Once the difficulty in getting to and from home to the school-grounds was, in large part, resolved with the child-drawn carriage, the next physical barriers to deal with were the two steep flights of steps at the schoolhouse. Something needed to be done to make it easier to get into the school, and to get from the schoolhouse to the playground during recess.

One of the possibilities we considered was to build ramps. However, a simpler, if more short-term, alternative would be to install railings for the steps.

Ramps clearly would theoretically provide a more long-term solution. In a few years, with his muscular dystrophy, Tonio’s body will become too weak to walk; he will then get around principally in a wheelchair. Stairs will no longer suffice, and ramps will be needed.

But, for the time being, Tonio can still walk. Be it with difficulty, he can still go up steps by pushing on his weak thighs to provide additional force. But the steep steps ascending to the school, without handrails, are too difficult—and too risky—for him to climb without assistance. And when he has to be assisted he feels ashamed.

One advantage of railings over ramps is that they would be quicker, easier, and cheaper to install. Another advantage concerns Tonio’s physical capacity. By continuing to climb the steps daily while he can, he would get exercise he needs to keep his weakening body in as strong condition as possible.

It will probably be two or three years until Tonio becomes too weak to climb steps, even with a railing. By then he will have graduated from primary school and, hopefully, be attending secondary school in a neighboring town where there is one. So it seemed reasonable to hold off on ramps for the time being, and look to the short-term solution: railings.

For the necessary materials, Polo bought some old steel pipes cheaply in a scrap metal yard in Mazatlan.

The pipes were then welded by the disabled workers at PROJIMO Duranguito.

To install the railings we felt it would be a good idea for the families of the schoolchildren to help do the work. This activity could help get the community more involved in understanding and responding to the needs of those who are more vulnerable. The teacher agreed with this “community involvement” in principle. But based on his experience, he thought it would be very difficult to gain the participation of adults in Tablón #2. Community spirit was at a low ebb. Poverty was increasing, and many families had moved to what they hoped would be greener pastures. The teacher had a hard time even getting parents to come to meetings about the education and well-being of their own children.

Tonio’s grandfather had similar doubts, and offered to install the railings for the school steps by himself. However, he agreed that to raise community awareness and cooperation, getting the families involved in installing the railings was a good idea.

So we gave it a shot. The “railing-raising” date was set on the next Sunday at 4:00 PM, when most fathers would be home from work, and when the heat of the day would be subsiding. Although this was during the Easter holidays and school would be closed, Felipa and I talked to some of the children, who spread the word, like a grapevine. Also, the teacher sent a cell-phone message to all of the parents. But he was still less than optimistic.

To our delight, the response was fantastic. Although there are only 11 pupils in the school, nearly two dozen parents and relatives showed up—mostly fathers, but also mothers, grandparents, and siblings—as well as some of the schoolchildren.

With all these volunteers, the work went rapidly. Several men brought tools.

One of the most encouraging things that happened that afternoon while the railings were being installed, was the conviviality that emerged between Tonio and some of the other children present. To escape from the hot sun, Tonio had sat on the curb in the shady eastern side of the schoolhouse. At first he was there alone. But soon some of his classmates and other children—perhaps remembering the lessons on inclusion they’d learned in the Child-to-Child activities a few days before—sat down beside him in a friendly way. Before long, they looked like a group of young buddies, sitting together and talking whatever came into their heads. Tonio was actually speaking a few words, and smiling. It was big step forward from the withdrawn, totally silent niche he’d occupied just a few days before.

 

It is hard to know how things will be for Tonio. Life with muscular dystrophy is not easy. It entails the progressive decline of physical strength, with a loss of one physical ability after another until finally the lung muscles are so weak that breathing is compromised, as is the ability to cough. This often leads to pneumonia, followed by death, usually in the later teens or early 20s.

For all that, some people with muscular dystrophy or other seriously decapacitating or life-shortening disabilities, find ways to lead fulfilling and meaningful lives. In my book, Nothing About Us Without Us, Chapter 48,I relate a story about four siblings with muscular dystrophy who, even as they grew progressively weaker, were able to have adventurous lives. With their parents they helped to start and lead a program for other disabled children. In the process, they found a satisfaction, a sense of worth, and a degree of joy far beyond that of many people who are essentially normal.

 

Let us hope that Tonio continues to come out of his shell, to interact more confidently with his classmates and other people, and to gain the understanding, motivation and skills he needs to lead his life—for however long it lasts—with his fair share of satisfaction, loving relationships, and joy. Hopefully the growing awareness of his classmates, and their efforts to include him and to make his schooling more accessible, will help him on his way.