International Day of Persons with Disabilities is observed every year on December 3, with the aim to promote their rights and well-being and to spread awareness of the concerns of such persons. The observance was proclaimed by the United Nations General Assembly in 1992.
The theme for IDPD this year is, ‘Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world.’
Today, as per statistics by the United Nations, the world population is over 7 billion people and more than one billion people, or approximately 15 per cent of the world’s population, live with some form of disability; 80 percent live in developing countries.
Dr. Suni Mathew connects with the Free Press Journal to discuss and throw light on the concerns of the community along with inputs towards their well being.
Q. What are the AYJNISHD’s plans for this year's IDPD?
We have scheduled a series of sessions aimed at promoting awareness and empowering the differently-abled. Some seminars syncing with the IDPD theme for this year with doctors and experts in the field, poster presentation and other competitions for all disabled groups. We also have planned for a parent empowerment programme to give them basics to deal with a divyangjan child.
Q. According to you, do persons with disabilities undergo stigma when facing the world?
Be it India or abroad, very often the awareness in society about the divyangjan and the ability to deal with them is sensed as a prevailing lacuna.
For the case of persons with hearing or speech-related disability, the general appearance doesn’t cast a difference or hint at their special needs. Only when people approach them for communication do they realize the case. This group happened to be a minority chunk within the 21 categories of disabilities, and seem to get low attention unlike the visually impaired and the physically handicapped who get the due attention much earlier.
Over the period of time, the government, rehabilitation and special care centres, educational institutes and various NGOs came forward to fill in the gaps and create a layer of understanding, bringing awareness in the public about the rights and issues of divyangjan. With the emerging inclusion policies laid by the government, seeking betterment. They got hope through the government proposals as well as managed to get the deserved status in society.
Stigma still prevails, but then what is appreciable is, these kids have learnt to face the stigma and concerns - they know to live with it, and I hope that they will win through it gradually.
Q. How did COVID-19 affect the differently-abled people?
COVID-19 has been a tricky and troublesome phase for nearly everyone and anyone in this world. When it comes to these specially-abled kids, the theme is apt as the life post-COVID is aimed to be one with more aware and adaptable living.
In most institutes, also AYJNISHD, we trained the kids on a one-on-one basis. Later, everything went online, and in our case not all kids being from a well equipped socio-economic background, things were difficult but we adjusted.
For us, just like how to hand sanitize was given focus, we tried our kids to maintain proper hygiene with their devices such as, mainly, hearing aids. Amicable parents were trained who in turn helped their kids to learn and imbibe the teachings.
Q. What are the challenges one faces towards those who have hearing or speech-related disabilities?
When an individual is not sure how to talk to people with hearing or speech-related disabilities, there is discomfort created. Not everyone is aware of sign language to strike communication in the right way. The key challenge is to make them accept their scenario of disability.
Parent’s denial is a major struggle we face. Most parents feel it difficult to digest their child to be one needing special care. Our work has a triangle like flow - child being the integral part followed by parents and professionals, even if one falls short it affects the other elements.
In the pandemic, the case wherein one of past cochlear implant kids had to be quarantined, staff and people around were unaware to communicate. Several calls were made by the quarantine centre to our institute for interpretation purposes, later the trained parents took the lead to facilitate conversions. We were happy to see that our institute has empowered parents to this level.
Q. ‘Politically correct words could help them boost up self morale’ - do you agree with this?
Yes, surely. Words have the magic and great power to trigger fury or gently tickle. A mere change in the terminologies will surely help them to look at the positive aspect about self, and feel good rather than holding concerns with the negative.
During PM Modi’s 'Mann ki Baat' programme in 2015, he had suggested that the term 'divyang' meaning 'divine body' be used instead of 'viklang' or 'disabled' for persons with disabilities. This category as ‘divyangjan’ is itself a hint towards acceptability. Divyangjan feels respected when such words are used to address.
Also, something to be proud of is that our rehabilitation centres have stepped from the charity base to the Human Rights model. So, with the Human Rights model seen evident in the country we no longer consider them with the tag ‘disabled’ but begin looking at the positive sides. Differently-abled or divyangjan is now used. Along with labels, their participation towards the globe matters.
Everyone holds talents, skills and abilities - so we have now moved to a sphere that recognises them for the abilities that they possess rather than pulling them down over disabilities. When people refrain from labelling one another on their weakness and try to encourage through the abilities they have - it is a great sign of change in the mindset of the public which will definitely take the country to greater heights.
Q. Is desired education a field of concern for disabled persons?
Most educational institutes provide the scope for the differently-abled only till std. 7th or so, a very handful of special schools and colleges hold opportunities for them to carry out post-primary level curriculum. Higher education is a troublesome phase. Many have to drop their education due to this, I believe the reasons are language issues. Though a drop, we encourage them to not stop. Availing the PWD quota, some institutes facilitate their career. So does our institute provide learning and certifications.
