Category: Experiences

Celebrating the 8th Anniversary of the Society for the Empowerment of the Deaf-Blind (SEDB) in India

Celebrating the 8th Anniversary of the Society for the Empowerment of the Deaf-Blind (SEDB) in India

Posted on by Sunil Abbas

On October 22, 2023, the Society for the Empowerment of the Deaf-Blind (SEDB) India celebrated its 8th anniversary. SEDB is a unique organization run entirely by deafblind volunteers and a deafblind team, and it was established on October 20, 2015, with its head office located in Nasik.
The founder of SEDB, Mr. Zamir Dhale, encouraged his deafblind team members to work independently, fostering their empowerment and self-reliance. The anniversary celebration took place at the Dr. Babasaheb Ambedkar Loverlane Venue in Mazgaon, Byculla’ Mumbai East. It was a moment of pride and joy for Zamir as he acknowledged the hard work and dedication of the deafblind organisers and their supportive deaf team members.
During the event, Ms. Bushra Merchant, who is deaf-low vision, and Mr. Sunil Abbas, the General Secretary of SEDB, played pivotal roles in organising the celebration. Ms. Bushra Merchant, a strong leader of the deafblind women’s group, recognized the efforts of Ms. Varsha Pattem, who is also deafblind, Ms. Reshma Shirsat, a deaf individual, and Mr. Bhausaheb Jadhav, who is also deaf. They were commended for their hard work in securing a suitable venue and arranging lunch and high tea for the occasion.
Zamir expressed his gratitude by presenting a special flower to these dedicated individuals, emphasizing that they have played a crucial role in strengthening SEDB’s mission and raising awareness about the rights and needs of the deafblind community. He also highlighted the importance of deafblind people’s demands for better education, higher education, job opportunities, and financial assistance, urging the Government of India to understand and address these needs.
In addition to the anniversary celebration, the event also included the celebration of Ms. Anita’s birthday, who is a deafblind member of SEDB. Ms. Bushra brought a special cake as a thoughtful gift for SEDB, adding to the joyous occasion.
The event was made possible through the support and encouragement of well-wishers, donors, and both deaf and non-disabled friends and colleagues. The parents of deafblind children, including Ms. Geri from Usher India, also contributed to the success of this beautiful event.
To relive the memorable moments, you can watch the video and view the photos through the following link:

Report on DbI World Conference 2023

Report on DbI World Conference 2023

Posted on by Sunil Abbas

Event Overview

The DbI (Deafblind International) World Conference 2023 took place in Ottawa, Canada, from July 25th to 28th. The conference aimed to bring together individuals, organizations, and professionals working in the field of deafblindness to share knowledge, research, and experiences. The event covered a wide range of topics related to the deafblind community, including technology, accessibility, empowerment, and support services.

Participation of Lion Sunil Abbas and SEDB:

Lion Sunil Abbas, the General Secretary of the Society for the Empowerment of the Deaf-Blind (SEDB), was a prominent participant in the conference. The SEDB collaborated with Chetana Trust and submitted several proposals for presentations at the conference. These proposals highlighted the work being done for the deafblind community in India, particularly focusing on participatory research projects conducted after the National Conference of the Deafblind in 2020.

Presentation Topics:

SEDB and Chetana Trust’s joint presentations at the conference covered two important themes:

1.

Breakout Session 2F: How Smartphones Can Enhance the Quality of Life for the Deafblind: This presentation highlighted the significance of smartphones in improving the lives of the deafblind. The presentation included insights from Sunil Abbas on his personal experience using a smartphone and his journey of discovering its potential. Challenges related to affordability and proper training were discussed, along with the observation that existing technology programs often overlook the unique needs of the deafblind community.

2.

Breakout Session 5C: Technology, Learning, and Independence Among Adults Who Become Deafblind: The second presentation delved into the role of technology in the lives of the deafblind. Dr. Namita Jacob and Teresa Antony shared data from their studies, including research during the pandemic. Lion Sunil Abbas discussed the challenges faced when training adults who have recently become deafblind and expressed the aspiration to establish a center where such individuals can receive services from trained deafblind professionals.

