Death and the LGBT Community: When Culture is Not Defined by Country



Death and the LGBT Community: When Culture is Not Defined by Country

By Cheryl Espinosa-Jones, M.S., M.F.T

www.weatheringgrief.com

 

 

Introduction

 

Although the Lesbian, Gay, Bisexual and Transgender (LGBT) community has experienced a sea change in societal attitudes since the Stonewall riots in 1969 (considered the start of the modern LGBT Gay Rights Movement) there still exists a substantial level of discrimination and intolerance towards members of this community. Often, LGBT people have experienced, at least initially after coming out to family and friends, painful rejections, up to and including complete severance from their families of origin. Although acceptance is growing, many LGBT people still experience this. For instance, a recent study found that 40% of homeless youth are LGBT, demonstrating that it is more difficult for LGBT youth to stay with their families (Durso and Gates, 2012).

 

Older LGBT people have also lived a history of active movements to deny them rights and privileges conferred, without question, on heterosexuals. Further, most if not all LGBT people have experienced first hand acts of violence, either verbal or physical, based solely on their sexual orientation and/or gender identity (Bronski, 2012). Although we can’t assume how any one individual has or will respond to these societal truths, or to his, her or their own individual histories, we can assume that each LGBT person has had to incorporate these realities into the narrative of their lives. Therefore, as end of life practitioners, knowing how our clients have responded to their experiences as members of an oppressed minority is critical in offering the kinds of services and creating the types of environments that will move beyond tolerance to acceptance, offering LGBT people true allies at the end of their lives.

 

Understanding what factors may affect an LGBT person at the end of life, both positively and negatively, grounds us in the kind of care that will facilitate a positive end of life experience. We must be aware how LGBT persons see themselves in relationship to family, support network and larger community. We must be cognizant that, depending on age, geography and a host of personal factors related to being members of this community, LGBT people may be reticent even to identify themselves as LGBT (Fredriksen-Goldsen, 2014). Therefore, it is critical that we actively create environments that identify us as allies before the LGBT person indicates his or her membership in this community. We can begin this process by educating our care communities, including other service recipients, about what acceptance looks like and how it can be expressed. Although LGBT people will differ widely regarding how they have responded to their sexual orientation and/or gender identity, we must work proactively to understand how it may have affected their lives and may now be affecting their level of fear, self protectiveness and defense.

 

Who Are We talking About?

 

Although we are using the shorthand LGBT, it’s important to understand how members of this community might identify themselves. Although this is not an exhaustive list, it will give us a starting point in understanding how LGBT people may view and define themselves.

 

Lesbians are women who are exclusively or primarily attracted to women sexually and romantically. Typically, lesbians are mainly or almost completely same sex oriented, although individuals may define themselves as lesbians and still have sexual relations with a member of the opposite sex, either before or after coming out (defined as acknowledging one’s sexual orientation or gender identity and often expanded to include telling others what you have acknowledged). It’s important to view lesbianism as something generally beyond sexual partner preference, since typically, a lesbian will also choose another woman to be relationally involved with.

 

Men who are exclusively or primarily attracted to other men typically refer to themselves as gay.  Some women who are exclusively or primarily attracted to women may also use this term.  As above, gay is not simply a term describing sexuality but is expanded to include one’s choice of love, spousal or romantic partners.

 

Bisexuals are people who are attracted to both men and women sexually and relationally. This does not necessarily mean that a person who defines him or herself as bisexual will be non-monogamous. Typically, bisexuality refers to the person’s sexual and emotional nature, not their choice at a given moment. It’s important to keep in mind that a bisexual person may historically have experienced difficulty being accepted in both lesbian and gay communities and by heterosexuals. This can be a deeply alienating factor in the person’s life and may cause a reticence to divulge sexuality.

 

Transgender people are those who were born into the body of the opposite sex from the one they identify with. There is more and more recognition that this is more common than was previously acknowledged and that a transgender person typically knows that they feel alienated from their biological sex quite early, between 3 and 5. Since the tolerance of sex change, and the physical ability to change one’s sex, is a relatively recent development, the effect of being transgender will vary greatly depending on age, experience and acknowledgement of one self. It’s important to note that a person who defines as transgender may or may not have had surgery to change their sex physically. If sex reassignment surgerie(s) have happened they may be partial or complete. Further, gender identity does not determine sexual identity. Once reassigned, the transgender person may be either same sex oriented or opposite sex oriented.

