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HIV

Melody Rose is a 35-year-old woman who has been incarcerated in Fond du Lac, Wisconsin since October 2007. In addition to living with HIV while in prison, Rose experienced serious health problems involving her gallbladder. In March 2008, Rose's physician referred her to Fond du Lac Regional Clinic, where she met with Dr. Steven Cahee to discuss having her gallbladder removed.

After Dr. Cahee learned about Rose's HIV, he refused to perform the necessary surgery — stating that he was concerned she might infect him and his surgical team. Later, a surgeon at another medical facility removed Rose's gallbladder in what is considered a routine surgical procedure.

Lambda Legal and AIDS Resource Center of Wisconsin (ARCW) filed a federal lawsuit on behalf of Rose. The lawsuit alleges that those asked to provide health care to Rose — Dr. Cahee, the Fond du Lac Regional Clinic and Agnesian HealthCare, Inc. — violated both federal and state law by refusing to do so based on her HIV status. In addition to claims under the Americans with Disabilities Act and its state law counterpart, which both prohibit disability discrimination by places of public accommodation, Rose also has a claim under a Wisconsin state law that specifically forbids health care providers (and others) from denying services to people based solely on their HIV status.

ARCW Legal Services Program Director Peter Kimball says, "Discrimination in health care remains a major problem for people living with HIV." Lambda Legal's HIV Project has represented people with HIV for more than 20 years to help them secure equal access to care, affordable medications and unbiased treatment.

The case is Rose v. Cahee, et al. 

Lambda Legal is urging the new administration of President-elect Barack Obama to reverse policies that challenge the human and civil rights of people living with HIV/AIDS in the United States.

As the next U.S. President, Obama will be in a position to eliminate unfair and medically unnecessary barriers to equality for people with HIV. Lambda Legal's HIV Project attorneys have worked with other HIV advocacy groups, including the AIDS Legal Council of Chicago, the ACLU, the Center for HIV Law & Policy and GLAD, to prepare recommendations for the new president about employment and licensing, access to health care and other essential services, HIV criminalization, HIV testing, immigration, prevention and prisons.

Specific recommendations include calling on the new administration to:

  • Issue immediately an executive order to ensure that all federal agencies are complying with the federal Rehabilitation Act and are not imposing medically-unwarranted restrictions on employees and applicants living with HIV.
  • Direct the Department of Justice to issue official guidance to state officials, clarifying that states' exclusion of people with HIV from occupational training schools and licensing in professions such as barbering, massage, food services and home health care violates federal antidiscrimination law.
  • Direct the Surgeon General to re-issue findings reflecting the conclusive scientific evidence showing that needle exchange and syringe access programs reduce drug abuse and prevent HIV infection and urge Congress to lift the ban on federal funding that limits these programs and costs lives.
  • Direct the Equal Employment Opportunity Commission, the Attorney General and the Secretary of Transportation to promptly issue regulations implementing the ADA Amendments Act in accordance with its remedial purposes.

For a more comprehensive look at these recommendations, visit "Critical Civil Rights Issues for People Living with HIV/AIDS in the United States."

This document was authored by Gay & Lesbian Advocates & Defenders in Boston, in collaboration with a working group of lawyers, mediators, social workers and parents in Boston, as well as with Lambda Legal Defense and Education Fund, National Center for Lesbian Rights, Family Pride Coalition and the American Civil Liberties Union Lesbian and Gay Rights Project. This document has also been endorsed by Children of Lesbians and Gays Everywhere. Other organizations who wish to be listed as endorsers of these Standards should contact GLAD, and a current list of endorsers can be found on GLAD's website.

These Standards represent the collective recommendations about what we deem a threat currently facing our community. Because of the importance of this to our families and our children, as well as to our continuing fight to be treated appropriately by the legal system, we have taken the unusual step of agreeing to a set of very specific suggestions we are asking our community to follow. All of us ask that those of you who are dealing with conflict within same-sex families read, consider, disseminate, follow, and urge others to follow these guidelines.

First Printing: April, 1999



Protecting Families: Standards for Child Custody in Same-sex Relationships



Summary

These Standards are intended as a tool to help families who are at risk. Families whose ties are not defined by biology, adoption or marriage are put at risk by a legal system that does not provide a mechanism for protecting their relationships at times of crisis. Respecting our own families requires us to play this role for ourselves, our children, and each other. The text accompanying each of these principles is meant to help even those in deep crisis. We urge you to read and use the full document. The overarching aim of the standards, which are listed below, is to help families maintain the status quo for their children to the greatest extent possible at times of crisis or a breakup.

  1. Be Honest About Existing Relationships Regardless of Legal Labels.

  2. Consider the Dispute From the Perspective of the Child or Children.

  3. Try to Reach a Voluntary Resolution.

  4. Try to Maintain Continuity For the Child.

  5. Remember That Breaking Up Is Hard to Do.

  6. Seriously Investigate Allegations Of Abuse In Determining What is Best for the Child.

  7. Honor Your Agreements.

  8. The Absence of Legal Documents Is Not Determinative of the Issues.

  9. Treat Litigation As A Last Resort.

  10. Treat Homophobic Law and Sentiments as Off Limits.



Introduction1

    Our Successes In Creating Families

    For many years now, both lesbians and gay men have set out to create our own families with children, often with partners, and sometimes with a partner coming into a family after a child's birth. Many refer to our families as those "of intention and function." As we near the end of the second decade of the phenomenon known as the "lesbian baby boom" or "gayby boom," it is important to establish guideposts about how to protect our children when our families separate.

    Sometimes we form families with an adult who will not be a parent but is intended to have a special and important relationship with the child. This may be a sperm donor, surrogate mother, or some other person, and is referred to in this document as a "significant adult" or "family member."

