We have crossed the threshold into a world of suffering, pain, and loss—but also of indomitable courage and moral strength. I am speaking of the world of physical disability caused by tetraplegia and paraplegia.
A young, striking woman opened that door for us: Amalia Rossignoli D'Anna, paraplegic for nineteen years, president of the Italian Association for Paraplegics, elegant and tireless. Speaking with us calmly, she began by laying out some basic facts.
When the spinal cord is injured high up in the cervical spine, the result is paralysis of all four limbs—tetraplegia. When the injury is in the thoracic spine or the first four lumbar vertebrae, only the legs are paralyzed—paraplegia. Today, thanks to advances in pharmacology, even people with high-level spinal injuries survive. As a result, the percentage of tetraplegics has risen significantly.
In Italy alone, approximately 70,000 people live with these injuries. The most common causes, in order, are: car accidents, sports injuries (diving, motorcycles, swimming, horseback riding); violence (gunshots, beatings); workplace and domestic accidents; and certain diseases that compress the spinal cord—multiple sclerosis, spina bifida, and some cases of polio.
It is easy to see why the age group most affected is between nineteen and twenty-five. This is the age of reckless driving, of sports, of diving into pools, of taking risks and pushing limits.
Amalia explains that this severe injury always brings with it additional complications: loss of sensation, bowel dysfunction, bladder and kidney problems, circulatory troubles, and damage to the autonomic nervous system. Immobilized joints calcify easily. Skin breaks down into pressure sores. Sexual function is disrupted and often permanently altered. For tetraplegics especially, respiratory problems are constant and serious. To protect the whole body from further damage, continuous and meticulous care is essential—special precautions, constant vigilance, immediate attention to any secondary complication.
But all of this, Amalia says with barely a smile, is almost only half the problem. After spending five months in the hospital (eight for tetraplegics), a person who has received good care—and she stresses the word "good"—should be able to resume an almost normal life. Yet when they leave the hospital and return home, they find themselves trapped inside their own house.
Architectural Barriers
Door frames, kitchens, bathrooms, building entrances, elevators too narrow, steps between the sidewalk and the front door, environmental controls impossible to operate—all of these prevent the basic movements that a paraplegic, with a modern wheelchair, could otherwise manage with near-complete independence.
Consider too the many young people affected who must attend school, university, pursue existing or new careers.
So there are three great obstacles in the outside world, as Amalia summarizes them: accessibility of public spaces, mobility options, and access to public and private buildings. Back in 1978, a presidential decree (DPR 384) required all public buildings and transportation to be accessible to everyone, disabled and non-disabled alike. In January 1989, a new law addressed architectural barriers in private buildings and privately-run public spaces—medical offices, bars, cinemas, theaters. Everything should be accessible and usable. In reality, the 1978 decree was almost always ignored, and the 1989 law is not always fully applied.
In Rome
Our city has done reasonably well on individual assistance. Home care is provided for tetraplegics, but it is absurd that paraplegics do not receive the same. There is a free "taxi service," but it is available only to a minority of disabled people, based on criteria that need revision. Conscientious objectors could be enormously helpful if associations could obtain adequate numbers based on the actual needs of their members.
Amalia concludes this part of her account almost like a thought spoken aloud: "Yes, we cannot and must not say nothing has been done, that no help or resources have been offered. Much has been done. Large sums have been spent, though not always on extending services evenly. What we need now is better organization of these services, more rational and precise planning, without waste and without great disparities. In short, it is not always just about money—money alone is not always enough."
The Others
Let me return to a phrase that caught my attention: "the person who was cared for well." Did you mean the specific treatment, the rehabilitation? — "Both," she replies. Italy has no true Specialized Units—hospital departments dedicated to the complete care of spinal cord injury, as called for by a 1988 ministerial decree and recognized worldwide as the only valid approach to treating this particular and complex condition. We are dangerously behind. People are forced to seek care abroad, in better-organized countries, except for a few hospital departments where spinal cord patients are treated very well—but there are nowhere near enough beds for the demand. We know that each year brings 1,200 to 1,300 new cases across the country. But when I say "cared for well," Amalia continues, "in the aftermath, when the person returns to the world of the able-bodied, I mean above all the psychological support that is as essential as any other treatment.
These people can and must overcome the initial despair, the discouragement, the temptation to passivity. They must learn to accept their new limitations without being defeated by them—to accept a life that is different, harder, more constrained than before, yet still capable of offering great possibilities that must not be rejected or undervalued but discovered and used to the fullest.
Civil society, for its part, must help them down this path of acceptance and reconstruction. It must offer livable conditions, essential services, and integrated home care that allows professional caregivers and health workers to work together as needed. For tetraplegics, "protected housing" or, as they have in France, mini-residences meeting specific standards, seem to be the best solution.
Conscientious objectors could be enormously helpful if associations could obtain adequate numbers.
Conscientious objectors could be enormously helpful if associations could obtain adequate numbers."Young people," Amalia says, her tone growing more serious, more urgent, "carry with them, alongside their initial despair and violent rejection of their new condition, a great and irrepressible force for life that sustains them—an instinctive attachment to living that always allows them to rally after the crisis, to find the desire to laugh again, to be with friends, and to build with them a future that is not limited by handicap.
Parents, relatives, friends, neighbors—what should they do? Nicole and I ask, and we ask because we feel that from now on we will not be able to see a wheelchair without looking at the person in it with fraternal interest and solidarity. What must these friends do—people often so important and indispensable to the young and to all who are affected—so as not to make mistakes? What must they know, from the start, to avoid errors and to be present in the right way?
Alongside their initial despair, they carry an irrepressible force for life that sustains them.
Alongside their initial despair, they carry an irrepressible force for life that sustains them.Parents and relatives must first of all be on guard against their own feelings, their own anxiety, which makes them overprotective, all-encompassing, overly present and devoted at first—and then, after a time, necessarily tired, desperate at the thought of not being able to manage, crushed by a situation they no longer know how to bear. From the beginning, instead, they must be clear with themselves and with their loved one about what they can do, but also about the limits of their dedication, and how much the person themselves must also do their part. Friends must offer friendship. They must create every possible opportunity for a meaningful social life, showing solidarity, understanding, and tenderness. But all of them—parents, relatives, and friends—must remember above all, Amalia stresses, that they are dealing with an adult. An adult who thinks and feels and has emotions like any other adult. An adult whose capacity for reflection and self-knowledge has been sharpened by suffering, and whose will to live and to participate is identical to our own and is so often thwarted, bringing pain and bitterness. Not a child to be coddled with a smile and a compliment, but an adult waging a great battle for life. An adult who, as Amalia notes with wry humor, simply has one more thing: a handicap. And a different way of existing: they are sitting down, and they are watching. They are watching us who are standing.
- M.T. Mazzarotto, 1992