1389, DOI: 10.1080/00918369.2017.1321376
American Cancer Society. (2014). Breast cancer in men. Retrieved from
https://www.cancer.org/cancer/breast-cancer-in-men/causes-risks-prevention/risk-
factors.html
Applegarth, G. & Nuttall, J. (2016). The lived experiences of transgender people of talk therapy International Journal of Transgenderism, 77(2), pp. 66-72, DOI: 10.1080/15532739.2016.1149540
Brandler, S. & Roman, C. P. (2016). Group work: Skills and strategies for effective interventions. 3rd ed. New York, NY: Routledge Publishing.
Bockting, W. O., PhD., Miner, M. H., PhD., Romine, R. E. S., PhD., Hamilton, A., H.S.D., & Coleman, E., Ph.D. (2013). Stigma, mental health, and resilience in an online sample of the US transgender population. American Journal of Public Health, 103(5), pp. 943-951
Carpenter, M. (2016) The human rights of intersex people: addressing harmful practices and rhetoric of change, Reproductive Health Matters, 24:47, 74-84, DOI: 10.1016/ j.rhm.2016.06.003
Chase, C. (2004). “Federal judge finds Wyoming prison violated constitutional rights of intersexual prisoner.” Retrieved from http://www.isna.org/dimarco


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
31
Crisp, C., & McCave, E. (2007). Gay affirmative practice: A model for social work practice with gay, lesbian, and bisexual youth. Child and Adolescent Social Work Journal, 24(4) pp 403-421
Cummings, W. (2017). When asked about their sex, some are going with option “X.” USA Today.
Davis, G. (2013a). The power in a name: Diagnostic terminology and diverse experiences. Psychology & Sexuality, 5(1). 15-27. DOI: 10.1080/19419899.2013.831212
Davis, G., & Murphy, E. L. (2013b). Intersex bodies as states of exception: An empirical
explanation for unnecessary surgical modification. Feminist Formations, 25(2), 129
Frank, S. (2017). “Intersex and intimacy: presenting concerns about dating and intimate relationships.” Sexuality and Culture (22). 127-147.
Hall, K. Q. (2009). "Queer theory." Encyclopedia of environmental ethics and philosophy, vol. 2. 191-193.
Human rights watch. (2017). “I want to be like nature made me.” Retrieved from
https://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medicallv-
unnecessary-surgeries-intersex-children-us
Intersex Human Rights Australia. (2010). ‘ISGD’ and the appropriation of intersex. Retrieved from https://ihra.org.au/13651/isgd-and-the-appropriation-of-intersex/
Intersex Society of North America (2008). Retrieved from http://www.isna.org/faa/frequencv
Jones, T. (2017) Intersex and families: Supporting members with intersex variations. Journal of Family Strengths (17)2.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
32
Kirst-Ashman, K. K., & Hull, G. H. (2018). Understanding generalist practice. 8th ed. Boston, MA. Cengage Learning.
Knight, K. (2017). A changing paradigm: US medical provider discomfort with intersex care practices. Human Rights Watch Retrieved from
https://www.hrw.org/report/2017/10/26/changing-paradigm/us-medical-provider-discomfort-intersex-care-practices
Langer, S.J. (2004). How dresses make you mentally ill: Examining gender identity disorder in children. Child and adolescent social work journal. DOI:
10.1023/B:CASW.0000012346.80025.f7
Leidolf, E., Curran, M., & Bradford, J.(2008) Intersex mental health and social support options in pediatric endocrinology training programs, Journal of Homosexuality (54)3, pp. 233-242, DOI: 10.1080/00918360801982074
Luk, Small. (2015). “Beyond Boundaries” Retrieved from http://intersexdav.org/en/bevond-boundaries-intersex-hk-china/
MacKenzie, D., Huntington, A., & Gilmour, J. A. (2009). The experiences of people with an
intersex condition: A journey from silence to voice. Journal of Clinical Nursing, 75(12), pp. 1775-1783.
Markman, E. (2011). Gender identity disorder, the gender binary, and transgender oppression: Implications for ethical social work. Smith college studies in social work. 57(4).
Meoded-Danon, L. & Yanay, N. (2016). Intersexuality: On secret bodies and secrecy. Studies in gender and sexuality. 17(1). pp. 57-72


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
33
Meyer, I.H. (2003). Prejudice, social stress, and mental health in lesbian, gay and bisexual
populations: Conceptual issues and research evidence. Psychological Bulletin, 129, 674-697. doi: 10.1037/0033-2909.129.5.674
Meyer, I.H., Holloway, I.W., Kipke, M.D., Schrager, S. M., & Wong. C. F. (2014). Minority
stress experiences and psychological well-being: The impact of support from connection to social networks within the los angeles house and ball communities. Prevention science. 75(1). 44-55.
Meyer. I.H., Frost, M.D., & Schwartz, S. (2016). Social support networks among diverse sexual minority populations. American journal of orthopsychiatry. 86. 91-102.
Morland, F (2008). Intimate violations: Intersex and the ethics of bodily integrity. Feminism & psychology 18(3), 425-430.
National Association of Social Workers. (2017). Code of ethics.
Organization Intersex International. (2010). the terminology of intersex. Retrieved from http://oiiinternational.com/2602/terminology-intersex/
Preves, S. & Davis, G. (2017) Intersex and the social construction of sex. Contexts. 16(\). 80.
Pullen, A., Thanem, T., Tyler, M., & Wallenberg, L. (2016). Sexual politics, organizing practices: Interrogating queer theory, work, and organization. Gender, work and organization. 23.
Reis, E. (2007). Divergence or disorder? The politics of naming intersex. Perspectives in Biology and Medicine, 50(4), 535-43.
Reisch, M. (2013). “Social Movements” in Encyclopedia of Social Work. DOI:
10.1093/acrefore/9780199975839.013.366


