journalistsagainsttb

Fusing journalism and TB – telling the stories as they are

Nothing for Us without Us – the voice of a TB activist

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JATB is immensely proud to feature the impassioned voice of a TB activist. This is really the missing link the the fight against TB – a point that was emphasized in one of our earlier posts. We have valuable lessons to learn from the HIV movement. A large part of its success can be attributed to constructive activism – something that became possible because people affected/infected by HIV were empowered to demand services, demand their rights and demand to be counted. More power to Blessina Kumar. Read on for an unedited version of her plea for empowerment of TB patients.

“Nothing for Us without Us” – said an activist friend from Africa at one of the conferences.

Another WTBD has come and gone and this time Delhi was abuzz with events more than ever before. A media awards function honouring journalists from different parts of the country. An art exhibition on TB, definitely the first; a gathering at the Red fort and a street play by students on MDR TB accompanying the release of TB 2011 report by WHO (SEARO) and Bill Gates visiting the TB Hospital for a closed door exclusive meeting.

In all this excitement, something was missing – patients, patient representatives and community members. The media event, a really nice show, had several dignitaries seated on the dais. The Minister for Information Technology, Government of India, the Deputy Director General ,TB, the Director of the TB Partnership, the Director of the Union, heads of the organizations who put the show together, the chair of the TB NGO and one of its board members. But there wasn’t one patient. The jury for the awards, all eminent people but no patients or patient representatives.

How much nicer would it have been if a patient /cured patient was on the dais speaking from experience about the media and how it could help. I agree that it was important to hear the Deputy Director General TB, the Director of the Partnership, the Director of Union, heads of the organizations who organized the whole show and the chair and board member of the TB NGO. But all of them spoke of the patient as a mere recipient of care and treatment. A view that is very common in India. Only the Chair and Board member of the TB NGO uttered the word ‘community’.

Bill Gates, too, was here in New Delhi on the WTBD and met with ministers and visited a TB hospital and left. He heard the ministers and the policy makers but not the patient’s perspective. All efforts to contact the BMGF here in Delhi were in vain. They did not bother to either return the calls or reply to sms requesting for a short meeting. Yet BMGF has pushed the community into the forefront on their AIDS initiative. Would Gates have missed the community on World AIDS Day?

As long as we see patients and communities as mere recipients, powerless and dependent there will never be empowerment. We talk of empowering communities without really understanding what it really means. I have heard a lot of excuses in the past and continue to hear them, whenever I raise the lack of effective engagement with the community and patients. ‘They don’t want to be seen as patients for life’; ‘They are not articulate enough to speak to a large group’; ‘We do not have resources’, so the litany goes. None of these are valid because there are many who can and will talk. My co activists and I have been speaking for the past 4 years. The planners need to plan for empowering patient representatives and investing in training them to speak. The HIV community has done it and with a small amount. And look at the results! When will we learn that involving the patient is beneficial and cost effective in the long run?

Today most of those working for TB are discriminating against the patients and communities by keeping them away from most forums and opportunities where they could make their voices heard. Patients and communities have a right to be part of the decisions that are being made that will affect our lives.

It is time for TB to learn from the HIV movement which gave marginalized and stigmatized groups respect and brought them into the mainstream. Why do we lack the will to do the same and keep making excuses for ourselves?? At a recent Partnership meeting ‘involving the community’ meant having an American living in France join them on Skype!!!!!! Of the millions of patients in India could they not find one who could have been worthy of attending the meeting in person???

A top heavy vertical bureaucratic programme and civil society will never be able to empower patients and communities. At a recent dissemination of an evaluation for a TB ACSM project, the evaluator said ‘the biggest failure of this programme is the inability to involve patient groups.’

It’s time to wake up and see the reality. People are dying in the thousands, more than from AIDS. We need to join hands and not just with the ministers and directors and MD’s but also with the marginalized and neglected groups, patients and patient representatives, with those who are suffering and in pain. After all that’s what it’s all about.

Only through true partnerships can a world without TB become a reality.

Blessina Kumar (treated for TB)
TB activist
Community Representative and Vice Chair Stop TB Partnership

The views expressed here are entirely of the author.

Written by JournalistsAgainstTB

March 27, 2011 at 6:08 am

Posted in TB and Media

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