 

You may encounter many other identifiers used by members of the LGBT community, two of which are often added to LGBT. The first is queer. Although queer was, historically, a derogatory term for gay or lesbian, it has been reclaimed by many members of the community to describe themselves (you may less frequently encounter such repurposing for the terms “faggot,” “homosexual” and others.) As a general rule, the reclaimed term queer has been used to radically depart from categories such as lesbian or gay, which many younger LGBT people consider constrictive. Queer people prefer terms that do not automatically define sexuality or gender identity in what they think of as a limiting way. A queer person may be primarily same sex oriented or both sex oriented but primarily consider themselves non normative and non gender conforming. Queer may also refer to people who identify neither as he or she and prefer to be called they, experiencing themselves as neither one sex nor the other.

 

 Secondly, intersex persons are those who are born with biological features of both sexes. Increasingly, intersex people and their parents are claiming their right to remain intersex, as opposed to the historically prevalent assignment of one sex or the other, thus determining what kind of social conditioning might ensue. Intersex people often use the term queer as well.

 

These are but a few of the ways an LGBTQI person may talk about themselves. Listening carefully to the particular language your client uses and matching it will support a trusting relationship (for a more complete list: University of Michigan, 2015). As should be obvious from these descriptions, professionals need to be cautious when interpreting meaning. Discovering through careful and sensitive questions how the person views themselves will vastly increase the potential of establishing a trusting relationship in which LGBTQI persons feel seen and heard. Because the way members of this community define themselves is directly linked to their emotional experiences as members of this community, beginning with some knowledge of possibilities but also an open-minded questioning is vital. All human beings like to be seen and heard, but in a community that has experienced oppression from the surrounding society, being accepted as one defines oneself is even more critical. It is also crucial that environments project an impression of inclusion before the LGBTQI person encounters the system, so that some level of comfort with being open is more possible. Optimum inclusive protocols would include having a dedicated office to welcome and support LGBTQI service recipients. Where this is not possible, making sure all literature is written using inclusive terms and that the staff is non-biased in their treatment of recipients can make a profound difference in the experience of LGBTQI persons.

 

 

Areas of Impact for LGBT Persons Facing the End of Life

 

History

 

In exploring the impact on LGBT people of their history of oppression, it is important to recognize that in the lifetimes of all LGBT people, there have been innumerable public events which have led to personal consequences. We cannot assume what effect these events may have had; these will differ depending on many factors, including the age of the person who is facing the end of their life, the amount of family of origin support they have received, the kind of community they have developed and many other variables. This section will touch on just a small fraction of such broad cultural events, which typically have produced both a cementing of identity and an experience of persecution, sometimes resulting in what has been called internalized oppression or internalized homophobia (negative self-judgement as a result of being LGBT). Some events can lead to the LGBT person experiencing a deep anger and a resolve to change the prevailing attitudes about LGBT people (resulting in activism), some experienced more fear and a decision to hide one’s sexuality in various public venues, others internalized the hatred towards them and destroyed their lives with risky behavior, alcohol or drugs.

 

No matter how an individual LGBT person assimilates these events, social climate impacts individuals, and LGBT people will have had to cope in some way with attitudes towards them. Some may deny or ignore, others may have fought against these forces, still others may consider themselves to have assimilated and risen above.  No matter what individual LGBT people have done to deal with their status as stereotyped, misunderstood and often defiled minority members, these events will likely affect their behavior in a public environment, including with the medical establishment and support facilities, in some way. Remaining curious about the impacts on persons we encounter and how they have navigated their lives as minority members will often help to explain current behavior. Are they strident about insisting they be accepted, or do they fail to disclose their sexuality? Do they seek to fit in by disappearing or stand out by fighting the “good fight?” Viewing behavior in the context of social factors may help us to accept behavior which could appear mysterious without the historical context. Seemingly out of proportion reactions may, within the context of LGBT history, make sense.

