SEDB India - Report for 2021-22

Society For The Empowerment Of The Deaf-Blind – Report for 2021-22

Throughout the period under report, work from home has continued, due to the restrictions created by the Covid-19 pandemic. This poses huge challenges for the deafblind community, and particularly for the operations of the Society, as the severe lack of strong digital accessibility tools imposes limitations on independent participation.

We know that not enough is being done about making the Rights of Persons With Disabilities ACT (RPWDA) 2016 bring about useful change for the deaf-blind in India, apart from others.

The extent to which the law technically addresses some of the issues faced by persons with disabilities, is not the same as actually bringing about real change.

Deaf-blindness is mentioned under the category of Multiple Disabilities, and not specified as a separate disability. Why does GOI, for instance, not employ the deaf-blind in government jobs? And why is there no reservation for deaf-blind? Only education is reserved, to 1%, but that’s not enough. 

RPWD Act 2016 itself has not been implemented properly in India. Apart from some guarantees for productive paid work, there needs to be very positive action from both the state and its people to help put a level playing field in place for all persons with disabilities, and definitely for the deaf-blind. We need to be able to access both services and opportunities as smoothly as any other citizen of India.

We have been trying to cope with the problems caused by the absence of such facilities, as we focus on running a self-help society.

• April 2021: The SEDB team, in collaboration with Enable India and Chetana Trust, met online in order to discuss, finalise, and approve organising  the 2nd National Conference of The Deafblind (NCDB) 2022. We agreed that Enable India would be the funder and host, while Chetana Trust participates as knowledge partner. The scheduled dates are to be from 4th to 6th February 2022, and the meeting will take place in Bangalore. 

We discussed the existing logo, and decided it needed revision. We ideated a special logo for NCDB in 2022 during this discussion. Mr. Sunil Abbas, who is a deafblind leader, and also a technology activist from Chennai, actively discussed and experimented with artists of Chetana Trust to come up with a logo for NCDB. The deafblind team voted to finalise an attractive colour scheme. This was possible with the assistance of Mr. Amaresh Gopalkrishna, SEDB’s consultant and interpreter, who helped ensure we could come to a consensus on the logo. The actual drawing and finishing was handled by Enable India’s art and communication team. 

Mr. Amaresh suggested that we should prepare an announcement to be posted and circulated on 3 successive dates in order to inform the community about the conference, and invite deafblind participants from across India to come for the conference. 

• May 2021: Amaresh prepared a video on Society President Zamir to use as the first announcement, addressing the deafblind community, together with associated interpreters and caregivers, and disseminating it widely, in order to invite them to come for the conference.

• June 2021: The Society has been getting feedback from time to time regarding improvements in functioning. To try and resolve the issues, we had a physical meeting in Nashik, inviting ex-members, where Eliyas Shaikh (Vice President) helped to keep the proceedings focused, and also logged the minutes, for our reference. Several members have not been able to work and contribute time regularly, due to personal problems, and offered their resignation letters to SEDB. 

We also decided that we needed to ensure that SEDB’s focus on being an organization for the deaf-blind will help us put better plans in place for the future, minimising the presence of deaf members. 

We arranged for the artistic works of deafblind women, making tactile drawing squares from yarn, to be couriered to Chetana Trust in Chennai in time for celebrating Helen Keller's birthday anniversary, which is on 27th June. The public display of the yarn squares, at the Museum of Possibilities in Chennai, was very wonderful, and greatly appreciated.

Zamir, Sunil, Pradip and Saurav, who are all deafblind, described their lives with short stories, and this was presented at an online video conference, together with parents of deafblind adults like Shipraji and Sudhaji, and the founder director of the Chetana Trust, Dr. Namita Jacob, where all were invited to share. Chetana Trust also put together a “deafblind week awareness activities” video recording, and shared it on social media platforms. 

• July 2021: Pradip and Sunil helped to support deafblind participants to register for NCDB 2022, using an online Google form created by Chetana Trust. 

