Alexis awakening to the sound of her niece playing a jazz piano piece.

What is it to be human?

 Aristotle defined ‘man’ as s a rational animal. And the French rationalist philosopher, Rene Descartes (1596-1650), opined that only humans have souls.   He suggested that animals, by contrast, are mere clockwork automatons preprogrammed through instincts and impulses. John Locke, a 17th century empiricist and an important enlightenment thinker, picked up Aristotle’s tabula rasa concept, stating that human beings are all born as blank slates on which experience writes itself to form us into the persons we become. But he would probably have agreed with Descartes that animals have preprogrammed slates on which nothing new could be written that did not fit into their pre-existing automaton code.

The German philosopher, Edmund Husserl (1859-1938) had a different view of the relationship between humanity and the rest of the animal world. He wrote a treatise entitled From the Animal Soul to the Human Mind. This might suggest that he saw the difference between animals and humans is quantitative, not qualitative and that there could conceivably be an overlap between the higher end of the animal kingdom and the lower end of the human kingdom.

Finally, there is Jean-Paul Sartre’s famous dictum as to what it is to be human: “Man is condemned to be free”. In other words, for Sartre what distinguishes humanity from the rest of the animal kingdom is not so much a set of special abilities but rather a curse.

These are the sorts of things philosophers tell us about the human condition. What about psychologists? The classic case of Phineas Gage probably begins that debate. In 1848 a long iron cylinder was blown through his head following an explosion. It did extensive damage to his frontal lobes resulting in a marked character change. He went from being a gentle and reasonable man to one who was pugnacious and unpredictable.

The frontal lobes are the seat of the executive functions, the brain processes primarily responsible for planning, organization, impulse control, mental flexibility and abstract thinking in general. They are the functions most closely associated with the uniqueness of the human condition. Did the damage Phineas Gage sustained deprive him of his humanity? Did he become a clockwork automaton, a Cartesian animal?   Because my daughter, Alexis, is profoundly brain damaged I have been haunted by questions like these.

Is humanity on a continuum, as Husserl seemed to suggest? Or is it possible to be so damaged that one cannot be seen as recognizably human – and, if so, does such damage take different forms? What does it take to be dehumanized? The twentieth century social psychologist, Stanley Milgram designed an iconic obedience experiment in an effort to explain the Nazi phenomenon that led to the Holocaust in World War II. His classic work on the conditions under which apparently ordinary individuals will administer painful electric shocks to others suggests that social pressures can lead to dehumanization in some cases.

Robert Hare in his pioneering work on psychopathy has looked at the relationship between lack of ordinary human empathy and anti-social behavior.  More recently neuropsychologists have explored cases where this lack of empathy is due to brain damage and localized it to the limbic area and the frontal lobes and the connections between them. So is it always possible to be or become dehumanized in a certain sense. But what does it take to become humanized in the first place? Is one born human or does one become human or are both conditions necessary to be considered human in any recognizable sense but the physical and genetic?

Anthropologists and others have been fascinated by the ‘wild boy syndrome’, referencing lost children purportedly raised by animals and with no recognizable language. They have asked the question ‘what makes us human?’ From this research, and the work of developmental psychologists beginning with Bowlby and Ainsworth on attachment theory, we can accept that it is possible to be born with all the necessary human requisites and still, through particular types of conditioning, end up without being recognizably human apart from the physical form. Well, that leaves us with a final question: can you not have all the requisite abilities but yet through a process of socialization be humanized?

For the past 39 years, since the birth of my daughter, Alexis, I have been confronted with the fact that she is profoundly brain damaged. Specifically, she is cortically blind, has severe epilepsy, uses a heavily adapted wheelchair because she is unable to sit independently, has no functional use of her arms or legs and so little mouth and throat control that she requires careful hand feeding of pureed food and gelled fluids. It follows that she therefore has no formal system of communication. In effect, you might say that she has locked-in syndrome. That is to say that, even if she has a sufficient level of cognitive awareness to relate meaningfully to others, she has no channel open through which she can express that.   All these years we have worked hard at nurturing her humanity. But now I have to ask myself the question: is she any more human than a well socialized dog?

