Rights of person with disability act, 2016: Review

The rights of a person with disability act 2016 was passed by Lok Sabha on 16th December 2016 after it was passed by Rajya Sabha on 14th December 2016. It received the presidential assent on 27th December and has replaced the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, The types of recognised disabilities have been increased from existing number of 7 to 21  with the residuary power to central government to add more types of disabilities as and when required. The disabilities recognised by this bill is following:

1. Blindness
2. Low-vision
3. Leprosy Cured persons
4. Hearing Impairment (deaf and hard of hearing)
5. Locomotor Disability
6. Dwarfism
7. Intellectual Disability
8. Mental Illness
9. Autism Spectrum Disorder
10. Cerebral Palsy
11. Muscular Dystrophy
12. Chronic Neurological conditions
13. Specific Learning Disabilities
14. Multiple Sclerosis
15. Speech and Language disability
16. Thalassemia
17. Hemophilia
18. Sickle Cell disease
19. Multiple Disabilities including deaf-blindness
20. Acid Attack victim
21. Parkinson's disease

The important thing to note is that the 2016 act has recognised intellectual disability and disability-related to speech and language as a disability under the bill which did not have this status earlier. The 2016 act have also created new categories of disabilities such as Dwarfism, a muscular dystrophy and blood disorders such as Thalassemia, Hemophilia and Sickle Cell disease.  It is for the first time that these disabilities have been included. 

The 2016 act, in contract with the Convention on the Rights of Persons with Disabilities  2006 adopted by UN General Assembly, lays down the following principles for the empowerment of persons with disabilities:

(a) respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; 

(b) non-discrimination

(c) full and effective participation and inclusion in society

(d) respect for difference and acceptance of persons with disabilities as part of human diversity and humanity.

(e) equality of opportunity.

(f) accessibility.

(g) equality between men and women.

(h) respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

Adhering to the aforementioned principles the 2016 act casts a responsibility upon the authorities and appropriate government to take effective measures ensuring the rights and benefits bestowed upon the person with disabilities. It mandates the government to make arrangements for the person with disabilities to enjoy their rights equally with others. The Act lays down the benefits such as reservation in higher education, government jobs, allocation of land, poverty alleviation schemes for the persons with high support needs and benchmark disabilities. It mandates 4 per cent reservation for the disabled in higher education institutions and government.Every child with benchmark disability between the age group of 6 to 18 is entitled have free education. Also, Government funded educational institutions, as well as the government, recognised institutions will have to provide inclusive education to the children with disabilities.The Act has penal provisions for non-compliance. The lays down provisions for the creation of National and State Fund to provide financial support to the persons with disabilities. The existing National Fund for Persons with Disabilities and the Trust Fund for Empowerment of Persons with Disabilities will be subsumed with the National Fund.

The 2016 Act also incorporates penal provisions for non-compliance under which violation of any provision of the Act is punishable with a fine of Rs 10,000. and subsequent violations could attract a fine of Rs 50,000 to Rs 5 lakh. Although the bill had the provision for a jail term of 6 months which may be extended to 2 years on subsequent violations but this was dropped in Rajya Sabha. The 2016 act has laid down provisions for guardianship of mentally ill persons. The District courts may award two types of guardianship. While a limited guardian is to take joint decisions with the mentally ill person, the plenary guardian takes decisions on behalf of the mentally ill person, without consulting them

The 2016 Act is a fresh breeze for which we have been waiting since 1995 but yes it would not be an exaggeration in saying that 2016 enactment is a fresh start and has answered few queries in the long bucket list. The implementation and executive attitude have to be tackled to make it a surface reality. 

Inclusion is Creating Conversations

"Prejudice is a burden that confuses the past, threatens the future and renders the present inaccessible.”  What’s the starting point? Morality and fairness? Or Success and effectiveness?

