NAD – The Wire

Activists Hope Standardisation of Indian Sign Language Will Pave Way for Inclusivity

Activists want steps to be taken to train the deaf to become teachers and hope that ISL will be made an official language.

New Delhi: Having experienced the social stigma of using sign language, Anuj Jain, executive director of National Association of the Deaf, believes that standardisation of Indian Sign Language (ISL) is very important both for the purpose of education and for enabling the deaf to secure jobs in the private and government sectors.

On July 30, when the National Education Policy (NEP) declared that ISL would be standardised, it gave many like Jain a glimmer of hope. “ISL will be standardised across the country and National and State curriculum materials developed, for use by students with hearing impairment. Local sign languages will be respected and taught as well, where possible and relevant,” the policy says.

‘Only a minuscule percentage formally trained in ISL’

The World Health Organisation estimates that there are around 6.3 million people in India who have complete or partial hearing disability. And out of these, less than 2% are believed to have been formally trained in the use of ISL, which uses hand gestures and mouth movement for communication. It is expected that acquiring higher knowledge and skills through ISL will enable persons with hearing disabilities to secure more jobs, apart from the ones reserved in the government sector.

Talking to The Wire with the help of an interpreter, Jain said the move offers hope for the overall growth of children with hearing disabilities. He said in the absence of use of sign language by teachers, nearly 98% of children with hearing disabilities remain illiterate or drop out of school.

Anuj Jain. Photo: nadindia.org

On the need for standardisation of ISL, Jain said, “In India, people speak different languages as their mother tongue. So ISL provides uniformity.” He said Section 24 of the Rights of Persons with Disabilities Act, 2016 deals with education says those who are teaching children with hearing disabilities must know sign language. “But for three years, little has happened. Last year, we came together and made a lot of suggestions in this regard,” Jain says.

Jain says standardisation will ensure adherence to teaching methodology, adding, “The main problem is that teachers do not use sign language and they only promote oral systems. Also, hearing parents are unable to gauge the development of their deaf child properly. So there is no communication happening at any end.”

Social stigma and use of sign language

Jain also noted that sometimes, the parents are ‘ashamed’ of their deaf children and this attitude is a big problem. “For this reason, they often discourage their children from using sign language. In my case, my three sisters and I were deaf, while one of our siblings is able to hear. Our parents used to discourage us from signing, especially before guests and we used to wonder, ‘Why can’t we communicate properly?’.”

He said when his daughter was born, his parents were concerned if she would have hearing disabilities. “It was when she grew up and began both talking and using sign language that they learnt the importance of this form of communication.”

Also Read: Comprehending the Complexities of Sign Language

Jain said even in sign language there are variations. “The important thing is that we promote ISL. It would make the education of the Deaf community easier.”

While ordinarily, the vocabulary in sign language in India covers around 3,000-4,000 words, he said around 10,000 words are being covered under the ISL right now. The work on developing the ISL is being done by the Indian Sign Language Research and Training Centre (ISLRTC), which was set up under the Union Ministry of Social Justice and Empowerment in 2011. It released the first ISL dictionary of 3,000 words in 2018.

“They started with 3,000 words and added another 3,000 words later. So 6,000 words are ready right now. They are working on 4,000 more words, but due to COVID-19 it has got delayed,” Jain said, adding that in future the number of words would increase with more technical ones being added to the list.

‘Allow the deaf too to get BEd certification’

The government, Jain said, is also developing curriculum for Class X and Class XI in sign language through the National Institute of Open Schooling. “It would provide the whole course in different subjects like Maths and Science. It is taking time but the process has started.

He said since the deaf can prove to be great trainers, the National Association of the Deaf has urged the Rehabilitation Council of India, which provides various courses to persons with disabilities, to allow the deaf to join the Bachelor of Education course. This will enable members of the community to get involved in teaching other persons with the disability. “Right now, only persons with hearing are able to do it,” he pointed out.

A workshop for persons with hearing disabilities. Photo: nadindia.org

‘Standardisation will absorb variations in ISL’

Rati Misra, who is an advisor at the National Centre for Promotion of Employment for Disabled People (NCPEDP), said standardisation will help in the absorption of variations in the ISL. She said in India, people have largely been following either the British or the American Sign Language – depending on who set up the schools in India – along with the influence of their own local language. “So there is a need to standardise the language as there are a lot of variations,” she said.

“Sometimes for indicating one thing, you find people using different signs. For a girl, in north India, the sign is to point at the nose ring. Whereas in the south, the person points at the bindi or the centre of the forehead. On the other hand, there are certain words for which the sign is the same – as for couple and pair,” Misra said.

