Eye witnes account of the story of HIV+ Children in Kerala

[Guest guest]

HAVE EYES BUT DO NOT SEE…HAVE EARS BUT DO NOT HEAR…

Sr. Mini Mathew

Community Training Coordinator

THRANI center for crisis control

thrani@... www.thrani.org

Decades back a poet from our soil sang – we build heaven for ourselves, so too

the hell… Is Kerala society on the process of creating hell for the HIV/AIDS

patients and the State affirming it through its inappropriate interventions?

That is what the experiences of two innocent children – Benson and Benzy, who

were ostracized from the schools for no mistake of them rather because they

happened to be HIV positive – prove to the world.

The approach adopted toward these children is that of the one followed a century

back – fear and hate towards the patients rather than preventive measures

against the sickness. The basic human values of love and understanding of the

suffering fellow beings are sacrificed at the altar of vested interests, whether

it is political based or institutional based.

Directly witnessing and analyzing the experience of being at Kaithakuzhy

Government Lower Primary School on 4th March, the day on which the final verdict

which stamps upon the fundamental human rights of Benson and Benzy (Right

against discrimination, Right to education) was publicly declared by the words

of the common people and by the silence and helplessness attitude adopted by the

people’s representatives and the health and education departments, I am

surprised and shocked at the trend of our Kerala society.

Let’s have a flash back into the background of the meeting. This is based on

the information from the media and from the interaction with the school Head

mistress and some of the people from the area.

Benson and Benzy were born HIV positive to their parents who had contracted AIDS

and died. Once their HIV status was identified, they were expelled from the

private school where they had been studying. At this point, their guardian

(mother’s father) approached the local MLA and on getting a negative response

from him, reached the Chief Minister and expressed his concerns with the help of

a priest. The Chief Minister gave order to admit the children in the local

government school. The Headmistress carried out the order to give the admission

for these children. Kerala State AIDS Control Society (KSACS) gave a session of

awareness to the teachers and left the children in the school. The health

workers began visiting the school daily. As the news began spreading, the

anxiety and protests from the parents of the rest of the children began to

increase and consequently, the Parents – Teachers Association (PTA) meeting was

held. During the meeting, the KSACS personnel tried to provide some awareness

session for the parents, where only a few of the parents were present. Hence

the session does not seem to have created any great impact on the situation.

As the protest intensified, the parents stopped sending their children to the

school and only Benson and Benzy were attending the school for nearly a week.

In this context, a public meeting was planned in the school by the education

department, health department, school PTA and the public in the presence of

Education Minister and the Health Minister and the personnel from KSACS, on 4th

March 2003.

Being present during the meeting, it seemed to me that these two children were

kept as auction items in the midst of politicians, media, State and many others

who had their own vested interests and competed to win the auction. It was not

an empathetic crowd to solve the problem on a humanitarian basis. This became

evident when the MLA of the area began his speech itself. His sole intention

seemed to be gaining the sympathy wave of the crowd and the attention of the

media. He abused the priest who had intervened in the issue, to bring it to the

notice of the authorities.

It was quite a cruel and dramatic situation that was created in front of those

little children, as they were present during the whole meeting and the chaos.

Though the meeting was supposed to take place at 11 o’ clock, the school premise

was filled with the public, parents, and the media by 10.30 a.m. itself. The

District Collector, the Secretary to education department, Deputy Director of

Education, Kollam, MLA, Secretary of the Kollam District Panchayat, Village

Panchayat President and the personnel from KSACS were also present. As the

meeting was convened at the initiative of both Health and Education departments,

the presence of both the Ministers was expected. This could have been the real

reason behind the crowding of media at the venue. Any way, ministers were found

absent during the critical and highly sensitive issue.

Such an important gathering to discuss the sensitive issue turned out to be a

chaotic one (much to the disappointment of those of us who looked forward to a

constructive outcome) at the initial phase of the meeting itself as the MLA

began fuming with fury, defending himself of all accusations, abusing and

blaming the priest, during his presidential address. He seemed to have forgotten

about the real objective of such a meeting itself. His speech created an

inappropriate out burst in the audience – some protesting the MLA and some

others resisting the protest. As the situation showed the tendency to move into

violence, the women in the hall had to vacate it. Gradually, the tension

subsided and the PTA president addressed the meeting declaring that she and the

PTA have decided to get the Transfer Certificate of their children, if the HIV

positive children are to continue in the same school. Following her, 10-15

parents of the children also expressed their unwillingness to let their children

to interact with Benson and Benzy. Some of them expressed their genuine concern

and fear Benson and Benzy were rejected by the other private schools and at last

admitted in the government school, where the poor children study. They felt

that since they were poor, they were made guinea pigs by the State.

This seems to be a notable point; Why did the Chief Minister take such a

decision to admit the children in the government school, rather than demanding

the explanation for the discriminative act of the school authorities who

‘removed’ the HIV positive children, denying their fundamental right to

education.

At this juncture, another savior entered the arena and declared that he was

ready to protect the children in his center where he will take care of all the

HIV positive children. This inappropriate proposal to segregate the HIV/AIDS

patients from the mainstream society, as though that is ‘the solution’ to the

problem and the approach to be adapted was welcomed with wide applause from the

audience.

Meanwhile, two common faces of people’s representatives also came into light as

the District Panchayat secretary offered to accept the children and to interact

with them as members of his own family, being pained by the discriminative

attitude of the parents gathered. On the other side, the village panchayat

president requested the removal of the children from the school!

Thereafter, Dr. Sajit from Kottayam Medical, who has been engaged in the

treatment of HIV/AIDS patients since 1991 and has handled more than thousand

AIDS patients, began sharing his experience of taking care of them and the need

to accept and care for them in the society just as any other patients. The

audience found to be rather receptive to his realistic presentation from

personal experience. All of a sudden, the crowd burst into protest and

self-defense as the doctor stated that the possibility of HIV infection through

shaving blade is very rare. The people defended that they were told that the HIV

infection via shaving blade is very high. Once again the situation turned out

to be uncontrollable and chaotic. The excitement, the shouting and argument

from the people increased as the eyes of the cameras were focused on them (some

of them commended later, that was the first occasion a camera was turned on

them!). Thus the education secretary concluded the meeting in the midst of the

noise and disorder, with the declaration that Benson and Benzy would stay at

home and complete their studies! Only for the exam they would approach the

school!

Now we hear: the government is committed to provide education for these

children; and willing teachers are wanted!

A few points posed before Kerala society for reflection by this event:

1) Does education mean just completing a syllabus and appearing for the exam

alone?

2) What happens to the mental, emotional and behavioral formation of the

children through healthy social interactions in the school with companions and

other related situations?

3) Is stigmatization and segregation through institutionalization, the

appropriate approach towards HIV/AIDS patients in the society? What will be the

psychological impact of such discrimination upon the patients?

4) What was the appropriate action required from the Chief Minister of Kerala –

take action on the school authorities who violated the human rights of HIV

positive children by expelling them from the school OR giving admission in a

government school where the poor people naturally would assume that this is

terrific to accept the children as they are not accepted in the private school.

5) Was the basic responsibility to prepare the parents and children to accept

Benson and Benzy carried out in time?

6) What was the impact of the awareness programmes of KSACS for the past years

spending crores of rupees? Were the activities insufficient or the orientation

of awareness defective?

7) Were the PTA ever thought or made to think if these two children were their

own children….

8) What is the personal response of each Malayalee to this dehumanizing event in

our society?