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
34
Rubin, D. A. (2015). Provincializing intersex: US intersex activism, human rights, and transnational body politics. Frontiers, 36(3), 51-83,196.
Schweizer, K., Brunner, F., Handford, C., & Richter-Appelt, H. (2014). Gender experience and satisfaction with gender allocation in adults with diverse intersex conditions (divergences of sex development, DSD). Psychology & Sexuality, 5(1), 56-82.
Suyra, M. (2005). Beyond male and female: Poststructuralism and the spectrum of gender. International journal of transgenderism, 5(1), 3-22.
Turner, W. B. (2004). “Queer theory and queer studies” In Encyclopedia of lesbian, gay, bisexual and transgendered history in America vol. 2. 481-487.
Wichins, R. (2004). Queer theory, gender theory. Los Angeles, CA. Alyson books.
Workers, N. A. (2008). NASW Code of Ethics. Washington, DC: NASW.
Zastrow, C.H., & Kirst-Ashman, K. K. (2013) Understanding human behavior and the social environment. 9th ed. Brooks/Cole, Cengage Learning.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
35
Appendix A: Sample Survey
This sample survey was designed to collect online data about how intersex adults in the United States identify and how much support there is in the intersex community for non-binary and intersex labels on legal documentation. It was not completed due to time restraints but may serve as an example.
Due to debate about proper nomenclature, this survey will use the widely, but not universally, accepted terms “intersex” and “intersex condition.” “Intersex” will refer to anyone who does not have typical male or female sex characteristics. “Intersex condition” to refer to any condition under the medical umbrella term “disorder of sex development,” meaning atypical reproductive and sexual anatomy, including genetic, hormonal, and anatomical differences, and includes both those present at birth and those that do not become symptomatic until puberty or adulthood.
1. Do you have an intersex condition?
Yes
No
2. Do you currently live in the United States of America?
Yes
No
3. What i s your age?
Under 18 18-24 25-34 35-44 45-54 65-74 75 or older
4. Which of the following terms would you use for yourself? (one or more)


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
36
Intersex Disorder of Sex Difference of Sex Hermaphrodite Other, please specify
Development Development
5. I would support an intersex option on legal documentation
Strongly agree Somewhat No Opinion Somewhat Strongly
Agree Disagree Disagree
6. I would use an intersex option on legal documentation.
Strongly agree Somewhat No Opinion Somewhat Strongly
Agree Disagree Disagree
7. I would support a non-binary or “other” opinion on legal documentation, which could be used by people who are not intersex
Strongly agree Somewhat No Opinion Somewhat Strongly
Agree Disagree Disagree
8. I would use an “other” option on legal documentation
Strongly agree Somewhat No Opinion Somewhat Strongly
Agree Disagree Disagree
9. I would support an intersex option on birth certificates for infants
Strongly agree Somewhat No Opinion Somewhat Strongly
Agree Disagree Disagree
10. Legal Recognition as intersex is important to me.


INTERSEX IDENTITY AND SOCIAL WORK PRACTICE
37
Strongly agree Somewhat No Opinion Somewhat Strongly
Agree Disagree Disagree
11. Which of the following do you use when filling out documentation?
Male Only Female Only Intersex or Other Intersex or Other Other, please
when available but when available specify
Male when not but Female when
Available not available
12. What would a change to include an intersex option on legal documentation mean for you?
13. How would you expect a change to include an intersex option on legal documentation to effect the intersex community?
14. Do you have any other thoughts on intersex identity and gender status you would like to
share with us?


Full Text

PAGE 1

Running Head: INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 1 Intersex Identity and Social Work Practice B. Christina Lynn Metropolitan State University of Denver

PAGE 2

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 2 Abstract typical criteria for male or female. Intersex people are an underserved and under researched population in terms of social services. This paper is a critical literature review of the literature available to social work students which will use minority str ess theory to examine issues which intersex people face at micro, mezzo, and macro levels. This paper will suggest areas for improvement in the social work profession , including invest ing in studies specific to the population, family and group therapy, and advocating for policy changes. Introduction In recent decades, our society has begun to acknowledge that sex and gender are not the and hormones while gender refers to a pers expression, as well as the expected roles and behaviors of people with that identity. T he concept of a spectrum of gender identities, including non binary identities or those who do not identify as a man or a woman , has also become more widespread. These views have become more common, but are still not the norm in our society. In response, social work has sought, through education and policy, to be more inclusive of gender identities outside the gender binary. The National A ASW) Code of Ethics, a document which guides the professional practice of social workers in the United States, says social workers should seek to understand all gender identities (NASW, 2008, sec. 1.05) and prevent discrimin ation based on gender identity (sec. 6.04). In response, social workers have begun to conduct research and provide services for transgender people. However, sex and gender studies

PAGE 3

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 3 is still a growing area and research on intersex identities is lacking. Inte rsex people are people whose genetics or physical anatomy does not fit into the medically accepted standards for male and female. As we discuss gender diversity, we also need to be inclusive of the diversity of physical sex. that the social sciences began to study intersex movement, which raised the question of medical treatment for intersex children. This medical treatment has b een the main focus of study (Rubin, 2015), but there is little else that has been studied about the intersex population. Intersex people face a unique form of oppression that is not being adequately addressed at this time. This oppression comes in the for m of the medicalization and altering of their bodies without their consent, both their sex and gender being unrecognized by the community at large, a lack legal recognition or protection, and many other issues such a s hate crimes, child abuse, and, in some areas of the world, even infanticide (Luk, 2015) based on their unique sex characteristics. Although it is not currently a documented issue in the United States, infanticide of intersex children in countries such as China and Hong Kong speaks to the widespread dehumanization of intersex people. For social workers to best serve this population , they must address this dehumanization and the lack of services available specifically for intersex people. There are opportun ities for improvement in multiple areas of social work practice including social science research, work with individuals, policy advocacy, and family therapy. Defining the Population To discuss the intersex population, we must first establish what this term means . Intersex is somewhat of an umbrella term as it refers to many different physical conditions, each with a unique cause and effect on the person. Intersex applies to any person with a biological sex that is

PAGE 4

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 4 not typically male or typically female ; this includes atypical sex chromosomes, ambiguous genitalia, and hormonal or gonadal disorders. Intersex conditions affect the reproductive system and secondary sex characteristics and are presumed present from birth (ISNA, 2008), even if they are not be noticed until puberty or until the individual attempts to have children. It is unclear how much of the general population is intersex, as definitions and resul ts of statistical studies vary with the most common statistics being 1.7% and 0.2% of the popula tion (OII, 2013). 0.2% represents how common ambiguous genitalia at birth is (Preves, 2017). W hile 1.7% estimates all people who (OII, 2013) . Other estimates may include hormonal irregularities or brain patterns (Preves, 2017). The working definition I will use includes all atypical sex condition s and is typically estimated at 1.7% of the population . The umbrella term disorders of sex develop ment, or DSD, has become a widely used term for intersex conditions i n the medical field (Reis, 2007 ). However many intersex people do not use this term as they do not feel they have a disorder and do not approve of the medicalizing of their bodies. Althou gh it is not a universally held opinion, those who are against this term argue that they are different, not disordered (Davis, 2013 a ). One respondent in a survey Nobody wants to be a dis a , p. 20). Another term that has historica lly been used for this group is hermaphroditism . This term is inaccurate scientifically, as hermaphrodite implies the ability to produce two types of gametes, both egg, and sperm (OII, 2010). While there is debate about which term is most accurate and appropriate, groups that organize for rights for this community which appears to be