• August 2021: We continue working from home to attend some virtual seminars with the help of a tactile signing interpreter, to discuss issues of the deafblind community with a range of stakeholders. Also, a number of members were encouraged to continue their independent efforts in learning and executing productive work, from carpentry to cloth articles and decorative candles. The work is shared regularly on video, photography and text descriptions, as well as with the use of sign language,  through different social media platforms. 

• September 2021: We celebrated World Deaf Day and International Sign Language day, which was also online. We continue to learn a lot of methods to work around the barriers of accessibility in such situations. 

• October 2021: The deafblind team celebrated Happy Cane Day on 15th October. A few deafblind people joined us online to raise our voice about our rights, and the need for using red-white cane as a means for deafblind people to move around independently. The next week we recognised the 6th birthday anniversary of the founding of SEDB, and spread awareness by circulating it widely on social media.

• November 2021: A new variant of Covid-19, called Omicron, was spreading fast around the world, and further lockdowns were being imposed. Enable India and SEDB decided together that it was necessary to postpone the NCDB conference by a year, to November 2022. 

The Annual General Meeting (AGM) was organised with the active participation of our members, both women and men. We decided that, despite the challenges, only deaf-blind members should be SEDB Board and Office bearers. The process of the AGM was conducted over 3 separate sessions, on consecutive Sundays. Amaresh assisted the meeting, and submitted the minutes of the meeting (MOM), together with the reported changes, to the office of the Charity Commissioner in Nashik. 

The statutory working of the Society has been thrown into confusion as a major result of the pandemic, and the difficulty faced by many members, especially the office-bearers, to function online for record-keeping and submission of the required documentation, much of which is not easily accessible for deaf-blind persons. Major functions affected have included statutory filing of tax returns, report statements, and it became very difficult to operate the bank account, as online usage by the authorised signatories became completely impossible. To help deal with such problems, the organisation has been revamped, with Sunil Abbas, who is also deafblind, as the General Secretary, and Bhausaheb Jadav as our new Treasurer.

• December 2021: Zamir and Sunil participated virtually to talk about their life stories in an online session hosted by Hear-a-Million, in collaboration with Enable India, to mark World Disability Day, on 5th December 2021. It was a very fruitful engagement, and many deaf and deafblind people were excited to work together, with opportunities to become stronger collaborators and more independent individuals.

• January 2022: SEDB is the only trust run by deafblind people in India, and we are grateful to Enable India for arranging and supporting training for deafblind adults. We continue to face funds shortage for conducting routine statutory business as required under the law. 

• February 2022: The Human Rights Law Network (HRLN) and Centre for Constitutional Rights India (CCRI), a division of Socio-Legal Information Centre (SLIC) organised a capacity building workshop, from 10th to 13th February, 2022, at YMCA International House, Mumbai. State Level Association for The Deaf (SLAD) helped, by networking and mobilising participants who are deaf. The focus of the meeting was to learn about the Rights of Persons With Disabilities ACT (RPWDA) 2016. 

SEDB was the only formal Indian organisation, representing the deafblind, focused on our situation. Many of the deaf and deaf-blind participants raised doubts about this law. Questions were answered, concerning the extent to which the law technically addresses some of the issues that are actually faced by persons with disabilities. Women who are deafblind raised concerns, about discrimination, and also about crimes aimed at women, such as rapes and sexual harassment. Other women, who are deaf, also spoke about the legal rights of persons with disabilities, and the reality that most people face. 

The RPWD Act 2016, while it is an improvement, is itself not being implemented properly in India. We studied and understood many of the issues this creates for us. It was a good learning experience for many of us. 

• March 2022: In the last month of the financial year, the members and office-bearers have been focused on ensuring the earnings and expenditures and all documented correctly, in order to prepare the accounts. Bhausaheb arranged for and worked with the new accountant, Arvind Khari, to complete it.