I had a dog when I was a teenager. He routinely went for walks with my grandmother who lived with us. One day they were out and he suddenly returned alone, barking and banging at the door.   I opened it and he looked at me, barked, ran away a distance, came back, tried to grab my sleeve with his teeth, ran away again and came back until I got the message.   I followed him to where my grandmother lay on the ground some blocks away. She had fallen down and could not get up.   Fortunately, no bones were broken and together we brought her home.  She did not have the English to direct our dog for help even if we can assume that he understood the word, ‘help’.   He took it upon himself to get assistance. Is this agency, independent thinking?   Would my daughter be capable of that level of independent thought and action if she were not so physically impaired? I don’t think so.  Does that make my dog more human than her?

There is a body of literature exploring the boundary between animals and humans. George Herbert Mead believed that animals were fundamentally different from humans in their thinking and behavior because they lacked the capacity for symbolic interaction. But D. R. Griffin later argued that “awareness”, “consciousness” and “intention” have at least as much explanatory value in terms of explaining animal behavior as instinct and genetic programming. Alger and Alger suggest that symbolic interaction is simply the capacity to understand how the other perceives one and to act accordingly, as my dog did. The shared reality between domesticated animals and their human housemates provides the basis for a level of cooperation and community we normally attribute only to humans. I have a definite sense of this shared reality with my daughter but what does that really mean in terms of her humanity? I will consider some instances from our life together to try to answer this question.

When Alexis was six months old we noticed a peculiar phenomenon. While still in her crib in the morning or after a nap she would cry out for attention and we would start down our long, creaky hall towards her. When she heard the floor creaking she would stop vocalizing. Since this consistently happened and did not happen with kitchen or other noises we assumed a cause-effect relationship had occurred in her mind. Because of her severe cerebral palsy Alexis has a very limited physical repertoire. But she can smile and babble and she appears to consciously use these social interaction techniques to keep people engaged at times, similar to what normal infants do by six months or sooner. Of course, our dog wagged his tail and nuzzled our hands to keep us engaged so that might be considered equivalent.

That comparison inevitably brings to mind a pair of overlapping bell curves. Do animals high on their developmental curve overlap people low on theirs? Various people through the years have suggested that we get a companion animal for Alexis. I have always jokingly replied that we had Alexis and therefore did not need a pet. Was it more than a joke? Was I subconsciously equating them?

Does my daughter’s behavior reflect her humanity or simply sentience; unique tastes or conditioned habits?   I remember other instances through the years when I had cause to ponder this. Musical taste is one example. Alexis likes music but only when it is good. She particularly enjoys male tenors. I recall a time when she was in her standing frame and a newly re-mastered Caruso cd began playing for the first time.   Her face took on a quizzical look; she leaned her ear towards the sound and listened with an intent countenance. A big smile slowly emerged on her face. Alternately I remember the days when for a couple of years we actually had two other teenagers with similar disabilities living with Alexis.   One brought along some tapes of not very melodic children’s music and in the interests of democracy they were played intermittently with those of Alexis and the third individual. When the tinny children’s music started playing Alexis noticeably winced and fussed throughout. So did we but less overtly.   It was apparent to us that she understood the difference between good and bad music and had her own tastes. Would a dog have minded so much? I don’t know the answer to that question.

When Alexis was still a baby, less than a year old, we began special swim classes at the YWCA. We were taught how to swoop the children quickly under water and they reflexively held their breath during those brief intervals. We saw the freedom of movement they had in the water that was denied to them in their land lives and we saw the pleasure it gave them. The lessons stopped after awhile but one day about a year later they started again and I took Alexis back to the pool. She is blind and could not know where we were going but as we went downstairs in the elevator with its peculiar echoing sounds and as the smell of chlorine seeped in she became very happy and excited. Clearly one or the other or both of those sensory stimuli triggered a response and she understood what was coming next but does that make her human?   I was reminded of Pavlov’s dogs salivating to a bell, a conditioned stimulus.

