Power Over the Invisibles

Luciana Rodríguez1

My contribution to this consultation is from my experience as a psychologist working with a minority group who has no power to claim the rights they should have in laws, psychological treatment, health care, education: the mentally disabled.

I am a therapist working with the autistic or, I should say, people with autism. I would like to stop here to consider the way we use words. Something as simple as defining a person as autistic, or Down, or psychotic, or undernourished, or leper, can blur his/her human condition. If we focus on the disorder we might ignore his condition as human being. This is one way of denying human dignity to people with disabilities.

Autism is a severely incapacitating life long developmental disorder that typically occurs in the first three years of life. It causes impediment or disturbance in three main areas: social skills, communicative (verbal as well as non verbal) skills, and in their repetitive and restricted behaviors. As many psychopathologies, it not only affects a person, but also his/her family and environment. Too many times these families are rejected and ill treated by a society full of prejudice, indifference, or lack of information.

But autism is not alone in this predicament. Everybody involved with people with disabilities are painfully aware of the discrimination they run into almost daily. This discrimination makes them vulnerable, and since they seem to have such few rights, they are usually left powerless. And this is certainly true not only of the disabled. We should include every other minority group that has no power to claim for what as human beings is really their right.

What does powerless mean? Who are the powerful? What can the powerful do? What should the church do in order to become the voice of the meek and humble? I am going to address these questions considering power as the often unquestioned force within or behind interpersonal relationships, a power that inevitably has social consequences.

There is no denial that psychologists have power over their patients, power granted by the scientific discourse. As such, we work on a patient’s body and mind. From the medical point of view, we work on a sick body, a powerless body, to rehabilitate. That is why we call them patients, which as described by the dictionary means submissive, resigned, uncomplaining, passive, long suffering – or that is what we as medical professionals sometimes expect them to be.

But let’s consider another way of facing this therapist-patient relationship, taking the patient as a human being first, with needs, emotions, feelings, abilities, preferences, sufferings, as any other human being integrating in a family, being part of a neighborhood, a city, a society. Our work as therapists should include the person with autism and his/her family and total environment. We should be working not only on a sick body but with a complete human being. It is our responsibility to use our knowledge, which translates into power, to provide resources for a better living.

Exactly one year ago my cell phone rang. It was a colleague: “Luciana, I have a patient who needs to start his treatment urgently. He is 8 years old and has not received any previous treatment, other than pharmacological. He does not talk, nor hold a fork; he does not dress by himself, he is a little animal.” “What is his name?” I asked. “I’m not too sure, I think it is Leo”,2 he answered. That is how I was introduced to one of my latest patients. Do you think my colleague considered Leo as an eight year old boy or did he just think about him as a “condition”?

Leo has only recently been diagnosed with the Autistic Syndrome. His family had been struggling for the last eight years to get a treatment fit for Leo’s needs. They had visited every doctor and specialist they were referred to but no one had been able to give them a clear diagnosis, nor an adequate treatment. Meanwhile, Leo had to undergo hundreds of tests, analysis and was prescribed a number of medicines to counteract his aggressive and auto-aggressive behavior and his epilepsy.

My first encounter with Leo was at his home, where the treatment would take place. Contrary to what I had imagined, I saw Leo showing a bright smile and rocking in a corner of his bedroom. I had not expected to see him smiling. As a result of the description received, I had pictured a boy with a dark look in his eyes.

The first weeks were very hard for everybody. It meant a treatment for Leo as well as training the whole family in new attitudes and behaviors, and this meant a lot of changes. A parent’s attitude in these cases is usually that of total surrender of the child to the professional. I had to be very careful with my wording, since every one of my words could be taken as absolute (holy word). The therapist is perceived as having the power given by knowledge to solve all the problems.

