Monday, January 12, 2009
Stigma and discrimination: some thoughts
Stigma is the taint, discrimination the ugly scar. What about self-stigma ? I was at a drop-in centre for recovering Injecting Drug Users (IDUs), a couple of days back. My co-researcher B is a rcovering IDU and a founder of a support group called Hope Foundation, and it was through his contacts that we are doing research on IDUs, and their risky behaviour etc., etc. As we walked in, somebody came up and hugged B. Let's call him X. (For those of you new to this area, we are not disclosing identities because of confidentiality reasons). X was the most emaciated human being I have ever met. His skin seemed stretched over his frame in a way that looked alarming. I wanted to reach out and wrap him up. It was then that I noticed his eyes. Clear, focused, and smiling. I felt suddenly tearful, because his eyes said more about the need for support grpoups and drop-in centres than any of my research could have done. He looked at me with understanding, and I suddenly saw my work in an entirely different light. My elaborate structured questionnaire on the knowledge and practices of IDUs became redundant in that moment. Stigma and discrimination still existed, but X had overcome the most important stigma of all - self-stigma. And that would be key in his breaking through his addictive behaviour.
Media Reporting on HIV-infected blood as a murder weapon
Media reporting can and often is insensitive. The Times of India ran an article sometime last week, talking about how 'spurned perverts' infect their hated ones with HIV-infected blood. We like the fact that you called them perverts, TOI, but was it necessary to give the details. Many wannabe perverts are probably sharpening their syringes, having taken notes from your article. I am not a news person, and I don't have any suggestion for how you should report this kind of news. But it should not be anything that puts any such dangerous idea in anybody's head.
Let me draw your attention to the photograph on this blog site. I believe I took this on 1 Dec 2008. At a candlelight vigil to celebrate World AIDS Day. Take a good look at the picture, please, because I have a question for you. I know all the people in the pic well. You might not. Can you tell me which ones are HIV-positive, recovering addicts, homosexual, or none of the above ? You don't have an answer, do you ? How can you ? The people in the picture don't look any different from you or me, and certainly not out of the ordinary. In fact, they seem to be having a perfectly normal celebration. Look again. And again and again. Nothing will change. Except maybe your perspective has. If yes, send invites to this blog/post on to everyone you know. A small right-click for you, a giant step for human rights. Thanks.
Friday, January 9, 2009
MIgration & HIV
on 7-8 January a regional consultative meeting was held in CYSD on Migration & HIV, this meeting was facilitated by SPYM a organization from New Delhi and financed and supported by UNDP, the suggestions and findings from this workshop would feed into the National level consultative meet on Migration & HIV in New Delhi. Plans are to conduct four such meeting, two have already been conducted and two more will be conducted shortly in other states. The recommendations and findings of these workshop will feed into the national level workshop and a strategy will be developed by Government of India to address Migration and HIV. A good initiative and it is needed, as migration especially distress migration needs to be addressed at all levels.
Heights of insensitivity in the workshop:
A high ranking gentleman of Government of Orissa invited to be the chief speaker on Day II spoke of the following:
a. Educated men going to foreign shores and no statistics on the number of them leaving our shores.
b. People forge data on distress migration and inflate it. As a result this is questioned in the assembly and departments have trouble answering it.
A professional Lady who is currently working in the mainstreaming of HIV/AIDS unit, Government of Orissa spoke of how mainstreaming does not only address migration and mainstreaming is not the answer for all problems related to migration and she was there in the workshop because she was working in mainstreaming unit and was asked to participate in the process.
what was good about the workshop:
1. People are taking distress migration seriously and actually thinking of ways to address issues related to distress migration.
2. This was a forum where NGOs /CBOs were actually asked for their opinion and what they feel can be done.
what should raise our concern:
1. Poverty and livelihood are still major concerns and this needs to be addressed on a priority basis
2. People working with the Government or people closely allied to it still feel that everything cannot be addressed, and they are not responsible for addressing migration and issues related to it.
3. NGOs data on migration is still not recognized, neither is there any effort by Government to collect data on migration.
Heights of insensitivity in the workshop:
A high ranking gentleman of Government of Orissa invited to be the chief speaker on Day II spoke of the following:
a. Educated men going to foreign shores and no statistics on the number of them leaving our shores.
b. People forge data on distress migration and inflate it. As a result this is questioned in the assembly and departments have trouble answering it.
A professional Lady who is currently working in the mainstreaming of HIV/AIDS unit, Government of Orissa spoke of how mainstreaming does not only address migration and mainstreaming is not the answer for all problems related to migration and she was there in the workshop because she was working in mainstreaming unit and was asked to participate in the process.
what was good about the workshop:
1. People are taking distress migration seriously and actually thinking of ways to address issues related to distress migration.
2. This was a forum where NGOs /CBOs were actually asked for their opinion and what they feel can be done.
what should raise our concern:
1. Poverty and livelihood are still major concerns and this needs to be addressed on a priority basis
2. People working with the Government or people closely allied to it still feel that everything cannot be addressed, and they are not responsible for addressing migration and issues related to it.