Conference Highlights:

The conference was a platform for fruitful discussions, networking, and learning. Participants from various countries, including deafblind individuals, service providers, family members, and researchers, gathered to exchange ideas and experiences.

The conference program included various breakout sessions, group meetings, and interactive activities. Notable presentations were given by Divya, Bapin, and Chris Woodfill. Divya spoke about her advocacy work, Bapin and Chris shared their insights, and Michelle from Australia introduced Sunil to her specialized interpreter’s table and Focus device.

Future Plans and Announcements:

The conference concluded with the announcement that the next DbI conference will be held in Switzerland in 2027. Sunil Abbas, along with others like Chris Woodfill and Divya, expressed their readiness to attend this future event.

Conclusion:

The DbI World Conference 2023 in Ottawa provided a platform for the exchange of valuable insights, research findings, and personal experiences related to the deafblind community. Sunil Abbas’ active participation, along with SEDB and Chetana Trust’s contributions, showcased the ongoing efforts to empower and support deafblind individuals in India. The conference marked a significant step towards advancing awareness and understanding of the challenges and potential of the deafblind community on a global scale.

2nd NCDB 2023

2nd NCDB 2023

Posted on by Sunil Abbas

2nd NCDB 2023

2nd NCDB, Ecumenical Christian Center, Bangalore

SEDB organised a 3-day conference – 2nd National Conference of the Deaf-Blind(NCDB) 2023 in collaboration with Enable India and Chetana Trust between 2nd to the 4th February 2023 . The conference was funded by Allegis. Our chief guest was Lion Dr.  A. K. Abbas and his wife, Ayesha, the parents of Sunil and Reena who are deafblind. Zamir Dhale, the founder of SEDB presented Mrs. Beroz Vacha  Memorial Award to Lion Dr. Abbas for his encouragement towards upliftment of  deafblind people in India. His contribution and support enabled Zamir Dhale and Sunil Abbas to join Pradip Sinha in participating in the General Assembly and conference conducted by the World Federation of The Deafblind(WFDB).

The first two mornings of the conference were filled with presentations and discussions led by the deafblind leaders of SEDB. The first session on Livelihood was lead by Zamir Dhale. The second session was on becoming deaf-blind as an adult and was led by Sunil Abbas. The third session on training & technology was led by Pradip Sinha. Each of them invited several SEDB members to present their experience and learning. There was one zoom session and Ms. Shruti Lata from Sense International India spoke on RPWD, while Ms. Akiko Fuluda from Japan spoke of the situation in Asia.  On the first day, a survey of deafblind participants was conducted, to capture the level of well-being experienced in their lives. This survey, together with the more in-depth support survey was led by Chetana Trust and will be analysed along with deafblind leaders from SEDB. The results will be used to drive SEDB actions and advocacy.

Each afternoon of the first two days had games and activities, followed by stalls. Enable India conducted several interviews to create self advocacy tools for each participant. They will compile and share this information with SEDB. TorchIt had a stall and gave hands-on experience to the participants of their technology. The games and activities were exciting and fun. A spontaneous Fashion Show was organized by participants. Mr.Raman from Bangalore acted as a lady very well. Ms. Reshma who is deaf’ Ms. Florita who is deaf_low vision and  Mr. Naveen, who is deaf-blind danced beautifully. Nilesh and Neeta were crowned the winners and all winners received beautiful crowns, sashes and bags of perfumed potpourri.

On the third day, some participants were invited to visit a factory that made pencils while others were taken to an exhibition of wares from different states. At the conclusion of the conference, Mr. Dipesh, the Chairman of Enable India, Lion Dr. Abbas and Dr. Namita Jacob, the Founder Director of Chetana Trust, Chennai were invited to give participation certificates to all including SEDB members who accompanied the deafblind participants and supported them through the conference. All participants received little knitted squares filled with potpourri as a gift from Chetana Trust marking the end of a two year collaboration of those who supported the deafblind community through the pandemic. The little perfumed pouches were also presented to the hearing and the deaf interpreters who were present through the NCDB conference.

Zamir Dhale thanked all for the support towards deafblind conference and making it a success.

