Wednesday, April 6, 2016

Impairments_01

AIDS/HIV
First cases reported in 1981.  Today there are more than 30 million people living with AIDS worldwide.
It may be acquired or congenital, usually being passed on from the mother perinatally.  Of the 2.5 million diagnosed with AIDS, 20% will die before the age of 4.  AIDS itself does not kill people.  It compromises the immune system and allows other diseases to thrive.  The most common problems that lead to death are pneumonia and cytomegalovirus disease.  Children may grow into adolescence before exhibiting major symptoms, but will have developmental delay in several areas.  Additionally, they experience social isolation, stigma, rejection, discrimination.  All of these lead to psychological distress, self-doubt and often lead to lost opportunities to socialize with others of the same age.
Made famous in the USA by the case involving Ryan White.  Ryan had hemophilia and he got AIDS due to a tainted blood transfusion.  This was the time when there was not adequate screening to identify contaminated blood.
After getting well from his initial pneumonia, which precipitated his diagnosis (December, 1984), Ryan was prevented from attending his local school due to fear of being contagious.   This lead to a fight over the current state of medical knowledge and the current state of social stigma.   Ryan died 5 years later just before graduating from high school.
An overview of Ryan’s story: http://channel.nationalgeographic.com/channel/the-80s-the-decade-that-made-us/videos/aids-activist-ryan-white/
The actual news conference held the day that Ryan was allowed to return to school: http://www.history.com/videos/history-uncut-ryan-white-1986#history-uncut-ryan-white-1986
The Ryan White Story, a TV Movie made about his story.  He even has a cameo appearance in the movie:
http://www.youtube.com/watch?v=yeXzWG4uskc
At the time, people who got AIDS were known to be from two main groups, people who engaged in homosexual sex and drug users who shared contaminated needles.  Both of these groups were highly stigmatized due the idea that they exhibited “blemishes of character” as described by Goffman in his book Stigma.  In other words, society blamed those who got the disease for their own poor judgment and character, so little money was spent researching AIDS and many religious groups spoke openly that AIDS was God’s punishment for these people.
There was a great public debate about the “innocent” victims like Ryan, but nevertheless, the stigma associated with the disease took a long time to deal with.  Ryan was befriended by a diverse group of people from Ronald Reagan to Elton John and Michael Jackson.
In 1991 Magic Johnson retired from the NBA and announced he was HIV positive.  At the time he was perhaps the most well-known professional athlete in the world.
In (1993) the movie Philadelphia starring Tom Hanks attempted to illustrate the social rejection and fear that accompany AIDS.  In this film, Tom Hanks’ character is gay and is not portrayed to be an innocent victim of the disease as Ryan was.  The movie tried to depict that social discrimination is wrong, no matter what the cause of the disease and that people who are gay are entitled to love and be loved.
See the trailer here: http://www.youtube.com/watch?v=cl4B9AU45P4
Not long after this dialogue began, it was found that AIDS was also spread among heterosexual couples and this also changed the perception of who was vulnerable to the virus. 
• Is there still a strong stigma associated with AIDS? 
• Is it still thought to be something brought about through bad choices?
• Is the disease still linked strongly with being gay? 
• What has come to your attention recently for the good or bad in this very public debate? 
There are approximately 1.1 million people in the USA living with AIDS.  Another good source of information provided by the US Government can be found here: http://www.youtube.com/user/aidsgov
TR Activities and interventions:
• Maximize wellness and health
• Minimize risk behaviors/transmission of the disease to others
• Coping with a progressive disease that may lead to death
• Promote and facilitate developmental milestones in children
• Alleviate the self-worth gap that arises from lost ability to perform roles like parenting or employment
• Reduce feelings of isolation, guilt, stigma, and learned helplessness
TR interaction or service locations:
• Inpatient acute care
• Home care
• Community recreation centers
• Public schools
• Hospice
• Community clinics
• Long-term care centers
• Camps
• Prisons
• Substance abuse centers
• Foster care
Things to remember:
 Disclosure of anyone’s AIDS or HIV status would be a violation of confidentiality.
Injuries could happen in almost any environment associated with play.  First aid policies must be followed to prevent accidental transmission or unreasonable exposure.
Infection control policies must be followed at the agency facilitating the contact.  This extends to toy sanitization, disposal of soiled items, storage of laundry etc.


Elton John's letter to Ryan White, 20 years after his death from AIDS, by Elton John (April 25, 2010)

Twenty years ago this month, you died of AIDS. I would gladly give my fame and fortune if only I could have one more conversation with you, the friend who changed my life as well as the lives of millions living with HIV. Instead, I have written you this letter.
I remember so well when we first met. A young boy with a terrible disease, you were the epitome of grace. You never blamed anyone for the illness that ravaged your body or the torment and stigma you endured.
When students, parents and teachers in your community shunned you, threatened you and expelled you from school, you responded not with words of hate but with understanding beyond your years. You said they were simply afraid of what they did not know.
When the media heralded you as an "innocent victim" because you had contracted AIDS through a blood transfusion, you rejected that label and stood in solidarity with thousands of HIV-positive women and men. You reminded America that all victims of AIDS are innocent.
When you became a celebrity, you embraced the opportunity to educate the nation about the AIDS epidemic, even though your only wish was to live an ordinary life.
Ryan, I wish you could know how much the world has changed since 1990, and how much you changed it.
Young boys and girls with HIV attend school and take medicine that allows them to lead normal lives. Children in America are seldom born with the virus, and they no longer contract it through transfusions. The insults and injustices you suffered are not tolerated by society.
Most important, Ryan, you inspired awareness, which helped lead to lifesaving treatments. In 1990, four months after you died, Congress passed the Ryan White Care Act, which now provides more than $2 billion each year for AIDS medicine and treatment for half a million Americans. Today, countless people with HIV live long, productive lives.
It breaks my heart that you are not one of them. You were 18 when you died, and you would be 38 this year, if only the current treatments existed when you were sick. I think about this every day, because America needs your message of compassion as never before.
Ryan, when you were alive, your story sparked a national conversation about AIDS. But despite all the progress in the past 20 years, the dialogue has waned. I know you would be trying to revive it if you were here today, when the epidemic continues to strike nearly every demographic group, with more than 50,000 new infections in the United States each year. I know you would be loudly calling for the National HIV/AIDS Strategy that was promised by President Obama but has not yet been delivered. I know you would reach out to young people. I know you would work tirelessly to help everyone suffering from HIV, including those who live on the margins of society.
It would sadden you that today, in certain parts of the United States, some poor people with AIDS are still placed on waiting lists to receive treatment. It would anger you that your government is still not doing enough to help vulnerable people with HIV and populations that are at high risk of contracting the virus, including sexually active teenagers. It would upset you that AIDS is a leading cause of death among African Americans.
It would frustrate you that even though hundreds of thousands of HIV-positive Americans are receiving treatment in your name, more than 200,000 don't know their HIV-positive status, largely because a lingering stigma surrounding the disease prevents them from being tested. It would disappoint you that many teenagers do not have access to science-based HIV-prevention programs in school, at a time when half of new infections are believed to be among people under 25.
I miss you so very much, Ryan. I was by your side when you died at Riley Hospital. You've been with me every day since. You inspired me to change my life and carry on your work. Because of you, I'm still in the struggle against AIDS, 20 years later. I pledge to not rest until we achieve the compassion for which you so bravely and beautifully fought.

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