Family of disabled

Family of Disabled, an organization for the disabled has not only made a difference in the life of Mr Rajinder Johar, founder but also revolutionized the way a disabled person in India perceives himself. A quadriplegic, declared 100 percent disabled by the doctors, Mr Johar has set his own parameters of disability and is in the process of changing the world’s view towards disability.

Working as a senior occupational therapist in Lucknow’s King George Medical College, when an injury to his spinal cord rendered him disabled, he decided to work towards the welfare of the disabled. He launched a voluntary organization Family of Disability in 1992 with the blessings of Mother Teresa to cater to the needs of the disabled people. The purpose is to provide training to people with disability so that they can support themselves and their families. Having trained 334 people already, Family of Disability aims to target 350 persons till December 2007. The motto is to make the family a “bigger family” Mainly active in Delhi, the organization provides training to lower middle class people on various skills like Cycle repairing, selling tobacco products, opening tea stalls, soft drink stalls, heater parts, repair shops, STD/PCO booths, key rings and selling pens.

Johar feels how a society is culturally developed can be judged by the way they treat their disabled people.“Indian society is a very insensitive society as far as disability is concerned and people who are sensitive towards disability are in minority.” According to him no one is completely disabled, the remaining faculties are like blank cheque and they should be encashed properly. In his venture, his daughter Preeti is helping him with complete devotion and both are managing and promoting their beautiful dream “Family of Disabled” successfully.

To know more about the wonderful works of family of Disable, please visit their website http://www.familyofdisabled.org/. Their address :-B- 1/500, Janak Puri, New Delhi 110058


Posted on 19th dec 2007

Combating fears: Strife to excel

She loved to laugh and made everyone around her smile. This short write-up is about Anastasiya, a friend of mine who is from a small town in Bulgaria. A charming, enthusiastic personality who loved to travel and meet new people. A bright, intelligent girl who was not quite sure of what she wanted to do professionally until she was admitted to the hospital in the summer of 2005. She was admitted on the basis of having breathing difficulties but was detected of having lung cancer. Surgery followed by chemotherapy was administered immediately to cure her of the disease. Initially she and everyone around her were quite surprised with the diagnosis. How can a perfectly normal 23-year-old individual be diagnosed with cancer? She was curious to understand how a perfectly normal body starts to malfunction.

After this incident, she was inspired to contribute her efforts towards finding a cure for cancer. In order to understand what went wrong, she first wanted to determine the basic framework in which in the human body works. She had no idea how the mechanisms of biology worked as she had an undergraduate degree in history. Nevertheless she took the challenge to understand biology even after knowing that it was a uphill task for her considering that it was a new subject altogether and that she was not completely fit (as she was still undergoing chemotherapy) to take up the job. But her determination surpassed all her fears and she entered Graduate School to learn biology in 2006. While at graduate school she was fascinated about learning the intricacies of the various mechanisms that put the human body in the right balance such that it functions optimally. She had very high levels of motivation, as evident from the fact that even when she had to go through a round of chemotherapy the very next day she was back to her books and doing experiments. In school, she excelled in everything she did, right from her coursework to performing actual experiments in the lab. At times she got that strange look “ you have cancer” from a few people but she didn't let that affect her performance at something that she loved to do.

Fortunately, she has been cured of the disease and is living well now. In her spare time she works with children who have cancer. Her story and enthusiasm about life has helped a lot of people overcome their fears of cancer and has allowed them to see life from a different perspective.

Anastasiya’s enthusiasm and motivation allowed her to do well inspite of her disabilities. As she quotes “though it would take a considerable amount of time to understand the underpinnings of cancer biology and come up with a treatment my life's mission is to contribute towards finding a cure for cancer” and try to save millions of other people from the pain and suffering associated with this disease.

Though this is an exceptional story, it is nevertheless true and an inspiration not only to me but hopefully through this website to millions of others. I learnt a lot from this young lady who despite her disabilities chased her dreams and is working successfully to achieving it and making it come true.

Contributed by Ms Tania, 16th Dec 2007

Online study of blogs and inclusive community

Deepstambha did an online study of 150 bloggers. Questionnaires were sent to bloggers on how blogs could contribute to an inclusive society and in highlighting issues and concerns of persons with disability.
About 150 bloggers were sent the questionnaire. The following questions were asked to the bloggers:
1) Do you think the blogosphere can contribute towards highlighting the issues and concerns of the persons with disability and the terminally ill? If yes, how?
2) Can blogs be part of efforts to promote an Inclusive Society?
3) What inspired you to start your blog?
4) What are the challenges you are facing in promoting your blog?
5) Do you consider the blog as one of your achievements? If yes, how?
6) Can blogs help raise resources? How can blogs be sustained over a period of time?
7) Is blog an effective medium through which you can connect to the persons with disability across the world? If yes, how?