 

Empower 2022 Conference

Empower 2022 Conference

Posted on by AqilChinoy
Empower 2022 conference was held from 13th to 15th October 2022 at  IITM Research Park, Chennai.We were invited to attend the conference. The Founder of Society for the Empowerment of the Deaf-Blind, (SEDB), Mr. Zamir Dhale decided to send his colleagues, Mr. Sunil Abbas, General Secretary and Mr. c Sinha, Chairman to attend the conference. The tactile signing interpreters and Access Providers were provided by the conference and Chetana Trust, Chennai. Through the workshop, Mr. Kesavan, Mr. Rajesh, Mr. Ambrose, Dr. Namita, Ms. Sudha and Ms. Teresa were there to help us with interpretation  and worked very hard to provide access. We are very grateful for their support. We used to book taxis independently through Uber and Ola but the support of the access provider was really appreciated.
People who attended the conference learned a lot about the deafblind people like us. When they met and interacted with us, they understood that tactile communication and specialized interpreters  are very important for deafblind people to learn to communicate and understand the whole world. So many people wanted to meet and interact with us to understand deafblind issues. They were not aware about the difficulties of deafblind people.
We visited many different exhibits and learned about the latest devices developed for persons with disabilities. We learned for the first time about the wheelchair which helps a person with locomotor impairment to stand up independently.
Another innovation is by a company called Neomotion. It is a wheelchair with a connection that converts it into a  bike. A wheelchair user can drive on road with it. Pradip decided to try and surprised everyone when he learnt to drive correctly. He looked very confident on bike and everyone was impressed.
We explored many different devices for the visually impaired persons and gave some feedback which can be useful for the deafblind as well, by making the app screen-reader friendly. We were excited to purchase very good and useful canes from the exhibition. Through the conference, we  interacted with lots of people with disabilities from all across India and we learned a lot from their experiences and success stories.
In the workshop, we learned how thermoplastics can be cut, heated and quickly moulded to make it easy for people with hand injuries and weaknesses to hold pencils or tools and do many activities. It was a practical workshop and very interesting. There was also a visit to "Museum of Possibilities" (MOP) where all kinds of assistive technologies are displayed in areas like leisure, daily life, work and communication. There were many speakers on assistive technology like Mr Kasnabis from WHO and Dr. Namita also presented on technology and early reading. There were different awards and competition winners and one team got a gift of one lakh!
Thanks to the Empower 2022 conference, for giving us many opportunities to learn a lot of new experiences in our life. Nothing is impossible. The blind person is a tough life, Deaf is also a tough life but deafblind is the toughest life.  Next year, IIT Madras will host the Empower 2023 conference again. We hope that it will increase the technologies available to persons who are deafblind
A Report on Our Trip to Kenya

A Report on Our Trip to Kenya

Posted on by AqilChinoy

I would like to share a exciting news with you all. We (Pradip Sinha -The Chairman | Sunil Abbas – The General Secretary and Zamir Dhale – The Founder of the SEDB, India) went to attend the 6th General Assembly at World federation Of The Deaf-Blind (WFDB) that hosted the workshop in Nairobi, Kenya from 24th to 29th of October 2022. It was an great opportunity to network with various deafblind leaders across the globe. We were able to share and enrich our rich knowledge and experiences of each one of our journey in empowering deaf-blind across geographic locations. We strongly believe this knowledge is very rich and will help us to achieve many successes. We learned and shared our experiences with each other. We learned a lot from their experiences. We also learned to understand many different laws. It was a very different. We motivated Kenyan who are deaf and deafblind that they are facing problems such as discriminations against law and they were advised to overcome all difficulties and problems in their life.

WFDB and Sense International UK team members have made a 2nd global report on deafblindness, which we discussed elaborately and mutually agreed on the report and it will go to UN for the approval, I do hope that we will show the globe report to Government  Of India.

Some of deafblind leaders from Spain, Sweden, Ecuador, Colombia and North America are very strong in advocating. They talked a lot in the discussion groups about the rights to information means deafblind should have the knowledge of different laws and how to build their skills. We discussed about accessible health and technologies in advocacy work. We, the deafblind Indians are luckily to have many deafblind advocates and lawyers in the world. The current president of WFDB is Ms. Sania who is deafblind woman from Croatia has completed PhD. The Vice President is Mr. Samuel. These two people and myself (Zamir) have been elected as Asia Regional Representative of the WFDB board. So the three of the new board members are deafblind. I strongly feel that government of India will be recognise deafblind people and we need to make the government officials understand deafblind people have the rights to ask for better education training,  access to technologies and employment. We should have the equal rights like others. Deafblind should have a separate disability as a unique disability.