This main characteristic of the therapist-patient (and family) relationship on one hand is necessary but on the other hand it is quite dangerous because as therapist we are placed in the position of “all powerful”. We do not belong in such a place. We must understand that we are simply professionals with tools to help. We must also bear in mind the need to discourage the assumption of our infallibility. It is very tempting for a psychologist to appropriate the patient’s achievements as if they were of his own doing, thus becoming some sort of god almighty and as such, deserving to have all the power over the life of the patient and his/her family. This position of almighty is sometimes made explicit in the expressions of some professionals when talking about the patient’s achievements: “I succeeded in making him talk.” Expressions like these tend to underline success in the therapist’s ability rather than in the achievement of the patient. Inevitably, the focus lies on the therapist and not on the patient, who happens to be the real actor of his/her accomplishments. In doing so, it is easy to consider the patient as a case where we can enumerate achievements and forget that his/her total welfare is what should really matter.

But Leo is fortunate in that his parents have enough resources to pay for his treatment and special medicine. Those who are not so fortunate must refer to what the state provides. We might all agree that all people with disabilities have the right to receive adequate treatment. Although a law might exist, as in fact it does in Argentina as well as in many other countries, the state usually offers only the basic care for survival but not for development, far from what is adequate for the development of their potentialities. We should ask ourselves what parameters the state uses to protect or ignore different groups. Does society have within its priorities the protection of the weaker, the minorities?

The unfortunate situation is that no matter how good the laws might be, in real practice the state provides little or no care at all to people with autism. This is true of many other disabilities. Being a minority group, the mentally disabled and their families have little power to claim for their rights. Consequently what they can do is to form parents’ associations in such a way that they become voiced enough to be heard demanding that the state comply with the written law. But their goal goes further: it includes information and orientation to parents who have just received a diagnosis for their child. They also provide mass information to all the society – information that will help eradicate the prejudice that generates so much harm, hurt and injustice.

Leo’s neighbors complained because of Leo’s unsocial behavior and his yelling for long periods of time, a noise that disturbed them very much. The parents were given guidance as to how to handle the problem that obviously affected other people and can only be solved with understanding and solidarity, something that is not always abundant in our society.

There is no excuse for the distress that Leo’s parents had to go through. Eight essential years were wasted looking for appropriate diagnosis and treatment. Not even the medical professionals, neurologists, psychiatrists, pediatricians, knew enough about the disorder to give adequate guidance. It is the associations that have assumed the responsibility of training professional interested in the subject. It is no accident that the medical profession ignores the problem so grossly. It is the result of what those in power decide what the society should know, be interested in, care about.

All these situations must be considered within the frame of violence: violence, ill-treatment imposed by society itself. The state is not exercising its power to revert the situation, turning into the main responsible for the discrimination and violence. An important way of evaluating a society could be observing how it treats the disabled, handicapped, and elderly; in short, those who need assistance to survive.

It might be pertinent to ask how the church treats the powerless people. Are the powerless included in our services? Does the church make them feel part of its body? The church has a duty to remind humankind that the divine commandment of “love thy neighbor” means respecting their needs, being aware of them, taking care of them. How do we react if our neighbor is a person with autism or any other powerless? Many times we are not able to understand the reason of life of those diminished by disabilities, suffering, but we do know that God has a plan and a reason for every life, even those that we sometimes regard as senseless. If we agree, and I hope we all do, that as Christians we strive to follow in Jesus’ steps, we will bear in mind the many times when he took pity on the deprived, the blind, the leper, the children, the women, the meek, the needy, the powerless. But he went further. He not only had mercy on them; he did something to improve their lot; he used his power to alleviate their suffering.

Following the teachings of Christ, we as church should remind society to respect human dignity in health and in illness, in every act we do and in every word we use. We should be using our power to do good and to seek justice and peace. But what is power? As our document clearly states, power in and of itself is morally neutral, an important and necessary factor in all human relationships. It is the energy, the potential to act, to effect and to shape. It should be clear that power is present not only in high places but in our daily life, in all our relationships. We must use this power, given by the grace of God, in every single action, no matter how small.

How do we know that we are using our power in God’s will? It is only through constant prayer, asking for guidance and the active listening to what God has to say to us that we will be able to understand how to use our power to do good and to seek justice and peace.

NOTES:

1 Luciana Rodríguez is a trained Christian educator and therapist with children and adolescents with autistic syndrome in Buenos Aires, Argentina.
2 “Leo” is a fantasy name used in order to protect his identity.