Mumbai parents' Aadhaar battle for severely disabled son highlights biometric hurdles

Every morning begins the same way in the tiny 185squarefoot home of Nayan and Bela Shah in RK building Khetwadi8th lane GirgaumThe day starts not with breakfast or a newspaper but with lifting feeding bathing and cleaning their 36yearold 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 helpFor 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 familys income caregiving has been a fulltime responsibility for nearly four decadesToday their greatest fear is not their sons disability It is their own advancing ageWe 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 answerA Tragedy Within Hours of BirthNayan 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 ETheir joy lasted barely half a dayWithin 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 NayanHe Devarth survivedBut the brain damage was irreversibleThe 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 medicationYears of physiotherapy enabled him to regain limited speech and some understanding of the world around him but not independenceHe 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 fatherA Lifetime of CareThe Shahs tried everythingThey 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 followedNothing changed the reality that Devarth would remain completely dependent on his parentsNow 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 wheelchairHe 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 fatherThe Battle Against BureaucracyIf caring for a severely disabled son was not difficult enough the Shahs now find themselves trapped in another strugglemdashone against bureaucracyFor years they have tried unsuccessfully to obtain an Aadhaar card for DevarthldquoBecause 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 failedrdquo said the fatherThe family visited Aadhaar enrolment centres including post offices in and around their house but all attempts failed They even called the UIDAIs 1947 helpline Officials even visited their home to record his biometricsNothing workedThey tried everything They simply said they could not capture his fingerprints or iris scan says NayanWithout Aadhaar another problem surfacedA Bank of Baroda account opened in Devarths name when he was a minor has been frozen because mandatory Know Your Customer KYC formalities cannot be completedWithout Aadhaar the bank cannot update his recordsWithout updated KYC the account remains inaccessibleIt 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 NayanIdentity DeniedIronically Devarth possesses several official documentsHe has a birth certificate issued by BMC lsquoCrsquo ward Public Health DepartmentHe has a disability certificate issued by All India Institute of Physical Education and Rehabilitation Mahalakshmi in the year 1999Yet none of these are enough to complete the biometricbased Aadhaar processThe family says every office they approach points them back to Aadhaar while Aadhaar authorities insist that biometrics are essentialmdashcreating a vicious cycle with no solutionA Future Filled With FearThe 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 goneToday we feed him bathe him and look after every need Tomorrow who will do it asks the father with a moist voice quietlyThe question hangs unansweredA Larger QuestionDevarth Shahs story is not merely about one familys struggleIt 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 disabilitiesAs India expands digital governance disability rights advocates have repeatedly argued that alternative mechanisms must exist for individuals who are physically incapable of completing biometric authenticationFor the Shah family however the issue is painfully personalFor 37 years Nayan and Bela have fought doctors disease and destiny to give their only son a life of dignityToday they find themselves fighting something far less visiblemdashbut equally unforgivingA machine that cannot read his fingerprintsAnd a system that cannot see beyond themWay outldquoA Person with Disabilities can obtain an Aadhaar card under the exception category The Government is dutybound to issue the document after following the process and verificationrdquo said Advocate MistryProcedureAdvocate 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 guidelinesSteps for Exception Enrolment1 Visit a Centre Take the individual to the nearest Aadhaar Enrolment Centre along with standard Proof of Identity POI and Proof of Address PoA documents2 Inform the operator Clearly state that the individual requires enrollment under Biometric Exceptions due to missing fingers amputation burns or blindness3 Capture Facial Photo The operator will take a clear photograph of the individuals face4 Exception Logging ndash The software handles the missing biometrics by logging an exception code and capturing a photograph of the missingdeformed fingers or eyes if applicable5 Supervisor Verification ndash The centrersquos supervisor must validate the exception enrolmentUpon successful slip is provided because special processing is required for exceptions the card may take slightly longer than the standard 1590 days turnaround time Advocate Mistry concluded