    Our community has much to be proud of in its successes in creating families outside of conventional models. We want these lesbian and gay families to be treated as families in all contexts and by the law. Many of us have sought to obtain some kind of legal recognition for our families, whether through second parent adoption, co-guardianship, domestic partnership benefits, or powers of attorney. To the non-gay world, we have stressed that our relationships are those of a "family" rather than of "housemates" or "roommates." We assert that "if it looks like a family, if it holds itself out as a family, if it functions like a family, then it's a family." However, we know that except for second parent adoption, legal mechanisms do not confer equal parental status on all parents, much less do they allow for the nuances of other important roles we have created, such as the involved non-parent, donor, or other significant adult whose role is conceived of as stable and permanent, even if not "parental."

    The Nightmare of Divorce Without Legal Process

    As in non-gay families, our families sometimes separate. As in non-gay families, when our family relationships undergo changes or break-ups, we experience feelings ranging from sadness and betrayal to hostility and anger about the end of the relationship and about the former family member. In addition to the emotional issues which must be resolved, there may be property division issues and child custody and visitation disputes with which to contend. There is no divorce system in the background, poised as a default to help our families sort these issues out according to uniform and predictable rules.

    Preventing Harm to Children

    The general lack of legal recognition for our important family relationships results in disrespect for our families and often can lead to the end of important family or parent-child relationships. After parents or families separate, some birth or adoptive parents terminate contact between the child and other parent or family member immediately; others allow visitation for a period of time until they find the visitation too inconvenient or form a new relationship. Of course, some parents work hard to maintain their children's relationship with a parent or other significant adult. Some parents have even sought second parent adoptions of their children with their former partners.

    Preventing Harm to Our Collective Interests

    Some parents who are not legally recognized and other sig- nificant adults, when faced with a total loss of their relation- ship with their child, have turned to the courts to restore contact between themselves and their children. Often, although not always, courts interpret state law schemes to give authority to even bring a lawsuit only to those people that the law defines as "parents."2 Under these restrictive laws, "parents" are only persons related through birth, marriage, or adoption. In other words, in legal terms, the status of "parent" is an all or nothing proposition. Courts often wash their hands of considering the needs of children when the family member lacks a biological or adoptive relationship, but may very well have been involved in everything from planning for the birth of the child to caring for the child virtually every day of the child's life.

    Legal cases are often very damaging to our collective interests in addition to threatening deep injury to the individual families and especially to the children. A focus solely on the legal rights of the biological or adoptive parent ignores the real relationships of many parents, significant adults, and children. It is extremely damaging to our community and our families when we disavow as insignificant the very relationships for which we are seeking legal and societal re- spect. Similarly, when an express agreement was entered into by the parties, it is very damaging later to turn around and claim that such an agreement has no validity simply because it has become inconvenient or feelings among the adults have changed.

    As a legal matter, cases that go forward along these lines are likely to have the consequence of reinforcing narrow legal versions of what counts as a family, and of what mechanisms are available to create security in establishing a family. We convey to the courts a disrespect for our own families when members of our own community insist that our relationships -- of whatever duration and however intermingled -- do not amount to a "family," or that the other parent was really nothing more than a babysitter. Obviously, this kind of argument also undercuts efforts in other contexts to win legal respect for our families -- whether through domestic partnership, or adoption, or resisting restrictions on a divorced parent's visitation when a same-sex partner is present. More cases which state that the biological parent is the winner in law, or that the only real family that merits court protection is one created by biology or marriage, and that agreements mean nothing, will come back to haunt our community in many contexts.

    Protect Our Children

    These Standards are offered as an approach to the resolution of custody disputes upon the dissolution of a same-sex relationship, or non-married family.

    These Standards are based on the belief that decisions about the care and custody of children whose same-sex parents, or other significant adults, share a commitment to and responsibility for those children should be based on the best interests of the children in the context of their actual relationships with each parent rather than on the relationship between the parents, or on the existence of a legal relationship with one of those parents.

    The Standards are also grounded in the belief that our freedom to continue to create secure and stable families depends on respecting the methods we use to create them. Some individuals take on responsibility for children because they have entered into agreements which provide them some sense of security in their roles with those children. Thus, it is very harmful to our future ability to plan families when courts are encouraged (by some) to find the agreements invalid or legally unenforceable. By the same token, some individuals with a biological connection to a child (birth parent, sperm donor, egg donor) agree not to be involved in the child's life as parents and to forego the legal advantage that biology would otherwise give them. These individuals are encouraged not to use biology as a trump card that invalidates their agreements and to assert a superior or equal claim to those of the child's actual parents should disputes arise.

    These Standards may serve as a guide to individual families. More broadly, they may serve as the basis for a continued discussion within our community about how to establish an ethic which respects and protects the actual parent/child and other important relationships in our families. These Standards are intended to be aspirational and voluntary and are certainly not intended to generate disputes that may result in additional litigation. Nor should the Standards be cited as legal authority.

    Create Documents Supporting Your Family and Take Advantage of Legal Protections In States Where They Exist

    People should be strongly encouraged to create legal and other documents articulating their intentions and expectations about the families they have and are creating. These may be co- parenting agreements, estate planning documents, or other types of agreements used in your state. A secondary benefit of such agreements is that the process of reaching an agreement can uncover, and encourage resolution of, areas where the understanding among the parties is unclear, or where there is outright disagreement. It is very important to identify and resolve as many potential disputes as possible. In the process, unexpected and undesired future scenarios should be considered, with special attention to the possibility of the family breaking up.

    When possible, it is important to take advantage of legal mechanisms which exist in some states to protect the relationship between the parents and the child. A number of states permit co- parent adoption, a process by which non-biological parents become legal parents to the child. (Contact an attorney to find out if this is available in your area). Even in states without second parent adoption, a legal parent may be able to name another parent as a co-guardian or the non-legal parent may be able to obtain a limited parental status under state law. It is important to utilize all of the protections which may exist unless there is some important reason why that is not practicable (e.g. a known sperm donor who will not waive his parental rights for a second parent adoption where such waiver is required).

    Encourage Families In Distress to Review These Standards

    As a community, we must remember to speak up, and use the power of our own voices when we encounter families in distress. Encourage those families to review and apply these Standards. The lack of legal recognition of our family relationships has an enormous impact on our community and on every family among us. As a community, we need to provide the support and incentive to behave reasonably even at very difficult times. All of us have a responsibility to educate others to the reality that litigating custody disputes in conventional courts of law may well lead to erosion of the societal and legal credibility our community has gained for our families.