 

LGBT people have been a part of society throughout history. There is evidence of same sex relationships at least as far back as ancient Greece (Crompton, 2004). Over time, negative societal attitudes in the western world developed and led to active oppression of LGBT people. These attitudes were then exported around the world. Regardless of the stigmas associated with being LGBT, there were still always LGBT people who were identifiable, but they faced imprisonment, rejection, lack of employment and even death as a result of being believed to be LGBT. From approximately the 1930’s until the 1970’s, the vast majority of LGBT people lived their lives hiding their identities (Signorile, 2003). Beyond what might happen to them at the hands of society or individuals, disenfranchisement led to a high probability of self harming behaviors including alcohol and drug use, emotional difficulties and suicide (Institute of Medicine, 2011).

 

To understand why LGBT people hid their identities publicly, a few examples of those who did not are useful.  Oscar Wilde, the noted playwright and poet, was imprisoned for his homosexuality, severely damaging his health. He died at 46, separated from the person he loved by their two families and exiled from his country (McKenna, 2005). Alan Turing, subject of the recent film The Imitation Game, was convicted of homosexuality after he decoded the German secure messaging system, helping to end World War II. When charged with crimes related to his sexual orientation, he accepted a sentence of drug therapy to reduce libido and loss of his security clearance (resulting in the end of his career) instead of going to prison, and soon after died of cyanide poisoning, largely thought to have been a suicide (Hodges, 2014). These are just two examples of the choices faced by those who were either openly LGBT or found out (outed). They are far from isolated cases and are only publicly recognized because of the extraordinary work unrelated to their sexuality of these two men.

 

Although there were protests against the oppression of LGBT people in the United States and throughout the world before 1969, the Stonewall riots that year are considered the turning point in the struggle for LGBT equality in the United States (Carter, 2010).  At that point, participating in consensual same-sex sexual behavior was illegal in 49 of the 50 states, with Illinois first decriminalizing same sex activity in 1961. (Note: The Supreme Court of the U.S. only struck down the last remaining sodomy laws, which to that point criminalized same sex sexual behavior, in 2003). There were some exceptions in Europe. However, there was a very low level of acceptance for LGBT people worldwide. What was notable about the Stonewall riots is that they continued for several days and there was a concerted effort to get the word out internationally that the protests were happening. With awareness came a greater number of grass roots organizing efforts and an evolving willingness to make one’s sexuality known to others. Still, coming out had extreme consequences for many LGBT people, including loss of family ties and possible imprisonment, loss of children, loss of jobs, blackmail, etc.

 

As the LGBT community became more visible, backlash was also evident. For example, in 1977-1978, two notable campaigns to further limit the rights of LGBT community members took place. The first, the Save our Children Campaign in Dade County, FA, was publicly led by Anita Bryant, a religious conservative who succeeded in repealing an equal rights bill for LGBT residents of that county. This resulted in a boycott by the LGBT community of orange juice, since Anita Bryant was the spokesperson for Florida orange juice. The second was the unsuccessful initiative in California, the Briggs Initiative or Proposition 6, to make it illegal for gays and lesbians, and potentially anyone supportive of their rights, to teach in the public schools. Although both these campaigns were devastating to the LGBT community, which experienced them as a direct personal attack, they did begin to galvanize a concerted effort towards equal rights.  

 

Only a few years later, the AIDS epidemic struck hard in the gay community, fracturing but also galvanizing the community, now engaged in a fight for their own lives and for funding dollars to address the epidemic. In turn, the backlash came, further stigmatizing LGBT people. Many Americans went so far as to call AIDS a punishment from God (Signorile, 2003). (More on AIDS later).

 

In nearly every national election in contemporary history, gay rights have been an issue. Frequently, the fear of LGBT people being given full rights as citizens has been used to galvanize the far right, and sometimes the middle right, resulting in a vocal expression of anti-gay sentiment in the political rhetoric (Fetner, 2008). It was a long time before the more progressive and/or liberal political parties were willing to use their capital to defend the rights of LGBT people, often claiming that they couldn’t risk alienating religious people by standing up for gay rights. This led to distrust and alienation from the political process for many LGBT people, and activism for others. Ultimately, battles were waged to increase access to equal job protection, equal right to adopt children, equal health care access, marriage equality; in short, equal status a citizens.