PAGE 5

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 5 preferred by the majority of the community. Social workers should acknowledge the power associated with language and control of language . Intersex refers to conditions of sex and not gender, but an intersex condition may also a third sex with a single list of sex characteristics, li ke male and female; it i s a continuum of physical attributes that vary from , it is important to recognize this discussion is about sex, biology, and physical anatomy more so than gender identity or expectations . Intersex peopl e are usually assigned male or female for gender socialization and naming. Current medical standards suggest surgery for children born with ambiguous genitals, in order to make them appear more typically male or female. This surgery is referred to as Infan t Genital Mutilation or IGM by the intersex community. IGM is performed for aesthetic purposes and not to solve a functional issue. I will also use this term because it helps to d ifferentiate between surgeries and those which are functionally necessary, such as solving a urinary tract blockage. The assigning of sex and performing IGM is known as the Hopkins model and is a primary concern for intersex rights groups (ISNA, 2008). Intersex people may identify as t he sex and gender that was assigned to them, but it is not guaranteed. An intersex person could identify as a woman, an intersex woman, or simply intersex. They could also identify with a man, intersex man, or a ny variety of non binary genders. In addition to these gender identities, sexual orientation is another but separate . Intersex people can identify as any sexual orientation, just as they can identify as any gender identity. As intersex refers to sex and not gender, it should not be confused with t he term Transgender is typically defined as identifying as a gender other than the one

PAGE 6

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 6 assigned at birth, as determined by genital anatomy. This definition does not accurately represent the experience of intersex people who may still identify with their assigned gender or their born sex characteristics. More importantly, it is not a word the community uses for itself. While individual intersex people may view themsel ves as transgender, the community at large does not (IHRA, 2010). Another issue with using the terms interchangeably is associating infant genital surgery with gender affirming surgery. A transgender person chooses gender affirming surgery, which often lea ds to a better quality of life, while intersex children do not get to choose early medical intervention . The NASW says social work supports the right to self determination, and therefore social workers should support gender affirming surgery but fight agai nst infant genital surgery, which is not self determined nor functionally necessary (N ASW, Code of Ethics 1.02, 2008). It is also important to note that although an intersex person may not be transgender, they may also not benefit from cisgender privilege as their sex is not recognized by the general population so they may still be misgendered and excluded from society based on their gender. Intersex people make up approximately 1.7% of the population, with calculations varying based on which intersex conditions are included in the definition (OII, 2010). This is one to two of every one hundred people, enough that any social worker could reaso nably expect to encounter someone who is intersex in their work. However, this is not the only reason social workers need to be aware of this group. Intersex people are an oppressed grou p who experience a unique form of violence (ISNA, 2008) and marginaliz ation, many of whom require mental health and family services (ISNA, 2008). Minority Stress Theory

PAGE 7

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 7 The theory I will be using is Minority Stress Theory; Minority Stress is a lens for viewing mental health issues and stress related physical health issue s in people with oppressed identities (Meyer, 2003). Ilan Meyer popularized the minority stress theory in his work with gay men (Meyer, 2003). Stress refers to any physical or mental strain, but minority stress theory is focusing on social stress . Social stress environment: the tension between what is expected and desirable in their social environment and what is their lived experience (Meyer, 2014). Minority stress, as a type of social stress , is caused by the social environment and its values and not the individual or their history. If a person cannot safely adapt to or cope with stressors, it can harm their physical and mental health. Stress can cause or worsen mental health and stress relat ed physical health conditions (Meyer, 2014). Meyer (2003) describes three crucial aspects of minority stress: minority stress is unique, chronic, and socially based. Minority stress is unique; it is not experienced by members of the nonstigmatized group, who do not require as much adaption to meet those expectations. Minority stress is chronic because it is related to relatively stable social norms , so it will exist for a long time. Minority stress is socially based ; it stems from social norms and institu tions and not the individual, their life, or any biological source (Meyer, 2003). These stressors are experiences a person with an oppressed identity has because of the social stigma or beliefs surrounding their minority status. For example, intersex peopl e are expected to identify as male or female, even if their anatomy is very different. They are also often expected to look and behave only masculine or feminine, regardless of their personal preferences or physical attributes. In this case, it is not thei r identity or anatomy causing them to be stressed, but the expectation that they should strictly conform to a binary system (ISNA, 2008) .

PAGE 8

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 8 Meyer (20 14 ) breaks minority stressors into distal and proximal stressors. Distal stressors are events that are obj ective and wholly external. Examples of distal stressors are discriminatory laws and hate crimes. For intersex people , this includes IGM and lack of legal protection from discrimination thoughts. Examples of proximal stressors are worrying about how others will perceive them and negative feelings or beliefs about their identity. The main distal stressor is the experience of prejudice (Meyer, 2014). Experiences of prejudice are external events, meaning words or actions from other people. Examples of these experiences are overt actions such as using slurs or physical violence, and m ore covert actions Prejudice is a distal stressor because it is occurring outside the individual. There are three main types of proximal stressors described by Meyer (2014); these are expectation of future prejudice, internalized stigma, and concealment. The e xpectation of future prejudice is the concern a person feels when they do not know how others will react or anticipate being mistreated. The anticipation of future prejudice is proximal beca use it is the person expecting discrimination that is causing stress (Meyer, 2003). Concealment is when a person hides their identity to avoid prejudice, which causes stress similar to the expectation of prejudice (Meyer, 2003). Finally, internalization is when a person accepts the beliefs and stereotypes that are harmful to their group (Meyer, 2014), such as an intersex person feeling ashamed of their body. People with internalized stigma believe ther e is a problem with themselves and their group members, rather than with the society which marginalizes them. A person may experience minority stress from multiple identities, such as a person who is intersex and also part of an oppressed racial or ethnic group (Meyer, 2014). Meyer (2014) argues that minority stress from

PAGE 9

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 9 multiple sources has a greater effect on mental and physical health than the experience of a single minority status. Minority stress is not the only form of stress people in these populat ions experience, but it adds to existing stress and makes coping with and adapting to stress more difficult. This increases the likelihood of stress based physical and mental illnesses and stress increasing the effects of existing physical and mental illne ss. In spite of all these stressors, minority people are often able to use coping skills and resilience to function day to day in a social setting. Resilience to stress is also a factor in mental health (Meyer, 2003). Resilience factors can be individual or community based. Being a part of a community or group intended for that oppressed population allows a person to experience some social interaction where they are not stigmatized and seek support for stigma faced in the larger society (Meyer, 2003 ). An example would be gay clubs or support groups where gay people can interact with others who share their sexual identity. This can create strong community ties and empower those involved. Having access to community support has been found to be a very impo rtant resilience factor for LGB people, particularly when they had support from others of their same race or ethnicity (Meyer, 20 16 ). strengths that help them cope with stress. Personal resilience factors inc lude personality, supportive family, socioeconomic status, and other things that help to mitigate the impact of prejudice but are individual life factors and not available to all members of the group . These resilience factors are important to strengths ba sed social work. Minority Stress Theory provides an understanding of how oppression impacts the wellbeing of individuals which can inform how we practice social work. The strengths perspective seeks to empower clients by identifying their resilience factor s and available resources to help create realistic and positive