    These Standards are offered in the spirit of community, and in the hope of creating a community where our children are safe, loved and protected. We encourage people to apply them to their own disputes, and to help friends and loved ones who may benefit from them by providing them this document and support in following its principles.



Standards

  1. Be Honest About Existing Relationships Regardless of Legal Labels.

    Individuals should be forthright and honest about the existence and nature of the relationships between and among the parents, other significant adults, and the children.

    Each situation is unique and there is no single approach that will work for all families. It is critical to recognize the actual relationships between the parties and the child. A focus on legal labels can easily obscure the actual relationships.

    Of course, not everyone who claims to be a "parent" or "significant adult" after a dispute is actually a person whose relation to the child is contemplated in the spirit of these standards. It may be that the relationship between the adult and child is of such a short duration, or is so intermittent, or is so profoundly troubled in some way that no parent-child or other significant relationship exists.

    Agreements and documents, particularly when coupled with an ongoing course of conduct that establishes the intent of parent(s) to share parenting or allow an important relationship to develop with another parent or significant adult should be given great weight in determining the context in which the parties' relationships to the child developed.

  2. Consider the Dispute From the Perspective of the Child or Children.

    Separating parents or families experiencing conflict with a significant adult should consider the best interest of the children involved to be paramount and should consider the child(ren)'s perspective. Continuity of their relationships with significant adults is vital to children's well-being. While individuals may be critical of each other, to a child, even a marginal parent is a parent. The abrupt termination of a relationship that was contemplated as permanent is very damaging. Sustaining the family members' present relationships with their children should be a primary goal of the resolution of the custody dispute.3

  3. Try to Reach a Voluntary Resolution.

    At a minimum, this means that the persons involved should endeavor to reach a voluntary resolution about future care and support for the child. If the parties are at an impasse, consider involving family friends or relatives who know the family well, or retaining the services of a mediator or arbitrator who can help the parties reach a voluntary agreement.

    It may be helpful to know that courts themselves increasingly utilize the services of alternative dispute resolution providers. Mediation, the most common form of alternative dispute resolution, involves a confidential, voluntary form of structured negotiation designed to help the participants reach an informed, agreed-upon resolution with the assistance of one impartial mediator. Other forms of dispute resolution include arbitration and agreements negotiated with lawyers or in couples' therapy. (Consult an attorney knowledgeable in this area of law for recommendations of mediators and arbitrators.)

  4. Try to Maintain Continuity For the Child.

    In arriving at a plan for the future, the parties should start with a presumption that an arrangement which most closely resembles the child's relationship with his or her family over the last two years (or for the life of the child when the child is under age 2) is best from the child's perspective.

    Although it may be difficult, each person should allow and encourage a comparable level of involvement in the child's life and activities as each had before the dispute unless they agree otherwise. This applies to school and extracurricular activities, as well as to the need to share or alternate holidays and other special occasions. To the best of their ability, all family members should aim to continue to provide financial support for the child. Maintaining the status quo to the extent possible should be the goal for the family. Continuity of their relationships with significant adults is vital to our children. The abrupt departure of a loved adult simply because one parent has changed his or her view of that person can cause great harm to a child.

    Hand in hand with assuming the child's perspective in considering the rights of family members comes viewing responsibilities for support and caretaking that way, too. Just as one who wishes to deny the relationship of the child and another family member must be urged to consider the impact on the child, a family member should do everything possible to maintain the status quo for the child in terms of support as well.

  5. Remember That Breaking Up Is Hard to Do.

    Individuals should be helped to understand that the end of a relationship is invariably difficult and disruptive to all involved. Even the most amicable divorces take months to process, and many divorces are not entirely amicable. This is all the more reason to seek out the services of a trusted friend or professional mediator who can help the parents avoid impulsive and expedient decisions which are likely to be harmful to the child.

  6. Seriously Investigate Allegations Of Abuse In Determining What is Best for the Child.

    Abusive adult relationships and child abuse do occur in some of our families. If there are allegations of domestic violence, it is important to determine, based on a thorough history, whether or not the allegations are founded. If abuse is substantiated after investigation, whether it is physical or emotional abuse between the parties and/or between the parties and the child, then it should have a role in determining what is in the child's best interests. The focus should be on safety and treatment, not on using the fact of abuse to deny another person's status as a parent or other significant adult. When a parent or significant adult is abusive, the other family members should use legally available means to protect themselves as well as the child. In some cases, this many mean a suspension of visitation or supervised visitation. Research shows that children are often negatively affected by domestic violence even if they are not physically hurt or do not directly witness physical violence. The impact of any abuse on the children should be discussed and incorporated into all negotiations.

    Allegations are different from substantiation. Allegations of abuse should be seriously explored in order to reach an honest determination as to whether there was abuse, or whether the feelings stated are those commonly associated with the break-up of a family relationship. A professional evaluator hired at the expense of the parents may be helpful.

  7. Honor Your Agreements.

    Whether written or verbal, it is important to honor the agreements you have made. Of course circumstances can change from the time an agreement was formalized or a promise made. A commitment to a child involves significant emotional investment on both the child's and the adults' parts, so it is vital to be assured that important relationships are respected and permitted to remain stable by the child's other parent or caregivers.

  8. The Absence of Legal Documents Is Not Determinative of the Issues.

    While it is important to take the available legal steps to protect our families, some cannot or do not pursue legal protections for their families. Some families do not fit the all or nothing definitions common in law. Money to obtain those protections may be an obstacle for some. Others may legitimately fear losing their jobs or homes by coming out in a court proceeding. Other obstacles may exist, too. For example, even in a state where second parent adoption is available, there may be another person (e.g. former spouse or sperm donor) whose non-consent to the adoption may prohibit the adoption under some states' laws.

    Thus, the failure of the parents and family members to take legal steps to secure their status as a family is only one factor in any evaluation of the child's best interests or of an agreement among the parties. In itself, the failure to take such legal steps cannot be a guiding or determining factor.

