ABOUT a decade ago, the concept of self-advocacy took the world of IDs by storm. Many parents and parent bodies had invested a lot of time and effort in trying to make IDs and their parents speak up for themselves. We decided to study the subject of self-advocacy in the context of IDs in depth.
Key elements of self-advocacy
Self-advocacy is the ability to speak up for yourself. As an advocate for yourself, you are able to ask for what you need and want, and develop a plan to achieve your goal.
Self-advocacy has three key elements:
- Understanding your needs
- Knowing what kind of support might help
- Communicating these needs to others
Why it is difficult for IDs
The problem of self-advocacy gets compounded in the case of IDs. Firstly, they do not understand clearly what they need. Second, they cannot imagine what might help; and, thirdly, they have a major problem communicating. To top it all, they are not aware of their rights.
We had to think of an innovative way to help them to speak up for themselves; if they cannot do it alone, maybe as a group they may be able to. At Navkshitij, we have weekly meetings with all the IDs. Individually they may not be able to understand or communicate but as a group they are a power to reckon with.
- We realised that the most enjoyable event of the day for them is meal-time. For instance, we asked them questions about what they would like included in their meals to make it interesting. One of the IDs, whose comprehension level is higher than the rest, suggested a dish and the others chorused, ‘Yeah!’ We started giving them chicken once a fortnight and egg curry once a week. They wanted Maggie noodles; we included that once a week. IDs are very excited about the traditional sweet for each festival; we make sure that they get it. They want a change like pav bhaji, vada pav and pani puri; we make sure that they get all the change, of course, spaced judiciously. We make sure that the staff enjoys the exciting meals with them. We have found an innovative way to find out what they like in their meals. We weigh the food that they leave behind on their plates. The day the wastage is more, that day’s food item is quietly taken off the menu.
- The second thing they like is trekking and going out on day trips. We organise one such outing every month. All of them go out with the staff, in a bus; they have chai and vada pav on the way. They climb some distance and are then served the meal that we carry along with us. The kitchen staff has to prepare the meal by 6.30 in the morning. Caregivers have to wake them up and get them ready by that time. Once a year we also take them for an 8 to 10 days’ trip outside Pune.
- The IDs love watching movies and cricket matches. Twice a week, they watch selected movies on the big screen. When cricket matches are going on, the atmosphere in the campus is charged. They all watch matches on the big screen. When an IPL match is held in Pune, they watch the match in the stadium. They love the attention that they get from the media. We ensure that they move in a bubble, under the watchful eyes of the caregivers.
- Once in fifteen days, one house at a time goes to a restaurant where they are helped to choose their own dish; they just love it.
- They enjoy preparing for an event and then showcasing their talent in front of a crowd. We organise street plays once a year. We conduct a drama competition in which schools for IDs from all over Maharashtra participate. We arrange a Parvati Hill climbing competition once a year. Almost 300 IDs from all over Maharashtra participate in this event. Prize distribution is a big event. The entire event keeps the IDs enjoyably occupied for a couple of months before the event and almost a fortnight after. Hordes of people specially come to watch and cheer them.
- We pay them a small amount every month for their work in the workshop. The joy on their faces when then receive the money is something to witness. Everybody is paid equally. The money is collected over the year to be spent at a mall at the end of the year. The IDs spend some time with the special educators deciding what they would like to buy with the money. Surprisingly, most of them want to buy something for their close relatives, not for themselves. Something to learn from them!
- During Diwali, we encourage the parents to take their wards home for up to fifteen days. Most of the IDs are back within 3–4 days. This shows us that their most important need is to live with their peers. The challenged do not feel challenged amongst their peers; it is their comfort zone.
- We noticed that the elder IDs love to take care of the children of the staff. Some love to sit with Divekar Maushi and chat with her. They love to watch others play, dance and perform. This, according to us, is inclusivity. Where they live amongst so many normal people who are sensitised to their needs and respect them. This is ideal Community-Based Rehabilitation (CBR) for IDs.
- A small percentage of male IDs can be trained to get a job in a company. We were lucky that Mr. Parameshwaran of Raychem approached us to see whether they could place some of our IDs as trainees in their company. Our managers and trustees visited the company to ensure that all safety measures could be taken. We first selected four IDs; then we tried with a few more but reached the conclusion that they would not be able to sustain the grind of a nine-to-five job. We took those selected to the company. They have been working there for the past six months. Thank you, Raychem. The caregivers wake up these four young men at 6 am and get them ready. One of the managers goes to drop them at the company bus stop and bring them back in the evening. Every other day, someone develops a headache or a tummy ache. We have to cajole them and motivate them to go. We are keeping our fingers crossed.
- Five percent could get placement. Of the rest, most work in the workshop inside our premises for about four hours. We call it a sheltered workshop. The aim is to give them a feeling of having worked. The products barely cover the material cost. Some IDs help in the garden and some others in the kitchen.
We have been studying the needs of IDs for the past 20 years. We have spent time with more than a thousand IDs to understand their needs, likes, dislikes and wants. Over the years, best practices have evolved. As advocates for our IDs, this is the model of CBR (Community-Based Rehabilitation) that we have been trying to promote.
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