J Edward Shaw Part I

A couple of weeks ago I met Ed Shaw who is quite a unique man. There is so much to say about him that I decided to write two articles about him. I will tell you about Ed's past and how he got to where he is today; later I will focus more on his activism and volunteer work.

A Long Time Survivor

Ed Shaw was diagnosed with HIV in August 1988, at the age of 47. During that period he had a lot of acquaintances and friends that were hospitalized, so he decided to take an HIV test. He did not know much about the virus. During the 80s HIV was seen as a "white gay men disease". Ed felt he had nothing to worry about. Two weeks after getting tested, he found out he was HIV positive. The news felt like a death sentence; he never thought in his wildest dreams that he would live passed the age of 48. Little did he know; today he is 70 years old and has lived with the infection for more than two decades.

After learning his diagnosis, Ed shifted to what he calls "a panic mode". He lived in denial, ignorance and isolation. Ed took no medication, from between 1988-1993; his life was driven by drugs and alcohol abuse, a disease that impacts so many along with however promiscuity and other ill-conceived plans. He had given up on his life, spent all his savings and would not tell anyone about his HIV status. That destructive behavior ended when Ed was hospitalized in 1993. At the hospital he met a counselor who told him straight up he had AIDS. This incident opened up his eyes and he started asking questions. Slowly Ed started to build trust for the medical establishment and began to reeducate himself about the disease. This knowledge is something he has continued to share with others. Ed has spent a lot of time advocating for HIV/AIDS prevention. He told me that ever since he went to his first HIV meeting back in 1993; activism has been a constant and sustaining part of his life.

Aging with the Virus

Ed told me you have to make the right decisions in order to live a long life with the virus. He had to make a lot of changes in the way he was living. Importantly, his family and friends supported him. He said that it is very important not to give up, even when coping with HIV it feels very hard. Despite his busy schedule, he makes sure to take time off to enjoy life. He has found new interests and has replaced the things he cannot do anymore.

I asked Ed why he thinks there is a rise in HIV/AIDS diagnoses among older adults and seniors. Firstly, Ed thinks there are older adults who have HIV, but have not been diagnosed. The reason for this may be that many misdiagnosed signs of HIV/AIDS are the aches and pains of normal co-morbidities of aging. Older adults are less likely than younger people to get tested or for that matter use condoms. Older adults are also less likely than younger people to talk about their sex lives or drug use with their doctors. Doctors rarely test older people for HIV/AIDS and therefore may prescribe medications for an ageing morbidity as opposed to HIV medications. Furthermore, doctors are less likely to ask older patients about their risky sexual behavior and or drug use.

Beginning in 1993, HIV/AIDS awareness has been one of Ed's top priorities. Over the past 15 years he has spent hours and hours on activism and education. All though Ed has been targeting older adults and seniors through his volunteer work he thinks it is very important to be as inclusive as possible. "We are all in this together". He strongly believes in an inter-generational approach. "HIV affects everyone and does not discriminate against gender, race and ethnicity, or where one lives and of course age". Ed underlines the importance of reaching family members and making sure everyone hears the message about how to prevent HIV/AIDS.

Next week I will tell you more about some of Ed's current projects.

J Edward Shaw

Sanna Klemetti

s.klemetti@globalaging.org

The Graying of AIDS

This week I spoke with Katja Heinemann, Project Director and Visual Journalist, and Naomi Schegloff, Project Co-Director and Writer, of a project called “The Graying of AIDS.” Katja first produced it for Time Magazine in 2006, as both a photo and multimedia essay to draw attention to the aging demographics of people living with HIV and AIDS. Later, many persons wanted to use her essay for educational purposes. An Open Society Institute Documentary Photography Project grant provided the seed funding that allowed Katja to take the Graying of AIDS to the next level. Together with Naomi, they launched a three-pronged campaign designed to increase sensitivity and awareness about the issues confronting people over 50 years at risk for, or living with HIV and AIDS.

