Our purpose in traveling is to be a part of the wonderful work going on throughout the country. The energy and new life that travel brings to our own work is impossible to quantify but no less essential for that. When we see first hand what others are doing, we re-examine our own ideas and approaches, fine-tune some, discard others and question, think and dream even more vividly. Time on the train or the road is also a time to reflect and put things in perspective, and chance encounters in airports, stations and restaurants along the way are full of possibility and new discoveries!

From Awareness Team : Disability and Law, A State Level Symposium, Suchetna Social Service Centre, Haldwani

Even though people with disability constitute a significant 5 to 6 percentage of the population of India and "The People with Disabilities" Act reserves 3% of all categories of jobs in the government sector for individuals with disability, their needs for meaningful employment remain unmet. Of the approximately 70 million people with disabilities in India, only about 0.1 million have succeeded in getting employment in the industries.

Since Indian Independence in 1947, no step has been taken to create a uniform policy for people with disability. Contradictions and ambiguities in administration blur the roles of different ministries, as do the Government's statements on the subject. The result is a seeming lack of legitimacy for services, state provisions, entitlements, and rights. The rights of individuals with disability have been classified with other vulnerable and weaker sections of the population such as women and children, the scheduled caste and scheduled tribes. These other groups have had powerful political lobby, while the people with disability have been left behind and segregated.

To advocate and make the people with disabilities aware of their rights, the Human Rights Law Network organized a training programme in Haldwani in Uttarakhand. The basic purpose of this training programme was to form a Federation of People with Disabilites in this Region. The Federation would fight for rights for the people with disabilities.

The Human Rights Law network provides access to the legal system and improves facilities for persons with all types of disabilities. The Disability Rights Initiative (DRI) provides legal aid and takes up high-impact Public Interest Litigation. The network also engages in out of court advocacy, conducts research and publishes ‘Know Your Rights' material.

NGOs and people with disabilities from all over the State attended the training programme. Rizwan Ali, Awareness Team Member and Utpala Deb, Communication Coordinator also participated in the training programme. The speakers were Advocate Veena Sharma, HRLN, Chandigarh, Rajive Raturi, HRLN, New Delhi, Ravi Bhushan, HRLN, New Delhi and Advocate P C Tiwari, HRLN, Almora. The lectures were highly interactive. A number of problems faced by the people with disabilities were discusses. There were two panel discussions on Employment and Education of the disabled in the State.

At the end of the session a federation by the name of “Uttarakhand Viklang Manch” was created. It comprises members from all the districts of Uttarakhand. The policies, programmes and functions of the federation would be finalized in a few days. This was a positive step as this Federation would take up issues and problems faced by the people with disabilities to the national level.

From Awareness Team: The Awareness Team has been very busy these days, informing mainstream students of the career opportunities available to them. Too often students think that there are only a handful of jobs that will exercise their talents; jobs in the disability sector are often forgotten. Our Awareness Team combats this problem by approaching students with descriptions and pamphlets about the exciting careers options in rehabilitation. Outlining the rewards of professions like physiotherapy, speech and occupational therapy, counseling, and social work, our team inspires students to research and consider careers in fields they didn't even know existed. We've found the students to be very receptive to our workshops, asking for more information and eagerly asking questions about where they should look to study and what they should do to prepare. Focusing on reaching students in the decisive 9th and 11th standards, our Awareness Team has traveled to several schools over the past month, including KVFRI and Sri Guram Public School. It's been enjoyable experience each time as the receptive students reveal that we are making a difference in our communities (not to mention that it's fun to work with the kids!).

The student awareness session on Sept. 8, 2008 was so rewarding! Too often disability is left to the margins; by highlighting the abilities and challenges facing people with disabilities, we can help turn the tide of public opinion. The 11th standard students of Dudhli Government Intercollege were eager to work with us. Using debate questions to showcase preconceived notions about people with disability, Rizwan Ali and Hema Thapa were able to challenge the students to consider the world beyond their daily experiences. Through inspiring discussion, our Awareness Team was then able to help these students understand the experiences of those with disability. The kids responded with further questions and requests for career material on jobs in the disability sector. The session brimmed with dynamic dialogues about what the students could do to help. It was a successful step for our Awareness Team, laying the foundation for future work.

