To begin with, what is a disability?
A Google web search defines it the following way:
Noun
1. A physical or mental condition that limits a person's movements, senses, or activities.
2. A disadvantage or handicap, esp. one imposed or recognized by the law.
If we accept the definition above, then disability is an umbrella term. It covers impairments, activity limitations, and participation restrictions: impairments are problems in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus a disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. An estimated 10% of the world’s population has a disability. So, is HIV a disability? There are people living with HIV who would say absolutely not. There are people living with HIV that would say yes, HIV is a disability. The answer is it depends.
From a medical scientists perspective, modern-day antiretroviral (ARV) therapy can often improve the health of HIV-positive people with low CD4 counts or a history of AIDS-related opportunistic infections. However, the number of different ARVs available varies between countries as does their affordability. In developed countries with national health schemes, such as Australia, every internationally approved form of ARV is available at minimal or no cost to the consumer. In some slightly less developed countries, such as Thailand, many, but not all ARVs are available but their cost has to be met by the consumer. In developing nations that rely on Global Funding, such as The Philippines, the ARVs are provided free of charge but the number available is limited. Thus the availability of the most effective ARVs used by an HIV+ person to increase the CD4 count and minimize unwanted side effects is influenced by geography and/or financial capacity. Their health outcomes vary accordingly.
At this stage there is no wide spread readily available cure for HIV. We can only be absolutely certain that just one person, so far, has been cured of HIV. This occurred as a result of his being treated for leukemia. He underwent a very debilitating course of chemotherapy but then needed a blood stem cell transplant. A donor who possessed a rare genetic mutation that provided natural resistance to HIV was used. Thus, it is not something that is readily available or advisable as others in a similar position have either been too ill to undergo the procedure, while others couldn’t find matching donors or had other medical issues that prevented it. Thus, at this stage, it is essentially incurable.
So, does this mean that HIV is a chronic condition? A chronic condition may be defined as any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning and requires long term or for life medication. In the case of HIV, this is ARV. However, if a person contracts HIV, this in itself does not necessarily mean that the person can be classified as having a long term or chronic condition as many people live with this virus without knowing they have it and some that test HIV+ can even then maintain a level of health that does not require medication. It becomes a chronic condition if or, as is almost always the case, when ARV, or treatment or prophylaxis for an AIDS related illness is initiated. From then on in it depends on the person, if they are adversely affected on a day to day basis, then their condition may be classed as disabling, depending on the severity of the symptoms. The reality is that an increasing number of opportunistic infections can be cured or prevented by ARV treatment and prophylaxis. However, the potential health consequences of long term HIV infection and ARV therapy have lead to a growing understanding that persons living with HIV or AIDS are also at risk of becoming disabled on a permanent or episodic basis as a result of their condition. Thus, from the point of view of a medical scientist, it may be seen as a condition that is chronic and either permanently or episodically disabling, or not disabling at all.
From a social scientists/sociologists perspective however, having HIV or any other disability or chronic health condition saddles the person with more than just the physical complaint. One has to struggle with the social meaning of it as well. Different societies differ in their ability to accept illness and disability. Those that have trouble accepting it rationally lead to the person affected become stigmatized as a result. Stigma is a common problem among the HIV+ community. It not only affects the HIV+ person, but may extend to include his or her whole family as well. The person, and the family, may be shunned. HIV is viewed, in some societies, and probably by some members of all societies generally, as a moral issue rather than a health issue. In these cases a HIV+ person may be judged as being a bad person who bought it on themselves rather than someone who contracted a retrovirus. Some people may avoid HIV+ people out of fear that they may in turn contract it. Some people who disclose to their future or present employer that they are HIV positive may be discriminated against. They may be told they will not be hired in some parts of the world or they will be let go for a reason that is insupportable. In cases where HIV has developed into AIDS, physical characteristics can be prevalent. Visible weight loss can occur. Some patients may appear to be drawn in the face or have a pale complexion, and sometimes skin lesions can occur on areas of the body such as the face, neck, arms and legs. Areas of thrush can also appear on the tongue or inside of the mouth. Physical signs that alter the appearance can have an impact on sufferers because others may be judgmental or hesitant to approach. When someone find out they are HIV+ it can be difficult for them to start new relationships and, in some cases, maintain existing ones. Being HIV+ means they cannot have penetrative sex with anyone else unless they use protection. For some people, this equates to a loss of intimacy. Some people also sever their ties with someone who is HIV+ because of the emotional strain it causes on the relationship. Social opportunities are denied. Self-esteem suffers and depression often results.
