Friday, December 13, 2024
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A personal statement from a Person Living with HIV (PLHIV)

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By Barry Leslie Kharmalki

One of the challenges that NGOs, Civil Society Network are facing in tackling the HIV epidemic in our State as well as the whole country is STIGMA AND DISCRIMINATION. It was really shocking for me to read the local dailies where no less a person than the CEM of the KHADC, H S Shylla, the framing of the amendment to Khasi Social Custom of Lineage Act 1997 was, “aimed at protecting the community from imminent threat of deadly diseases such as HIV-AIDS which are through marriage with bus and truck drivers from outside the state, migrant workers including drug addicts.”

A vernacular daily headlined the news as, “KHADC Bill to protect from the disease of HIV-AIDS.” Never in a million years would I have dreamt of such a discriminatory and stigmatising statement from a public leader. It would have been alright if it was anybody else but that a law maker and a person who is expected to have vast knowledge on every subject matter could say something like that and that too in the media is shocking and disheartening.

Bah HS Shylla still doesn’t know what ‘Stigmatising & Discrimination’ (or maybe he does)means. To stigmatise or discriminate is too see an individual or a group of people as inferior because of their status, an attribute or characteristic; In other words, a biased or unfair judgement or treatment of a person or groups on the basis of prejudice

Mr Shylla, stigmatizing  and discrimination is not OK. It is a breach not only of various Human Rights Laws but also a violation of the Law of Mankind and above all the Law of God. So why are you Stigmatizing & Discriminating ?

  1. Lack of knowledge on HIV (routes of transmission, care and treatment )
    Mr Shylla’s statement to the media clearly shows that he lacks the basic information on the subject matter. According to media reports he has termed HIV, “Jingpang Kynsha” (Dreaded Disease). First of all HIV is not a jingpang(disease) but a virus that destroys the immune system of a human body. So please educate yourself before giving out false and misleading information to the masses.

If Mr Shylla had read up a bit before making a public statement, he would have known that HIV is no longer Jingpang Kynsha (dreaded disease) because it is a manageable infection. As a Person Living with HIV (PLHIV) I can tell Shylla and others in the media that with the medication and support I get from our service providers such as Anti Retroviral Therapy (ART) and psycho- social support, my HIV viral load is below 20, which means that I already have viral suppression and that the chances of other people getting infected from me are very slim; almost NIL in fact.

  1. Linking the infection with Moral Behaviour and Personal Irresponsibility
    This irresponsible act of HS Shylla would only lead to magnification of the problem.  According to Shylla and I quote, “Ka lynti rung jong katei ka khlam ka dei naka jingshong kha khleh bad ki trok draibar, ki draibar bos jong ki bar jylla bad nongbylla bar jylla” (the route for this plague (HIV-AIDS)is through mixed marriages with truck drivers, bus drivers from outside the state and with migrant labourers). First of all does, Shylla have any data/statistics to back up his statement or did he say it just because he had to say something?  Wise men talk because they have something to say. Fools because they have to say just something.

    There are four routes for HIV transmission and if Shylla could only think of Shongkha Khleh or intermarriage (sexual route) then he seriously needs help.  I would say only a ‘PERVERT’ would give such a comment to link an infection with moral behavior or personal irresponsibility. I wouldn’t be surprised if he now states ‘Diabetes ka dei ka jingpang kynsha (Diabetes is a dreaded disease) because to an extent and from what I have learnt Diabetes is also tied to Personal Irresponsibility.

    Look at Mizoram the HIV epidemic is there not because of ‘bar jylla’ (outsiders)or draibar trok (truck drivers) or inter community marriage and in the South Indian States not because of just addiction or inter-community marriages. You cannot generalize an epidemic because you want to pull out some political stunt for mass support. It is grossly irresponsible.

  2. 3. Why the Stigmatisation &Discrimination? This is because we associate HIV with certain communities’ behaviours and characteristics and Mr Shylla has clearly associated HIV with “Bar Jylla” (outsiders) and Drug Addicts. Does he even know how many people are HIV positive in our State of Meghalaya? Does he even know how many are outsiders  and drug addicts from the 3400 + PLHIV in Meghalaya?Most of the People Living with HIV in Meghalaya are not “bar jylla” (outsiders) or “drug addicts”. They are people from the Khynriam, Pnar, Bhoi and War community with no history of association with outsiders and truck/bus drivers or even drug addicts. Readers will be amazed at the statistics. From the 3400+ HIV+ in Meghalaya approximately 220 are from the High Risk Groups (Injecting Drug Users, Female Sex Workers and Men Having Sex with Men combined). Out of these 220, only about 50 People are from the DRUG using community or IDU).

    We also have 168 Children living with HIV. I don’t know what definition Mr Shylla will give them. So if you can’t be Kind, please be Quiet.

    And frankly I don’t see how the Amendment to the Lineage Act is going to help mitigate the HIV ‘epidemic’ in our state since clearly HIV infection is not because of Shongkha Khleh (mixed marriages) and Drug addiction? It would be prudent on the part of  Shylla and his ilk not to generalize the epidemic because it will only bring confusion and chaos.

NACO with MACS already have intervention programs for the HRGs in place and they are doing a great job in tackling the spread of HIV. What I fear is that, with such big statement comes fatal consequences and these marginalized communities will go into hiding and will not avail the existing services. That will make matters worse. Over the last  three decades , the Ministry of Health and Family Welfare (NACO ) Govt of India had been pumping funds into our state to help in tackling the HIV epidemic. On a daily basis, we advocate for better infrastructures and services, rehabilitation centers, social re- integration programmes, welfare schemes for PLHIV and other marginalized groups but till date the support from the State Govt has been very minimal. We look at our future with uncertainty. If NACO doesn’t give us our medications will the State or the KHADC provide us medication?

We have come a long way in our fight against HIV. It has taken us decades to educate people on such issues and to challenge Stigma and Discrimination. So don’t go to the media and say things that will have an adverse impact on the hard work that people have done.

Parliament has passed the historic Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) (Prevention and Control) Act, 2017 on April 11, 2017.  The Act prohibits discrimination against people living with HIV (PLHIVs).

In line with Stigma and Discrimination, Chapter 2, Clause 4 of the Act says “ No person shall by words, either spoken or written , publish, propagate , advocate or communicate by signs or by visible representation or otherwise the feeling of hatred against any PLHIV or group of PLHIV in general or specifically or disseminate, broadcast or display any information , advertisement or notice, which may reasonably be construed to demonstrate an intention to propagate hatred or which is likely to expose PLHIV to hatred , discrimination or physical violence”

Does Mr Shylla know that by making such a thoughtless statement inciting hatred, he is  breaking the law?  And as section 37 of the Act says, he is liable to be prosecuted because,”Notwithstanding any action that may be taken under any other law for the time being in force, whoever contravenes the provisions of Section 4 shall be punished with imprisonment for a term which shall not be less than three months but which may extend to two years and with fine which may extend to one lakh rupees, or with both.”

Instead of inciting prejudice and hatred, Mr Shylla would have been appreciated if he  could develop policies and guidelines that will help the people of the state rather than by playing God and judging every one.

(Barry L Kharmalki is Field Mentor and Consultant, Family Health  International – Harm Reduction Project by NACO for Injecting DRUG USERS and other Marginalised Groups in Meghalaya. Also living with HIV – diagnosed in 2009, he is an HIV activist and treasurer of the Meghalaya State Network of Positive People)

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