With our 14 years of experience in the disability sector, we have a lot to offer. Dolphin Institute for Physiotherapy recognized us this month, welcoming our physiotherapists and Awareness Team to come present on our experiences in rehabilitation. In a workshop entitled "Activity Based Therapy for Pediatric Rehabilitation," Nalin Kumar, Pooja David, Archana Sethi, and CVT student Mayank Mohan presented techniques for making physiotherapy for kids fun and productive. Mayank participated as a helper in the presentation, further highlighting the techniques with real-life examples. It was a very successful workshop that had numerous returns, not the least of which were the beautiful dolphin statues awarded us in thanks. Thank you, Dolphin Institute for Physiotherapy, for your hospitality!

Disability happens regardless of location, education or ethnicity. To help reach out to those who may not be readily approached about disability, our Awareness Team recently held a course for health workers on identifying assorted disabilities. Training workers from the Primary Health Centre NehruGram, Dr. Sebastian, Archana Sethi, and Manju Singhania discussed normal development milestones and early identifying sings for childhood disabilities. We held the all-day course on October 20, 08 at our very own Training Centre.

This Fellowship experience enriched me both professionally and personally. Today, I am more aware about the needs and rehabilitation of persons with Intellectual Disabilities. Working with the leaders in the SO movement gave me more understanding on how the different acts and polices on disability are formed in different countries around the world. There has been a shift from institutionalization of the intellectually disabled population to family based rehabilitation approach.  Personally, now I am more confident and determined in my future goals.

This fellowship experience has provided me knowledge in areas of sports, management, awareness, promotion, communication training, research and physical therapy. During various visits to different community based programs, I saw the unique strengths of the athletes and how with the community involvement, volunteering and philanthropy, they have become integrated in the society.  Several conferences with some of the great leaders in various part of the world helped me to understand the concept of Leadership better.
India has a huge disability population. It has more than 31 million children and adults with Intellectual Disabilities, more than 10 million persons with Visual Impairment (as per the WHO). Most of the children are unidentified and proper rehabilitative measures are not provided to the needy. With such a huge disability population, it is not only the responsibility of the Government or NGOs to take a leading role, but it should be a responsibility of each one of us to give our best services. There is a dire need to promote volunteering and philanthropy.

Some related press releases:
Special Olympics
Athletes at the Special Olympics

From Jo: Fund Raising!

I’m a graduate! I have to admit I was a bit apprehensive about taking a Certificate Course in Fund Raising. So many worries:

• Would I be able to do it? I hadn’t been a student for years! Would my brain still function?
• How would I manage the travel? It was being held in Delhi over twelve successive weekends. That would mean leaving Dehradun every Thursday evening via the Shatabdi and returning every Sunday by the same train.
• Would it be worth it? The fee for the course was already steep – Rs 12,000! Factor in the travel costs and the cost of my time and we were easily looking at a figure of close to 50,000.

In the end, though, it was one of the most exciting learning experiences of my life. While learning is always possible at any time or place, I think there are moments that are just perfect: when one is ready – when everything comes into play at the right time and the right place and then the learning happens in leaps and bounds.

This course was like that for me: I was determined to get the absolute maximum from every session and I put my full and total attention into it. I realized how important that disciplined effort was when one day I kept getting distracted by text messages and even phone calls. I normally kept my phone in my bag for the entire class, but this day I had to stay in touch with the office because we were sending the Annual Report to the printer for publication and there were many last minute details which only I could approve. The result was that I virtually missed the entire session. I was there, but I wasn’t there.

