A Spider-like Wheelchair Carriage
As for getting from home to school, as long as Tonio was still able to walk reasonably well, it made sense for his grandmother to keep walking with him to school every day. This moderate amount of exercise would help keep his muscles as strong as possible, despite their gradual deterioration.
But, since Tonio and his grandmother only had stamina to walk to and from school in mornings, in order that Tonio to be able to attend the afternoon session, some kind of transport was needed. Perhaps a wheelchair. But on the steep, rough trail between his house and school, a standard wheelchair would be useless—and dangerous! And even it were specially adapted, who would push it?
With these questions in mind, I drew the following sketch of a “wheelchair cart,” adapted both for difficult terrain, and for the possibility of being pushed/pulled by a group of 4 or more small children.
The sturdy design has extra-large, widely spaced caster wheels in front, and broad mountain-bike tires. It also has four long, spider-like extension “arms” so that several children can handily push and pull it from both front and back.
I showed the drawings to Tonio and his classmates and asked them, if such a child-drawn carriage were made, would they be willing to transport Tonio daily to and from his home to the school, so he could attend the afternoon session. The class unanimously cried, “Yes!”
We asked Tonio if he liked the idea, and after a moment’s hesitation nodded yes.
It was apparent, however, that Tonio had mixed feelings about the device. And the teacher, who had got to know Tonio’s grandparents fairly well, felt they too might have reservations about providing their grandson with a wheelchair.
This we could understand. For persons who have progressive weakness or increasing difficulty walking, it is often difficult for them—and their loved ones—to accept a wheelchair. To do so is somehow to “give up hope.” To them, being “confined” to a wheelchair means resigning oneself to being “invalid” or a “cripple,” which they equate with being useless, helpless, unattractive, lacking value, and unable to lead a rewarding, productive life.
Such negative conceptions about disability are very common, and not easy to change. But it is crucial to get beyond them, to recognize that even people with profound disability can often lead fulfilling and happy lives. Getting to know disabled persons who are doing just that is important for someone struggling to accept their disability. For this reason, in my slide show for Tonio and his classmates, I included photos of wheelchair users who devote their lives to designing and creating customized wheelchairs for disabled children. I told the children that Tonio’s unique “child-drawn carriage” would be made by a team of wheelchair riders in PROJIMO Duranguito.
And so the “all-terrain spider carriage,” as it became known, was made. Raymundo, a paraplegic, wheelchair-using leader of the Duranguito team, took personal responsibility for the construction of the carriage. It was completed and beautifully painted within a week.
When we took the carriage to the school, everyone was excited about it—with the exception, perhaps, of Tonio. All the children wanted to try it, both as riders and pushers. We let them test it out before Tonio tried it, and their overflowing enthusiasm with the strange carriage was what I think proved contagious for Tonio.
I had worried that Tonio might refuse to use the strange device. But when his turn came, he willingly got into the carriage and let the other children push/pull him around the spacious playground, trying it out.
Now it was time for the real test run: from the school to his house. Tonio’s grandmother had come to accompany the expedition. The schoolteacher, a bit nervously, also joined the brigade. All Tonio’s classmates were chafing at the bit to help transport him in the spider-mobile. And with its long arms projecting fore and aft, as many as 7 or 8 youngsters could all push and pull it at once.
To everyone’s delight, when we reached the irregular trails with sand, loose rocks and steep ups and downs, the group of children effortlessly navigated the strange vehicle in a surprisingly smooth ride.
When we reached his house and Tonio dismounted, we asked him if he liked his new spider carriage. With the biggest smile I had yet seen him give, he replied an emphatic, “Yes!”
Little by little, his grandparents—who at first had serious reservations about their grandson using a wheelchair—have become more comfortable with the idea, and they are pleased to see him interacting more with the other children.
Thus it seems this strange “daddy-long legs” mobility device has accomplished several objectives at once.
It has provided the means for Tonio to attend the full day of school.
It has provided an adventurous way for him and his classmates to interact more fully and joyfully.
It has helped both Tonio and his grandparents begin to accept the intermittent use of a wheelchair, which, as his muscular weakness progresses, will eventually become his primary means of mobility.
What’s more, the boy, along with his classmates, has learned that wheeled mobility can be fun!