PAGE 10

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 10 strategies for coping with or overcoming the problems that client has (Zastrow, 2013). Social workers using the strengths perspective would look to these resilience factors to help their clien t cope with minority stressors. C urrent Policy Before we can discuss improvements to current policies, we must understand what the current policies are. In this section , I will describe the current relevant laws and medical policies and how these policies impact intersex people. Medical Interventions Intersex bodies are highly medicalized, meaning their bodies are viewed and treated as a medical issue. They are labeled problematic by medical standards. Even if their differences do not cause physical health issues, they female sexes also carry unique health risks. For example, females have a higher chance of breast cancer due to higher levels of estrogen (American Cancer Society, 20 14). Yet, male and female are not diagnoses, and intersex is. developed b y the John Hopkins School of Medicine (ISNA, 2008). The Hopkins Model is a surgery typically performed on infants that turns ambiguous or non standard sized genitals (See Figures 1 and 2) aesthetic , non functional, purposes.

PAGE 11

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 11 Figure 1. A ruler visually representing the standards used to determine ambiguous genitalia. If the phallus is between three eighths of an inch and one inch at birth, the child is considered intersex. From Triea, K. (2000). P hall o meter. Intersex Society of North America. Figure 2. Representation of the Quigley Scale. Grades two through five represent ambiguous genitalia. From Marcus, J. (2010). Quigley Scale. Copyright 2010 by Jonathan Marcus. The Hopkins Model has been highly criticized by intersex groups, who refer to it as Infant Genital Mutilation ( IGM). Other treatments and surgeries, such as removal of gonads and hormone therapy, are usually done at puberty. When done to children or adolescents, it is typically still the parents making the decision, although the child may have some input.

PAGE 12

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 12 While it is difficult to get generalizable statistics of this small, diverse, and private population, studies have shown that many intersex people are unhappy with the early life surgery that was performed on them without their consent. A qualitative study by Morland (2008) looked at the emotional and physical impacts of IGM through interviewing adults with intersex conditions. Some report life long health issues and pain rel ated to the surgery (Morland, 2008). Others report self esteem and relationship issues related to the secrecy and stigma surrounding their intersex condition (Morland, 2008) . The mental and physical health of this group is ignored in favor of appearing typ ical. This is an example of minority stress, as social norms are being forced onto this group through surgery, which directly causes physical health problems and can lead to life long mental and social struggles. Additionally, not all intersex people ident ify as the sex they are assigned during this surgery. One study used a numerical scale to measure if intersex people identified as their assigned sex and how satisfied they were living as the expected gender for that sex. Those who were surgically assigned male are more likely to be unhappy with their assigned gender (Schweizer, 2014). However, the sample size used in this study is small and self selected, so it is hard to generalize to a larger population. This creates gender dysphoria that perhaps would n ot have occurred and cannot be medically treated the same after surgery on the genitals and removal of gonads. Many intersex people also express a desire not for a male or female sex, but for their own original bodies and status as intersex (Human Rights W atch, 2017). Another issue with the Hopkins Model is that it encourages parents to keep information from the child. Intersex participants in a study reported that their parents, surgeons, and geneticists, had been secretive and refused to share informatio n with them (Meoded Danon, 2016). Parents are encouraged not to ask questions and keep what they do know secret from the child, with the hopes that the child will grow up a heteronormative and gender conforming man

PAGE 13

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 13 or woman. Some are even encouraged to lie to their child about what has caused the need for medical intervention (Meoded Danon, 2016). Intersex people, including those whose condition was not known until puberty or adulthood , report feeling that doctors are not sharing information and decision ma king with them (Alpert, 2017). Some parents of intersex children report being given false information by doctors. One family who participated in a study for the Human Rights Watch were told the surgery was required to prevent urinary tract infections, but when pressed found the doctor had no evidence to support this claim (Knight, 2017). Intersex people cannot make informed decisions about their own bodies or offer information about their condition to other medical professionals when needed when medical in formation is kept from them. Many medical professionals have spoken out against this system, but a lack of data on children raised without surgical intervention and a lack of awareness by policymakers has prevented real change (Human Rights Watch, 2017 ). Social workers can use research and advocacy to bring this awareness to policymakers and hopefully lead to changes in the standard of treatment. Exclusion Along with the popularization of the Hopkin models, the intersex (represented by X) and unknown (represented by U) options were removed from birth certificates and other legal Washington, Oregon, California, and New York allows , a nd this change only began in 2016 (Cummings, 2017). In all other states, parents are still required to choose female (represented by F) or male (represented by M). Intersex people are, at a very basic level, erased f rom existence in law .

PAGE 14

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 14 Because intersex people are not a legally recognized group, they are offered very little legal protection. Chase (2004) provides a powerful example of the issues faced by intersex individuals in the legal system. Miki DiMarco was an intersex woman whose ge nital anatomy remained ambiguous into adulthood. In 2002, DiMarco was arrested in Wyoming for writing fraudulent checks and sentenced to jail time. Upon discovering her intersex condition, DiMarco was moved to solitary confinement for 14 months, despite pr esenting no risk of violence. A federal judge ruled that although there was no justified reason to move her to solitary, intersex protection under the 14 th ame ndment (Chase, 2004). Without any protection, sex segregated areas, such as restrooms or shelters, are not easily accessed by intersex people whose sex characteristics keep them from safely using either male or female areas. Policy must include intersex pe ople because their exclusion leaves them vulnerable to further mistreatment and marginalization. Micro Practice Social work is done at three levels: micro, mezzo, and macro. Micro social work is practiced with individuals and families. Mezzo social work involves groups and communities. Macro social work is at the societal level, looking at policy and law. In this section, I will discuss the issues individual intersex people and families of intersex people face and how micro level social work c an address these issues. Mental Health Intersex clients may come to social workers with mental health concerns. Although there does not exist data on the needs of intersex people, it is known in other oppressed populations that the experience of oppre ssion and minority stress can contribute to mental illness (Meyer,