3. NGOs data on migration is still not recognized, neither is there any effort by Government to collect data on migration.
4. The needs of the migrants are not taken as a issue either at the destination(place of work) or at the source(home). As a result you will find a increase in the number of cases reported in the media on sexual & physical abuse, increase of HIV/AIDS, other diseases like RTIs/STIs, suicides, exploitations, physical abuse, killings etc.
Attending workshops like this show us how inadequate our work is and how chaotic our world is.
Attending workshops like this show us how inadequate our work is and how chaotic our world is.
Monday, January 5, 2009
Telephone Help Line
Speaking about Reproductive & Sexual Health &HIV/AIDS (SpARSHHA) is a innovative toll free telephone help line, which primarily focuses on clarifying doubts and issues pertaining to Sexual Reproductive Health, Sexual Health and HIV/AIDS.
the TOLL FREE Help Line number is 1 800 345 6769.
The help line is currently active on Tuesdays, Wednesdays and Thursdays from 10.00.a.m.-- 4.p.m. and the calls can be placed from any remote corner of Orissa.
This is a independent initiative which runs on its own through independent philanthropic donations and has given a voice to all those marginalized groups i.e. sexual minorities, PLHIVs, and also adolescents and youths. The helpline has been open since April 2009, and till date it has received 32 questions these questions range from queries on size and shape of sexual organs to unwanted pregnancy to questions on sexual orientation and how to know about one's own HIV status.
The toll free help line is managed by the consortium members of ODISHA-One. The consortium members are "Hope Foundation" a CBO working on Injecting Drug Users, Sakha, a CBO working on Sexual Minorities, KNP+, a CBO comprising of People Living with HIV/AIDS and idpr, a technical assistance agency. SpARSHHA also takes volunteers and trains them in counseling. this innovative initiative is yet to advertised and publicized.
the TOLL FREE Help Line number is 1 800 345 6769.
The help line is currently active on Tuesdays, Wednesdays and Thursdays from 10.00.a.m.-- 4.p.m. and the calls can be placed from any remote corner of Orissa.
This is a independent initiative which runs on its own through independent philanthropic donations and has given a voice to all those marginalized groups i.e. sexual minorities, PLHIVs, and also adolescents and youths. The helpline has been open since April 2009, and till date it has received 32 questions these questions range from queries on size and shape of sexual organs to unwanted pregnancy to questions on sexual orientation and how to know about one's own HIV status.
The toll free help line is managed by the consortium members of ODISHA-One. The consortium members are "Hope Foundation" a CBO working on Injecting Drug Users, Sakha, a CBO working on Sexual Minorities, KNP+, a CBO comprising of People Living with HIV/AIDS and idpr, a technical assistance agency. SpARSHHA also takes volunteers and trains them in counseling. this innovative initiative is yet to advertised and publicized.
Saturday, January 3, 2009
Lata's Story
Name: Lata (name changed)
Age: 27
Marital Status: Widowed.
Children: Two a 12 year old Daughter and a 9 year old son.
Her Story
In 2004, Lata’s husband 'Jay Kumar' had to be hospitalized, reason he had a severe bout of diarrhea which had dehydrated him. Jay Kumar was taken care of in the hospital at Cuttack by his older brother. Two days after Jay Kumar's hospitalization Lata was taken to the hospital to get her blood tested, nobody talked or explained to her why her blood was being tested. Lata was taken to the hospital twice, and soon after her report was delivered, everybody’s behavior towards her changed. Her mother-in-law beat her and kicked her out of the house.
She went back to her parent’s house. Lata's brother immediately came to meet her husband and in-laws. Lata’s brother returned back angry and slapped Lata and asked her what sin had she committed and who had she slept with. Lata was shocked, she kept denying. Lata's mother believed that her daughter would never do anything wrong and protected her from her brother’s anger. After three months, Lata's brother-in-law came and asked Lata to come back to the house. When Lata returned, her mother-in-law angrily said,” you have given my son AIDS so you have to serve and take care of him". Lata her husband and her children stayed in a ramshackle hut far from the main house, none of the family members came to her house, she was asked to keep take water from a separate pond, and also asked not to come into the main house. Lata’s family was treated as outcastes.
Jaya Kumar died two months later. Soon after he was cremated, Lata's in-laws asked Lata to leave with her two children. Lata now lives with her parents and tries to make some sense of what has happened. Lata for a long time did not know how she got the disease; she believed for a long time that she was the one who gave the disease to her husband. In 2007 she started working with a NGO and realized that she had not given her husband the virus, and her truck driver husband could be the one to give her the virus. The NGO took her and her children to the nearest VCCTC and she got her children tested and also got herself tested, her test came back positive whereas her children were negative. She decided to demand a share of her husband’s property from her in-laws who predictably refused. With the support of the NGO, Lata fought tooth and nail with her husband’s family for her husband's share of the property and finally managed to get his share for the children.
