25 July,2026 10:52 AM IST | Mumbai | Vinod Kumar Menon
Nayan and Bela Shah with their 36-year-old son Devarth at their home in Girgaum. Pics/Sayyed Sameer Abedi
Every morning begins the same way in the tiny 185-square-foot home of Nayan and Bela Shah in RK building, Khetwadi-8th lane, Girgaum.
The day starts not with breakfast or a newspaper, but with lifting, feeding, bathing and cleaning their 36-year-old son, Devarth, who has never been able to live independently. Every meal has to be fed to him. Every bath has to be given by his parents. He cannot walk, dress himself or use the toilet without assistance. Even turning in bed often requires help.
For Nayan Shah, 64, a retired broker /agent (dealing in pearls), and his wife Bela, 62, a homemaker and takes up odd jobs to supplement the family's income, caregiving has been a full-time responsibility for nearly four decades.
Today, their greatest fear is not their son's disability. It is their own advancing age.
"We can somehow manage today. But what will happen to Devarth when we are no longer there?" asks Nayan, his voice breaking under the weight of a question that has no easy answer.
Nayan and Bela married on May 19, 1986. Three years later, on September 17, 1989, their only child was born after what appeared to be a normal delivery at Suchak Hospital in Malad (E).
Their joy lasted barely half a day.
Within 12 hours of birth, the newborn suffered seizures. Medical investigations, including CT and MRI scans, revealed a massive brain hemorrhage. He slipped into a coma and was shifted to Nanavati Hospital, where doctors fought to save his life, recalled Nayan.
He (Devarth) survived.
But the brain damage was irreversible.
The hemorrhage left him with severe neurological disability. His limbs became rigid because of muscle stiffness. He never learnt to walk. His speech remained impaired, making it difficult for strangers to understand him. As he grew older, epilepsy became another lifelong challenge, requiring continuous medication.
Years of physiotherapy enabled him to regain limited speech and some understanding of the world around him, but not independence.
"He understands what we say. He watches television. He communicates in his own way. But every single daily activity has to be done by us," says his father.
The Shahs tried everything.
They enrolled Devarth in a special school in Agripada and arranged private tuition, but it lasted for only few months, as he could not sit for long. Physiotherapy became a way of life. Countless consultations with neurologists, therapists and rehabilitation specialists followed.
Nothing changed the reality that Devarth would remain completely dependent on his parents.
Now weighing nearly 60 kilograms, even lifting or moving him has become physically exhausting for the ageing couple. They seek the help of their neighbours to lift him and place him in a wheelchair.
"He cannot eat on his own. He cannot bathe himself. He cannot clean himself after using the toilet. Every day, from morning till night, everything has to be done by us," says the father.
If caring for a severely disabled son was not difficult enough, the Shahs now find themselves trapped in another struggle - one against bureaucracy.
For years, they have tried unsuccessfully to obtain an Aadhaar card for Devarth.
"Because of his neurological condition, his fingers remain tightly clenched and rigid. His head constantly shakes, making it impossible to capture a stable iris scan. Every attempt at biometric enrolment has failed," said the father.
The family visited Aadhaar enrolment centres including post offices in and around their house, but all attempts failed. They even called the UIDAI's 1947 helpline. Officials even visited their home to record his biometrics.
Nothing worked.
"They tried everything. They simply said they could not capture his fingerprints or iris scan," says Nayan.
Without Aadhaar, another problem surfaced.
A Bank of Baroda account opened in Devarth's name when he was a minor has been frozen because mandatory Know Your Customer (KYC) formalities cannot be completed.
Without Aadhaar, the bank cannot update his records.
Without updated KYC, the account remains inaccessible.
"It is his own money, but we can no longer operate the account because he has attained adulthood. Moreover, his KYC is still pending, and Aadhaar is mandatory to complete the bank KYC process to reactivate his dormant account," says Nayan.
Ironically, Devarth possesses several official documents.
-He has a birth certificate issued by BMC âC' ward Public Health Department.
-He has a disability certificate issued by All India Institute of Physical Education and Rehabilitation, Mahalakshmi in the year 1999.
Yet none of these are enough to complete the biometric-based Aadhaar process.
The family says every office they approach points them back to Aadhaar, while Aadhaar authorities insist that biometrics are essential - creating a vicious cycle with no solution.
The Shahs concern is no longer about earning a livelihood or managing hospital visits. It is about ensuring that their son continues to exist in the eyes of the system after they are gone.
"Today we feed him, bathe him and look after every need. Tomorrow, who will do it?" asks the father with a moist voice, quietly.
The question hangs unanswered.
Devarth Shah's story is not merely about one family's struggle.
It exposes a critical gap in a system increasingly dependent on biometric identification. For people with severe neurological disabilities whose fingerprints cannot be captured or whose involuntary movements prevent iris scans, accessing identity documents, banking services and welfare benefits can become nearly impossible, says Jamshed Mistry, Counsel, Bombay High Court, who has argued several cases for persons with disabilities.
As India expands digital governance, disability rights advocates have repeatedly argued that alternative mechanisms must exist for individuals who are physically incapable of completing biometric authentication.
For the Shah family, however, the issue is painfully personal.
For 37 years, Nayan and Bela have fought doctors, disease and destiny to give their only son a life of dignity.
Today, they find themselves fighting something far less visible - but equally unforgiving.
A machine that cannot read his fingerprints.
And a system that cannot see beyond them.
Way out
"A Person with Disabilities can obtain an Aadhaar card under the exception category. The Government is duty-bound to issue the document after following the process and verification," said Advocate Mistry.
Procedure
Advocate Mistry referred to the procedure given in The Ministry of Social Justice and Empowerment, Government of India, to obtain an Aadhaar card for an individual without workable fingerprints or irises: request an Exception Enrolment at any Aadhaar centre. The operator will collect only a facial photograph and process the enrollment using standard UIDAI biometric exception guidelines.
Steps for Exception Enrolment:-
1. Visit a Centre- Take the individual to the nearest Aadhaar Enrolment Centre along with standard Proof of Identity (POI) and Proof of Address (PoA) documents.
2. Inform the operator- Clearly state that the individual requires enrollment under Biometric Exceptions (due to missing fingers, amputation, burns or blindness).
3. Capture Facial Photo- The operator will take a clear photograph of the individual's face.
4. Exception Logging - The software handles the missing biometrics by logging an exception code and capturing a photograph of the missing/deformed fingers or eyes if applicable.
5. Supervisor Verification - The centre's supervisor must validate the exception enrolment.
Upon successful slip is provided because special processing is required for exceptions; the card may take slightly longer than the standard 15-90 days turnaround time, Advocate Mistry concluded.