  9. Treat Litigation As A Last Resort.

    Individuals need to understand that litigation is both a costly and time consuming process. In addition, court proceedings and files are often open to the public, thereby compromising the family's privacy. Lawsuits have a public dimension both for the family involved and, to some degree, for other same-sex families, too. Those lawsuits in which a parent asserts that another parent or family member who has no adoptive or biological relationship to the child cannot be heard from in court on the issues of visitation or custody run the risk of making bad legal precedent, and signal very real disrespect for our own families.

    More particularly, litigation provides a highly structured forum in which the final decision remains with a judge. Mediation, as discussed in Standard 3, gives all parties input into the dispute-resolution process and the content of any voluntary resolution.

  10. Treat Homophobic Law and Sentiments as Off Limits.

    No one should reveal, or threaten to reveal, the sexual orientation of an opposing parent or other significant adult to employers or others, in an attempt to harass or intimidate the opposing party. No one should use the fact of a person's transgendered identity to gain any advantage over another.

    When litigation occurs, it is improper and unethical to appeal to anti-gay laws or sentiments. Individuals should not use the fact that gay and lesbian relationships are not recognized under current law to gain some advantage. Specifically, we emphatically urge those who are confronted with lawsuits not to resort to arguing that a person who has had a parental or significant relationship with the child but who is not a biological or legal parent cannot ask for visitation or custody because of "standing." If there is a well-founded belief that the child's best interests compel limiting contact between the child and former family members, then the court case should proceed on those terms and not whether an agreement is enforceable, or whether a non-legal parent can be in the court proceedings to begin with.

    Lawyers should consider: (1) limiting the terms of their representation to non-litigation options from the outset of the attorney-client relationship; (2) not relying upon laws or sentiments supporting the notion that parents have a more legitimate right to their children if they are biologically related to their children or related through adoption, than if they are not; and (3) after full discussion and disclosure to their clients, refusing to make arguments about lack of standing, and refusing to disavow written agreements, and so limiting their representation at the outset.



Conclusion

We can all agree that our children deserve to be loved and protected. This means that we ourselves as well as others should respect our families and our children's relationships whether the legal system would do so or not. We hope these proposed standards will be the basis for fruitful discussion and bring all of us closer to our shared goals.


Notes

1 This document began with the efforts of a concerned group of activists, lawyers, mediators, social workers and mothers who were gathered together by Gay & Lesbian Advocates & Defenders (GLAD), and who served as a sounding board and editor to the author, Mary Bonauto of GLAD. These include Silvia Glick, Joyce Kauffman, Sandra Lundy, Diane Neumann, Jenifer Firestone, Maureen Monks, Arline Isaacson and Pauline Quirion.

2 In these cases, courts often treat non-legally recognized parents and other significant adults as strangers to the child and deny the family member’s request for visitation. For example, in Vermont, the courts did not help Christine Titchenal who was forbidden by her former partner from seeing her 3 year old daughter Sarah. In New York, after separating from her partner of 17 years, Lynda A.H. was forbidden by her former partner from seeing her 3½ year old daughter. When a 9 year lesbian relationship ended in Texas, a 3 year old child suffered the biggest loss when the courts refused to intervene in a birth mother’s decision to forbid the child from seeing her other mother. Similar cases have been reported in virtually every state in the country.

3 Initial reluctance to add children to a family — a factor often used to suggest that one person has a more legitimate claim to a continued relationship than another — is not justification at all for terminating contact and a child and a person who has played a significant or parental role. As with any family, people who are ambivalent about having children often overcome their initial reservations and bond deeply. The fact that a person might not have anticipated doing so is completely irrelevant to the child’s experience of that family member, and the injury that the loss of such a person causes.

Dated in Boston, April 11, 1999.



    Gay & Lesbian Advocates & Defenders
    294 Washington Street, Suite 740
    Boston, MA 02108
    (617) 426-1350
    (617) 426-3594 (fax)
    www.glad.org

    Lambda Legal Defense and Education Fund
    120 Wall Street, Suite 1500
    New York, NY 10005
    212-809-8585
    212-809-0055 (fax)
    www.lambdalegal.org

    National Center for Lesbian Rights
    870 Market Street, Suite 570
    San Francisco, CA 94102
    (415) 392-6257
    (415) 392-8442 (fax)
    www.nclrights.org

    American Civil Liberties Union
    Lesbian and Gay Right Project

    125 Broad Street
    New York, NY 10004
    (212) 549-2627
    (212) 549-2650 (fax)
    www.aclu.org

    Family Pride Coalition
    P.O. Box 34337
    San Diego, CA 92163
    (619) 296-0199
    (619) 296-0699 (fax)
    www.familypride.org

    Children of Lesbians and Gays Everywhere
    3543 18th Street, #17
    San Francisco, CA 94110
    (415) 861-5437
    (415) 255-8345 (fax)
    www.colage.org

 

Lambda Legal has a long history of fighting in the courts for the rights of people living with HIV. This includes winning the first HIV discrimination lawsuit in the country, filing legal briefs in major U.S. Supreme Court cases involving the Americans with Disabilities Act, including Bragdon v. Abbott, Univ. of Alabama v. Garrett, and Toyota Motor Mfg., Kentucky v. Williams, and helping to secure legal victories for people with HIV seeking fair treatment by insurance companies, including New England Mutual Life v. John Doe and Galanty v. The Paul Revere Life Ins. Co.

Contrary to federal antidiscrimination law, the U.S. Foreign Service claims that Lorenzo Taylor is not eligible to enter the Foreign Service because he has HIV. For five years, Lambda Legal has represented Taylor in his battle against the State Department and its outdated policy. In June 2006, a federal appeals court issued a decision that is strongly supportive of Taylor's rights and permits his case, Taylor v. Rice, to proceed to trial in September.

In April 2005, a family court in Jackson County, Mississippi, ordered that three minor children could not be in the presence of their aunt because their aunt had HIV. Lambda Legal entered the case (Rowell and Smith v. Rowell ) and convinced the court to reverse its unfounded and stigmatizing court order, which had divided this family.