PAGE 15

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 15 2003) . Transgender and gender non conforming (GNC) individuals are shown to have high rates of depression and anxiety associated with minority stress (Bockting, 2013). While transgender ide ntities are not the same as intersex, this population also struggles with issues of gender identity and stigma around their physical sex. So, i t is likely that intersex people likely suffer from minority stress. IGM is the main focus of research on intersex mental health. But, it is not the only factor contributing to intersex mental health . Minority stress can be caused by other forms of prejudice and stigma as well. While there is no data on intersex people who did not experience IGM or who were n ot diagnosed until puberty, they would still experience minority stress and therefore may still need mental health help. The Intersex Society of North America (ISNA) used qualitative evidence from interviewing group members to sugge st that all intersex pat ients should be provided with mental health counseling, with an emphasis on the importance of group therapy (ISNA, 2008). Group therapy has been found to be useful for transgender and GNC clients , so it is likely useful for intersex people as well . Barrier s to Service Despite the suggestions of the Intersex Society of North America, a 2008 study found that only 15% of intersex patients and parents of intersex patients in the United States receive mental health services after diagnosis (Liedolf, 2008). Th is is likely due to barriers to services , such as not having access to someone trained in intersex issues. Doctors in hospitals and pediatricians all across the United States were interviewed , and the doctors reported that while mental health services were available in 69% of the hospitals, t he hospitals typically did not have anyone who was educated on intersex issues. Furthermore, the mental health services that were provided were typically not integrated with the medical servic es,

PAGE 16

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 16 with emotional support coming only from the doctors with the most experience with intersex patients. One doctor said , rs have actually counseled and [sic] intersex . Unfortunately, to date , the stu dy has not been replicated or expanded upon . Social workers can provide for the individual needs of these clients. Much of this population requires psychological and emotional su pport and likely would benefit from family and /or group therapy (ISNA, 2008) . Intersex people do not have access to therapy that addres se s their unique situation and needs, in part because mental health practitioner s, such as social workers and counselors, are not learning about intersex people as part of their standard education programs (Liedolf, 2008). It is important for individual practitioner s to seek further education on this topic so that they will have the competency to work with intersex people. Finally, social workers do not include intersex identity and issues in their standard educational programs. All social workers should have some knowledge of this issue, because they may encounter intersex people and friends, family, or significan t others of intersex people in their practice. This information should be included in courses about human behavior, development, and sex and gender. Social work programs that look at development and adolescents should include atypical puberty in order to s upport those experiencing it. Discussions of gender roles and gender socialization should include the unique experiences of intersex people, such as gender training. In addition, when discussing oppression based on gender, sex, and sexuality, it is importa nt to include intersex people who are also affected by these issues (Wilchins, 2004). Social workers working with families, children, or in medical settings need to have knowledge about this population and the language used to discuss intersex conditions. This

PAGE 17

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 17 is because they will be the ones working with children and families who have recently discovered their intersex status, either at birth or puberty. These social workers need to have the information to provide emotional support and help parents and you ng intersex people make informed decision (Leidolf, 2008), Family and Relationships Intersex conditions, due largely to the social norms surrounding sex and gender, can put intimate relationships are very different from each other, but they are often grouped together in research. The fact that intersex conditions have to be disclosed and explained sets intersex people apart from others. This difference is experienced as child ren learning about their bodies and later as adults in sexual relationships. The stigma around intersex conditions impacts parent child and sibling relationships. A study published in the Journal of Family Strengths found that the most common way for inte rsex people to learn about their condition is to be told by a parent who already knew (Jones, 2017) . The other common ways were finding out from a doctor or records, but in both of these cases the parents often already knew and hid it from them (Jones, 201 7). One participant said that her mother withheld the information even into her thirties and they she only found out by stealing just withhold information, they also lied about why they were going to the doctor or why they had surgical scars (Jones, 2017). Many intersex people report fee l ing betrayed by their parents, who have been hiding or lying about this information and have permanently altered their bodies (J ones, 2017) . This harms and sometimes even destroys relationships with parents.

PAGE 18

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 18 Another source of family strife and stress reported in the study was gender training; 43% of the participants also reported gender training, meaning they were pressured to pr esent and behave according to their assigned sex. Gender training goes beyond typical gender socialization which all children experience when they learn gender roles and pronouns. Gender training includes extreme pressures to conform and to accept medical intervention to change their appearance Gender training can also include physical abuse for failu re to meet gender expectations (Jones, 2017). Gender training is also commonly used on transgender or gender non conforming children and has been shown to lowe r self esteem and fail to produce the desired result of gender conformity (Langer, 2004). Intersex children are also pressured to behave and look like mature adults if puberty delay is a concern (Jones, 2017) . This further harmed their relationship because they reported their parents were disappointed in them for and pressured them to grow up more quickly than other children (Jones, 2017). However, it is also important to recognize parents often report that doctors encouraged them to lie, believed it was medically necessary, or simply did not know how to explain to the child they were intersex (Meoded Danon, 2016). These parents are not inherently malicious; they may simply be unaware of the damage they are doing, both to the child and their relationship w ith the child. Parents of intersex children may choose medical intervention or strict gender tors. Family therapy may be helpful to repair and strengthen these parent child rela tionships (ISNA, 2008). M ent al health practitioners should support and assist intersex people who desire to repair family relationships . Family therapy may benefit the family and help it to return to

PAGE 19

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 19 Strengthen family relationships can also provide an additional source of support for coping with stress. The oth er form of relationship that requires disclosure of intersex conditions is intimate, sexual relationships. Data gathered from studies in Australia found that 65% of intersex people reported that their intersex condition impacted their sexual relationships (Frank, 2017). Similar studies found about half of the intersex people surveyed were concerned about their gender identity and how potential partners would view their body (Frank, 2017). Fear of re jection based on their anatomy and fear of pain and physica l discomfort during sex are common in this population. There was also concern about a lack of knowledge about the risk of pregnancy and sexually transmitted diseases for their unique condition s . (Frank, 2017) Studies on intersex intimate relationships most ly focus on heterosexual relationships . These relationships typically involved one intersex person who identified as either male or female and one non intersex partner who identified as the other. Studies involving multiple intersex people, non binary, or non heterosexual intersex people are needed. These relationships could be different if the partner also experiences minority stress from their gender or sexual identity. In addition, there is not a lot of information on intersex people outside of Australia , so it is unknown if these feelings are common among intersex people in the United States. Frameworks for Practice Inclusive, strengths based interventions are important for individuals dealing with minority stress. Using inclusive language and affirmative practice helps to fight stigma , and strengths based interventions help individuals discover and build on their existing resilience factors.