But speaking of the Annual Report – it was only because of the course that we were sending it to the printer at all. Previously, we have always just printed it out ourselves and then photocopied it. After learning how important a good annual report is for fundraising, we decided to go deluxe and, as luck would have it, we had two graphic designers – Noorie Agarwal and Aileen Aquino - volunteering at that exact moment. They did a beautiful job as you can see for yourself.

I began to see so many things differently. From smaller issues like the importance of branding, the consistent use of our logo, and dealing with the media, to the larger questions of working with the government and having a coherent fundraising strategy in place, it was all so thought provoking and fascinating.

The organizer of the course was a group called Resource Alliance and its heart and soul is a woman named Rati Misra. Rati has a wide and devoted circle of friends and she called upon many of them to come in and share their expertise with the group. The result was a series of informative, entertaining and interactive sessions with a range of experts from many different fields.

I think the most important thing I learned was the concept which has to underpin all successful fund raising – the understanding that fund raising is about relationships. I had always thought of fund raising as a painful necessity of doing good work and my approach was usually to take the Moral High Ground: WE are great and YOU should support us. It never occurred to me to ask what the donor was getting out of giving, to wonder what she wanted, what he thought.

Now that has changed.

The other thing that has changed is that I am no longer afraid of numbers! The four crores (one million dollars) we need for our building no longer worries me. I know that with careful, strategic planning, we will raise it.

Towards the end of the course, Tara Dewan and Nileshwari Kumari joined me for several sessions. Those were, without a doubt, the most fruitful for us as an organization. The synergy of three engaged minds is amazing. When we returned to Dehradun, we made a presentation to the entire senior staff in the hopes of creating a Fund Raising Mindset in the Foundation. The subject is so exciting I think we are bound to succeed.

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From Manju : I was pleasantly surprised when just in the middle of the Assistant Teachers Training Course; I received an invitation for conducting a workshop on Inclusive Education at Dharamshala in Himachal Pradesh for the second time this year. I conducted a similar workshop in January earlier this year.

This invitation was from CTSA-Central Tibetan Schools Administration and the workshop was scheduled for the 31st of October. Just to give a little background, at the request of H.H the Dalai Lama, the Government of India, in 1961, established the Tibetan Schools Society (now called Central Tibetan Schools Administration), an autonomous body regulated by the Indian Ministry of Human Resource Development, to manage and assist schools in India for the education of the children of Tibetan refugees.
There are 28 CTSA schools whose enrolment is currently 9,991 students.

My workshop was part of a week long Orientation Program which was being given to the heads of the Tibetan schools about their new Basic Education Policy and Inclusive Education was an integral part of this policy.

The venue of the workshop was The Collage of Higher Tibetan education which is situated at Sarah, a 20 minutes most beautiful and picturesque drive from Dharamshala .I thoroughly enjoyed this drive amidst the green tea gardens of Sarah.

There were 25 participants, all Heads or Supervisors/ Principals of Tibetan Schools from Nepal and India. For most of them the idea of Inclusion was something totally new. After a day long interactive and Activity based workshop, one of the participants stood up and said that when 2 years back, his school received a circular from the Govt. stating that ramps have to be built in the school building, he could not understand the relevance of that to their school building and even opposed it. But today he said that he understood the importance of that circular.

 I knew that the point was driven home.

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From Aarti: Pinky and I attended the 4th Annual Conference of the Indian Academy of Pediatrics-Childhood Disability Group which was held in Bangalore on 2nd, 3rd, and 4th of November, 2007.

The Pre-conference sessions were jointly organized by RECOUP Neuromusculoskeletal Rehabilitation Centre and Centre for Child Development and Disabilities stressed on certain orthopedic techniques started during the last couple of years. These were SEMLARASS and OSSCS by Dr Deepak Saran and Dr Takashi Matsuo respectively.
The results of these surgeries were very encouraging although it does have a long and painful post operative therapy. However, the advantages in the long run would out-weigh the difficulties of surgery.
The heartening fact was the stress on functional rehabilitation which is our main goal at all our centers as well.

