Breast cancer is a leading cause of death among women in India, but a project training blind women to detect it in the early stages is filling a major gap in preventative medicine, and offering them meaningful work
Neha Suri’s fingers move slowly and with precision across the breast. Strips of Braille-marked tape divide the chest into four parts, each made up of 1cm boxes to guide her. Knowing the exact measurement of her fingers, she feels her way along the chest, subtly altering the pressure to scan the layers of skin for abnormalities. Furnishings are sparse in the government-run health centre but, with her gentle nature, Suri ensures the women lying before her are comfortable.
Breast examinations remain taboo in India. Cultural norms encourage modesty, and there’s also a fear of diagnosis and a stigma associated with cancer, so Suri talks to the women throughout the process, which usually takes between 30 and 40 minutes. Calmly and softly, she explains how she works as someone with a visual impairment. “The first challenge is getting the patient to trust that, as a blind person, I can do this job,” says Suri. “That’s the most difficult part.”
She was born with the chronic hereditary eye condition retinitis pigmentosa, which causes a gradual degeneration of the retina. Now aged 44, she can see small amounts of light and dark and can no longer read, or recognise faces.
According to the NAB India Center for Blind Women and Disability Studies, India is home to around 15 million blind and visually impaired women, of which only 5% are able to earn a living. After Suri’s husband died of bone cancer in 2016, her son encouraged her to visit the centre, which runs programmes to help women build confidence, develop essential life skills and find employment.
A year later, Suri became one of the first women in India to train as a Medical Tactile Examiner (MTE) in the detection of breast cancer, the most commonly diagnosed cancer among women worldwide. Despite the fact that 18% of new cases occur in those under the age of 50, mammograms are not routinely offered to this age group and breast palpation examinations – a core component of breast screening globally – are often carried out under significant time pressure, if at all.
“Breast cancer is not a killer as long as the tumour is only present in the breast tissue,” explains Dr Frank Hoffman, the German gynaecologist who came up with the idea of training blind and visually impaired women to carry out tactile examinations in 2006. “If you can find the tumour at the earliest possible stage, the patient will recover in 90% of cases.”
Research has shown that in the absence of visual information, blind people can develop heightened sensitivity in hearing, touch and other senses. “Visually impaired people have to train their other senses extensively,” Hoffman explains. “It’s part of daily life for blind people to orient themselves with their fingertips.”
MTE Neha Suri was born with a condition that causes retina damage
With this in mind, he founded Discovering Hands, a social enterprise training MTEs to identify breast abnormalities with their fingertips. By applying variable levels of pressure to the chest they are able to detect both cancerous and noncancerous tumours. The lightest touch can detect those on top of the skin, while medium pressure picks up those underneath, and the deepest pressure can find those further into the breast tissue. MTEs don’t diagnose patients, they document their findings and the characteristics of the abnormality – its size, shape, consistency and location – for the doctor to determine a diagnosis and treatment plan.
“Studies have shown that the sensitivity for detecting BI-RADS IV and V tumours was around 20% higher when MTEs were included in the examination,” explains Hoffman. “While doctors typically find tumours the size of 1-2 cm, MTEs have been known to detect those as small as 6mm and 8mm.”
He adds: “In around 40,000 tactile breast examinations, the MTEs would find 125 additional tumours [compared to the standard palpation examination]. This means many women can be diagnosed much earlier.”
It’s part of daily life for blind people to orient themselves with their fingertips
Over the last two decades, Discovering Hands has trained more than 80 MTEs in Europe, Colombia, Mexico and Nepal as well as in India, where breast cancer is the leading cause of cancer deaths among women. Over 60% of cases are diagnosed at a late stage, due partly to the fact that only 1.6% of women aged 30–69 in the country undergo breast screening.
“Breast screening is something many Indian women are not comfortable with,” explains Salini Khanna Sodhi, director of the NAB Center. “It is still spoken about in whispers. MTEs are convincing more women to get their breast screenings done.”
