Written By: Dr. C. R. Desai
THE question that haunts parents of the intellectually disabled is, “Who after me?” When Aditi was 18 years old, the same question haunted us. We visited some homes for IDs and came back in tears. We could not imagine our daughter staying there. We decided to take the plunge ourselves; Navkshitij, a home for ID adults, was launched. We were lucky to get on lease an abandoned colony where the workers building the Kasarsai dam near Marunji used to reside. There were a few stone structures, all in dilapidated condition, spread over 1.75 acres. We could see that the houses were uninhabitable but Neelima was thrilled with the open land. Divekar Maushi, our eldest trustee (86 years old today), and Neelima rolled up their sleeves and got working. We started with just two inmates: Aditi and Raj Dhekne. Today, we have almost 90 IDs living with us for life.
By then, we had gathered a lot of knowledge and experience working with IDs.
Understanding the problem of IDs
1. We knew that the mentally challenged do not feel challenged amongst their peers. The main challenge for IDs is the normal people around them. Others are constantly telling them what to do and what not to do; sometimes kindly but most times with frustration, disdain and even abuse. IDs learn very quickly that if they shout, scream, throw tantrums, kick and bite, the so-called normal people around them would shut up. Throwing tantrums became their defence mechanism.
When they are among their peers, they do not need to resort to these coping skills. Among peers, their behavioural issues reduce considerably.
2. Schools for special children are reluctant to allow children above age 18. After that, one of the parents has to be at home to look after them; the parents too are ageing along with the child. Society is not concerned about what happens to the IDs when they become adults. There is no genuine end-to-end solution for adult IDs.
3. IDs need to be taken care of right till the end. Society has no plan for it.
4. The mental age of IDs rarely goes beyond 12. As they grow, their natural hormones start functioning and IDs do not know how to handle this change. They behave awkwardly in the presence of the opposite sex; this behaviour continues till ripe old age. The problem gets compounded when the ID is a girl. Reality is: IDs need to be protected from people around and sometimes even from themselves.
5. The hormonal energy needs to be diverted to some physically challenging activities like trekking and some form of exercise every day. We learnt that dancing to music also works well for them.
6. People around are not sensitised; they stare, glare and ogle. Some of them tease IDs and pull pranks on them and everyone around laughs. IDs come back traumatised; their behavioural issues increase. They say that people need to be sensitised but they are not, at least not today. All it needs is one insensitive person a day to hurt our special friend. It is easier to buy a pair of slippers than to try to carpet the whole world… a different solution.
7. When people laugh at them, ignore them or treat them differently, they feel hurt. It strips them of their dignity and self-respect.
8. Our special friends trip and fall, they spill and break things; some get epileptic fits at any time. They keep asking the same questions over and over again, to the point of irritation. They avoid eye contact. They try to do the right thing but fail to do it right.
9. Attention deficiency is a problem across the spectrum of IDs. Barring a few borderline autistics, IDs cannot perform repetitive work for long hours. Retaining a job, even that of a peon, liftman or office boy, is difficult. This is true for over 90% of the IDs; we have 90 IDs living with us for life. We could find only four who could be employed.
10. By the age of 35 or 40, the ID loses one or both parents. The other parent, a senior citizen by then, is barely able to take care of himself or herself. IDs are ageing and start developing old-age problems a shade earlier than others. Most IDs by that age are on some medication or the other. They need care. Who after me? This is a big problem.
To find a solution to this, we needed to first answer the question, what is rehabilitation of IDs?
Understanding rehabilitation of IDs
Rehabilitation is to ensure that people with disabilities can maximise their physical and mental abilities, have access to regular services and opportunities and achieve full integration within their community. This concept of rehabilitation translates quite differently when it comes to IDs.
Discovering the secret to rehabilitation of IDs
As it happens, the secret to rehabilitation of IDs lies in the very definition of rehabilitation—community living. We had understood the disabilities of our special friends. Through our adventure activities, we had a fair measure of their strengths. We needed to create an environment where our special friends live a life of dignity among their peers in a safe haven, with their individuality respected. They need to be given opportunities to express themselves in any way that they can.
In reality, we were seeking a solution that would give our daughter her birthright of health, happiness and dignity. This is what inspired Navkshitij, a residential rehabilitation centre.
Navkshitij is an ID-centric residential rehabilitation centre. Our daughter Aditi has been living there since inception. As admissions started increasing, the centre grew organically. By 2014, we had 52 IDs residing with us. Our Marunji centre was full to its capacity.
We send our special friends home for the Diwali holidays. After the first few days, most of them, including Aditi, start pestering their parents to take them back to Navkshitij. That is the certificate from the end user; we must be doing something right.
Read Previous Blogs:
Deep dive into the world of the Intellectually Disabled
Rehabilitation and Inclusivity: An Introduction
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