 

Marriage equality was seen as an unwinnable fight until very recently. However, LGBT people in almost every state across the nation began to wage a fight for marriage equality (though some members of the LGBT community believed it was not important and not worth the fight.) To date, this has resulted in marriage equality in 37 out of the 50 states, with the Supreme Court set to settle the question of national rights within the next few months. Same sex marriage is also legal in 17 countries outside the U.S. It’s important to note, however, that the fight for marriage equality has been an up and down struggle. For example, in California Gavin Newsom opened marriage to LGBT people only to have those marriages nullified. The courts then legalized it only to have Proposition 8, proposed and passed by California voters and defining marriage as between a man and a woman, strike that down. The Proposition 8 court case went through several ups and downs before it was found unconstitutional by the Supreme Court. Having endured ads all over the media and in public discourse demonizing them, LGBT people were, and are, affected personally by the public debate (Becker, 2014).

 

Evolving attitudes in the public have led to a steep reduction in blatantly anti- LGBT rhetoric and a general shift in the population towards a more tolerant, if not inclusive or accepting, attitude. The visibility of public figures that are LGBT, such as Ellen DeGeneres, Melissa Etheridge, Barney Frank, and numerous LGBT characters in national television and film (Modern Family, Ellen, Will and Grace, Glee etc.) has normalized and legitimized LGBT people to the public (Wood, 2010). Given that, statistically, people are significantly less likely to stigmatize LGBT people if someone they know is openly LGBT, we must attribute the change, in large part, to all the LGBT people who took the risk to be identified as LGBT to their families, friends and communities.

 

When working with members of the LGBT community, their history, and the effects of that history, will be impacted by their generation. Were they born during a time in which nearly all LGBT people remained closeted, hiding their sexuality from everyone? Or did they come out in a politically active climate, where coming out was becoming, if not comfortable, more common? Did they experience themselves as having an option to couple, have children, live openly? Or did their very lives depend on being secretive? The answers to these questions will not patently determine how an LGBT person will interface with end of life institutions. It will, however, be a factor in their level of comfort, their attitudes and their experience of safety.

 

Age

 

The age at which a person came to terms with their nonconforming sexual orientation or gender identity will have a profound impact on what that person has experienced.   The so-called Silent generation (Fredriksen-Goldsen, 2014) is more likely than the baby boomers or younger to have kept their identity a secret and also to have experienced profound consequences of their sexual orientation and/or gender identity. In this age group, it may be very hard to identify an LGBT person. The younger the LGBT person, the more likely they are to have come out to at least some of the broader community, including family and friends. However, many of them will have experienced a higher level of victimization because their status was known. Age factors can only inform your questions, never your answers. But having some knowledge of how age might interact with openness is invaluable in evaluating the LGBT person you are working with. The following discussion will give you a sense of some of the major events that have shaped the LGBT community and will most impact persons who lived through them.

 

The AIDS Epidemic

 

In the early 1980’s, gay men began to be diagnosed with a mysterious and fatal illness, which quickly became known as Acquired Immune Deficiency Syndrome. (Later identified as being caused by the Human Immunodeficiency Virus) (Harden, 2012). Particularly in large urban locations such as San Francisco, Los Angeles and New York city, the toll was high, often wiping out a whole network of friends and significant others. Homophobia (negative judgment about LGBT people) and lack of knowledge about the disease combined to create an extreme rejection not only of those with the disease but also all LGBT people, disregarding the fact the infection in lesbians was the lowest of all groups. The LGBT community turned their attention to advocating for better research and more services. HIV/AIDS became a singular galvanizing issue in the community. This had the surprising consequence of creating a greater sense of unity within the community, bringing gay men and lesbians, in particular, together. However, the numbers lost were staggering.  Many men in San Francisco, near where I live, lost their entire friendship networks and many never fully recovered the kind of community they once had. This was particularly devastating because, given the high rate of rejection at the time by the families of origin of these men, friends were more like family. Further, with the death of a sexual or romantic partner, there was fear of meeting the same fate.