These variations will lead to problems if ISL is used in higher education and other advanced needs without standardisation, she said.

It is crucial for teachers to receive proper training, she said. “Even when you talk of academics, the reason why persons with hearing disabilities drop out much earlier, usually by Class VIII, is that the teachers do not know the sign language to teach the children beyond that level. This exercise would remove such shortcomings.”

Also Read: ‘Inclusivity Through Music’: India’s First Sign Language Rap Video

‘Make ISL official language’

Disability rights activist Satendra Singh said it is important to standardise ISL to enable people from one part of the country to understand those from another part through sign language. “There are regional variations rights now which make this difficult. I remember we had a conference in Delhi, where there were people from Hyderabad and from north India. Those from Hyderabad faced a lot of problem in understanding what was being conveyed through sign language. That needs to be addressed.”

He demanded that ISL should be considered an official language. “This has been a long-standing demand of the disabled community because even at important national events or meets, ISL is not used right now and this prohibits the deaf from understanding what is being said.”

This can have serious consequences, Singh said, pointing out that a recent global survey showed that in a large number of countries, including India, the government’s press briefings on COVID-19 were not inclusive for deaf people. “Sign language was not used,” he said.

‘Regional consultation needed on standardisation’

During the exercise to standardise ISL, Singh said regional consultation is necessary. “This is important to ensure that only Delhi-based or north Indian organisations do not determine how it is standardised. You need to have stakeholders from the south, west, east and northeast India too during such deliberations.”

Also, he said, the needs of deaf-blind should be addressed. “They depend on tactile sign language and communicate by touching the hand. They prefer American Sign Language. It is easier for them and so their genuine concerns should be taken into account.”

Note: The word ‘flaw’ was removed from Rati Misra’s description of the ISL as that was not the word she had used.

Do We Finally Have an Anti-Ageing Drug? No, It’s Not That Simple

At the outset, the study had a lot going for it: Harvard scientists, paper published in a fancy journal, etc. But most coverage ignored two key issues with it.

At the outset, the study had a lot going for it: Harvard scientists, paper published in a fancy journal, etc. But most coverage has ignored two key issues.

Credit: skeeze/pixabay

As we age, our cells start to lose their ability to repair mistakes in their DNA. That’s why older people’s DNA is more prone to damage, making them more prone to diseases like cancer. Recently, scientists at Harvard Medical School showed that it is possible to stop this aspect of ageing. When the elderly subjects of their experiment were fed with water containing a specific molecule, their cells became more resistant to DNA damage – just like when they were younger. This study was published in one of the more reputed scientific journals in the world, Science, on March 24, 2017. So have we finally found our anti-ageing drug?

It’s not that simple.

L. Aravind, an evolutionary biologist at the US National Centre for Biotechnology Information, is one of the authors of the paper. In an email interview, he confirmed that this discovery, at its core, is a biochemical one. It deals with three proteins found in most of our cells: NAD, DBC1 and PARP1. Of these, NAD is a central molecule that is most familiar to us. It is a critical ingredient in hundreds of reactions that keep the cell running. Without NAD, a cell cannot survive.

The PARP1 protein is important because it raises an alarm when the DNA in a cell has been damaged. The cell’s machinery is then triggered to correct this DNA. And DBC1 is a protein that is abundant in cells but the details of its role are a mystery. The researchers now discovered that DBC1 likes to attach itself to PARP1. But this is a problem because a PARP1 stuck to a DBC1 can no longer act as an alarm. That’s bad news for the cell because if its DNA somehow gets damaged, it is then less likely to repair itself.

So is this the end for the cell? No. The team also discovered that NAD can come to the rescue. It turns out that DBC1 also likes to attach to NAD. And DBC1 cannot go stick to a PARP1 anymore if it is already stuck to a NAD. This leaves the PARP1 free to conduct DNA damage correction. In fact, NAD is so dynamic that it even has the power to free a PARP1 from the clutches of a DBC1.

This all implies that the more NAD our cells contain, the more hardy – and capable of correcting DNA damage – our cells are. Older cells have less NAD and so are less hardy than younger cells. This is why these scientists propose that replenishing our cells with NAD “can be used as a means of reducing the side effects of chemotherapy, protecting against radiation exposure, and slowing the natural decline in DNA repair capacity during ageing.”

As an evolutionary biologist, Aravind explored a more fundamental question that this discovery threw up: “Why should such a paradoxical mechanism exist in the first place?”