There was a very informative lecture by Dr Karmakar on neural tube defects. The high rates of incidence were alarming, due to deficiency of folic acid in women. Steps are being taken by the government to fortify food. The fortification of wheat is not very effective in our country so a study of fortification of sugar is being done. The only reason why it is taking long is because the taste of sugar would change.

Dr Shobha Srinath spoke on poor scholastic performance due to learning disabilities and how to approach the child with such issues. She also spoke about the need to be innovative in our approach and how important it is in our country to wear ‘many hats’, for want of qualified professionals in the field of disability.

The need of the hour was, increasing awareness about early intervention and setting up cost effective services to reduce childhood disabilities.

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From Tara: I attended the National Conference on Inclusive Education held at the Shri Ram School, Gurgaon along with Meena, Savita and Jo. We met a plethora of people – some well known and others whom we got to know well! The atmosphere in the conference hall was charged with positive energy and high expectations of people who had come together with a common purpose – to share ideas and discuss strategies on Inclusive Education.
The panelists were all accomplished individuals – educationalists, therapists, doctors, heads of NGO’s, counselors, parents and government representatives. Each one had a lot to contribute towards understanding the term ‘inclusion’; some views were common and some individualistic; some speakers were traditional in their approach and others innovative; however there was one who was not only different but unorthodox, creative, bold and very effective – she was Jo.

Jo Chopra, Executive Director of the Latika Roy Foundation performed a head stand on the stage right at the beginning of her presentation! The message was perfectly clear and couldn’t have been more explicit – we need to turn our education system upside down. Our schools are ailing and their systems need cleansing and re-booting, the policy of exclusion is the rule rather than the exception and has crept in and spread its ugly tentacles through our education system and corrupted our values – this decay has got to be flushed out of the system and we are the ones who can make this happen.

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From Dr. Sebastian: During my Bangalore trip I also had the pleasure of visiting the Academy for Severe Handicaps and Autism (ASHA) on the 19th of September. The building is quite difficult to find. In the whole block I see only house numbers starting with an ‘S’. Only after a lot of walking and asking I realize that some side-street houses have numbers starting with ‘L’. And when I finally come to L-76 I first have to pass the numbers L-76/1, L-76/2 and L-76/3 and L-76 before I come to L-76/A.

Once inside the building there is no chaos anymore. Every floor has a number of tiny classrooms nicely labeled. On every door there is a list of the names of the children that are studying inside. Mrs. Jyoti, who is showing me around, explains to me the different nature of the different classes. A group of children between 4 and 6 are practicing fine motor skills by beading. There is one teacher accompanying two children. Every hour one child goes to another room for an one-hour individual session.

In another classroom with somewhat older children, Maths and English are taught. Mrs. Jyoti explains to me that English is the medium of teaching for most children. There are some small classes where Kannada (the local spoken language in Bangalore) is taught, as well.

There is also a vocational training class, where I saw some beautifully painted cards. A music teacher and an art teacher come to the centre to teach on a regular basis.

”Presently our classes are full”, says Jayashree Ramesh, head of ASHA, when I talk to her in her office. “We have a capacity for 70 children with autism, but if more children with autism come, we will not be able to take them. For children with autism we must keep the classes structured and small.”

The children study on a daily basis form 10 am till 4 pm. The fee is 1,500 rupees per month. For those who cannot afford it, the fee is adjusted.

”Happily about 50% of the parents are able to pay the full amount. Parents know that this is important for them. Some parents’ pay three times the amount on traveling as compared to the adjusted monthly fee”, says Jayashree Ramesh.

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From Dr. Sebastian: I visited the Apoorva Centre for Autism, Bangalore this September. It was a very interesting visit which began after I ‘stumbled’ upon the entrance.

Just one street ahead of Mobility India one will find Apoorva Center for Autism. When I asked two men on the street, they told me that there was no such thing there. After the men had walked ahead I realized that I was standing right in front of the gate of the Apoorva Center for Autism. I really had to make a study of the signboard before I figured it out! The signboard announces the many things that are organized in this building like the ‘Lions Club of Sarakki’, 'Legal Assistance’ etc, and somewhere, it also says 'Center for autism'.
 