I stepped out of a session on ‘Building inclusive classrooms through the Arts’ and much to my surprise, rather shock I see a group of people screaming, or should I say theatrically articulating using body and movement J . The noise was to convey that the land little beyond the lease land on which the school is built cannot be used for anything else as it needs to be set aside for a temple on the far end of a hill that it overlooks.  The voice and language intonation and vocabulary had threats, curses, abuses , swears and more. The principal said something that most of us would echo with ‘Inka inclusion kaise karein? We can work with the children in the classes at set up model centres, but what do we do about this prejudice and mind set?’ Having been through similar situations, I could see where she was coming from and also how far we have come in the way we think about these things, in the steps we take each day.

Inclusion is about the intentional building of relationships and creating conversations. Inclusion embodies the idea that identity is something to be continually re-negotiated as successive waves of groups enter into conversation with the majority. So in this way conversation is not just an excellent metaphor for the meaning of inclusion, it is also a vital mechanism to achieve it. It is through conversation that we can respectfully negotiate the terms of a partnership, but at the same time we appreciate conversation for its own sake, are not threatened or dissatisfied by the fact that it is open-ended.

But if building an inclusive society through conversation is to be sincere and productive, it has to be done between partners who demonstrate mutual respect, and be capable of freely engaging; partners with a clear sense of others, but also of themselves. It seems to me that this sort of capacity or capability is also at the core of what we mean by “inclusion”.

An important prerequisite of this sort of freedom is having a fully developed sense of self, of capacities to define what we value, and to make the choices necessary to get us there.

I would like to put the focus on children, and suggest that if a society is inclusive, it is in the very least a society in which children can become all that they can be. Obviously this is not the only dimension, and part of the task facing us is to clarify other dimensions through our conversations and deliberate efforts. But focusing on children and educators, facilitating these conversations through creative non-threatening artistic tools allows us to illustrate a framework for understanding the underlying drivers of inclusion, of the challenges facing   schools, institutions; in short societies seeking to be more inclusive.

Unless diversity is welcomed, and relationships are consciously nurtured, there will be little change in the educational experience for children. Of course, policy and legislative change is desirable, specialist skills can be useful and a greater financial investment in schools would be excellent, but making the correct choices that are effective is critical.

As I look back at what happened at the school I feel ‘Social Cohesion’ that brings and hold people together in society is what we need to aspire for. A society in which all individuals and groups have a sense of belonging, participation, inclusion, recognition and legitimacy. By respecting diversity, we harness the potential residing in societal diversity and are less prone to slip into destructive patterns of tension and conflict when different interests meet and collide. Then creating an environment where everybody can fulfillJ.

their potential, regardless of ability, shouldn’t be difficult.  Let’s start from the very beginning

Ishanya - Alternative Intervention for the Holistic Development of the Child

Ishanya we are proud of you! Friends, on the occasion of Ishanya's 1st Annual Day Celebrations, we are excited telling you about our collaboration with Ishanya in a pilot program on ‘technology assisted intervention’ for children with special needs. This offered us opportunities to give our children a range of learning experiences.

To mark the event, Ishanya is organizing a panel discussion on Saturday, October 22nd, 2016. Our Executive Director, Gitanjali is honoured to be a part of the afternoon session on “Alternative Intervention for the Holistic Development of the Child”. A number of distinguished speakers will be deliberating on issues of children with special needs, holistic interventions and learning and development.

We started our co-location with Ishanya last year and clearly it has been a meaningful engagement for the children and us. Children have been exposed to computer literacy skills and considerable progress has been made in developing their capabilities.

The objective of this collaboration was to create a child centric equal stake holder model which brings together co-location of organisations to share resources and expertise.
A huge round of applause to you, Ishanya!

The Reverberation of the rhythm and the rumble

Rennee writes about her experience co-facilitating a session with the UG students at IIPR. The session is a part of the certificate course titled ' Psycho-Socio Wellbeing using Arts and Play' offered jointly by Snehadhara and Headstreams.