In February 2005, a Subway franchise owner fired a store manager after she learned he had HIV. In Hickman v. Donna Curry Investments, Lambda Legal represented the manager, Bob Hickman, and obtained a favorable settlement from the franchise, including monetary damages, policy changes and HIV training for supervisors at the company. Although there is no risk of HIV transmission through food handling, Lambda Legal continues to receive calls from food service workers who have been fired because of their HIV status.

In April 2004, Lambda Legal obtained the largest monetary award ever for an HIV discrimination complaint settled before EEOC. Cirque de Soleil paid a record $600,000 to end a federal disability complaint brought by gymnast Matthew Cusick.

Over the last few years, Lambda Legal has successfully represented several individuals who were denied liver transplant coverage by public and private health insurers because they have HIV. Overwhelming medical research shows that transplants are just as successful in people with HIV as they are in those without HIV. Although Lambda Legal obtained a policy change from the U.S. Department of Veteran's Affairs, which considers itself to be the nation's largest medical provider for people with HIV, some insurers still refuse to pay for transplants for people with HIV, relying on outdated concepts of the disease to deny coverage.

Since the onset of the U.S. HIV epidemic in 1981, stigma and discrimination have detrimentally affected people living with HIV (PLWH) in every aspect of their lives — including employment, education, housing, insurance, health care, and relationships with family, friends and sexual partners. This has resulted in harms including the erosion of social support networks, eviction from homes, loss of work, denial of healthcare, social isolation, depression and violence. Although confidentiality laws, the Americans with Disabilities Act and state antidiscrimination laws have provided some legal protection and relief against HIV-related discrimination, and the introduction of highly active antiretroviral therapy (HAART) in 1996 dramatically increased the life expectancy of those PLWH with access to care, too many PLWH in the United States continue to be harmed by stigma and discrimination.[1]

Our Education Deficit

HIV stigma is fueled by ignorance about the basic modes of HIV transmission, unfounded fears of contagion, moral judgment and personal prejudice against the groups most affected by the epidemic.[2]

Far too many people still lack basic knowledge about how HIV is transmitted. According to a 2006 national survey conducted by Kaiser Family Foundation:

  • 37% of the public mistakenly believed that HIV could be transmitted through kissing.
  • 22% mistakenly believed that transmission could occur through sharing a drinking glass.
  • 16% mistakenly believed that transmission could occur through touching a toilet seat.
  • And more than 4 in 10 adults held at least one of the above misconceptions about HIV transmission.[3]

Our HIV education deficit continues to fuel stigma against and to ostracize PLWH. For example, the 2006 Kaiser survey found:

  • Only 1 in 4 respondents reported that they would be very comfortable having a roommate with HIV.
  • Only 29% reported that they would be very comfortable with their child having an HIV-positive teacher.
  • And those with misconceptions about HIV transmission were much more likely to express discomfort about working with someone with HIV.[4]

Moral judgment continues to fuel discrimination against PLWH. Those who consider a person with HIV to be morally responsible for his or her HIV infection are more likely to harbor feelings of anger, blame and disgust towards PLWH and/or support coercive and discriminatory HIV policies.[5] National surveys reveal that PLWH continue to experience significant levels of moral judgment by their peers:

  • 40% of respondents agreed with the statement "In general, it's people's own fault if they get AIDS."[6]
  • 48.3% believed that "Most people with AIDS are responsible for having their illness."[7]
  •      And 24.8% believed "People who got AIDS through sex or drug use have gotten what they deserve."[8]

The Power of Prejudice

"I have always hidden my [homosexuality] from my family and friends. To now come out and say I am gay and I have AIDS, it's a double stigma. Unfortunately, the stigma is attached to you at the time you need support, you are afraid of dying, and you are hurting pretty bad."[9]

Scientifically, HIV is an infectious disease that is blind to the social status or characteristics of its host. Yet, prejudice and moral judgment have the power to redefine HIV as a deserved affliction or punishment. In this way, HIV serves as a vehicle for the expression of preexisting prejudice against particular socially marginalized groups, such as gay men and IDUs.[10] Further, HIV stigma may function in tandem with racial prejudice, creating multiple layers of stigma for PLWH who are members of ethnic and racial minorities.[11]

The perception of AIDS as a "gay disease" continues to fuel alarming misperceptions about sexual transmission of HIV.

  • A 2005 national study revealed that 33% of male respondents and 46% of female respondents incorrectly believed that HIV transmission could occur through unprotected sex between two uninfected men. [12] Since HIV cannot be transmitted when neither sexual partner has the virus, this evidence suggests the persistence of a widely held misperception that men having sex with other men is in itself dangerous or unhealthy.
  • Several national surveys indicate that stigmatizing attitudes towards PLWH appear to be greatest among heterosexuals who also express negative attitudes towards gay people.[13]

Injecting drug users are highly stigmatized and least likely to access care.

  • For example, a national survey found that 72% of respondents agreed with the statement, "I think people who inject illegal drugs are disgusting." Further, negative feelings towards IDUs directly correlated to increased attitudes of stigma towards people living with HIV.[14]
  • IDUs are less likely to receive highly active antiretroviral treatment than non-IDUs. According to a 2005 study, this remained true after adjustment for patient use of services.[15]

    Racial and sexual prejudices both contribute to health care disparities for black and other men who have sex with men.

    • In a 2004 study, black men who have sex with men expressed external and internal barriers to their medical care, including racial prejudice, distrust of doctors and medical facilities, miscommunication and lack of cultural competence.[16]
    • Recent studies have identified a pattern of ethnic and racial minorities receiving lesser quality health care than non-minorities, even when they have the same type of health insurance.[17] For example, a 2005 multistate study found that black Americans were less likely to receive HAART than whites, and that this disparity was not due to lack of access to care.[18]

    HIV Discrimination in the Third Decade of the Epidemic

    Existing evidence shows that HIV stigma and discrimination persist and continue to have a severe impact on the lives of PLWH.

