Cast Out, Without Crutches

THEY used to call it home, till the gods decided to change the definition around a bit. It was the only refuge in the country for the spine-injured in the three wings of the armed forces. But now the inmates of the Paraplegic Home in Pune have been told flatly that it's farewell time. The defence authorities have chosen to refashion it as a rehabilitation centre. The gates have already been shut on the backs of eight wheelchair-borne individuals. The 63 others, of whom 26 are living with their families, know it'll be their turn soon.

The tune to this farewell song was set three years ago, though the first chord was struck by army chief Gen. V.P. Malik. According to the centre's medical director Dr (Lt Col) S.P. Jyothi (VSM), Malik was convinced that no institute could remain dynamic if it continued to be just a 'home'. It ought to be, as originally intended, a rehabilitation centre that would reopen the world to its inmates. The cost of running the home, at Rs 45,000 per person per year, was not the factor cited for the makeover. But it ate into a corpus with an initial of Rs 36 lakh, intended to set right not just the crushed spine but also the more devastated will to live of the inmates.

Jyothi suddenly finds himself, unsurprisingly, persona non grata. From a giver of succour, he's been reinvented as one who succumbed to pressure. Jyothi has helped nurse back every inmate from a state of helplessness more poignant than of a new-born child. Today, they glare accusingly at him when he comes to propel their wheelchairs. Jyothi is resigned to this. That, inmates mutter, is easier for him. They now throw back at him his own observation that such a centre was unique to Southeast Asia. That the survival rate of paraplegics here had been 100 per cent, as against the 80 per cent deaths recorded of those set free into a world that's often not just unsanitised, but also desensitised to their special needs.

Among the first to feel the gnawing loneliness is Mukundi Singh, formerly of Army Medical Corps. After 22 years at the centre, he is finding that being a bachelor, particularly a paraplegic one, can magnify his loneliness multifold. "But mine's a special case. I had already been working as a divisional clerk at the Central Fighting Vehicle Department. I have a regular income of Rs 6,000 per month, I've been given accommodation. My commandant D.S. Garewal has instructed those on duty to help whenever I call out. I can use a wheelchair, or use my specially-modified rickshaw to come here. I don't feel as if I've left the place at all," says Singh, who's been the centre's proud participant in several international weight-lifting and basketball games. But a host of what-ifs do plague his sleep. What if his next commandant is not as accommodating? Or if looming retirement sends him back to native Kumaon whose hilly terrain is distinctly wheelchair-unfriendly? What if he manages to save enough for a dream flat but finds that nothing's available on the ground floor or in buildings with working lifts? There are more gripping physical problems he'd have to face without the usual support systems: simple things like getting in or out of his rickshaw. His waste fluids could reach near-fatal overflow, the diabetes and blood pressure that plague him could attack simultaneously, he could wake up one day to find that he's lost the carefully-acquired upper-body strength needed to turn himself over in bed. Bed sores could take him painfully along the path of gangrenous death.

Jyothi defends the decision. "When directors from other centres visit us, they're surprised at the nil suicide rate here." The inmates have been taught everything—from remodelling equipment (autos/ scooters/trolleys) to rearranging their lives as quadriplegics (paralysis from neck down) or paraplegics (paralysis from lower-half of the body); from vocational pursuits like tailoring, teleoperations, typing, radio-watch-TV repair; from self-injecting Pappaverine to achieving erection for sexual satisfaction—in short, earn their living and be as financially and physically self-sufficient as possible. "The stress has been on exercise, on rediscovering the joy of competing in games. Many have been here for over 20 years, almost since we was started in '74. Since lodging, nursing and medicine is free, they've saved most of their earnings. Some have married, most have bought houses redesigned with ramps and special WCs," he says.