Yes, several have to compromise on education due accessibility issues, but things are changing towards the good.
Q. If someone looks for a career as a special child trainer or counsellor, be it in your institute, what quality do you expect from the applicant?
To be frank on it - lots jump at the opportunity for money, but we seek the human touch. A candidate who has the abilities of love and care towards handling the specially-abled kids will be our choice, as that’s the key need. Also, adaptability and acceptability is important skill set. Later, we might suggest that they get trained with necessary courses for understanding and dealing better with the concerned segment.
Q. India witnessed a buzz when it came to the Olympics, be it who won or lost. What is your take on paralympics?
I congratulate the ones who have represented India in the international arena. I appreciate that several categories of the differently abled have got their chance to make it to the Olympics through the banner of paralympics. Not sure on what the rules and norms hold, but we still don’t have the inclusion of the hearing impared to participate in the games. Yet, I hope the future gets them all the rights they deserve in an inclusive society.
Q. How far has the government helped to smooth and soothe the scenario of the specially-abled?
A lot comes from the government and that too from the grassroots level. There are nine national institutes, one of which being Ali Yavar Jung National Institute of Speech and Hearing Disabilities (AYJNISHD), set up in the country and 21 composite regional centres that work for welfare and upliftment of the Persons with Disabilities (PwDs)
The Government of India’s Ministry of Social Justice and Empowerment which has the Department of Empowerment of Persons with Disabilities has, a few months ago, approved setting up of 21 Composite Regional Centres (CRCs) as extended arms of National Institutes. Not just that, the Ministry of Education is also trying to work on promoting inclusive education for persons with disabilities.
The basic objective of CRCs is to provide rehabilitation services to all categories of Persons with Disabilities (PwDs), train rehabilitation professionals, workers and functionaries, undertake programmes of education and skill development for PwDs and create awareness among parents and the community regarding needs and rights of PwDs.
Q. What is that one achievement towards the community close to your heart?
Our focus is to polish and empower the strength in them so that they shine in whatever walk of life they wish to choose. This will help them to also lead a life normal to any other human in the society. Inclusion in society by respecting their disabilities and empowering their strength is the prime motto in our field.
The shift from earlier charity based development to recognition by the government is noteworthy progress. The Department of Empowerment of Persons with Disabilities has been the key player to bring awareness to the public. I thank the media too, for playing a huge role towards creating awareness and have worked significantly on media accessibility for the divyanjans.
Q. What are the FAQs that you have encountered through your days of career in the field?
Strange and silly questions that can make one feel awkward have also been asked through the past and also till date. Such as - Can a deaf marry? Can a speech-disabled get into social gatherings? Can they do this or that which any other person would do? These questions put forth to us kindles the fire to empower.
Some reasonable and out of concern based questions also come. Parents often ask for advice and guidance about the child’s future who is either hearing or speech-related disabled. In such cases, the institute helps them to make an informed choice for their ward. Some FAQs are also listed on our website and the team is always in to connect and clarify queries.
Q. For the parents who have hearing or speech-related disabled kids, what tips would you like to give?
Don’t worry, this is my first tip to the parents. Within systematic training and care given to kids in proper means at right stages, the kid can flourish just like anyone else.
‘Catch them young!' The key mantra is to begin early for long term. Facilitate early detection within the period of two years, the best would be to spot signs such as missing cry at birth, uttering the first word within a few months of development, etc.
Most importantly, not to indulge into quacks for recovery of disabilities. We have audiologists, doctors and counsellors across the country who can provide help to ensure the kid’s well-being.
Get in touch with the recognised institutes and rehabs to guide towards making an informed choice on cochlear implant, taking the manual way (sign language training) or other provisions.
Q. What is your message for FPJ readers?
I suggest a few things that the commoners must keep in mind to make this society conducive for the PWDs: Having a favorable attitude towards the differently-abled and accepting them with their ‘abilities’. Respecting their rights along with our support so that they have a mainstream life. Encourage, uphold and empower them so that they lead a quality life with inclusion in society.
Another thing that tops my mind is to educate prospective mothers, young girls and boys who would enter the marriage circle to understand the play of genetics resulting in the disabilities.
Dr. Suni Mathew is a University rank holder in field of Physics who pursued her passion by doing M.A. in Education Hearing Impairment followed by a PhD in the education field to serve the children at her institute better. She spent her childhood next to one of the initial schools for deaf people - CSI in Valakom, Kerala. For her, since childhood, the disabled community was close to heart with her dream to help them empower and emerge as independent individuals.