This the ‘Stigma Chakra’. It’s something Hans developed to illustrate what we see on the DISHA project time and time again.
People are ignorant about HIV. What it is, how it’s transmitted, how to get tested, what it means to be HIV positive, what treatment options are available and so on. No one should be complacent: this lack of knowledge is NOT limited to India.
But the ignorance makes people fearful, leading to huge stigma surrounding the virus. When people encounter someone who is HIV positive, they react with discrimination. This leads to silence: why would you come forward if you might be shunned by your friends and family? People who suspect they may be HIV positive are reluctant to come and get tested. If they do find out they’re HIV positive, they may be reluctant to tell anyone about it. As a result, they may run the risk of spreading the infection to their partner/s.
People living with HIV (PLHIV) often fail to seek medical help when they need it. Time and again, they won’t come forward until they’re at HIV stage IV, clinically known as AIDS. By this stage – needlessly! – it’s too late. Yet by living healthily, treating opportunistic infections promptly and by following a regime of antiretroviral therapy, people can live with HIV for years. It is a chronic treatable condition, like diabetes.
But whereas people can live with HIV, AIDS is fatal. This reinforces the stereotype that HIV equals death… which leads to fear, leading to stigma… leading to discrimination… and so it goes on.
The key is to break the cycle. The enemy of ignorance is knowledge. Make people aware, and you can remove the fear. And the stigma, and the discrimination, and the silence.
Back in the day, Hans and I were sat in a pub somewhere – Goa I think – and we were talking about the need for a car so we could go off on regular jollies.
“What we need is some kind of awareness vehicle for DISHA. Then we could borrow it at weekends.”
“Yeah, just a second-hand Maruti 800. Paint it up and you’re good to go.”
“Or a van. That’d be practical.”
“Yeah, we could do it up like the ‘A Team’ van and everything. You know, black with red trim.”
We returned to our beers.
Fast forward six or seven months, and we’re organising the Wake Up Pune campaign. By sheer coincidence, the campaign colours are black and red. One of the old Deep Griha vehicles is sitting idle, having been replaced recently. Why don’t we revive the old A Team plan?
And lo, the DISHA Mobile Awareness Vehicle (D-MAV) was born. We drafted a proposal and sketched out the design. I knocked up the necessary artwork in Photoshop. Funding was secured (kind thanks to the Acorn Fund) and the battered old vehicle went for a complete refit: bodywork, lighting, custom PA system, the lot.
I have to admit I was pretty excited to see the end product.
The D-MAV will be used primarily for rural outreach. Members of the DISHA team will head to the villages and run street plays and awareness sessions about HIV and AIDS. The D-MAV is also a visible advertisment for the Wake Up Pune campaign, and will be present at all high profile DISHA events.
Sadly, Hans and I won’t be able to use it for our holidays. But I’m glad that all our hard work slaving over a beer has finally been vindicated…
This pledge features in the front of Indian school textbooks and is recited by pupils at the beginning of every day. This photo was taken at the school we used for the Eye Camp in Tambewadi village.
The team from Vision Aid Overseas were in town last month to run a series of Eye Camps. For the third year in a row – who could have imagined that? – I tagged along for a couple of the rural camps.
The dedication of the team really is remarkable. After flying over from the UK (they pay for their own flights, using their annual leave to come) they undertake a whistlestop schedule of 10 camps in two weeks, providing eye tests for more than 2000 people. Spectacles are dispensed on the spot and referrals made for operations where necessary – usually for cataracts.
VAO provides the optometrists and covers expenses whereas Deep Griha Society handles all the logistics, providing volunteers, translators, transportation and so on. Half of the camps are in urban centres, with the others in rural areas. Kadambari – the all round superwoman responsible for liaising with the villages – does a remarkable job of getting things organised. In the months leading up to the visit, she will go from village to village and persuade each Panchayat (village council) and Sarpanch (village head) to host the camps.
On the day, the VAO team are picked up by minibus and taken to the village. The DGS staff arrive in another vehicle with all the spectacles and equipment. Remarkably quickly, things are set up and the eye tests begin. People are registered, screened, tested and then given prescriptions as necessary. Perhaps as many as 250 people will be seen in one day.
The VAO team are usually welcomed at the start of the day by the Sarpanch. They’ll typically be garlanded or given a blessing. When I tag along, I invariably get mistaken for one of the optometrists – in 2005 I was introduced once as ‘Dr Paul’; last year it was ‘Paul Madam’. Actually, I find it a little bit embarrassing because really I’m just a bystander rather than a member of the team. In this photo, despite my initial protests, I’ve just had a turban wrapped around around my head – a first for me.
This is Ramdas. As you can see, Ramdas has no arms. I escorted him through registration, and screening. Once we got to the (long) queue for the actual eye test, I was unsure whether to fast-track him through or not. But as a couple of people in the queue were happy to point out, “No, no, he’s normal, he can wait.” Quite right, I thought. I felt bad for being so patronising. Ten minutes later, Ramdas sneaks up and asks if he can jump the queue. Hey ho. In the end he walked off with two pairs of spectacles – for both close-up and distance vision. Another satisfied customer.
Schoolchildren practicing for the Republic Day celebrations to be held the next day, on 26 January.
Inquisitive locals Sachin and Subash look in at the window.