 A spine-injured person, if he isn't given exemplary care in initial stages and is sent back home, invariably dies in just two years. Neither he nor his family is taught to handle urinary problems or those of bowel discharge, prevention and treatment of bed sores. "After initial familial sympathy dries up, the patient's left alone to mull over his fate. He can't move around in the difficult terrain of his rural hometown. His will to live is damaged fatally," says Jyothi. The centre has been an emotional and physical crutch for such people. But it's time to move out, make room for others who may need similar nurturing.

For even wombs must eject their offspring. Even if acceptance of that is slow and reluctant. Antony Pereira, now in his 50s, is the institute's star sportsman. A store clerk-workshop supervisor in the army's engineering section, he anticipates an unfair world out there. His grouse: "In the '99 Asian Games in Bangkok, I found I had to compete against polio patients! Our government announced a Rs 5 lakh award for a gold medallist but offered the disabled just Rs 15,000." The centre's collective cheering has guided him out of these let-downs. "We spend from our own pockets just for the thrill of participation." Former regiments, friends pitch in. But native Thiruvananthapuram is not expected to be as kind.

BHOPAL Singh Choudhury, who like Pereira has lived here with his family almost since inception, owns an auto-rickshaw, a house, a shop, plans an STD booth, has married off his children, but still dreads being discharged. He's resigned, however: "If asked to go we will. But I can't expect to survive even two years in the outside world." Pandurang Jadhav agrees. "You may think we're seated here comfortably in our wheelchairs. But there's always some physical discomfort. Tetraplegics don't sweat neckdown. Some are wearing urine bags. We aren't even men anymore." Their resignation is tinged with demands. "We'd go, if we're given a house each."

A house isn't what R.J. Manickam from the Army Service Corps wants, but he's dejected over how callous the country is towards its disabled. He's often tried negotiating a difficult trip home from Mumbai to Madras by train, from there by road to Egmore station, then to Tiruchi by bus, before trundling to his village in available transport. A friend helps him bridge each stop. And though he may be Jyothi's right-hand man, he gets no pension since his injury is "not attributable to service" while most of his salary is posted back home in Tiruchi. The army has also decided not to admit persons in that category here.

Similar waves of dejection sweep over former flying officer M.P. Anil Kumar. Though Jyothi assures the centre will never discharge tetraplegics like him who require round-the-clock attention, most fear that a funds-crunch may lead to closure. Kumar's paralysis neck-downwards cramps his waking moments to a few hours, in which he's learnt to work on his computer with a pencil in his mouth. Kumar's even had to relearn the process of masticating. He also reads voraciously, while an attendant hovers around to turn pages. He hasn't visited his Thiruvananthapuram home since his accident; he's uncomfortable with visiting relatives who're often "lachrymose". Despite his assured stay at the centre, it was Kumar who took issue with the authorities in the media, questioning (retd) Brig. N.B. Grant's suggestion that their continued stay denied opportunity to "2,000-odd ex-service paraplegics to rehabilitate". In his letters, Kumar said this figure was exaggerated, that there was an unused 28-bed dormitory inaugurated in August '94, that though it may now be called a rehabilitation centre, "no training was given because it was conceived as a home". Even those working at the centre's workshop for electronics company Amphotronix were only assembling parts—it gave them no job experience.

However, others feel such fears are exaggerated. The ones discharged till now were allegedly part of establishment witch-hunting—mouth-painters who had refused to accommodate the army's demand for a few paintings due to their international commitments. Countering this are suggestions that these painters, though offered payment by the army for a card contract, had been churlish in refusing it despite availing of its hospitality for over 20 years.

Jyothi gently discounts these arguments. "A two-year rehabilitation is generally sufficient. The inmates have been here for over 20 years. And the figure cited by Brig. Grant has been collated from spine-injured in army medical cen-tres. We've held durbars to get them used to the idea of eventual discharge. And while Amphotronix provides them with a regular income, it's untrue that no vocational training is given—every inmate is trained at the Queen Mary's Technical Institute. The army hospitals can meet all their needs." Clearly, the authorities are convinced over the slogan: "It's not their disability, but the ability that counts." The inmates don't seem too certain of that.