Fifteen enthusiastic students along with the facilitators were on a rhythmic journey during the session to create a rhythmic revolution of sorts. One student proposed 'Spirituality'  as the topic for the song composition.There was instant acceptance by the group and they began to spell out their ideas, beliefs and notions . The board held all possible terms  from ‘Holy spirit’ to ‘Bholenath’ to 'Love, Peace, Joy and Hope'. Amidst all of these sprouted‘nothingness' from one participant.  With these words they quickly put up a song that had a chorus and a verse. Each group came up and performed to the others. Once the song was set, we got into a drum circle with djembes. No right, No wrong beats started as the group played the djembe and tried to sing their composition as they played along. 

What followed as a debrief was interesting . The word that stayed with the group was 'nothingness'. It was interesting to see what students understood of nothingness. Answers rolled down slowly from “Nothingness is everything” to, "I don’t know what it means " followed by, “It means nothing to me in connection with Spirituality” to " Nothingness is letting go", " Nothingness means nothing exists at all". This also stirred a discussion in the group on how difficult it is to hold our thoughts lightly. Each one held his / her idea of nothingness so strongly that by the end Nothingness actually became 'everything' for this session. Some felt peace, some in thoughts and some puzzled. 

Nothingness, also called emptiness (sunyata),does not mean that things do not exist at all. It means that things lack an inherent, independent, self-existence. While being nothing in this sense, they are something in the sense that they do have a conventional existence in dependence upon various other causes and conditions. the causes and conditions upon which something depends lack inherent existence as well. So, there is not even a form to grasp on to that is distinct from emptiness. And even the notion of emptiness, insofar as it is a definite conception, lacks inherent existence. Thus, in the end, the distinction between somethingness and nothingness collapses, and the mind opens. 

The reverberations of the beats ended as the minds rumbled .

Love of Wisdom - philo- meaning "love" and -sophos, or "wisdom."

This morning our group of therapists and trainers at Snehadhara Foundation had an interesting session titled "Introduction to Philosophical Thinking" facilitated by Adil Hasan. 

The session started off with a discussion on what is philosophy and how we are already philosophers when we think and ask questions in a structured way about universal themes and concerns.The group came up with interesting philosophical questions and talked through ideas like:

1. What is the connection between the mind and the body?

2. What is knowledge? Is science adequate to explain all observable phenomena?

3. Is there a soul over and above the mind? Does the soul transmigrate from body to body?

4. Can there be life after death?

5. What does it mean to have a self, can a person have different selves?

6. The connection between actions, thoughts and behaviour.

7. Is the world completely deterministic or can there be room for free will.

8. The role of faith and belief vis-a-vis the scientific explanation of events.

The presentation and discussion opened up interesting, opposing and contested points of view which was joined in whole-heartedly by the entire group including some of our differently abled members. The session witnessed many different ideas from the group like defining life as love and compassion, that the mind is nothing but our awareness towards the world and the soul is a continuum, a lifeforce. It was fascinating to see the group bring in arguments from various schools of thought such as positivist, realist, naturalistic and historical. Intense brainstorming allowed the group to reach both consensual and individualistic conclusions.

The session closed with the story of Socrates' trial and his saying "I know that I know nothing" stressing the importance of acquiring the method of rationality and a constructive skepticism.

Samavesh - Inclusion is a noun.

Gitanjali writes about her interaction with three organisations from Baruch, Gujarat and draws parallels to what Snehadhara is out to achieve. 

We hosted a team of three organisations from Bharuch District- Gujarat today. Kalpana Ben, a special educator with Sarva Siksha Abhiyan in Bharuch, Ajit Bhai and Jivi Ben from Viklang Parivartan Sangathan (VPS), and Dinesh,Sanjay and Jyoti from Aatapi Seva Foundation. VPS is advocacy group initiated by leadership of persons with disabilities in Jambusar Block. Aatapi is working in Jambusar Block of Bharuch District -Gujarat. Aatapi strives for comprehensive and inclusive development of socially and economically marginalized rural communities.

