Logo of Disability News and Information Service (DNIS)


Dystrophy-afflicted siblings tired of waiting; seek President’s permission to end their lives

DNIS News Network – Tired of waiting for help that never arrived despite promises from various quarters, four siblings from Barbil in Orissa, Mohammed Sams Ansari, Mohammed Faiz Ansari, Mohammed Manzul Ansari and Tarrahnum Banu have appealed to President A.P.J. Abdul Kalam for euthanasia as they suffer from congenital muscular disorder. They have also threatened to commit suicide if their request is not considered.

Four siblings who have sought permission from President Kalam to end their lives

After the news was published in most newspapers, NCPEDP partner in Orissa, Swabhiman, sent a team to Keonjher on 11 June for a reality check.

The 11-member Ansari family consists of father, mother and nine children. Of the four sons and five daughters, three sons and a daughter suffer from Autosomal Recessive Limb Girdle Dystrophy. It is not just the one in a million found genetic disease that has driven the Ansari siblings to request euthanasia, rather what has added to their vulnerability is the apathetic attitude of the concerned authorities who have turned a blind eye to their miserable condition and remained deaf to their repeated pleas. Steeped in poverty the siblings are living with an incurable yet treatable disease as their ageing father’s frail shoulders find it hard to bear the expenses of medicine.

The father Mohammed Yunis Ansari is a motor battery mechanic, working at Barbil and is the sole breadwinner of the family. The only non-disabled son Mohammed Sazid Ansari is studying Commerce (final year) and his studies are also hampered as his disease-ridden brothers entirely depend upon him for mobility. The brothers said they were affected with the disease when they were about 8-10 years old. The siblings were prescribed some medicines by National Institute of Mental Health and Neuro Sciences (N.I.M.H.A.N.S.) which would make them fit for longer days, but it would not revive their conditions. And the cost of the medicine (for four siblings) was Rs. 6,000 per month.

When they approached Red Cross, they assured that they reimburse the medicinal expenses (letter dated 28.01.2002). But the Ansari brothers stated that reimbursement for only one month was made and that too in two phases, after two years.

The Additional District Magistrate, Keonjher, had recommended a grant of Rs. 50,000 to each of the affected siblings from the Chief Minister’s Relief Fund (vide Memo No. 150, dated 29.01.2002), but till date there has been no communication in this regard. Picture of participants in the dharna In 2001 the siblings had also submitted a grievance petition to then President K.R. Narayanan, and received a reply stating that their petition has been forwarded to the secretary of Prime Minister’s Office for appropriate action.

With every passing day the disease is taking its toll. Ansari brothers have even been denied a loan to start a business, and the reason given was that in an ailing condition they would not be able to run any business and they might fail to repay. Whatever aids and grants have been sanctioned by the government are also meagre. The municipality has allotted a 10/10 feet land to the brothers for construction of a shop which the Ansari brothers say is under litigation. After four years the authorities had provided two tricycles.

The siblings have been asking for reimbursement of medical expenses on regular basis and a government job. After the verbal assurance of the District Collector on 16 May 2005 to provide a typist job to one of the brothers, Mohammed Sams Ansari quite enthusiastically started practicing, hoping for something amidst heaps of disappointment. He also spends his time in canvassing his thoughts while Mohammed Faiz Ansari expresses his emotions through poems.

The neighbouring people were under the impression that with wide coverage in the media many times, and with so many people visiting them often, the Ansari siblings were receiving some grants and aids. But no one is truly aware of the stark reality in the lives of these siblings, as they get tired of sharing the same sorrowful experience with numerous people with no positive result.