PAGE 20

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 20 The strengths p erspective is a widely used form of social work intervention. Affirmative practice may also be a valuable framework for social workers working with this population. Affirmative practice supports the value of an unique experience as equal to that of the non oppressed identity ( Crisp, 2006 ). Affirmative practice minority identities to help fight internalized stigma (Crips, 2006). Use of affirmative practice with transgender patients has been fou nd to improve client therapist relationships, become comfortable with their identity, and improve their mental health to a point they no longer needed regular therapy ( Applegarth, 2016) . Affirmative practice may also provide these benefits to intersex pati ents, although it has not been studied. Again I will stress that intersex and transgender are not interchangeable and are not the same population, however, due to a lack of research on intersex individuals, we can only look at how other groups being oppres sed based on sex and gender identity respond to certain treatments Use of inclusive language in practice may also improve client social worker relationships. Some ways to use sex neutral language and be more inclusive are to include an intersex or other o ption on forms, to ask for pronouns and use the singular they when pronouns are unknown, and to avoid conflating gender and gender terminology with sex characteristics. An example of conflating gender and sex characteristics is asking a female presenting c lient if they plan on becoming pregnant, rather than asking if they plan on starting a family. Asking about pregnancy implies they must have a uterus and be fertile, which is not the case for many intersex women. Through this, we give the power to define t he issues facing intersex people to intersex people. Beyond ending IGM, little is known about how intersex people feel or what

PAGE 21

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 21 services they desire from social work ers. We do not know what services intersex people and their families are likely to use, beca use very few receive any services (Lei dolf, 2008). Mezzo Practice Next , I will discuss community level issues and how mezzo social work practice can address these issues. The c ommunity is a major source of support and resilience when discussing minority stress (Meyer, 2016). Resources Intersex people do not have access to many resources and even fewer that are specific to them. Resources are services which add to an individual or com adapt to stress. Examples of community resources are organizations that provide education about an issue, groups for therapy or social interaction, emotional support , and advocacy groups. Social workers also connect indiv iduals to resources that can help them to cope with life stressors, such as financial aid, education opportunities, and housing assistance. LGBT+ or similar acronyms that focus on gender and sexual minorities often add an I for intersex. LGBT+ stands for Lesbian, Gay, Bisexual, and Transgender+, with the plus symbol seeking to include other gender and sexual minorities. I will use this acronym because LGBT is the most widely recognized and used acronym to describe this group and it includ es the plus symbol to be inclusive of other sexual and gender minorities. When LGBT+ groups inclu de an this advertises to intersex people that resources are available there for them, but often they are not. In her book on queer theory, N iki Wichins (2004) talked to gay and lesbian groups and transgender groups, which served as advocates and social support for their target group. These groups reported that intersex issues are not their issues, even though intersex

PAGE 22

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 22 people are receiving unwa nted medical treatment for the overt purpose of making them heteronormative and fit within a binary sex system. In this way, h omophobia and transphobia contribute to the opp ression of intersex people (Wichins, 2004) . In addition, the argument behind IGM p resents LGB and transgender identities as the result of a medical abnormality that could be fixed with early medical intervention, which we would expect LGBT+ groups to fight against. Wichins (2004) believes that the reason they were not addressing this is sue is a matter of language; intersex people were labeled as a medical problem for doctors to solve and not an oppressed group which shared many of their members and social stigma. Possibly as a result of this perceived lack of concern for their needs, many intersex people do not wish to be included in the LGBT+ community. Intersex Human Rights Australia (2011) explains that intersex people are often erased and forgotten when g rouped in with LGBT+ people, which they believe furthers misunde rstanding of intersex identity, fails to address their needs, and even appropriates their struggle . This appropriation refers to using intersex conditions as an argument against the binary ideas of gender without contributing to the needs of the intersex community (IHRA, 2011). As LGBT+ groups do not always have resources for intersex people and some intersex people do not feel that they are being included in those groups , we must look to intersex specific groups for resources. Intersex specific groups are few and far between and are shutting down quickly. The Intersex Society of North America closed in 2008 due to lack of funds, and several other intersex or sex variant specific groups have closed since (OII, 2018). Connection with Community

PAGE 23

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 23 Intersex people can benefit from a connection with other intersex people, as it would provide them support and advice for dealing with stress. Connection to community has been able to provide resilience for other populations dealing with minority stress (Meyer, 2016). It can also or disclose their minority sta tus, in a safe place (Meyer, 2016) . There is a severe lack of physical space for intersex people to meet each other. So, most of this connection is mad e over the Internet (Frank, 2017). Using the Internet to create a community has some unique benefits. Dig ital interactions mean people can stay anonymous to avoid physical danger and the potential of others in their life finding out about their intersex condition and involvement in an intersex group. This anonymity allows intersex people to be more open and h onest about their experiences and makes their stories available to other intersex people to read and engage with (Frank, 2017). Social workers can, and should, become involved in creating new resources and supporting existing ones for intersex people. Mez zo level social workers may be involved with group therapy sessions, which can serve the same purpose for alleviating minority stress and connecting intersex people with a sense of community. The ISNA (2008) has used interviews with intersex adults to argue that group therapy is likely useful for this group, but there does not seem to have been trials done. Group therapy that focuses on counseling and social support can provide many benefits (Brandler, 2016). The group can be a place for intersex people to hear stories similar to their own and know they are not alone. They can express their own emotions and personal history in a setting that is considered safe, due to the inclusio n of other intersex people. Group members can also get support and advice f rom people who have gone through similar experiences. Finally, they can feel empowered when they provide support to others in the

PAGE 24

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 24 group (Brandler, 2016) . A more education focused group can teach skills needed to cope with the social stigma and any trauma c aused by it (Brandler, 2016). These groups may also benefit family members who are dealing with their own emotions about the intersex condition and the impact of social stigma on the family. Finally, action oriented groups may help intersex people work tog ether to fight for their own rights, build new resources, or otherwise work together to benefit Social Workers as Educators Social workers can act as educators and advocates for increased education with this population ( Za strow, 2013 ). This may involve educating other school or medical support staff, finding and connecting available services, advocating for new services, and management or administrative work in intersex organizations. One example of advocating for increased education is a school social worker proposing that a school add information about intersex conditions to their puberty or sex education and ensuring this information is taught in a way that does not further stigmatize the group. This would let young intersex people in that school have some idea of what is going on with their body and give them the vocabulary to ask questions of doctors, discuss concerns with their emotional supports, or disclose to friends i f so desired. It may also help to fight stigma by introducing the idea to non intersex people when they are still young. Macro Practice Macro level social work looks at society and policy. This is where s ocial workers can fight the discrimination of inter sex people through advocating for changes to law and policy. According to the National Association of Social Workers (NASW)

PAGE 25

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 25 social work profession is to enhance human well and empowe rment of people who are vulnerable, oppressed, and living in poverty (2017 , p. 1 Social workers are called to end social injustices . The intersex population is experiencing social injustices that affect their mental, physical, and social well being. Therefore, social workers should seek to alter the polic i es and social institutions that commit these injustices through advocacy and research . Activism and Advo cacy Social workers use macro practice to advocate for changes to policy. Many intersex people would like the option to identify as intersex legally and encourage designating infants as intersex on birth certificates. Intersex activists believe the use of the X for intersex on birth certificates would normalize intersex conditions and discourages bodies. Forcing parents to choose from a sex binary gives the parents t he implicate idea that being intersex is wrong and unacceptable and the child must be fixed (Davis, 2013b). This lack of legal recognition also leads to a lack of legal protection from discrimination, as with the case of Miki Demarco (Chase, 2004). A s ocia l worker can serve this population, by utilizing social work skills for this civil rights movement. Social workers can advocate for this group by pressuring policymakers . This can be done by petitioning, working with the media to disseminate information, p lanning demonstrations and protests, and mobilizing group members. Social workers can use resources management skills such as fundraising, budgeting, and grant writing, to support existing intersex rights groups ( Kirst Ashman , 2018 ) . Social workers have performed these duties for other social movements in the past (Reisch, 2013). Research and Utilizing Data