Before the “Graying of Aids,” Katja worked on a project about teenagers in the USA who live with HIV. Katja believes that modern treatments lead many to think the epidemic is over and that it’s not a big problem inwealthier countries. Katja wants to show that it is not over. However, many people in the USA do not get treatments for their disease. The stigma associated with the disease is still a huge problem. Katja and Naomi strongly believe that more people need to become more educated about this issue.

“The Graying of AIDS” has found different channels to share their message. The team focuses on informing older adults, their care providers and the general public. A big part of the website draws on stories that older adultstell about their lives with HIV and AIDS. These long time survivors help dispel the knowledge gap in our communities. “The Graying of AIDS”is also a public health project. Experts including older adults living with the virus, care providers, researchers, and activists carefully review the work. Katja and Naomi also collaborate with students from the UNC School of Journalism and Mass Communication and the Art Center College of Design Matters Program creating art and information exhibitions about the Graying of AIDS.

A Designer Mug

I asked Katja and Naomi about their future goals for “The Graying of AIDS.” The project continues; they add to their website as they go. Katja and Naomi both pointed out the importance of bringing in different perspectives by collaborating across disciplines. Together they offer two perspectives. They recognize that working with people from other fields will have a bigger impact in reducing the stigma and educating people. Their ultimate goal is to co-ordinate care, engage older adults, caregivers and the community to help people connect with each other’s humanity.

Please take a look at the Graying of AIDS website!

http://www.grayingofaids.org/

s.klemetti@globalaging.org

Second Session of the United Nations Open-Ended Working Group on Ageing (August 2011)

During my three-month internship at GAA, I had the chance to observe some discussions during the Second Session of the United Nations Open-Ended Working Group on Ageing (OEWG) that was held August 1-4, 2011. The meeting focused on the situation of older persons in a world where longevity and ageism are new features. More, the gathered Member State delegations, experts, and NGOs, were considering whether to proceed further toward a Convention on the Human Rights of Older Persons. In short, is such a binding UN document needed ?

After the opening session, human rights experts explored “Violence and abuse against Older Persons” and “Age and Social Exclusion of Older Persons.” At the Plenary, discussions focused on “Identification of existing gaps at the international level and measures to address them, a topic which concluded the session.

What were my reactions, you might ask. I was a bit surprised by the ambiance in the conference room: very calm and quiet; no applause; no unrest or noisy demonstrators from any part of the room. It gave me the impression that nothing important was going on there and that the people just talked when they had to; this was of course false. I think that all the people in the room were highly involved in older persons’ issue in the world, even those who oppose a Convention or other instrument focused on the Human Rights of Older Persons.

Also, some Member States were very mobilized on the issue. The main speakers who supported a human rights document during the entire week seem to have come from Latin America along with Central America and the Caribbean countries. Unfortunately I did not see many African delegates and noticed few Asian delegations, with the exception of India and China.

I think that these four days succeeded in exploring many different issues faced by older persons in the whole world. Hopefully, a general conclusion has been drawn: the need to discuss today the rights of older persons. Why? First, the world is now starting to face an increasing ageing population, so issues on pensions, dependence and good health are much more visible. Second, the rights of older persons -even though known and recognized by an international and national framework- are not well respected both in emerging and developed countries. Everyone agreed that the UN and citizens everywhere need more research and more data about older persons’ abuses in order to target the biggest issues.

In contrast to the Member States, NGOs argued, in general, for a Convention.

Delegations did not change their positions between the first and the last day of this second session. The countries of MERCOSUR (Brazil, Uruguay, Paraguay, and Argentina), Chile and other Central American Countries strongly argued for a Convention that would provide a fundamental text to insure the respect and implementation of the Rights of Older Persons. For example, Chile argued that a study made by the Advisory Committee of Chile showed that:

- 25% of the population thinks that ageing is being dependent

- A lot of Chileans have negative ideas on ageing

- Some old persons prefer to stay at home, keeping isolated, as they think they are useless to society or even a burden.