While almost all respondents in the study underlined that blogs do have a role in highlighting the issues and concerns of the persons with disability, some had a word of caution. For the record, only 35 per cent of the respondents replied back to our questionnaire.

Stephen Pate of http://peidisabilityalert.blogspot.com/ pointed out that the disadvantage of blogs is narrow market penetration and lack of profile. “Any media can impact society if the media themselves have the interest to readers” he emphasizes. Others felt that it is a vehicle for expression accessed by millions. One of our respondent said, “The blogosphere is exerting significant pressure to move our world in the direction of a more inclusive society because it makes the issues and concerns of people much more visible, whether we are talking about disability, or ethnic identity, or religion.”

Lorraine in her blog, http://buggeringonwards.blogspot.com has said that many people may not have a voice within their own society or culture but the internet allows everyone to speak up and have their issues and concerns heard.” She considered blog as one of her major achievement. “I have been contacted by people all around the world who tells me they have read it and enjoyed it. I have also been writing it for 18 months which is a miracle”, she exclaims.

Another blogger, Atila the Mom of http://lilwalnutbrain.blogspot.com says, “If individual bloggers are able to develop a base of readers on their own, then they can contribute towards highlighting issues and concerns of persons with disability.” In fact while doing the research we found many bloggers not revealing their own identify and instead using

Dr Rohit Trivedi, a volunteer with Arushi, Bhopal (he is not a blogger) talks succinctly on the role of blogs, “The blogosphere and other tools of the digital spaces should be used astutely to sensitise people on disability. It is a wonderful tool to develop linkages worldwide so that it strengthens advocacy efforts.” Dr Trivedi is a person with visual impairment and has been working on the issue of accessibility and inclusive education.

On the question of whether blogs can be part of efforts to promote an Inclusive Society, the respondents were unanimous asserting that the blogosphere cannot be the only tool for achieving it. Instead it could contribute only when in conjunction with other efforts especially at the grassroots and the societal level.

Many of the bloggers said they had something to say on the issue and hence they started the blog. Others were passionate to work on a particular area of disability hence they were inspired to start the blog. Many persons with disability wanted to share their experiences and this acted as a catalyst to start their own blogs. The reasons of starting a blog are varied but most importantly it is the deep interest which pushes a person to initiate a blog. For instance, Abfh in her http://autisticbfh.blogspot.com says, “I started my blog out of frustration at seeing autistic people who meekly accepted the stereotypes about autism and believed themselves to be mentally inferior. Since I started the blog, my perspective has broadened and I have started writing more about issues of family, community, and social attitudes toward disability and human differences in general.”

On the issue of challenges in promoting one’s blog, many said it was the time factor and the knowledge of blog promotion techniques which were obstacles. Hugyourkidz (real name not known) says, “You have to comment on other people’s blogs to get them to come to yours. Just writing what you think are brilliant pearls of thought aren’t enough if you don’t give two shifts what other people think.” This viewpoint is shared by many others who emphasize that unless one comment on others blog it is not easy to get visitors to one’s blog. It is all about networking.

Many of the passionate bloggers consider their blogs as some kind of achievement as they are able to put forward their views and place them in the public domain. Many feel they have been able to carry forward their advocacy efforts through their blogs. Abfh for instance says, “My blog has motivated people to develop a broader and more view of human diversity, to be more willing to accept their own differences and those of their family members, to think more about social issues, and to discuss potential ways of dealing with intolerance and other social problems.”

Our study also dealt with the issue of whether blogs can help raise resources. While most feel that it is a great challenge to raise resources and sustain it over a long period of time others had no idea of whether a blog could actually help in raising resources. “It is again a question of time,” Katie, one of the respondent underscored, “Most bloggers are simple volunteers who are into their professional lives. They do blogging only in their free time. So one can’t devote much time and hence chances of proper networking and devising strategies for raising resources are little. However it is important to learn weblog promotion techniques. ” She has a blog http://bipolarworks.wordpress.com/

Again almost all the respondents were unanimous in asserting that digital spaces like blogs are effective medium for networking notwithstanding the connectivity issues in third world countries. It helps in bringing organizations and individuals together and plays an important role in advocacy efforts worldwide.

Meaning

Many people have approached asking us the meaning of the word Deepstambha.
Deepstambha is a Sanskrit word meaning light house. Our blog is devoted to highlight the positive spirit all those inspite of their disadvantages(both socially and medically) are standing in the middle of the powerful and strong waves and giving direction and light to others. Like a light house they are not only standing erect but helping others also to move forward in life.

Online study on blogosphere and inclusive society

To understand the issues and concerns of the socio- medically disadvantaged being highlighted in the blogosphere; Deepstambha is doing an online study. The study will help better understanding of the contents related to the socio- medically disadvantaged in the blogosphere, the types of related blogs, the issues highlighted in these blogs and whether they can lead to the promotion of an inclusive society.