Depression is a serious medical condition that affects thoughts, feelings, and the ability to function in everyday life. It results from abnormal functioning of the brain. The exact causes of depression are currently a matter of intense research. Depression can occur for anyone at any age but it happens more frequently to HV+ people than the general population. Episodes of depression may then be triggered by stress, difficult life events, side effects of medications, or the effects of HIV on the brain. Whatever its origins, depression can limit the energy needed to keep focused on staying healthy, and research shows that it may accelerate a HIV+ persons progression to AIDS.
From a legalistic perspective, it varies from jurisdiction to jurisdiction. Not only does the legal definition of the term disability vary but the extent to which HIV is accepted as a disability also varies. In some jurisdictions, such as Zimbabwe, HIV+ people are non persons with no rights at all. In The Philippines, a HIV+ person has rights but HIV is not recognized as a disability. In other countries, such as the United States, a HIV positive person has rights as a person with a disability and protections from discrimination based on their HIV status. However, the extent to which HIV infection is defined as a disability is under constant review as new ARVs are developed and our understanding of the long term effects of HIV and ARV changes.
A case that occurred in the United States in 1994 highlights the interaction between the scientific, sociological and legal perspectives that occur when determining to what extent HIV is a disability.
It All Started With A Trip to The Dentist
In September of 1994, Sidney Abbott visited the office of dentist Randon Bragdon. This routine visit would spark a controversy that would eventually involve the United States Supreme Court. On that day, Dr. Bragdon refused to fill Ms. Abbott's simple cavity because she admitted to being HIV positive. Ms. Abbott felt she was being discriminated against because of her HIV.
A Disturbing Trend
At the time, Ms. Abbott's experience was just another in a growing number of such discrimination by doctors and dentists refusing to treat HIV positive people. AIDS activists and medical professionals feared that if this mentality were left to spread amongst growing numbers of healthcare professionals, the quality and availability of HIV care would decline thus placing HIV infected people at a definite disadvantage and frankly in grave danger.
The Debate - Was Ms. Abbott's HIV a Disability?
How did Dr. Bragdon justify his decision not to treat Ms. Abbott? The dentist argued that since Ms. Abbott showed no physical signs or symptoms of HIV or AIDS, she was not disabled and therefore was not protected by Federal law. The law Dr. Bragdon was referring to was The Americans with Disabilities Act (ADA), a law that forbids discrimination against people who are disabled.
Ms. Abbott countered that her HIV impacted her ability to reproduced, rendering her disabled. She felt that because she was disabled, Dr. Bragdon's refusal to treat her was in direct violation of the ADA. The Supreme Court agreed. In June of 1998, the High Court stated that people infected with HIV were entitled to protection under the Americans with Disabilities Act, regardless of their symptoms or lack of symptoms. Ironically, if that same argument was made today, Ms. Abbott may have a hard time proving her case since we now know that HIV transmission between mother and child can be prevented by certain ARVs. This would mean that Ms. Abbott's contention that HIV prevented her from reproducing and therefore she was disabled had no medical basis. However, the laws have been changed and now both symptomatic and asymptomatic HIV infected people are protected by the ADA.
I hope readers have found this post interesting.
Get tested, stay healthy and, if you’re HIV+, compliant with your ARV regimen,
Malcolm Brown.
"WE ARE ALL IN THIS TOGETHER.
NO PLHIV is alone with his or her struggle with HIV!"
-Pozziepinoy-
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To begin with, what is a disability?