A third instance demonstrated her capacity to count. Alexis started on an early intervention program at nine months of age and one of the exercises I did with her was ‘pull-ups’. She lay on her back on the floor and I slowly pulled her to an upright sitting position, waiting for her to raise her lagging head as I did so. This was straining and tiring for her but she came to accept that it was necessary. We started with seven of these but there came a time when I was asked to raise it to ten. I always counted as I went along and when I got to eight she objected severely and refused to cooperate. It took a long time to convince her we had to do three more and the same scenario occurred when I later raised it to twelve. Does this mean she could count? If so does that make her different than trained elephants and other circus animals that appear to demonstrate some capacity to count?

The fourth instance is particularly poignant.   When Alexis was 6 ½ our family went to Toronto for a year for my husband’s sabbatical. We did not take Alexis. I had hurt my back so severely that I needed surgery and was told I would never be able to lift again after that, not a realistic limitation in our daily life with Alexis.   The alternative was a month’s bed rest and a year without lifting. I chose that. We made elaborate arrangements for Alexis to remain in our Edmonton home with a care provider she knew and trusted and to attend school in the class of my good friend who was specialized in the area and would look out for her.   Needless to say it was the toughest decision I have ever made in my life.

At Christmas a friend brought Alexis to Toronto for two weeks and we enjoyed our time together very much. After she went back home I phoned to talk to her, to say I was sorry, to tell her how much I missed her. Alexis listened and then said “uh…uh…uhuhUHUH”.   I took that to mean, “Where are you? How could you leave me again?” It seemed a very clear message to me but of course, scientifically, I can’t prove it.   I do know it was very real because of the powerful effect it had on me.

A few years ago, my sister-in-law told us that she and her husband had gone away on a week-long winter holiday and left their dog, Rex, in the garage of his own home with his dog house, ample food and water and a daily dog walker to visit and attend to his needs. Rex became sufficiently upset by their abandonment that he chewed up all the insulating material in his doghouse and when they returned he kept coming to the patio window to assure himself that they were still there.   But he did not act angry with them. On the contrary I have the feeling that Alexis has been a little angry with me ever since that year we left her. Does Alexis’ response reflect a broader range of emotion and interpretation than that demonstrated by Rex? Does that speak to her human condition?

Several years ago, we observed Alexis’ response in the new Edmonton Art Gallery at the Death of Crows exhibit, a layered sound piece with various possible levels of interpretation.   I had seen it earlier and it seemed to me profound and to be touching a deeper level than the ordinary that perhaps Carl Jung might have related to with his notion of collective archetypes. The eerie sound of crows was interwoven with a sober toned monologue and laced intermittently with bursts of cannon sounds and runs of romantic, military and epic music relieved periodically by nature sounds.  Alexis sat entranced for a full 20 minutes before it was time to leave. Hers is a hearing world and she seemed to be reveling in the presentation, entering into it. Could a dog do this?

We run our own provincially monitored and funded service provider’s agency and have hired many, many people through the years on a part-time basis to carry out the quite elaborate developmental program we have constructed for Alexis. Some of these people are students specializing in physiotherapy, nursing, or other areas relevant to meeting Alexis’ needs and others have no special background but convince us during the hiring process that they have a natural inclination and facility to work effectively with her.

All Alexis’ assistants, whatever their background, are carefully trained and oriented by us after hiring and then closely monitored. But occasionally we make a mistake and hire somebody who talks the talk but does not walk the walk. Alexis always knows sooner than we do. They don’t have to do anything overt. But by little delays, by continually misunderstanding her communicative intent, by disrespecting her in subtle ways she quickly becomes alienated and uncooperative. It is quite clear to us that Alexis has a definite sense of her own worth and dignity and place in our home. Does that make her human?

These are a few of the examples that have come to me as I explore the interface between sentience and humanity and consider the question of what it is to be human. I would like to conclude with the first criterion listed by Domenic Mele in his interesting article, Organizational Humanizing Cultures. The issue with which he was grappling was how to treat employees so they will be as happy and therefore as productive as possible.

 

1. Recognition of the person in his or her dignity, rights,

uniqueness, sociability and capacity for human growth.

That is what we have done with and for Alexis and I think in the process we have both socialized and humanized her as much as possible.  But the haunting question remains: What is it to be human?

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