The purpose of their visit to Snehadhara is to understand how we work using the Arts to achieve learning outcomes and how one could approach inclusion as holistic learning. We will be facilitating a two day workshop for them that would give them a glimpse of what we do, understand the methodologies at a broad level and also be a part of some of our sessions.

The challenges faced by them in working with special populations, the support offered by the government, the acceptance of children with special needs in mainstream schools, the lack of specialised services for the disabled, the minimal understanding and implementation of government schemes and the big problem on empathetic and skilled human infrastructure; all of this echoed the problems of the many of us working in this space.

How do we address this huge developmental deficit? School systems have traditionally stressed the importance of teaching all children in a uniform manner. This has made it difficult for them to include those children – such as those with learning disabilities – who learn very differently. In fact, schools are belatedly recognizing that they are also leaving behind many students who are in class, but who too need to learn differently from the uniform approach that they’ve adopted. Lack of inclusion in traditional learning systems, is stemming from their lack of diversity in how these systems see ‘learning’. Clearly the present model of inclusion is not working and one has to look at an integrated system of learning.

We,at Snehadhara, are set out to take creative interventions into classroom settings to introduce diversity of learning approaches. This approach would look at two dimensions in schools: help effectively to steer the learning of all their students, and enabling them, in the process, to be more inclusive of children with learning disabilities. There is a need to look at large scale adoption of this pedagogy by amalgamating the practices of arts based teaching in the classroom to achieve both academic and therapeutic goals.

Having spent time today with the team from Gujarat, it is humbling to see that in remote villages of India there are people who are set out to give it their all fighting challenges- systemic, personal, financial, and socio-economical.

As an individual working in the field of education, as an organisation, as a special needs adult/parent, as an institution, as a corporate house, as an NGO, as a policy maker, each one of us has a role to play in building this ecosystem.

The enormity of the challenge cannot stop one from addressing it. 

A Beautiful Landscape

Devika is a highly confused 20 year old, who likes to spend her time working with children, exploring craft techniques and drinking coffee. She has finished her schooling at Centre for Learning, and is currently on a gap year.

Devika writes 'A Beautiful Landscape'. 

I am currently in Chennai, co-facilitating the 7i initiative at HLC . This is a part of an ongoing series of sessions conducted by Snehadhara Foundation (http://snehadharafoundation.org/) under their initiative ‘Impart’. The aim is to interact with 6^th, 7^th and 8^th standard students, and explore ‘social domain goals’. It’s a long term project that uses arts as a medium to see their own processes of motivation, sharing, and understanding diversity amongst other things.

I was a part of the facilitation of 6^th standard students yesterday. This was the closing session for the year for this group.We started by sitting in a circle, and discussed the annual day the students had participated in recently. It was nice to hear the multiple perspectives. This was followed by an introduction game. I tried to keep it as simple and hassle free as possible. I came with an easy ‘tap-tap-clap’ beat that everyone had to follow. They all managed to follow the beat quite effortlessly. The next step was to speak out our names to the beat. This was a little tricky but fun at the same time. The only thing I had not accounted for was the loudness of the beat that could overpower the voice. 

Then we spoke to the children about ‘The Little Prince’, a book they had read in their initial sessions and were supposed to complete on their own. Unfortunately, most of them had not read the book and we were required to rethink the activity. We had initially planned to create a timeline on the board with the help of the students. They were then supposed to pick one planet mentioned in the book to create a postcard describing it.

We asked the children to recall anything they remembered from the book. This started as a verbal exercise and eventually we created a ‘web diagram’ on the board. This was extremely helpful is showing the children that they had made more observations than they realize. I was personally surprised to see the minute details they remembered like the colour of boy’s coat. 