 

Not until 1987 did the radical group ACT-UP, along with more conservative approaches to social change, begin to engage in political action, which led to higher funding levels and greater attention to the AIDS epidemic (Gould, 2009). This resulted directly in treatments that then helped people to live with AIDS. Therefore, HIV positive people who had expected to die ended up living and having to reevaluate their lives in a longer time frame. Theoretically, we might imagine that some members of the HIV positive community may not have taken aging seriously, certain that they would not age. LGBT people who experienced so many deaths during this period may either have become resistant to thinking about death or might have considered it more deeply than the average person. Further, the human network of support, which helps people to face their life challenges was, for many, severely compromised.

 

The outgrowth of the crisis can be seen in the following example: Even in the city thought to be the friendliest to LGBT people perhaps in the world, San Francisco, 30% of the homeless population is LGBT, while only 15% of the city’s residents are LGBT, and the majority of these homeless are HIV positive. This means they may have very little option but to stay in San Francisco, where treatment and services are available (Wiener & Redman, 2015), yet have a severely inadequate income to support living there. This creates a Catch-22 in which they can’t leave and can’t afford to stay. Of those who have housing in the City, over 50% live alone, thus implying a higher need for services at the end of life, but a lower availability of support. With San Francisco thought to be the mecca for the LGBT community, the circumstance of LGBT people facing the end of their lives in other parts of the country would likely be far worse.

 

Other health concerns

 

LGBT people are at higher risk for alcohol, drug and cigarette use related to their stigmatization and oppression. Lesbians and bisexual women are at slightly higher risk for breast cancer and a greater risk of obesity. Gay and bisexual men are at an increased risk for HIV.

 

This is coupled with the fact that LGBT people are more likely to be uninsured or underinsured and to have lower incomes. Health care is also accessed less frequently, often due to a fear of mistreatment by the medical establishment. These facts together contribute to a greater tendency towards ill health in LGBT communities. (Fredricksen-Goldsen et.al. 2014) (Simoni, 2015).

 

Geography

 

Generally, there is a more supportive environment for aging or ill LGBT people in major urban centers such as San Francisco than many other parts of the U.S. and the world. As one example, consider Alabama (Robertson, 2015). Despite the ruling of the Supreme Court that Alabama was required to register same sex couples to marry in the state, the government refused, echoing the refusal of Alabama to desegregate, following a Supreme Court ruling requiring it. Whether LGBT people want to marry or not, this is a vivid indicator of a cultural environment in which it would be extraordinarily difficult for the individual LGBT person to feel safe and supported. We could also extrapolate a general cultural bigotry against LGBT people that might affect the care they receive as they access services and interact with other service receivers (D. Augelli and Grossman, 2001).

 

This has created an environment in which many elders retreat back into the closet, afraid they will not be accepted if they are open about their sexuality or gender identity. As has been amply demonstrated, being open about one’s identity is strongly correlated with psychological wellbeing (Fredriksen, 2014). Therefore, we can assume that many elders in parts of the U.S. and the world who do not experience accepting environments and/or who do not disclose their identities are likely to be negatively affected psychologically.

 

In another vivid example of the continued persecution of LGBT people, an American church group has been bankrolling an effort in Ghana to round up LGBT Ghanaians for imprisonment and possible death sentences. Since this church is U.S. based, the message is clear to American LGBT communities; “we believe you deserve persecution, including imprisonment and death.” The effect can be chilling for a person who is LGBT (Gettleman 2010).

Although there are now many states and countries in which LGBT people have equal legal rights, this may be small comfort if society’s attitude towards members of the community is icy. In a subculture already experiencing lower income levels and less access to important supports, it may take a great deal of courage to live an open life. Further, sometimes the LGBT individual is identified without their permission if they interact openly with other LGBT people, leaving many in the untenable position of either living an isolated life or taking the risk of being identified and then persecuted.

 

The situation in urban centers is somewhat better but far from welcoming. A recent survey of LGBT seniors in San Francisco indicated that, while 58% live alone (compared with 25% of their heterosexual counterparts) they were much less likely to access services and cited concern over discrimination as the primary reason. Many expressed concern they would have to go back in the closet to avoid being mistreated if they needed care (LGBT Aging Task Force, 2014).

