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The Legal Issue Facing People Living with HIV/AIDS
that cannot be solved by a lawyer. Michigan HIV News, Fall 2000 Issue
by Kendra S. Kleber JD There are many legal issues facing people living with HIV or AIDS that lawyers can help with: confidentiality problems; medical records privacy; access to medical care and insurance and financial services; discrimination by employers, landlords, mortgage lenders, school administrators, classroom teachers. But all of these legal issues have a single root cause, stigma, and lawyers can’t touch it. Stigma is the most significant legal problem facing people infected with HIV, and as far as infectious diseases specifically and disabilities generally, I submit that it is the most important public health problem facing Michigan today. Stigma is a fear issue, and stigma is a self-esteem issue. Stigma is a two-way street: both the infected and the affected suffer. Stigma is a social disease, and the law and public health must address it but so must our larger society. We can’t just outlaw fear, and outlawing bad behavior without addressing the cause of it will never be completely successful. Discrimination is a natural reaction to fear. Stigma prevents - actively bars - success in prevention, care, treatment, harm reduction, risk reduction and public education about health. Stigma prevents successful public health measures and negates public health initiatives. If public health activities in Michigan succeed at all, and there is ample reason to believe that they do, it is absolutely despite the stigma that surrounds the very topics and concepts that public health must address. To pretend otherwise is foolhardy. The fear of dying, fear of learning how sick one is or what the prognosis is, fear of truth, fear of disclosure, fear of discrimination, fear of failing to simply get the help needed: these things prevent testing, care, treatment, and thoughtful risk reduction. Small towns, rural communities, community-based care providers, gossipy staff: these things make fear of disclosure and fear of discrimination a reasonable consideration. But unlawful disclosure and unlawful discrimination can occur anywhere. The fear of interacting with someone who is different; fear of facing a patient who needs care we do not know how to provide; fear of transmission/contagion; fear of being branded as a provider who treats those who others fear: these things make fear a part of providing care. And they can occur anywhere, to any provider, at any level or facility or area of specialty. Too often the result is lost confidence, diminished self-worth, lost faith, lost self-respect. This hopelessness is a public health problem because people who do not have hope for their future, their health and their importance to the rest of the world will be hard-pressed to see the importance of getting care, getting jobs, getting out, and moving forward. An introverted, fearful and hopeless person will have difficulty continuing to participate in their life, work, family, community. By the same token, difference and diversity are means by which human beings, by our nature, classify and recognize each other. We place ourselves in the social food chain by how we perceive that we stack up against others. When we are confronted with a person who is ill, or disabled, or different in some other way that we have been conditioned to believe makes them inferior, our own self-esteem is boosted. Perhaps subconsciously, perhaps more overtly: but if a provider operates from a philosophy that says they are superior to those they treat or care for, then the patient’s fears of discrimination are not unfounded. And if one person with a difference views another person with a difference as somehow inferior, then there can be no trust and no mutual solutions to their shared problems. In this way, stigma creates conflict between sub-groups of people living with HIV or AIDS, for example. Stigma is a legal problem, because when these issues are magnified and overt to the point that civil rights are trampled or compromised, then laws may be broken. And if a person is injured to a degree that exceeds what they will tolerate, that is if they feel more aggrieved by the injury than they feel limited by their own fear and hopelessness, then they may seek a legal remedy for their injury and a lawsuit can result. Avoiding legal problems involves knowing that some law applies to a situation. But first and foremost, avoiding legal problems related to illness and disability involves the very same act that is necessary to make public health more successful: reduce the stigma surrounding illness and disability. A provider who is not fearful is better prepared to serve his or her clients. And a client who has confidence in her providers, who does not fear getting care or how she will be cared for or what may happen because she is getting care, is far more likely to be willing to be tested for illness, to seek care, to respond to prevention efforts, and to participate in efforts to reduce harm to herself and her community. Stigma. Lawyers can’t solve it: we can only address what happens when people act from fear and hurt each other. The bigger problem takes a far bigger solution, and it won’t be solved in court. (c) 2000 Kendra S. Kleber for Michigan Advocates Exchange, Inc. Michigan Advocates Exchange, Inc. 48751 I94 South Service
Drive, Suite 304 Belleville, Michigan 48111 (888)MAX-3660 |
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