“PARP1s are major NAD consumers – in a typical run, they can consume several hundred NAD molecules,” he said in an email, pointing out that since NAD is such a central molecule in running the cell, we don’t want PARP1 to run away with all of it unless there is a real danger to the cell. This is why we need DBC1. “It is critical to have a sensor that allows the PARPs to be unleashed only if the concentrations of NAD are high enough to allow this luxury. DBC1 is that sensor. Given that NAD levels decrease with age, this luxury diminishes and thereby [affects] DNA repair.” He summed up this: “Supplementation by NAD precursors might offset some of the issues associated with ageing.”

At the outset, the study has a lot going for it: Harvard scientists, interest from NASA (the research won a NASA competition for its lifesaving potential during space exploration) and a paper in Science. And it did not take long for the media to latch on to the sensational implications of this research. Soon enough, there came headlines like ‘Is this pink pill the elixir of youth?’, ‘Anti-cancer ‘youth pill’ available in three years’, ‘Discovery could reverse ageing and help us live on Mars’, ‘New wonder pill to reverse effects of ageing’ and even ‘Revolutionary anti-ageing drug makes you look younger and live longer’. All of these statements have some basis in truth but none have laid enough emphasis on two key points.

Point 1: The study was done in mice

To get started on testing their hypothesis that NAD could bolster DNA repair, the scientists used mice. It worked. Old mice, even when they were subjected to radiation (which mutates DNA), had their DNA-repair powers boosted to the levels of young mice when fed with an NAD precursor. But something that works in mice need not work in humans. With this in mind, David Sinclair, the lead author of this paper, has announced in a press release that human trials will begin in a hospital in six months and that if all goes well, we could have an NAD-based drug hit the markets in three to five years.

This is hugely optimistic because, as popular as mice are as model organisms for such studies, they come with serious caveats. Radhika Nair, a cancer biologist at the Rajiv Gandhi Centre for Biotechnology, Thiruvananthapuram, told The Wire, “Unfortunately, translating mouse models into actual human trials is a long, expensive process and fraught with failure. This can be attributed to a number reasons such as the differences in mouse and human physiology, the set-up of clinical trials, etc.” She was not involved with the study.

The problem of translating basic research into clinical applications is so severe that a Nature feature in 2008 termed this gap ‘the valley of death’. Aravind, who worked with Sinclair and team on this study, agrees that this bit of research will also have to cross several hurdles before being useful to human beings. “What works well in smaller animals like mice might not scale in large ones like humans. Importantly, the difference in terms of lifespan means the time of initiating treatment in terms of human age needs much more study.”

Point 2: The lead scientist has a commercial interest in this research

David A. Sinclair is a biologist at the Harvard Medical School and a prominent figure in the study of ageing. His lab has come up with significant discoveries in the area before, many of which have also been published in reputed journals and widely publicised. However, all of the papers are careful to disclose this fact “D.A.S. is an unpaid consultant, board member, inventor on patent applications, and holds equity in companies developing NAD precursor–based medicines”.

There is nothing particularly fishy about this. It is quite common for scientists to also be entrepreneurs; some even believe that commercialisation is necessary for promising molecules to be translated quickly into clinically useful products. Nevertheless, it’s important to realise that when a scientist behind a discovery has a company that is looking to cash in on it, it means that he or she has a lot to gain by any hype resulting from the discovery.

It is thus common to see many of these scientist-entrepreneurs go out of their way to make their research accessible to their future customers: the layperson. Sinclair, for example, is a popular face, having given a TEDx Talk, made animations and given plenty of interviews. The unfortunate side-effect of this is that many journalists get lazy when all this information is made readily available for them. There is a temptation to take the information fed to them at face value and that’s how we get sensational reports like the headlines mentioned earlier. Sinclair could not be reached for comments on the media’s coverage of his research.

This is still an important study

None of this is to say that this study is not a significant one. Indeed, it does seem to be, and there are also other scientists involved in the research like L. Aravind who have no commercial interests in it. “I am personally for all research relating to any aspect of human health not being used as an instrument of monetisation,” he clarified. “As an employee of the US government, at least the part my group plays in such research is made entirely publicly available for anyone to use and I don’t gain monetarily from such findings.”

Aravind pointed out that claims of miracle cures have cropped up throughout history, each time disguised as a breakthrough. “Hence, skepticism in this regard is entirely warranted, given that though we understand much more now than 1,000 years ago, we still don’t know a whole lot,” he said. “It is important that the media communicate the logic behind the biochemistry and what these studies are contributing to the understanding of workings of our bodies than trying to sell the hope of the latest elixir.”