According to Chile, the solution is an international process promoting intergenerational awareness. The European Union, China, Japan, US, Russia and New Zealand took the position that the existing non-binding framework protects the Rights of Older Persons and is, in their opinion, sufficient. They all pointed the need to implement the 2002 Madrid International Plan of Action on Ageing and to wait for its UN review in 2012.
However, the great majority of the delegates, NGOs and panelists supported the OEWG and encouraged its continuation. Many seemed to suggest that “Ageing” should be one of the priorities both at national and international level. Also some delegates, such as Switzerland and Canada, and NGOs asked for a Special Rapporteur on the Ageing issue.

The panelists’ presentations varied in quality. I found some really interesting; others more like an advertisement for the group they represented.
I had the chance to hear two great presentations on the situation of older persons in Africa, in different sessions: one about Ghana, the other about Tanzania. Both were really instructive showing problems older Africans face and how their countries try -or not- to solve them. Teresa Minja represented the Tanzania Social Protection Network talked about the shocking cases of persecution older women for “witchcraft” in Africa and, in particular, in her country. Due to traditional beliefs and a confused and unfair inheritance law, older women are sometimes accused of witchcraft and victims of different forms of discrimination (from exclusion and isolation to lynching and killing) as a method to take land “rights” away from widows. Ellen Borkei-Doku Aryeetey represented the University of Ghana tried to evoke all the problems faced by older persons in Africa: income insecurity, competition between young and old persons for scarce resources, lack of interest on the older persons issue in Africa and more.
Himanshu Rath, from the Indian NGO Agewell International, was really interesting as he gave us data and testimonies on the issues older Indians have to face: illiteracy, abuse from family members, in particular, the daughter-in-law, no resources, circumstances that force elders to remain invisible, a gender gap that renders many old women powerless and poverty-stricken. He pointed to these quotations: “Loneliness and the feeling of being unwanted is the most terrible poverty” (Mother Teresa) and “It is good to swim in the waters of tradition, but to sink in them is suicide” (Gandhi). Finally, he urged consideration for a UN Convention to assure the rights of older persons.
Oldrich Stanek, from the Czech organization, Zigo 90, that works with the European Union, gave a clear presentation during the “Age and Social Exclusion of Older Persons” session. He underlined that there were three types of exclusion older persons face: social, financial and from the labor market. He gave proposals to thwart this situation and presented two reports he had made to a member of power in the Czech Republic and European Union and as a guide of civil dialogue.
On the session on “Violence and Abuse against Older Persons,” the first two presentations had no direct link with the subject. Indeed, Claudio Grossman, from the Committee against Torture, just wondered about the need for another Convention while citizens already have the Human Rights Declaration with all the fundamental rights. Then, the presentation by Keren Fitzpatrick, an Asia Pacific Forum member, gave a general overview all the institutions and jurisdictions the Forum embraces.

Finally, during the last session, Marie Keirle, a delegate from France, synthesized the work and presentations of this week. She clearly identified nine issues on older persons:

- Need to discuss older persons’ issue now as the world is facing longevity and ageism; and many governments do not consider it an important in their states’ agendas;

- Existing discriminations (age and gender, economic situation, health, rural/urban) and their consequences on employment, access to health, public services Stigmatization and stereotypes, such as witchcraft;

- Poverty and financial abuse;

- Maltreatment from family members and employees in nursing homes;

- Physical and mental health, with focus on Alzheimer’s that has to be a priority issue according to member states, NGOs and panelists;

- Social exclusion;

- Education (illiteracy…);

- Equality before the law.

She also pointed, and I share her approach, what we need now:

- A partnership approach;

- Reliable data;

- A public debate and a political will on the subject,

- An intergenerational solidarity;

- A better access to services including health care;

- A work on the image the society has of older persons.

-Fanny Duval, Sciences Po Rennes, f.duval@globalaging.org-