After creating a small link with the story, we decided to introduce the postcard activity. Since the familiarity with the text was still limited, the children were now asked to create their own planet. They were supposed to write a postcard to a friend, which included both a drawing and a description of this unique imaginary planet. The objective was to encourage them to think about their own areas of interest and how they can manifest in a different world. With slow instrumental music in the background we set off on this journey of creation and exploration.

The students took their time to create interesting planets. They had some clarifications and questions that they voiced quite openly. The only think we forgot to account for was the time management for those who finish their work quicker. It didn’t get too chaotic, since they managed to occupy themselves by revisiting their work or playing cards in a small group.

Post the short 20 minute break they were supposed to share their postcards with the class. Some of them were a bit hesitant about the sharing. We created a simple format they all had to follow. They were supposed to display the picture to the group, and mention one thing about that planet. This went extremely well. People came up with some very unique ideas such as:

• ·         A planet with lots of arms and guns
• ·         A more technologically modern planet
• ·         A diamond shaped planet
• ·         A planet where teleportation can happen
• ·         A planet where you can do whatever you want
• ·         A Pacman themed planet
• ·         A planet where breathing is easy
• ·         A planet where excessive studying led to death penalty

 and many many more…

The last part of the session included a closure game called ‘dragon tail’. This was a competitive game which required the formation of two groups. The groups were made to stand in two straight lines. It was interesting to see and bring to focus, the clear gender divisions. They were required to hold each other by the shoulder and create a ‘train’ of a sort. This took a little time and negotiation regarding who stands where, but eventually they were able to follow the instructions. We gave a cloth to the two students standing at the end of their lines. They were supposed to tuck this into their pants, so that it resembled a tail. The first person in each line was declared the head, and the heads of both the lines faced the tail of the other line. The game required the both the teams to stay in contact with their line, while protecting their own tail and helping their head catch the other tail.

It was a very chaotic and energizing activity. They were all supposed to avoid speaking, which became exceedingly difficult to follow. The pushed and crushed each other in the process and still managed to have fun. After a few more people got a chance to be the head or the tail, we asked to strategize with their teams. This complicated the matter a bit. The first attempt helped one team achieve their goal quite easily. The second attempt lead to both the teams using the same strategy. This made the situation quite comical and increased their excitement. We gave everyone a chance and then settled down in a circle again.

We sat together and reflected on the activity and how it made everyone feel. Some very significant observations were made. Some people felt physically hurt and exhausted while others noticed the competitiveness growing. One student felt that the strategizing made the game more ‘winning focused’. A boy noticed that the situation started resembling the violent scenario he had created for his imaginary planet. I was impressed by their ability to articulate their feeling so well.

Finally, we spoke about this session and the programme as a whole. We received some very valuable feedback from the children. It was interesting to see them express the fact that some of them were still unaware of the ‘seven Is’ that this project hoped to inculcate. Some of them claimed that the sessions helped them redefine learning in a non-academic format, and helped them coordinate with each other. There was a general appreciation for activity based learning. There was a reluctance to stay on after school hours, which was quite explicitly conveyed by some of the children. 

It was a very interesting one-time session for me. I enjoyed the process and the sharing. I felt that a long-term association and relationship with the children will surely make it meaningful for both the parties. 

If you never did, you should!

….and will you succeed?

Yes you will indeed!

(98 and ¾ percent guaranteed)

Dr. Seuss

Dr. Seuss got it right……well almost! The children at Tukio covered the last 1and ¼^th percent! When asked to step out into the unfamiliar and the unknown, most adults will think twice and at least half of them would rather not attempt it at all. Here is where we can learn from children. While some might see it as having no risk filters, no thoughts of consequences, I think it is more than that. It is the simple belief in oneself, it is the non-existence of self-imposed boundaries and limitations, it is the true act of living in the moment.