    From 2002 to 2006, HIV-related employment discrimination claims have been filed with the U.S. Equal Employment Opportunity Commission (EEOC) at an average rate of about one per day.[19] This is only a small decline from the number of claims filed during 1994 to 2001, which saw an average rate of 1.3 claims per day.[20] We still have a long way to go to meet our goal of ending HIV stigma and discrimination.

    Discrimination also persists in the health care system. For example, a 2006 study of specific-service health care providers in Los Angeles County found HIV discrimination to be prevalent. The researchers surveyed 131 skilled nursing facilities, 98 plastic and cosmetic surgeons and 102 obstetricians in Los Angeles County to determine how many of these institutions practice a policy of blanket discrimination against PLWH. They found that of the institutions surveyed, 56% of the skilled nursing facilities, 26% of the plastic and cosmetic surgeons, and 47% of the obstetricians refused to treat PLWH and had no lawful explanation for their discriminatory policy.[21]

    Current examples of HIV stigma and discrimination are pervasive. PLWH experience stigma and discrimination in all aspects of social existence including employment, health care, child custody matters, education, sports and accessing public benefits. The following are just a few examples of discriminatory policies practiced by our own government:

    • The U.S. government bans individuals with HIV from entering the United States as tourists, workers or immigrants.[22]
    • The U.S. Foreign Service refuses to hire applicants with HIV.[23]
    • Sexual activity by people with HIV may subject them to criminal penalties in many states, even when the sexual activity is consensual, the activity involves little or no risk of transmission, there is no intention to transmit the virus and the activity does not result in HIV transmission.[24]

    HIV discrimination is underreported. Unfortunately, the number of claims reported and filed with EEOC represent only a small portion of the discrimination experienced by PLWH. Incidents of discrimination are not reported and/or pursued for a multitude of reasons including:

    • A potential claimant cannot afford a lawyer.
    • The discrimination is only one crisis among many the individual is facing, such as lack of access to housing or medical care.
    • Bringing a claim forces a claimant to focus on the indignities that he or she has experienced and toreveal his or her HIV status to others.
    • Legal standards and burden of proof can be very difficult to meet.

    Underreporting of discrimination may be particularly likely among PLWH who are members of historically marginalized communities.[25]

    Many forms of stigmatization are not illegal — and may be impossible to quantify — yet they continue to profoundly affect the everyday lives of PLWH. Cathy Bowman, HIV Project Director at South Brooklyn Legal Services, put it this way:

    "The law in New York does not prohibit family members, neighbors, friends, boyfriends, girlfriends, private landlords or the other clients you might run into at your HIV clinic, HIV case management program or other HIV-related program from telling anyone or everyone of your HIV status. It does not stop your family members from never speaking to you again. It does not prevent your neighbor from forbidding her children to play with your children. It does not bar gossiping, slurs, religious curses or hostile stares and has very limited efficacy against menacing behavior. The law does not advise us not to blame people with HIV for their status. It does not stop people from assuming that you are gay or promiscuous or use drugs. For some things the law offers no protection and unfortunately these are the traumas that I most often hear recounted in my practice."[26]

    The Psychological and Physical Toll of Stigma

    "I lost my wife and child. My father doesn't want anything else to do with me. My brother, who is in the medical profession, didn't want me living in the same community because it would affect his job. My own relatives would not give me a glass of water. Nobody wants to associate with me. Basically I died in 1989 when the diagnosis was made. I've kept on going and tried to carry on. That's why I am still here."[27]

    HIV stigma is a significant source of psychological damage and depression. [28]

    • A 2006 study found that higher levels of HIV stigma experienced by the respondent directly correlated with having symptoms of depression and/or having received psychiatric care in the previous year.[29]
    • Internalized HIV stigma is also strongly associated with levels of depression, anxiety and hopelessness.[30]

    HIV stigma and depression can deter PLWH from seeking medical care and lead to deterioration of health.

    • Stigma has been linked to delays by HIV-positive individuals in seeking medical care,[31]and at least one recent study has confirmed that a relationship between stigma and treatment adherence still exists.[32]
    • Depressive symptoms in PLWH have been correlated consistently with treatment nonadherence, suicidal ideation, disease progression and mortality.[33] Disturbingly, a 2004 study of nonmetropolitan PLWH found that "approximately 60% of participants reported moderate or severe levels of depressive symptomatology."[34]
    • In addition, research has shown a correlation between lower levels of social support and faster disease progression.[35]

    Tragically, stigma and discrimination are still prevalent in the third decade of the HIV epidemic and continue to have a very serious impact on the lives and health of people living with HIV in the United States.