Have you ever wondered on these questions? What are your rights? What is my rights? What is the importance of advocacy? Advocacy is important because deafblind people wanted to educate people about how to help deafblind in communication, education,  training and good job to help them to earn equal salaries, not to depend on anyone for all help. Why does government of India not wanted to recognise as deafblind category and make it mixed up deaf-blindness in disability law with Multiple disabilities. Why can’t deafblind be a separate disability?

We believe that we will do hard work to make government to understand, We got continue to raise voices about our rights and needs till its heard and is answered.

New report highlights major gaps in access experienced by people with deafblindness, The Indian Express

New report highlights major gaps in access experienced by people with deafblindness, The Indian Express

Posted on by AqilChinoy

The Newspaper link: https://indianexpress.com/article/lifestyle/life-style/deafblindness-disability-report-2020-6560937/

Survey Report link: http://3.111.144.114/wp-content/uploads/2020/08/TheIndianExpress-DBAccess.pdf

The article extracted from the newspaper is below (for accessibility):

A recently-released report based on a survey among adult deafblinds, highlights the lack of access to various opportunities for the deafblinds in the country. As per report, access to education, employment, assistive devices and equipment, financial inclusion, healthcare and awareness of rights are some of the prominent issues faced by the community.

According to the reports, all the respondents said they needed support to travel to and from new places, with 37.5 per cent of respondents expressing the need for a lot of support and 56 per cent requiring some support. Six per cent of the respondents expressed the need for a lot of support even in familiar places, while 62.5 per cent needed at least little support to travel to and from work and to familiar places. 25 per cent said they could manage independently if the places were familiar to them.

Despite section 42 of Rights of Persons with Disability Act (RPWD) Act, 2016 which mandated all appropriate government agencies to ensure accessibility of Information and Communication including sign language interpretation, the report highlighted how the Act is not specific on the specific support services for persons with deafblindness, such as tactile interpretation and communication technology/devices.

Conducted by the Society for the Empowerment of the Deafblind (SEDB) at a national conference for deafblind people held in January, 2020, in Indian state of Kerala, the sample size was small with 17 deafblinds but significant, as per the SEDB chief Zamir Dhale.

When it came to mobility and communication, 87 per cent of the respondents expressed that they have knowledge about the various assistive devices. However, many reported not owning many basic devices. Of the respondents, 12.5 per cent reported to have canes while 50 per cent said they do not have smart canes.

Although respondents had exposure to and training from various civil society organisations in the areas of communication devices, 25 per cent reported lack of stylus and slate, 43.75 per cent said they do not have Brailler (Braille typewriter) 37.5 per cent stated that do not have a Braille reader.

Many participants expressed that they find the costs of devices are very high and management and maintenance a constant barrier.

In terms of employment, the survey reported that 78.57 per cent were employed in the informal sector. It also noted that 43.75 per cent of those working reported that they were not paid at par with others; 25 per cent said there is no pay and 50 per cent of the respondents stated that their disability hindered their access to work and employment. However, those working felt that their impairment did not impact their work.

Deafblind individuals are clubbed with persons with multiple disabilities, which leads to the lacuna, the report highlighted. ‘Already a diverse group within themselves, this further dilutes the understanding of their situation and specific needs. This is reflected in lack of specific policies that addresses the specific issues confronting deafblind people. Also, the existing policies and programs related to persons with disabilities do not take into account the specific support requirements and the specific marginalisation experienced by deafblind people. For example, though there is a discussion on Indian Sign Language Institute, there is a lack of commitment to ensure human resources that provides tactile interpretation services and a complete absence of attention to the need for additional knowledge on how to guide and orient a person who is deafblind in different situations.’