Nowhere was this more evident than at Tukio this week. Presented with new levels of challenges this weekend, they more than just rose to the occasion! Every one of them conquered whatever was holding them back and jumped on the ropes, pushing themselves. Each of them had their own little bridge to cross when it came to the rope course challenge set out for them. Whether it was an Abhinav who while he took initiative in participating, took his time with climbing the ladder or a Keshav who found it difficult to get off the rope course. While the course looked like it would be a breeze for Naman, there was fear evident in him, which he overcame and did everything on offer. Nihal achieved a new milestone in participation of activities without any cajoling and also overcame his fear of getting down from the ropes. To Kabir, the whole process was effortless and he willingly participated in it all. Sai Sharan while was not too willing to participate in the activities itself, demonstrated clarity of thought and understanding of what he would do.

While on the one hand, there was an overcoming of fears, on the other hand watching each of them bringing in their own uniqueness to the whole process was a joyful experience. Each of them patiently waited their turn, which itself was a big achievement, with an accompanying interlude of singing by Abhinav, followed by Kabir every time. Nihal’s concern for Dambaru and the bond he shares with him was evident in his voluntarily reaching out to support Dambaru every time he was on the ropes. Naman shows beautiful leadership qualities, with an effortless leading of any child who is buddied with him. Sai Sharan’s staying on at the venue rather than going back to the farm house and his keen observation of the activities is in itself a movement for him. It was fascinating to watch Keshav’s independence and complete focus on the activities on hand. All of them actually responded best to the new outdoor instructors and the session proceeded smoothly when the multiple instructions from the familiar people stopped and the kids were allowed to build their own relationships with the new people.

There are so many little lessons in all of this for us adults. An overall humbling experience, with a clear message to us…….

Think left and think right and think low and think high. Oh, the thinks you can think up if only you try! Dr. Seuss

Zentangle – a surprise that unfolds one stroke at a time

Entangle=cause to become part of a tangled mass
Zentangle=creating mass of beautiful images from repetitive patterns.

We got entangled in zentangles beautifully with the Grade 6 and Grade 7 at HLC, Chennai. The children explored their own capacity for a mindful activity without an overt awareness of how they were executing it.

Being with themselves, totally engrossed in their expression of the art form, the music wafting gently around them enhancing their experience in a subtle manner, the children seemed to be impervious to time. It almost seemed a travesty to disengage some of them from the activity at the end of the class. 

A robust group they came in chattering, friendly, curious, and eager for their ‘7i’ session. There was much laughter and banter during the introductory round. The energy was high yet not intimidating. Yet introducing them to the zentangle activity seemed an antithesis of this energy. It was fascinating how quickly they adapted to it and how completely they adopted it. Each one brought out his/her own creativity to the fore. Once it was established that sharing is an option, it shed the last vestiges of any doubt that ‘non artistic’ children had. The intent was never the art anyway, their reflection of the process brought out the words that conveyed its intent; calm, peaceful, confused, blank, clear, uncomfortable, happy, ease.  It was almost as if they were surprised at their own reactions. It was interesting that not many sought reassurances as to the accuracy or the ‘rightness’ of their work. Also how they responded to simple verbal requests and non verbal instructions to respect the process and each other by maintaining the ambience of silence that was essential.

The zentangles were followed by wishes and dreams, another exercise that made them delve a little deeper into their own desires, aspirations, and expectations. They had to express what they dream for themselves and also give their opinion on whether dreams come true, what impedes their lack of fruition and what facilitates it. Though their responses ranged from idealistic conditioning to realms of black and white thought processes, what was interesting was that they placed the onus of dreams coming true on themselves rather than on the forces around them like expectations of parents, teachers, the social acceptability etc. Of course the dreams that they wrote for themselves came from fantasy, areas of interest or the safe zone of socially acceptable ‘professions’. They were yet to give full reign to their imagination for something fantastic yet possible or something unconventional. They were however able to distinguish between ‘practical’, ’possible’, ‘improbable’ desires.

It was fascinating to see the emerging maturity vying for a place with childlike naivety.