PAGE 26

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 26 Social work , and the social sciences as a who le, can serve this group is through research. Intersex people are an understudied population, to the point where many social workers are completely unaware of this population . Social sciences have mostly focused on the effects of IGM and satisfaction with assigned sex, but need to encompass other areas. For example, studies are needed which include non binary genders , those other than male or female. Most studies of intersex people have ask ed participants to identify as male or female and failed to account for other identities . For example, a study published in the journal Psychology & Sexuality asked if respondents were satisfied with their assigned sex. However, the phrasing did not include non binary genders. Female assigned respondents who said they did not consider themselves male were written down as satisfied (Schweizer, 2014) , but their comments revealed they were not . Thus, there is a lack of knowl edge about how intersex people identify when given more than two options . Research is also needed in regards to intersex people raised without medical interventions. In response to questions about IGM, s ome doctors have cited fears that not intervening m ay be worse because the experiences of intersex people who did not receive surgery ha ve not be en th oroughly tested (Knight, 2017). Qualitative data of a few personal experiences ha ve been gathered, but the doctors interviewed desired more quantitative data in order to accept it as a valid alternative (Knight, 2017). Intersex people who do not have medical interventions as children because their condition is not known until puberty are also excluded from research which largely focuses on IGM . Although they make up a large portion of the community, their opinions and needs are not researched at all. Social work often consider s how gender or sex influences the effectiveness of interventions and should include intersex people as a separate category to ensure they are being

PAGE 27

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 27 given the most appropriate treatments. Although many intersex people identify as a man or woman and can typically be grouped with other men and women, studies have not been done to det ermine if their treatment needs are the same as other men and women. Researchers should look into this because it is possible that intersex women are being given the same treatments as non intersex women but with different results. Both their unique biolog y and the minority stress they experience may influence their needs, but this has not been studied. For example, intersex people in Australia have the same high level of homelessness that is found among transgender people but is not found in non intersex c isgender people (Jones, 2017). Therefore, in Australia, homelessness would be an area of concern with this population and should be taken into account when considering treatment needs. However, such studies have not been done in the United States to determ ine if this issue occurs here. Finally, there is little data beyond statements published by intersex rights groups to determine which terms intersex people are using for themselves in the day to day life and what they wish to see available on legal records . This topic would be a good starting point b ecause it would help set a foundation for the language social workers should use when discussing this population. It may also provide quantitative data to show policymakers how common the desire for legal recognition is, as they may be more interested in a n issue that can be shown to a ffect many people than a few who are willing to go to court. Conclusions and Next Steps In order to truly serve this population, social work must be as dedicated to intersex rights as it is to another civil rights movements. Social workers can advocate for this group by being more inclusive of them in research, practice, and social work education. In social work education, intersex people should be includ ed in areas such as human behavior and the social

PAGE 28

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 28 environment classes, child development classes, and classes that look at sex and gender. Chapters of the NASW can hold informational forums and continuing education options for social workers who are alread right to self determination and fighting discrimination, can be incorporated into policy that includes intersex people. Examples of this are advocating to end IGM but also being more inclus ive in our language and personal practice. Research is the area I was interested in when starting this project. I am still very interested in conducting research with this population if at all possible. One area that is lacking in research is including n on binary, intersex, or other options in survives. I have created a documentation, attached in Appendix A. I am interested in the terminology intersex people use f for infants. If gathered, I feel this information may help to strengthen the argument for changing documentation by discovering how common support is. This could also be extended to a general population to discover how common knowledge of the issue and desire for non binary options is. I also feel it will help future researchers to know how intersex people identify themselves before moving on to questions of effic acy of treatment or population needs. This will allow researchers to use appropriate language when conducting surveys or interviews. I feel that research on other topics involving this population, such as testing group therapies and affirmative practice sp ecifically with intersex people or gathering demographic data about issues like homelessness and experiences of prejudice would greatly benefit this population which is largely unrecognized and we simply do not know about. Ideally, the issues of IGM and le gal recognition will someday be settled and no longer be an area of focus, but social workers should keep in mind it is not the

PAGE 29

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 29 only issue facing intersex people. Intersex people are an oppressed group who may have mental health concerns impacted by minority stress and therefore can benefit from social work. Social work is an evidence based profession and so should seek evidence that can help us better support this population.

PAGE 30

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 30 References Alpert, A., Cichoski, E. & Fox, D. (2017) What lesbian, gay, bisexual, transgender, queer, and intersex patients say doctors should know and do: A qualitative study, Journal of Homosexuality , 64:10, 1368 1389, DOI: 10.1080/00918369.2017.1321376 American Ca ncer Society. (2014). Breast cancer in men. Retrieved from https://www.cancer.org/cancer/breast cancer in men/causes risks prevention/risk factors. html Applegarth, G. & Nuttall, J. (2016). The lived experiences of transgender people of talk therapy. International Journal of Transgenderism, 17 (2), pp. 66 72, DOI: 10.1080/15532739.2016.1149540 Brandler, S. & Roman, C. P. (2016). Group work: Skills and strategies for effective interventions. 3 rd ed. New York, NY: Routledge Publishing. Bockting, W. O., PhD., Miner, M. H., PhD., Romine, R. E. S., PhD., Hamilton, A., H.S.D., & Coleman, E., Ph.D . (2013). Stigma, mental health, and resilience in a n online sample of the US transgender population. American Journal of Public Health, 103 (5), pp. 943 951. Carpenter, M. (2016) The human rights of intersex people: addressing harmful practices and rhetoric of change, Reproductive Health Matters , 24: 47, 74 84, DOI: 10.1016/ j.rhm.2016.06.003 wyoming prison violated constitutional rights of intersexual http://www.isna.org/dimarco

PAGE 31

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 31 Crisp, C., & McCave, E. (2007). Gay affirmative practice: A model for social work practice with gay, lesbian, and bisexual youth. Child and Adolescent Social Work Journal, 24( 4) pp 403 421 Cummings, W. (2017). When asked about USA Today. Davis, G. (2013 a ). The power in a n ame: Diagnostic terminology and diverse experiences. Psychology & Sexuality, 5 (1). 15 27. DOI: 10.1080/19419899.2013.831212 Davis, G., & Murphy, E. L. (2013 b ). Intersex bodies as states of exception: An empirical explanation for unnecessary surgical modification. Feminist Formations, 25 (2), 129 Sexuality and Cu lture (22). 127 147 . Hall, K. Q. (2009). "Queer theory." Encyclopedia of environmental ethics and philosophy , vol. 2. 191 193. https://www.hrw.org/report/2017/07/25/i want be nature made me/medically unnecessary surgeries intersex children us from https://ihra.org.au/13651/isgd and the appropriation of intersex/ Intersex Society of North America (2008). Retrieved from http://www.isna.org/faq/frequency Jones, T. (2017) Intersex and families: Supporting members with intersex variations. Journal of Family Strengths (17) 2.