Some of the recommendations of the report include

*Amend the RPDA 2016 to include persons with deafblindness as a separate category of disability.
*Orientation and training of government officials, particularly the ministries and departments dealing with information and communication, to strictly adhere to the web accessibility standards. It is crucial at a time when the world is moving to digital-centric functioning, and far more so now, given the pandemic that has led to severe restrictions on movement and personal (face-to-face) communication.
*All service portals should be audited by experiential experts with knowledge of technology for their accessibility, with immediate effect. This is important since many of the service portals use CAPTCHA (automated systems for detecting non-human tools) that are not accessible for people with print disabilities.
*To arrive at a policy to ensure support service such as interpreter – guides and personal assistance services.

Being Deafblind in a Lockdown World

Being Deafblind in a Lockdown World

Posted on by AqilChinoy

For a Deafblind person, communication is first and foremost using touch, which can easily convey simple meanings. With a little practice, it is possible to create and communicate more complex things as well, and this works between deafblind persons as well as with those who are Deafblind but have learned how to use Tactile Sign Language.

But in the lockdown world, with the fear of the COVID-19 contagion that has spread everywhere far more and faster than the contagion itself, how can two or more persons who need to communicate do so, without fear of spreading the virus?

Video calling on the phone is easy for a Deaf person, as both persons can see the signing gestures (Indian Sign Language), but what can a Deafblind person do? The lack of phone apps that deal with this problem means that Deafblind persons must depend only on touch itself.

This is not such a great problem for me, as long as I am using my computer and email. I can use my Braille keyboard to type, and use this to send emails or to create documents that I can attach to emails. But if I need to go to a nearby shop to buy something, or if I have to use public transport for some urgent reason, I am close to helpless.

Most people do not seem to be aware of the problems of Deaf and Deafblind persons. When I do not respond to verbal queries, because I do not know that somebody is trying to speak to me, this causes confusion for others. And if I try to communicate by grasping somebody else’s hand, so that I can sign on the palm, people get frightened. This has always been a problem, but it has got much worse, thanks to the fear surrounding the contagion caused by Covid-19.

I can still use my phone, by typing words on the screen and showing them to the other person, or by having the phone speak it out, but this is slow, and the other person needs to be very patient and willing to take the time to understand what I need to say. The fact that apps that do this for me are not widely being used, means that people are not accustomed to accepting that these electronic devices can be used by non-verbal persons like me for communication.

This is especially difficult when I am trying to get some urgent needs attended, such as if I have some health issue and need a doctor’s advice. On arrival at the clinic, often people, seeing that I am blind, try to grab me to help, while speaking to me. But I am very sensitive to touch, and being held by more than one person is very confusing for me. For them, the fact that I am not responding to their questions, is also confusing, as they do not understand that I cannot hear or speak, and that if they are holding my arms, then I cannot use my fingers to spell out my needs on their palms.

I have had to face many such problems with being treated as an independent person. For instance, when my wife needed to see a doctor, it was difficult for the doctor to understand that I could describe her needs and answer his queries. It is the same when I take my little daughter to the clinic. It becomes necessary to take another adult along, which is neither easy to organize at short notice, nor is it respectful of my knowledge of my own family and our needs, and my ability to communicate this.

The government has committed (by law) to provide assistance to persons with disabilities, but there is a long way to go. Once, I was given a certificate of orthopedic problems, although that is not my situation at all. There is no certification of Deafblindness, and this is a more serious problem, as the assistance for either Deafness or Blindness is not suited for me.

I have founded the Society for the Empowerment of the Deafblind to try and change this situation. We advocate for the needs of Deafblind persons, and we have allied with other NGOs to provide training and employment opportunities for persons with Deafblindness. We hope that the time will come when Indians are more sensitive to the needs of others and devise technologies and solutions that enable Deafblind persons to work independently in Indian society, and that such solutions are easily understood and accepted by all Indians.

The Story of Shipra and Saurav

The Story of Shipra and Saurav

Posted on by AqilChinoy

Saurav Gosh is now 33 years old and works at an NGO called Ishwar in Delhi, where he is part of a team that educates young children from poor socio-economic and educational backgrounds. Saurav is deafblind and grew up at a time when there was only one school in the country that specialized in the education of people who are deafblind.