    Lambda Legal HIV Project

    February 2007



    • [1] Vanable, P.A. et al., "Impact of HIV-Related Stigma on Health Behaviors and Psychological Adjustment among HIV-Positive Men and Women," AIDS and Behavior, 10(5), 473–482 (2006); Schuster, M.A. et al., " Perceived Discrimination in Clinical Care in a Nationally Representative Sample of HIV-Infected Adults Receiving Health Care," Journal of General Internal Medicine, 20, 807–813 (2005); American Civil Liberties Union., "HIV and Civil Rights: A Report from the Frontlines of the HIV/AIDS Epidemic," available at http://www.aclu.org/pdfs/hivaids/hiv_civilrights.pdf; Herek, G. et al., "HIV-Related Stigma and Knowledge in the United States: Prevalence and Trends, 1991–1999," American Journal of Public Health, 92(3), 371–377 (2002); Studdert, D., "Charges of Human Immunodeficiency Virus Discrimination in the Workplace: The Americans with Disabilities Act in Action," American Journal of Epidemiology, 156(3), 219–229 (2002); Zierler et al., "Violence Victimization After HIV Infection in a US Probability Sample of Adult Patients in Primary Care," American Journal of Public Health, 90(2), 208–215 (2000); Chesney, M. & Smith, A.W., "Critical Delays in HIV Testing and Care: The Potential Role of Stigma," American Behavioral Scientist, 42(7), 1158–1170 (1999); Herek, G., "AIDS and Stigma," American Behavioral Scientist, 42(7), 1102–1112 (1999); Herek, G. & Capitanio, J., "AIDS Stigma and Sexual Prejudice," American Behavioral Scientist, 42(7), 1126–1143 (1999); Laryea, M. & Gien, L., "The Impact of HIV-Positive Diagnosis on the Individual, Part 1," Clinical Nursing Research, 2(3), 245–266 (1993); Gostin, L., "The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions, Part II: Discrimination," Journal of the American Medical Association, 263, 2086–93 (1990).
    • [2] Herek, G. & Capitanio, J., "Symbolic Prejudice or Fear of Infection? A Functional Analysis of AIDS-Related Stigma Among Heterosexual Adults," Basic and Applied Social Psychology, 20(3), 230–241 (1998).
    • [3] Kaiser Public Opinion Spotlight 2006, "Attitudes about Stigma and Discrimination Related to HIV/AIDS," available at http://www.kff.org/spotlight/hivUS/index.cfm
    • [4] Kaiser Public Opinion Spotlight 2006.
    • [5] Herek, G. et al., "Stigma, Social Risk, and Health Policy: Public Attitudes Toward HIV Surveillance Policies and the Social Construction of Illness," Health Psychology, 22(5), 533–540 (2003); Herek et al. (2002); Herek & Capitanio (1999).
    • [6] Kaiser Public Opinion Spotlight 2006.
    • [7] Herek et al. (2002).
    • [8] Herek et al. (2002).
    • [9] Laryea & Gien (1993).
    • [10] Devine, P. et al., "The Problem of 'Us' Versus 'Them' and AIDS Stigma," American Behavioral Scientist, 42(7), 1208–1224 (1999); Herek (1999).
    • [11] See Schuster et al. (2005).
    • [12] Herek, G. et al., "When Sex Equals AIDS: Symbolic Stigma and Heterosexual Adults' Inaccurate Beliefs about Sexual Transmission of AIDS," Social Problems, 52(1), 15–37 (2005).
    • [13] Herek et al. (2003); Herek & Capitanio (1999); Herek & Capitanio (1998).
    • [14] Capitanio, J. & Herek, G., "AIDS-Related Stigma and Attitudes Toward Injecting Drug Users Among Black and White Americans," American Behavioral Scientist, 42(7), 1144–1157 (1999).
    • [15] Gebo, K.A. et al., "Racial and Gender Disparities in Receipt of Highly Active Antiretroviral Therapy Persist in a Multistate Sample of HIV Patients in 2001," Acquired Immune Deficiency Syndrome, 38(1), 96–103 (2005). See also Celentano, D.D. et al., "Self-Reported Antiretroviral Therapy in Injection Drug Users," Journal of the American Medical Association, 280, 544–546 (1998); Sherer, R., "Adherence and Antiretroviral Therapy in Injection Drug Users," Journal of the American Medical Association, 280, 567–568 (1998).
    • [16] Malebranche, D. et al., "Race and Sexual Identity: Perceptions about Medical Culture and Healthcare among Black Men Who Have Sex with Men," Journal of the National Medical Association, 96(1), 97–106 (2004).
    • [17] Institute of Medicine, "What Healthcare Consumers Need to Know about Racial and Ethnic Disparities in Healthcare," National Academy of Sciences, 2002, available at http://www.nap.edu/catalog/10260.html. Numerous studies have found that ethnic and racial minorities are more likely to be uninsured. See, e.g.,Kaiser Family Foundation, "Key Facts: Race, Ethnicity, and Medical Care," 2003, available at http://www.kff.org/minorityhealth/upload/Key-Facts-Race-Ethnicity-Medical-Care-Chartbook.pdf ; Institute of Medicine (2002).
    • [18] Gebo et al. (2005).
    • [19] Based on "ADA Charges Filed with EEOC and State and Local FEP Agencies Where the Alleged Basis Was HIV," obtained from EEOC by Lambda Legal on Dec. 15, 2006 (on file with Lambda Legal)
    • [20] "ADA Charges Filed with EEOC" (on file with Lambda Legal); Studdert (2002).
    • [21] Sears, B. & Ho, D., "HIV Discrimination in Health Care Services in Los Angeles County: The Results of Three Testing Studies," The Williams Institute, UCLA School of Law, 2006, available at http://www.law.ucla.edu/williamsinstitute/publications/
      Discrimination%20in%20Health%20Care%20LA%20County.pdf
    • [22] Immigration and Nationality Act, Section 212(a)(1)(A)(i)), 8 U.S.C. § 1182(a)(1)(A)(i).
    • [23] Taylor v. Rice, 451 F.3d 898 (D.C. Cir. 2006).
    • [24] See, e.g., Ga. Code Ann. § 16–5-60; Mich. Comp. Laws Ann. § 333.521014.15 (5210); Ark. Code. Ann. § 5–14–123.
    • [25] See Schuster et al. (2005); Burris, S., "Studying the Legal Management of HIV-Related Stigma," American Behavioral Scientist, 42(7), 1225–1239 (1999) ("For many people with HIV, law is less a source of protection than itself a source of significant social risk.").
    • [26] Testimony of Catherine F. Bowman, New York State Assembly Public Hearing on HIV Testing, Counseling, and Informed Consent, Dec. 20, 2006 (on file with Lambda Legal).
    • [27] Laryea & Gien (1993).
    • [28] Vanable et al. (2006).
    • [29] Vanable et al. (2006).
    • [30] Lee, R. S. et al., "Internalized Stigma Among People Living with HIV-AIDS," AIDS and Behavior, 6(4), 309–319 (2002).
    • [31] See Chesney & Smith (1999) (discussing research relating stigma to delays in seeking HIV testing and care).
    • [32] Vanable et al. (2006).
    • [33] Heckman, T. G. et al., "Emotional Distress in Nonmetropolitan Persons Living with HIV Disease Enrolled in a Telephone-Delivered, Coping Improvement Group Intervention, Health Psychology, 23(1), 94–100 (2004) (discussing studies with these findings).
    • [34] Heckman et al. (2004).
    • [35] Leserman et al, "Impact of Stressful Life Events, Depression, Social Support, Coping, and Cortisol on Progression to AIDS," American Journal of Psychiatry, 157(8), 1221–1228 (2000).