We have a few questions which will help us conduct the study. We request you to spare a few moment of yours to respond to this questionnaire. As soon as we are able to compile the findings we will share our findings in our blog. We request you to support us in this endeavor of ours and answer the questions.

1) Do you think the blogosphere can contribute towards highlighting the issues and concerns of the persons with disability and the terminally ill? If yes, how?

2) Can blogs be part of efforts to promote an Inclusive Society?

3) What inspired you to start your blog?

4) What are the challenges you are facing in promoting your blog?

5) Do you consider the blog as one of your achievements? If yes, how?

6) Can blogs help raise resources? How can blogs be sustained over a period of time?

7) Is blog an effective medium through which you can connect to the persons with disability across the world? If yes, how?

An advocate to promote co-partnership in volunteering

One of the first visually impaired candidates from Madhya Pradesh to get selected in the National Council of Educational Research and Training's National Talent Scholarship, Dr Rohit Trivedi has traversed a long way in becoming a leading advocate on disability rights. Involved with Arushi, Bhopal, a pioneering organization working on disability issues, Dr Trivedi and his team have been promoting co-partnership in volunteering. By profession he is Asstt. Professor of English at Sarojini Naidu Govt. Girls' P.G. College , Bhopal.


Arushi over the years has emerged as an important organization to promote volunteering in the disability sector in India and Dr Trivedi emphasizes that besides being a catalyst in the mainstreaming process, co-partnership in volunteering or Inclusive Volunteering brings diversity to the entire volunteering program. It ensures that people from diverse backgrounds and different abilities come together to work for a particular cause.

Also, volunteering in cross-disability issues must be promoted, he says. Then a volunteer with visual impairment can know more about and work on the concerns of say a hearing impaired.

Dr Rohit Trivedi has been in the forefront of promoting accessibility in public places and has been responsible in making various places in Madhya Pradesh and elsewhere barrier-free.

Posted by Anil Mudgal , Bhopal

Experience of a disabled person, who is silently contributing to the Society

Mr. Nurul Amin, 50, lost his left hand in an electric live wire accident in 1984. His right hand just remained joined in body somehow. The hand is totally inactive. There are lots of brunt mark in his body. Though he is not disable by birth. This accident caused a great loss in his life and his family. But, he has not given up. He starts doing something like teaching little children in his area of a remote village. He had some education -- non-matriculation. However, for the little children's education it is enough. For his effort, many children got literate from the cruel hand of illiteracy. Many of his students passed SSC and HSC exams are now doing jobs or got invovlved in poultry business. At least for his little effort, many children came out from the darkness of uneducation. This guy still is teaching and teaching. He got married and now has two children. He himself teaches them and has opened a grocery shop near his house. This shop also helps the people adjacent to his house, as he sells goods on credit. Besides, upon establishment of his shop, people do not need to cross a mile for buying essentials.
(Contribution by Mr. Ziaul Haque, Bangladesh)

Muscular Dystophy

Anjlee Agarwal and Sanjeev Sachdeva, both persons with muscular dystrophy, a muscle disease that causes muscle weakness are pioneers in barrier-free tourism in India. Muscular dystrophies are characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. Both are assisted wheelchair users and have been at the forefront of advocacy campaigns on the need to make public places accessible. Versatile and always bubbling with creative ideas, both firmly believe that persons with disability have a right to live with dignity and grace.
Anjlee and Sanjeev have the distinction of conducting workshops on accessibility and barrier-free tourism both in India and abroad. “Barrier-free tourism can go a long way in integrating Persons with Disability in the mainstream society,” they assert. They point out that travel tours for persons with disabilities can be actually act as therapy for them. “When one goes to an unknown place, historical or inaccessible, one learns more. Through such exposure persons with disability develop a sense of confidence and a determination to fight against all odds,” the positive- spirited Anjlee and Sanjeev spells out their mantra. Besides such trips help create awareness on disability in all the places we go, they point out. Both have been the inspiration behind Samarthya which has been playing a pivotal role in advocating the vision of Anjlee and Sanjeev for a barrier-free world. Working for the past more than five years, Samarthya’s prime goal is to promote “Inclusive Society and Universal Design in the Built Environment and Transportation”. Samarthya for the past several years have been able to develop modules on accessibility and have been conducting accessibility audits in several historical and public places.
Winners of several awards, Anjlee and Sanjeev are an epitome of courage and determination. They have shown the world that nothing is impossible for the socio-medically disadvantaged and they are capable of doing which many general persons cannot even dream of.

For more about the work of Anjlee and Sanjeev, log on to http://www.samarthyam.org/

(contribution by Ms Ruchi Sabharwal dated 4th Aug 2007)

Comments: The story of Anjlee and Sanjeev is very inspiring. Despite their disabilities, they are working hard to change the life of many others like them. Accessibility is an important issue and major campaign needs to be launched to make people aware on how to make public places barrier-free. There should be a policy directive that all public places are made accessible