To date around 35 women have been trained as MTEs and now carry out the technique in hospitals in Gurgaon, Varanasi, Medanta and Bangalore. In Delhi, where Suri is based, they have screened more than 6,000 women through pop-up community health camps. They also raise awareness and provide valuable education around breast cancer, including how to carry out self-examinations. Feedback from those who have undergone tactile examinations is characterised by gratitude, describing the MTEs variously as “patient”, “supportive” and “kind”.
“The focus [of the MTEs] is unparalleled, and the tactile sense is something dependable,” continues Khanna Sodhi, who has seen the impact of the programme, on both the MTEs and those who benefit from the screenings. “No sighted person is able to do this. [It’s like] the blindness is not a curse any more, it’s a USP.”
Peer-reviewed research has found the findings of MTEs to be of similar accuracy rates to clinicians. A study published by Hoffman and colleagues in India found that MTEs had a “high sensitivity” for detecting malignant cancer, and could detect “almost any aberration … amenable to human touch”, missing – on average – just 1% of cases.
There are known instances of MTEs detecting malignant tumours and the women involved going on to successfully seek further medical treatment.
“These cases highlight the crucial role that MTEs play in early detection, which can significantly improve the chances of successful treatment and recovery,” says Sonal Prakesh, lead trainer at Discovering Hands India. “By catching these issues early, MTEs contribute to life-saving interventions, especially in communities where access to regular screenings and healthcare might be limited.”
No sighted person is able to do this. It’s like the blindness is not a curse any more, but a USP
For Suri, this is the most rewarding part of the role. “The biggest satisfaction is helping others and saving a life,” she says. “My father always wanted one of his daughters to go into the medical field. I have fulfilled that dream.”
Suri’s own life has changed dramatically since she joined the programme. Formerly a housewife and financially dependent on her family, she is now physically and financially independent, and provides for both her and her son through her work as an MTE, which pays a starting salary of Rs.17,000 (£154) per month.
“I used to feel like I was the only blind person in the world and that all I could do was sit at home and be a burden on the family,” she tells Positive News. “When I saw blind girls living independently, it encouraged me to continue training. My family keeps me motivated too, saying how much I have changed.”
Prakesh has also seen how empowering the programme can be for women, particularly in building their self-confidence. “Everyone’s story is totally different,” she says. “Some come from very poor socioeconomic backgrounds and now they are earning well and supporting their family. One candidate was actually studying nursing but lost her sight in an accident. Now she’s working as an MTE.”
A growing awareness of the available job opportunities for MTEs has led to an increase in women wanting to join the programme, Prakesh says. However, securing funding, which largely comes from private companies’ CSR budgets, can be a challenge. Each participant undergoes nine months of training requiring multiple specialist trainers, followed by a three–month internship. Once the training is complete, it can be difficult to persuade local health centres to employ them.
“Despite the research we’ve done, doctors are not always convinced,” says Khanna Sodhi. “Until now, breast examinations were an affair of a few minutes [the MTEs take significantly longer] … and you need a dedicated room, so finding employment in the hospitals has become a huge challenge because many have a lack of space.”
However, the NAB Center has plans to expand into other regions across India, particularly rural parts of the country. Here, many blind women and girls are still unable to attend school due to the stigma or ‘social fear’ around blindness and disability, she explains. More community screenings are also needed in areas where access to high quality medical care is particularly limited.
The biggest satisfaction is helping others and saving a life
“We would love to expand the programme,” Khanna Sodhi continues. “It’s not always easy to find funding in every part of the country, but I do hope.”
And there is hope despite the challenges: some state governments are interested in establishing franchises, while Hoffman notes the potential of MTEs in other fields of diagnostics such as lymphoma, mouth cancer and glaucoma – and the possibility of male MTEs in testicle and prostate cancer. The hope is that people across India will not only benefit from access to preventative healthcare, but also a route to meaningful work because of, not in spite of, their eyesight.
“I was always very negative about my disability,” adds Suri. “Now I see it as a positive thing.”
Photography by Smita Sharma
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