 

Social Network

 

As a result of a greater than average isolation of the LGBT community from their families of origin and broader communities (at least for some years after coming out) there is a greater than average probability that the LGBT person will have developed a community and/or family of people who are neither biologically nor legally related. According to a 2010 study, 60% of respondents in an LGBT survey reported they had non-legal relationships with people they considered family (Metlife Mature Market, 2010). These relationships with partners, friends and the LGBT community represent a phenomenon common to oppressed groups; banding together to support each other through the difficulties of their social circumstance. What remains unique for many LGBT people at the ends of their lives is the lack of legal sanction for the most important people in the LGBT person’s life and the relative lack of support from their families of origin.

 

These chosen relationships, often formed during periods of profound reckoning with various aspects of being LGBT, result in very deep and meaningful ties. Even when families of origin ultimately grow to tolerate (yet not always accept) the LGBT person’s gender or sexual identity, chosen families will often continue to be in a better position to support and care for each other. There is a level of safety that comes from being fully accepted for who one is that outstrips biological bonds during times of crisis. Furthermore, the people that support the coming out process have already gained traction as trustworthy and dependable resources in difficult times, making them good candidates when other difficult times, up to and including the end of life, come. Even if the LGBT person has changed friendships, support networks and significant relationships, there may still be a residue of deeper trust in whatever community has been chosen, as opposed to families of origin. Therefore, finding ways to determine who each person counts on and considers indispensable in their end of life process is vital to fulfilling the opportunities of that time; life review, assuring one’s care goals and end of life wishes are met and getting the kind of help one needs to support a “good death.” (The Advocate, 2013). Being able to be open about the truth of your life is essential in all of these areas.

 

LGBT People of Color

 

Although this paper does not deeply explore the particular concerns of LGBT people who are also members of an ethnic or racial minority, it is vital to consider the impact of this double stereotyping on the clients with whom we work. In coming out as LGBT, people may have risked alienation from a primary form of support in addressing the impact of racism in their lives. This puts coming out in an even more high stakes category and also reduces the potential that the LGBT person will feel supported in the broader LGBT community.

 

Further, different ethnic, racial and cultural communities respond to their LGBT members in unique and diverse ways. Therefore, it is important to explore the intersection between LGBT identity and identity as a person of color. For instance, many Native American communities, while influenced by the broader society’s rejection of LGBT people, do have a societal norm for “two spirit” members (the term often used to describe LGBT people). Two spirits may, in some communities, be seen as essential to the well being of all, depended on to care for community members and counted on to offer wisdom. This would have an impact on the individual LGBT person who may feel a lower degree of stigmatization because of the role they are expected to perform in their larger community (Fredriksen-Goldsen, 2007).

 

In any interaction with LGBT people who are also people of color, exploring the ways these two identities intersect is critical. Often, people of color consider their LGBT identity less important than their identity as people of color and may not immediately recognize the impact their sexual orientation or gender identity has had.

 

Individual factors

 

Although awareness in all these areas is critically important in serving the needs of LGBT people at the end of life, what can never be assumed is how an individual LGBT person has synthesized these factors over a lifetime. Here the concept of Posttraumatic Growth is helpful. In brief, posttraumatic growth refers to the phenomenon of possible improvement in several key areas of living as a result of struggling with trauma. Research has shown that 30-90% of all people experiencing a trauma will experience posttraumatic growth  (Calhoun and Tedheschi, 2012). Living as an LGBT person in a homophobic society is a clear example of trauma, to a greater or lesser degree depending on individuals’ experiences and how they have responded to them. We must remain alert both for signs of trauma, and also for the possible resiliency LGBT people have developed as a result of struggling with those traumas.

 

If LGBT people have come to a place of internal support for and acceptance of their nonconforming identity, what is the impact of having had to come to terms with it? What are the differences between those who have found peace with their sexuality or gender identity and those who have faced lifelong shame and self-criticism? When a person who has been happily “out” for a lifetime feels they must hide their sexuality to receive the services they need, what is the effect on their wellbeing?