Shipra Gosh, his mother, speaks of her journey, searching for services for her son, with the single minded goal to make him independent. She speaks of the choices she faced, ensuring Saurav's education, while balancing the needs of her family. Shipra's advocacy resulted in starting the second school in the country for children who are deafblind at NAB Delhi. Shipra educated herself and constantly worked to support her son's progress, reached out to other families and children and over time became a qualified special educator herself.

Shipra concludes her story describing with pride and happiness, the capable, friendly, young adult Saurav has grown into,  independent, social and loving. Today, he lives a balanced life, with work and leisure, socialization and responsibilities to others.

Zamir's unfortunate experience on a booked Indigo flight

Zamir’s unfortunate experience on a booked Indigo flight

Posted on by AqilChinoy

From: IndiGo Customer Relations [mailto:customer.relations@GOINDIGO.IN]
Sent: Monday, March 26, 2018 10:54 AM
To: zamirdhale@gmail.com
Subject: RE: Share my feedback and few suggestions CRM:03330900

Dear Mr. Dhale,

At an outset, we sincerely regret for the inconvenience caused to you.

Thank you for writing to us.

With reference to your mail, we have forwarded your matter to our concerned department to reply with details.

May we request you to kindly bear in interim; we will revert to you shortly.

We sincerely appreciate your patience this regard.

Best Regards,

Mansi Negi
Customer Relations
InterGlobe Aviation Limited (“IndiGo”)
Level 5 Tower D Global Business Park
M G Road Gurgaon Haryana 122002 India
Website – www.goindigo.in
Email – customer.relations@goindigo.in​

From: Zamir Dhale [mailto:zamirdhale@gmail.com]
Sent: Thursday, March 22, 2018 12:29 AM
To: ‘customer.relations@goindigo.com‘
Cc: ‘rampratap.tiwari@goindigo.com‘
Subject: Share my feedback and few suggestions

Dear Indigo Customer Carer,

Greetings from Society For  empowerment Of The DeafBlind!

SEDB is a registered NGO is a very first organization started by me in India, which aims to empower Deaf and Deafblind children and adults with proper educational, training, Assistive Technologies and employment opportunities. We need people to help and support SEDB in Funds raising. Please encourage us.

I am writing this mail to you to share my feedback and few suggestions.

It was a very great and nice experience travelling by Indigo flight. I am very grateful for hospitality provided by Indigo when I was de-boarded back from the aircraft without any reason (crew did not allowed me to travel alone), I tried to request and convince them but they didn’t listen to me.

I was appalled by this incident. Well this is not the first time I was travelling by Indigo. I have had several experiences traveling alone by Indigo but I had not faced this kind of humiliation in the past. It was very unfortunate that this happened it with me.

I agree that there was a communication issue with your team and myself but it is the responsibility of the Airlines to train their staff on communicating with Deafblind people, Hearing Impaired and with those who have sever communication issues. I am sure you have heard about Helen Keller and Stephen Hawkins, both of them had severe communication but the world was not end for them as well.  Hawkins was one of the person who discovered the big bang theory and we all know about his intelligence and his ability to think beyond the box. I hope you would agree with me here. Similarly, like them I too have communication issues being a person with Deafblindness. However, I am able to communicate with the world through tactile sign language and other modes of communication that is Refreshable Braille Display.

My ticket was booked by Office, and that’s why I was travelling to Chennai on 15th March 2018 alone, to attend the meeting.

I think that this is the right time for us to discuss on how to build the capacity of Airlines staff for handling persons with Deafblindness on ground and on board.  If you agree then we can have a sensitisation training on deafblindness and teach them communication of persons with deafblindness and some basic sign Language. It will help them understand the needs of a passenger with Deafblindness travelling independently.

Deafblind people are a part of society and if provided appropriate education He/she can do anything as you can do. There isn’t anything to worry about them but rather motivate and build their confidence so that they can manage their travel independently with reasonable accommodation. Do not think about their disability think about their abilities and achievements.

Deafblind passenger can walk with escort or without an escort only thing is that we would require acceptance from the society.

Hope you agree.

Thanks and regards,

Zamir Dhale
Society For Empowerment Of the Deafblind (SEDB)