Problems and Concerns Observed in All the CBR Programs Visited in India
1. Where Have All the Severely Disabled Children Gone? And the Girls?
In the hands-on workshops I facilitate in Latin America, there are always young children with severe cerebral palsy (CP) or multiple disability who can benefit from individually designed special seating. With these children we introduce the construction of special seats made with layers of cardboard pasted together (paper based technology).
I was eager to introduce these cardboard seats to the SLF mediators at our workshops in India. But in rural areas, we had a hard time finding children with severe enough disabilities to need them. I saw far fewer children with CP than expected. And of those I saw, their disability ranged from mild to moderate. I asked if the more severely affected children were kept hidden away by their parents, but was told no: the local CBR workers know every family and had detected every child.
The answer, most agreed, is that severely disabled children are often allowed to die —especially those born disabled—and especially girls. We saw far more disabled boys than girls than can be accounted for by the fact that in the general population boys outnumber girls due to amniocentesis (sex determination before birth) and provoked abortion of female fetuses.
Such problems have deep social roots, but are also linked to the pervasive poverty. Participants pointed out that the rights of disabled persons are closely tied to the basic rights of the people as a whole. This is why CBR increasingly emphasizes human rights as well as the overarching problem of poverty and undernutrition.
2. Assistive Devices That Don’t Meet the Users’ Needs
As in many countries—but in India more than most—much of the standardized equipment provided to disabled folks by the government (and even by NGOs) is inappropriate for the person’s needs. And in some cases the basic design is faulty:
Nearly all the crutches we saw people using in India were poorly adjusted. The hand-grips are adjusted far too high, so that the person’s elbows bend at 90 degrees. This makes it much harder to bear weight on the arms, and leads to the person hanging by their armpits, which is more tiring and can cause nerve damage.
A big cause of poorly adjusted aluminum crutches is that they are poorly designed. Even the lowest possible adjustment of the crutch hand-grips is far too high. OLIMCO, the government company that makes assistive devices, should redesign them so they can be easily adjusted for easier use.
In our workshops several persons’ crutches were readjusted by drilling new holes and lowering the hand-grips. The users were delighted with how much easier it was to walk.
Like the crutches, most parallel bars we saw were adjusted far too high, and also too far apart, for most children’s needs. This was the case even in the Kiran Center, where most of the therapy and rehabilitation was excellent.
For example, Ajit has spastic CP. Kiran helped the family build parallel bars for him to practice walking. But the bars were much too high and far apart for him to help support his weight on his arms.
During our workshop, at the Kiran Center the group tried adjusting the bars to a better position for Ajit. But the lowest adjustment was still much too high. So they raised the floor between the bars, until at last Ajit was able to stand straighter and more comfortably.
In our village visits we saw many persons with a paralyzed leg walking with poles, like the girl here. Many had never had the opportunity to use crutches. But others preferred the poles because the crutches with their high hand-grip were too hard to use.
It appears that the custom of poor adjustment of crutches and parallel bars is so deeply ingrained that even many highly trained experts accept it without question.
Now that the Network of disAbled Persons Organizations has become aware of the problem, they are determined to persuade OLIMCO to redesign their crutches so that the hand-grips can be correctly adjusted.
3. Tricycles and Wheelchairs—a Mixed Blessing
India is famous for its hand-powered tricycles. You see them everywhere. In cities and villages where rough roads and sand bogs make wheelchair use a nightmare, these tricycles with their huge wheels make mobility much easier—at least for those with the ability to use them.
However, most of the tricycles, like most wheelchairs, come in one, giant size. In campaigns of public charity they are given to anyone with a physical disability, whether the person can use one or not—a big frustration and huge waste of money!
Wheelchairs, although much less common in India than tricycles, suffer the same problems seen in many poor countries. They tend to be big and too box-like, especially for children. Jayaram is a 6-year-old boy with CP who was given a wheelchair far too big for him that increased his spasticity. In the Koraput workshop the mediators made a seat out of layers of cardboard. The seat inserts into his big wheelchair and lets him sit more comfortably, with less spasticity, in a better position.
But in the hill country where he lives, a wheelchair is of limited use. What Jayaram wanted to do was walk. But his uncontrolled movements made him fall every time he tried to stand or walk.
In the home visit, the mediators discussed various possible walking aids for Jayaram. But in the rough terrain where he lives, a walker or even a cane with tripod feet seem unlikely to function. At last they tried a simple walking stick. To everyone’s amazement, with the stick the boy was able to stand quite steadily and walk without falling.
So in the workshop they made him a colorful walking stick with a ring near the top to keep his hand from slipping.
Although we saw little by way of special seating in the areas we visited, the few seats we saw—though made with professional’s guidance—were unsuited for the children. Typical of institutional seats for disabled children in many countries, they were box-like, uncomfortable, ill-fitted, and did more to trigger than control spasticity.
For Suresh, a boy with CP in Koraput, a seat had been made that was so unstable and poorly designed that his mother, wisely, didn’t use it.
In the workshop the mediators cut off the legs of the seat, tilted it back to a better position, and built a cardboard insert, as well as a table. Now Suresh sits much better.