 

Answers to these and the many questions we face as providers for this community must be individually tailored to the particular LGBT person. Yet being aware of the possible impacts on the person in front of us makes it more likely that we will be able to indicate a working knowledge of what may be at play. Because members of oppressed communities often become reticent to share their deepest experiences, LGBT people may communicate a false impression of being worse off than they are, or better. It requires expert listening, grounded in solid knowledge, to prove ourselves trustworthy enough for LGBT people to open up.

 

Fostering relationships which take differing identities into account can go a long way towards inviting the openness of the LGBT person. As with all people we encounter dealing with the end of their lives, curiosity about the lives they have lived is vitally important to supporting positive end of life exploration. In fact, educating ourselves about how to meet the needs of the LGBT community may in the end improve the way we interface with every one of the people we serve, creating a more open and curious environment for all.

 

Fostering an LGBT Supportive Environment

 

LGBT people will interface with all the care environments other people facing the end of their lives do. These include (but are not limited to) medical facilities, care communities, in home services, caregiver support services, hospice, palliative care, organizations supporting people with particular diseases, mental health services, and many other end of life environments. As we continue to commit to making these environments more LGBT friendly we are, at the same time, broadening those environments overall and increasing the possibility that all of our care receivers feel better seen and met.

 

Indications of a Supportive Framework

 

The most important factor in fostering an LGBT supportive environment is creating and enhancing tangible indications of inclusion. (National Resource Center on Aging, 2012) These could include (but are not limited to):

 

o   Designating an LGBT liaison in your organization, who is LGBT and/or receives advanced training in meeting the needs of the LGBT population.

 

o   Making sure your literature reflects inclusion, such as: “We are an open and inclusive environment, committed to acceptance of all regardless of race, ethnicity, sexual orientation or gender identity. Our community treats each member with respect, regardless of differences, and maintains commitment to learning from each other about our unique histories and life stories.”

 

o   Developing questionnaires for potential clients and members that reflect diversity such as: “Who are the people in your life that you consider family? Have you had any experiences in your life in which you have been stereotyped or mistreated? How did you handle them? Have you ever felt the need to hide something important about who you are? If you did, what effect did that have on you? How do you describe your sexual identity and gender identity to yourself? How can this environment support you to have the best possible experience here?”

 

o   Sponsoring a Gay/Straight Alliance at your facility or offering programs specifically geared to LGBT members. How about a “history of LGBT rights as it affects the individual” night, or a presenter on responses to the Biblical objections?

 

o   Requiring or at least offering periodic in service trainings for staff by members of the LGBT community that educate staff about the potential issues affecting LGBT service recipients. Be sure to include LGBT presenters willing to share their personal stories, encompassing a broad spectrum of positive and negative experiences as LGBT people.

 

o   Highlighting information about your inclusive policies in your advertising materials.

 

o   Including information about your policies in informational presentations.

o   Being clear in your policies that you accept the gender assignment that transgender persons assign themselves and that their gender will be honored in their care. This would include calling a person by their chosen name regardless of legality, including them in activities intended for their particular gender and allowing transgender persons to use facilities for the gender they identify with.

 

o   Aggressively train your staff in meeting the needs of clients regardless of differences. This training would, of course, also help with other differences like religion, race or ethnicity. Make your workplace a welcoming environment for every person to be accepted as they see themselves!

 

o   Don’t wait until someone comes out to you to activate services that are LGBT accepting. Become allies for all your clients at the end of their lives.

 

Personal Interface

 

When it comes to serving the needs of the LGBT community (or any other community, in fact) the way we talk with individuals one on one has a tremendous impact on creating a sense of safety and, therefore, willingness to be open. Assess whether your staff is able to talk about sexual and gender issues comfortably and non-judgmentally. Wherever possible, assess new employees during the interview process. If an individual staff member is not comfortable with LGBT issues, insist that they remain neutral and supportive when they interface with LGBT individuals. This would include not trying to “reform” or convert members of this, or any, community and not bringing their own beliefs into the relationship. Since staff can never be sure whether the person in front of them is an LGBT person, this attitude should extend to all service receivers.

 

Because many religions, social groups and political organizations still consider LGBT people bad, wrong or sinful, education is necessary to reinforce that, regardless of personal belief, each person deserves to define their own right and wrong, and environments that work with people at the end of life must respect differences of lifestyle and belief/value system.