Today, more than one million people nationwide are living with HIV, and tens of thousands of new infections occur each year. People living with HIV continue to face widespread discrimination in employment, health care, housing, parenting, immigration, criminal justice and many other areas of life. Lambda Legal uses impact litigation, advocacy and education to combat bias and stereotypes and to ensure that people living with HIV are treated fairly.

Eight states (New Jersey, Maine, Illinois, California, Minnesota, New Mexico, Rhode Island and Washington), Washington D.C., and many cities and counties explicitly prohibit employment discrimination on the basis of gender identity and expression. While no federal law explicitly prohibits employment discrimination on that basis, courts increasingly interpret the federal law banning sex discrimination to protect transgender employees who are discriminated against for failing to conform to sex stereotypes. Other courts have applied state non-discrimination laws to transgender employees as well. As a general rule, remember that the law in this field is evolving, and employers are not always aware of advances in the courts. Lambda Legal encourages transgender employees to consult with us or other attorneys about relevant legal developments.

Transitioning on the Job

Prepare carefully. Read your company's nondiscrimination policy and find out if laws in your area prohibit discrimination based on gender identity or expression. Decide which person in your workplace you will come out to first; your choices might include a Human Resources representative or a supervisor. Your decision should take into account the general climate of your workplace and who your allies might be. Approach people in a spirit of professionalism and teamwork.  Remember that you will need to notify your employer if you legally change your name.  Keep records at home of all workplace conversations that you have about your transition.

Your coworkers should be informed of your transition in whatever way is most comfortable, consistent with any work rules and professionalism. Some transgender employees work with their employers to draft and circulate a memo or email about their transition. Other employees have a meeting with their coworkers. You may also recommend diversity training.  Talk with your employer about which approach makes sense.

Restroom Access

The law requires your employer to provide a restroom for all employees.  However, your supervisor may use assumptions about other employees' feelings as an excuse to deny you gender-appropriate restroom access. In many workplaces, transgender employees use the restroom that corresponds to the gender they identify as, which helps to maintain consistency throughout the transition process. Single-occupancy unisex restrooms with doors that lock may be another option. State or local laws might affect how your company handles restroom issues. In 2002, a federal appellate court endorsed the right of an employer to allow employees to use gender-appropriate restrooms despite complaints from another employee.

Dress Codes

Older decisions have held that employers have the right to implement and enforce dress codes with different requirements for male and female employees. However, numerous courts have held that sex-specific dress codes must not place significantly unequal burdens on men and women. To the extent that it is comfortable for you, dress in accordance with the dress code requirements applicable to the gender to which you are transitioning.

Crossdressing on and off the Job

If you decide to come out as a crossdresser to your coworkers but do not intend to crossdress at work, be aware that confidentiality cannot be guaranteed.  If you do crossdress at work, avoid clothing that would be considered inappropriate for employees of the gender you present as. One federal court has gone as far as upholding the termination of an employee who crossdressed off the job. Even workplace non-discrimination policies that include gender identity and expression might not protect you against such unfair treatment.

Gender-Nonconformity on the Job

If you are gender-nonconforming or androgynous, a unique set of questions arises: Do you want your coworkers to refer to you by a different name or pronoun than the one they currently use?  Which bathroom will you use? How will you address any questions or uncertainty about your gender identity? Consider how much information to disclose to your coworkers and supervisors, and determine the answers to questions like these by assessing the atmosphere and safety of your particular workplace. Then talk with your employer and workplace allies.

Employee Resource Groups

If your company has a lesbian, gay, and bisexual employee resource group that is not transgender-inclusive, talk to the group's leaders about amending the mission statement. Policies that protect gender identity and expression prevent companies from forcing employees to fit rigid sex stereotypes and create a more accepting workplace for all. Consideration of the needs and issues of transitioning employees is the emerging best practice in the workplace. For example, over one hundred and forty private corporations have written non-discrimination policies covering gender identity and/or expression in their employee handbooks.

For more information, contact one of the Lambda Legal Help Desks.

Excerpt:

"The Centers for Disease Control and Prevention (CDC) in September 2006 issued new recommendations for expanded testing of people for HIV. We support the CDC's goal of increasing the numbers of people living with undiagnosed HIV who get tested, so that they will learn their status and get into care earlier. Increasing access to HIV testing and care will serve well both the public health and the individuals who are infected. Ensuring that those who are tested get into care is vital not only for the individual, but to protect the public health."

Excerpt:

"Increasing the numbers of people living with undiagnosed HIV who get tested, so that they will learn their status and get into care earlier, has our support. But expanded testing should be done with specific, written consent and after some counseling, for the reasons summarized below...."

Excerpt:

"In September 2006, the Centers for Disease Control and Prevention (CDC) published updated guidelines on voluntary HIV testing in health care settings. The CDC now recommends that medical providers offer all persons ages 13 to 64 voluntary HIV testing without risk assessments as a routine part of medical care. We agree that increasing access to testing and care is a critically important goal. Far too many people do not know their HIV status, and we support efforts to help people living with undiagnosed HIV learn their status and gain access to necessary care and support services...."

Excerpt:

"Because an estimated 500,000 people with HIV are not in regular care and an estimated 1 in 4 people with HIV do not know that they have HIV, there are forceful and compelling arguments for HIV policy change on the federal and state levels. With its revised recommendations for HIV testing in health care settings, the federal Centers for Disease Control and Prevention (CDC) rightfully seeks to expand testing in the U.S. As health care providers, government entities and others consider whether and how to implement the CDC's revised recommendations, they should consider the persistence of HIV stigma and discrimination. Although HIV stigma should not prevent the expansion of testing efforts, stigma is a significant factor that must be considered in any HIV policymaking. Contrary to some recent assertions, the social risks of HIV diagnosis are still multiple and significant. Because HIV stigma and discrimination continue to have a forceful impact on people with HIV, policymakers must consider how stigma impacts any intervention and how any intervention promotes or attacks stigma...."

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