This is a true incident and certain questions that this incident always raises are:
1. How can a hospital test blood without counseling a client?
2. Why are certain quality checks which are mandatory and non negotiable not being promoted in hospitals and by Government which would support and promote the rights of clients?
3. Why are health care providers so callous about the rights of the clients?
I always use this incident in my trainings as we rarely talk in our trainings about ways and key steps to be undertaken to establish strong referral linkage mechanism which would promote spouse/partner counseling. This is important and imperative as our counselors are not well versed and trained in spouse/family counseling nor do they promote it as much as it should be done.
Age: 27
Marital Status: Widowed.
Children: Two a 12 year old Daughter and a 9 year old son.
Her Story
In 2004, Lata’s husband 'Jay Kumar' had to be hospitalized, reason he had a severe bout of diarrhea which had dehydrated him. Jay Kumar was taken care of in the hospital at Cuttack by his older brother. Two days after Jay Kumar's hospitalization Lata was taken to the hospital to get her blood tested, nobody talked or explained to her why her blood was being tested. Lata was taken to the hospital twice, and soon after her report was delivered, everybody’s behavior towards her changed. Her mother-in-law beat her and kicked her out of the house.
She went back to her parent’s house. Lata's brother immediately came to meet her husband and in-laws. Lata’s brother returned back angry and slapped Lata and asked her what sin had she committed and who had she slept with. Lata was shocked, she kept denying. Lata's mother believed that her daughter would never do anything wrong and protected her from her brother’s anger. After three months, Lata's brother-in-law came and asked Lata to come back to the house. When Lata returned, her mother-in-law angrily said,” you have given my son AIDS so you have to serve and take care of him". Lata her husband and her children stayed in a ramshackle hut far from the main house, none of the family members came to her house, she was asked to keep take water from a separate pond, and also asked not to come into the main house. Lata’s family was treated as outcastes.
Jaya Kumar died two months later. Soon after he was cremated, Lata's in-laws asked Lata to leave with her two children. Lata now lives with her parents and tries to make some sense of what has happened. Lata for a long time did not know how she got the disease; she believed for a long time that she was the one who gave the disease to her husband. In 2007 she started working with a NGO and realized that she had not given her husband the virus, and her truck driver husband could be the one to give her the virus. The NGO took her and her children to the nearest VCCTC and she got her children tested and also got herself tested, her test came back positive whereas her children were negative. She decided to demand a share of her husband’s property from her in-laws who predictably refused. With the support of the NGO, Lata fought tooth and nail with her husband’s family for her husband's share of the property and finally managed to get his share for the children.
This is a true incident and certain questions that this incident always raises are:
1. How can a hospital test blood without counseling a client?
2. Why are certain quality checks which are mandatory and non negotiable not being promoted in hospitals and by Government which would support and promote the rights of clients?
3. Why are health care providers so callous about the rights of the clients?
I always use this incident in my trainings as we rarely talk in our trainings about ways and key steps to be undertaken to establish strong referral linkage mechanism which would promote spouse/partner counseling. This is important and imperative as our counselors are not well versed and trained in spouse/family counseling nor do they promote it as much as it should be done.
Thursday, January 1, 2009
Must Read Books on HIV/AIDS
Two books that have really touched my soul and I am constantly promoting for all to read are:
1. Sex Lies and AIDS by Siddharth Dube
2. AIDS Sutra edited by Negar Akhavi in collaboration with Avahan India AIDS Initiative, Bill & Melinda Gates Foundation.
Sex Lies & AIDS: by Siddharth Dube was a turning point for me, it was published in 2000 and breaks many stereotypes. This book for the first time focuses on vulnerability and why it is important for all of us to come together to fight the disease. it speaks of the Government programmes, the apathy of the respective states in handling a epidemic of this proportion
AIDS Sutra: Untold Stories of India, published in 2008 has a foreword by Amartya Sen and 16 award winning authors write about the epidemic it not only focuses on how the Devdasis, hijras, truck drivers and sex workers are grappling with the disease, but it also focuses on HIV among the affluent and the privileged. These books will give us an insight on the need for empathy and compassion.
1. Sex Lies and AIDS by Siddharth Dube
2. AIDS Sutra edited by Negar Akhavi in collaboration with Avahan India AIDS Initiative, Bill & Melinda Gates Foundation.
Sex Lies & AIDS: by Siddharth Dube was a turning point for me, it was published in 2000 and breaks many stereotypes. This book for the first time focuses on vulnerability and why it is important for all of us to come together to fight the disease. it speaks of the Government programmes, the apathy of the respective states in handling a epidemic of this proportion
AIDS Sutra: Untold Stories of India, published in 2008 has a foreword by Amartya Sen and 16 award winning authors write about the epidemic it not only focuses on how the Devdasis, hijras, truck drivers and sex workers are grappling with the disease, but it also focuses on HIV among the affluent and the privileged. These books will give us an insight on the need for empathy and compassion.
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