PAGE 32

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 32 Kirst Ashman, K. K., & Hull, G. H. (2018). Understanding generalist practice . 8 th ed . Boston, MA. Cengage Learning. Knight, K. (2017). A changing paradigm: US medical provider discomfort with intersex care practices. Human Rights Watch Retrieved from https://www.hrw.org/report/2017/10/26/changing paradigm/us medical provider discomfort intersex care practices Langer, S.J. (2004). How dresses make you mentally ill: Examining gender identity disorder in children. Child and adolescent social work journal . DOI: 10.1023/B:CASW.0000012346.80025.f7 Leidolf, E., Curran, M., & Bradford, J.(2008) Intersex mental health and social support options in pediatric endocrinology training programs, Journal of Homosexuality(54) 3, pp. 233 242, DOI: 10.1080/00918360801982074 http://intersexday.org/en/beyond boundaries intersex hk china/ MacKenzie, D., Huntington, A., & Gilmour, J. A. (2009). Th e experiences of people with an intersex condition: A journey from silence to voice. Journal of Clinical Nursing, 18 (12), pp. 1775 1783. Markman, E. (2011). Gender identity disorder, the gender binary, and transgender oppression: Implications for ethical s ocial work. Smith college studies in social work. 81 (4). Meoded Danon, L. & Yanay, N. (2016). Intersexuality: On secret bodies and secrecy. Studies in gender and sexuality. 17(1) . pp. 57 72

PAGE 33

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 33 Meyer, I.H. (2003). Prejudice, social stress, and mental health in lesbian, gay and bisexual populations: Conceptual issues and research evidence. Psychological Bulletin, 129, 674 697. doi:10.1037/0033 2909.129.5.674 Meyer, I.H., Holloway, I.W., Kipke, M.D., Schrager, S. M., & Wong. C. F. (2014). Minority stress experiences and psychological well being: The impact of support from connection to social networks within the los angeles house and ball communities. Prevention science. 15 (1). 44 55. Meyer. I.H., Frost, M.D., & Schwartz, S. (2016). Social support networks among diverse sexual minority populations. American journal of orthopsychiatry . 86 . 91 102. Morland, I. (2008). Intimate violations: Intersex and the ethics of bodily integrity. Femi nism & psychology 18( 3), 425 430. National Association of Social Workers. (2017). Code of ethics. Organization Intersex International. (2010). the terminology of intersex. Retrieved from http://oiiinternational.com/2602/terminology intersex/ Preves, S. & Davis, G. (2017) Intersex and the social construction of sex. Contexts. 16 (1). 80. Pullen, A., Thanem, T., Tyler, M., & Wallenberg, L. (2016). Sexual politics, organizing practices: Interrogating queer theory, work, and organization. Gender, work and organization. 23. Reis, E. (2007). Divergence or disorder? The politics of naming int ersex. Perspectives in Biology and Medicine, 50 (4), 535 43. Encyclopedia of Social Work. DOI: 10.1093/acrefore/9780199975839.013.366

PAGE 34

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 34 Rubin, D. A. (2015). Provincializing intersex: US intersex activism, human rights , and transnational body politics. Frontiers, 36 (3), 51 83,196. Schweizer, K., Brunner, F., Handford, C., & Richter Appelt, H. (2014). Gender experience and satisfaction with gender allocation in adults with diverse intersex conditions (divergences of sex development, DSD). Psychology & Sexuality, 5 (1), 56 82. Suyra, M. (2005). Beyond male and female: Poststructuralism and the spectrum of gender. International journal of transgenderism, 8 (1), 3 22. Encyclopedia of lesbian, gay, bisexual and transgendered history in America vol. 2. 481 487. Wichins, R. (2004). Queer theory, gender theory. Los Angeles, CA. Alyson books. Workers, N. A. (2008). NASW Code of Ethics. Washington, DC: NASW. Zastrow, C.H., & Kirst Ashman, K. K. (2013) Understanding human behavior and the social environment. 9 th ed. Brooks/Cole , Cengage Learning.

PAGE 35

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 35 Appendix A: Sample Survey This sample survey was designed to collect online da ta about how intersex adults i n the United States identify and how much support there is in the intersex community for non binary and intersex labels on legal documentation. It was not completed due to time restraints but may serve as an example. Due to debate about proper nomenclature, this survey will use the widely , but not condition under the medical umbrell meaning atypical reproductive and sexual anatomy, including genetic, hormonal, and anatomical differences, and includes both those present at birth and those that do not become symptomatic until puberty or adulthood. 1. D o you have an intersex condition? Yes No 2. Do you currently live in the United States of America? Yes No 3. What is your age? Under 18 18 24 25 34 35 44 45 54 65 74 75 or older 4. Which of the following terms would you use for yourself? (one or more)

PAGE 36

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 36 Intersex Disorder of Sex Development Difference of Sex Development Hermaphrodite Other, please specify 5. I would support an intersex option on legal documentation Strongly agree Somewhat Agree No Opinion Somewhat Disagree Strongly Disagree 6. I would use an intersex option on legal documentation. Strongly agree Somewhat Agree No Opinion Somewhat Disagree Strongly Disagree 7. I would support a non used by people who are not intersex Strongly agree Somewhat Agree No Opinion Somewhat Disagree Strongly Disagree 8. I would use a n Strongly agree Somewhat Agree No Opinion Somewhat Disagree Strongly Disagree 9. I would support an intersex option on birth certificates for infants Strongly agree Somewhat Agree No Opinion Somewhat Disagree Strongly Disagree 10. Legal Recognition as intersex is important to me.

PAGE 37

INTERSEX IDENTITY AND SOCIAL WORK PRACTICE 37 Strongly agree Somewhat Agree No Opinion Somewhat Disagr ee Strongly Disagree 11. Which of the following do you use when filling out documentation? Male Only Female Only Intersex or Other when available but Male when not Available Intersex or Other when available but Female when not available Other , please specify 12. What would a change to include an intersex option on legal documentation mean for you? 13. How would you expect a change to include an intersex option on legal documentation to effect the intersex community? 14. Do you have any other thoughts on intersex identity and gender status you would like to share with us?