 

Behaving in an inclusive manner does not require agreement with another’s experience or choices, merely acceptance of the difference. Help your staff members understand the difference between tolerance (I will let you be here) and acceptance (you deserve my respect for your viewpoint and choices). Consider making this a requirement of the job, since it is very difficult to truly support any person at the end of life without being accepting of how they see themselves.

 

Inclusion of the Care Receiver’s Community

 

As discussed, LGBT persons have a greater likelihood of considering non-biological/legal people in their lives to be members of their “true family”. For instance, because access to legal marriage is still unavailable in 1/3 of the states in the U.S. and many countries world wide, even the significant other of a dying person may have no legal status. Further, some older LGBT people will not choose to legalize their relationships, out of fear or belief. Because some people have experienced a level of oppression that has made them hesitant to be open, LGBT people may not disclose their relationships to you, further complicating an active attempt to include significant players in their lives. Wherever possible, pay special attention to people the care recipient is talking about with a sense of importance and actively invite their participation (Fredriksen-Goldsen, 2007).

 

If your client is open about their sexuality or gender identity, take the opening to ask which people they consider family. Of course, asking all clients who they consider important in their world is invaluable. However with LGBT people, it is often essential. Be aware that they may already have experienced other crises with their communities, possibly giving them a head start in dealing with the end of their lives. This might be especially true of people who have lost members of their community to AIDS or breast cancer (since there is a higher rate of breast cancer in the lesbian and bisexual women’s community).

 

Make note of what the LGBT person calls their support community members. For instance, a significant other might be called a husband or wife, a spouse, a girlfriend or boyfriend, a lover, a roommate, a beloved, a partner or a friend. Members of an extended

support community may be called friends, but also may be identified as sisters or brothers. Language may not reflect the importance of an individual in that person’s life, since many LGBT people have cultivated a circumspect style to protect themselves in inhospitable environments. Pay special attention to which individuals seem to come up frequently and seem woven into the person’s life.

 

A special concern arises when LGBT care receivers are experiencing cognitive impairment. If they are unable to communicate the importance of the people in their lives, you must attempt to decipher it by paying attention to the people who visit and act in supportive roles. How affected are they by the ups and down of their LGBT person? How intimate are the questions they ask? Are they willing to describe their relationship with the person receiving care? Again, they may have reason to withhold key information, so indicating organizational commitment to inclusion is critical.

 

Be sure to bear in mind that a person’s situation now may not reflect their community in the past. Ask questions about what the person’s community looked like in the past, aware of the possibility that your client lost their community at some point and may be relatively isolated now. This would perhaps increase the need for support from social service agencies but would also mean that the person has had some experience with end of life issues and may bring that wisdom into their own end of life experience. It is easier to return to something that is familiar than it is to create something brand new. Acknowledge the value of community and look for ways to introduce community into the person’s life. Do you know other LGBT care receivers within your organization who might be open to connecting? Can you help the LGBT person dig a little deeper to invite members of the community with whom he she or they have been out of touch into their current world? How can you encourage relationship building across differences, for instance by creating a life story telling group or other activity? Above all actively support an end of life experience that resolves or contradicts some of the injuries of the past. Since the end of life naturally lends itself to review and resolution of past difficulties, end of life care organizations hold a key position in LGBT people coming to terms with what they have experienced as members of an oppressed minority group.

 

Conclusion

 

LGBT people who are aging and/or facing the ends of their lives have unique challenges and blessings to bring to this universal life experience. A history of oppression and struggling for acceptance and respect can lead to both resilience and injury. No individual member of this community is defined by their membership in it. Sexual orientation and gender identity is but one aspect of the whole person. However, taken in the context of both personal and societal history, it is an important aspect.

 

Our best way forward in serving this population is to have a clear knowledge of the experiences and cultural events that may impact the individual, but never to assume that impact or its result.

 

LGBT people have, almost universally, faced discrimination, judgment and often physical and emotional danger as a result of their LGBT status. Understanding that this is part of their context and that they have adapted in fruitful and not so fruitful ways to their status in society will encourage an open and supportive attitude at the end of life, helping LGBT people to make the most of this vivid and potentially beautiful time.


 

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