When I enter the building I am welcomed by a friendly woman who explains to me that she is the mother of one of the children at the school. "That is very much the character of this cente" she explains to me; "In fact, the centre started off as being run only by the mothers of children with autism. For us it was too far to go everyday all the way to NIMHANS (the psychiatric hospital in Bangalore) or to ASHA (another organization that works with autistic children). Some of the parents and professionals requested Lions Club of Sarakki in 1996 - 97 to provide some space to run the school and after some negotiations we could use this building." I am very much impressed with this story, not only because it shows that parents of autistic children can unite and do something valuable for their children, but also because of the Lions Club having been so generous.
 
Unfortunately, Nithya Lakshmi, who is heading the Apoorva Center for Autism since three years is not there. Instead Nithya Srinivasan, who is a special educator, guides me around.

I enter a small hall where in every corner a small group of children is learning. The classes are divided by thin wooden movable walls. "It is not an ideal situation, yet" says Nithya. "We are very happy with what the Lions Club Sarakki has given us, but nowadays we have 40 children with autism coming on a daily basis. We feel we have to move ahead and find a bigger building."
 
At Apoorva Center for Autism, children are taught in English. The mothers of autistic children still play an important role in teaching. Nithya tells me that some of the mothers have been there since the beginning. They have done courses on teaching autistic children. In fact some of them have become so efficient and confident in teaching that they are able to manage three autistic children at the same time.

When I am about to leave, one of the children whispers something in his teacher’s ear. "He said that he doesn't believe that you are a doctor, because you are not wearing a stethoscope," says the teacher. The child looks at me very seriously. I promise him that during my next visit I will bring my stethoscope.
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From Jo: I went to Mumbai on a triple mission: to find a speech therapist, to see how our grant proposal was doing at the Sir Dorabji Tata Trust and to meet Vibha Krishnamurthy (who has become a necessity for my well-being). Here’s how it went:

I had called Mrs Gore, the head of the speech therapy department at Nair Hospital in Mumbai, one of the best known training institutes in the country, to ask if I could make a recruitment pitch to  her students and she was quite discouraging on the phone. She said none of her students was likely to want to move to Dehradun – they either stayed in Mumbai or went abroad. I persisted and she finally asked me to write a letter with a formal request and she would consider it. I did, but got no reply. When I next called her to confirm the date for my meeting, she seemed surprised, again discouraged me, but finally relented and gave me a date and a time.

When I met her in person, she turned out to be nothing like the formidable, no-nonsense voice I had heard on the phone. She was a warm and understanding person, genuinely concerned about our difficulties in finding speech therapists and as perplexed as we are about why there are so few in the world.

As we chatted, she suddenly went quiet. “Wait a minute!” she said. “I’ve got an idea.” She left the room and made a phone call, then asked me to come and speak to the person on the line. That person was a former student who had done a master’s in speech therapy and was engaged to a young man who was also a speech therapist. The problem was that she was Muslim and he was Hindu and their families were opposed to their marriage. They were looking for a place outside of Mumbai where both could find work.

I spoke with the young woman and she seemed interested. We are now in correspondence and trying to fix up a time for them to come and visit us here in Dehradun – watch this space!

My meeting with the Sir Dorabji Tata Trust turned out to be a formality and a social call. Jasmine Pavri assured me that the grant was going to go through and that we just had to be patient for a few weeks more. And two weeks later, the first installment – 85 lakhs! (nearly $200,000) – arrived in the mail.

And finally, I spent the night at Vibha’s place, played with her two gorgeous boys (Kabir and Karun, whom I adore because they think my Hindi is perfect) and went out with her for a wonderful Italian dinner where we had a conversation that has made me re-think many of my ideas about inclusion and mainstream schools. But more on that later!