By H.H. Mohrmen
At the fag end of last year, the government observed two very important days, Disability Day and World AIDS Day. But as with many things the government celebrates, the momentum dies almost immediately after the occasion. No sooner had the programmes ended than the interest surrounding the causes settled like dust on the ground.
A few days before Christmas last year, the CMO shared a video on its social media platforms in which the Chief Minister was seen visiting a market in Tura. On noticing a visually impaired woman begging, he immediately went to buy her clothes and shoes. The benevolent act of kindness of the Chief Minister was indeed praiseworthy and befitting of the spirit of the season. Yet the question that must be asked is what happens after that moment of kindness. Does such an act translate into long term support, or does it remain an isolated gesture that briefly warms the heart before being forgotten.
MGMP platform for the visually impaired
My engagement with differently-abled people has taught me a very valuable lesson. They do not need charity, but support that enables them to become independent. As a friend of many visually impaired persons, and from years of engagement with them, one important truth stands out. They want to be treated with dignity. They do not wish to be pitied or reduced to objects of sympathy. If we can provide them with opportunities to live a dignified life, that is all they ask of us. From my interactions, I have also realised that they are constantly exploring ways to stand on their own feet, or at least to make ends meet through their own efforts.
During a recent visit to Iawpynsiñ market with Mike Sangma to take shots for a documentary, I noticed a familiar face singing in the market. There is now a growing group of visually impaired persons who travel to different weekly markets in the Khasi and Jaiñtia regions to perform with the intention of earning a livelihood. They sing not merely for entertainment, but as a means of survival, turning their talent into an economic opportunity. This is precisely where the government can step in, not only to support visually impaired persons, but also many others with talents in the performing arts who lack access to formal platforms.
Fortunately, the government already has a programme for street performances known as the Meghalaya Grassroots Music Programme. This initiative has helped many young artists showcase their talents and earn an income, while the public enjoys their music. If the government could consciously link visually impaired singers and performers with this programme, it would provide them with a dignified platform and a more stable source of livelihood. People may still choose to donate, but at least the performers would earn through their skills rather than depend solely on charity. Such an initiative could also be extended to persons with other disabilities, thereby promoting inclusivity in a practical and meaningful way.
Provide them training
The differently-abled section of the population has long been neglected. Not only is there limited reservation in government employment, but there are also very few structured efforts to create sustainable livelihood opportunities for them.
Society for Urban & Rural Employment (SURE) was perhaps one of the first training providers under the Meghalaya State Skill Programme to offer specialised training exclusively for visually impaired persons at Moosakhia. A second training programme on broom making for another group of visually impaired persons was supported by the Department of Social Welfare, Government of Meghalaya, and conducted at Wahiajer in West Jaiñtia Hills. These initiatives demonstrate that, with the right support, differently-abled individuals can acquire skills and contribute productively to society.
The government can further explore and fund similar training initiatives for the differently-abled adult population across the state. Expanding such programmes to include a wider range of skills such as handicrafts, music production, and small scale entrepreneurship would go a long way in enabling them to earn a livelihood and live with dignity. True empowerment lies not in handouts, but in creating systems that allow people to support themselves.
HIV AIDS has reached an alarming stage
In the meantime, another issue continues to demand urgent attention and that is the high prevalence of HIV AIDS in the districts of East and West Jaiñtia. The government recognises that combating the spread of this disease is a herculean task requiring sustained effort and coordination. The Meghalaya AIDS Control Society has recently launched a special initiative called AIDS Suraksha, to be implemented in East and West Jaiñtia Hills, East Khasi Hills, and Ri Bhoi districts. While this is a welcome step, much more needs to be done to strengthen its impact.
Linking patients to services
Drawing from my experience with the Link Worker Scheme supported by MACS, I would like to share a few observations that require immediate government attention. The objective of the programme is to link patients with available services, beginning with confirmation of their HIV status. This step is crucial, as services cannot be provided without confirmation, and early intervention can significantly improve outcomes.
One recurring challenge during Community Based Screening is that when a test result is reactive, staff must accompany the client to an Integrated Counselling and Testing Centre for confirmation. In many cases, clients are unable to travel due to financial constraints. Unfortunately, neither the Meghalaya AIDS Control Society nor NACO currently has adequate provisions to address this issue.
This is a serious concern, as failure to confirm HIV status not only increases the risk of further transmission, but also deprives individuals of timely access to treatment and care. The state government could consider introducing a support system similar to that provided under tuberculosis eradication programmes, where patients receive financial assistance to complete diagnosis and treatment.
At present, for people living with HIV who are unable to collect their ART medication, Cluster Link Workers collect the medicines from ART centres and deliver them to patients. This arrangement reduces the burden of travel. Many patients prefer not to visit ART centres or ICTCs unless absolutely necessary, to avoid exposure to public scrutiny and discrimination. Another reason for this system is the stigma that still persists.
Stigma reduction
Another pressing issue is the need to sensitise all stakeholders, particularly ANMs and village headmen, on maintaining strict confidentiality regarding HIV status. There are still instances where community leaders, teachers, and even church leaders lack adequate knowledge about patients’ rights to privacy. This will only deepen stigma and discourage people from seeking help. Creating awareness at the community level remains a major challenge and demands urgent government intervention.
AIDS is not the end of the story
There was once a widespread misconception that HIV AIDS marked the end of life. This perception persists largely due to lack of awareness and misinformation. However, those who have accessed treatment know otherwise. Many people living with HIV today lead healthy and productive lives.
With regular ART medication, the viral load can be suppressed to a level where it becomes undetectable. At this stage, known as U equals U, undetectable equals non-transmissible, the virus cannot be passed on to others. The encouraging news is from people living with HIV themselves, who started support groups to support themselves.
Testing HRGs
It is crucial for individuals engaging in high risk behaviours to get tested regularly. Early testing helps prevent further transmission and ensures timely access to care. Testing facilities are available at ICTCs located in civil hospitals across district headquarters in East and West Jaiñtia Hills, yet many still hesitate due to stigma and lack of awareness.
Condom distribution must also be intensified and made more accessible at the community level. Sadly, even today, the mere mention of condoms remains taboo in many places, despite their proven role in preventing HIV transmission and unintended pregnancies.
Hope to live
Providing livelihood training and support for people living with HIV is equally important. Targeted outreach to female sex workers, spouses of affected individuals, and other vulnerable groups must be strengthened. Linking the programmes implemented by MACS with the Meghalaya State Skill Programme is another approach that needs to be explored more seriously. While programmes for injecting drug users are already being implemented by MACS, exploring new approaches to reach out to this population remains essential.
The government should also ensure that the Sponsorship and Foster Approval Committee schemes are accessible to children of people living with HIV so that they can benefit from educational support. Every district has such a committee to support these children in continuing their education, yet awareness and access remain limited.
Only when policy translates into sustained action, and when compassion is matched with commitment, can we truly say that we have not forgotten the children of the lesser god.
