[The following essay is excerpted from Andrew Barron’s Human Difference: Reflections on a Life in Proximity to Disability (Cascade, 2024).]
It is funny what a difference an extra Chromosome makes.
We had no reason to expect that Rafi would be the kind of difference that would so profoundly affect the trajectory of his life. And ours. His difference lay in his chromosomal composition; those small bundles of genes have a lot to say about how the body and mind develop. All those differences were already present when he was conceived and lay curled within, invisible to us.
Twenty-nine years later, Rafi’s difference is present in his orientation to his own body, to time, to space. I am not sure if he really knows what time it is or where he is. He is not good with abstractions. He can read the time, and he is always in the present. He knows he lives in Toronto, and he looks at maps, but I am not sure he knows where he is. His body, too, seems a mystery. It’s soft and mushy and he has very little muscle tone. He is comfortable being naked around strangers and helpers. He is not ashamed to burp, fart, slurp, or laugh around anyone at any time. He smiles easily, but he is not always in a good mood. He complains if things are out of order. Once we were in a bookstore together when Rafi bumped into an extremely tall man. He looked up and with astonishment said “Wow!” The man smiled and the two of them enjoyed a good laugh together, an affectionate moment of sympathy in mutual differences.
Rafi seems impervious to sorrow. Friends, family, and animals we know and love, have died over the years without much reaction. He calls his new dog the same name as his old dog. He speaks of dead relatives in the present tense. Where are grandpa and grandma? In Florida! And where is that? Florida is right next door to Rafi. Everything is present, in space and in time.
This lack of orientation acutely affects his life and ours and definitively establishes differences in our lives from those of our friends and peers. Rafi can never be alone. He cannot respond to an emergency. He cannot organize his day, toilet himself, or walk alone to the park. He has echolalia: He repeats the last thing you say. Did you go to the park? Yes. Did you go to the store? Yes. One or either (or neither) might be true. The day he underwent dental surgery, we ate dinner together that evening. What did you do today, Rafi? I went to Walmart. He is loving, funny, adorable, charming, and infuriating
He understands that money is necessary, but only in an abstract way. He cannot make life decisions. His receptive language is excellent. His descriptive language is minimal. He doesn’t have friends in the same way the rest of us do. All the people he regularly spends time with—outside of family—are paid. He loves to talk, but mostly about the next meal to come or what the previous one was. As a child he played, he laughed, he thrived. Sure, his milestones were different from those of other kids, but what did it matter? He was Rafi. Things would take as long as they took. He was different and he was ours. We embraced it all.
After Rafi we had two girls, and they grew up thinking his difference was normal. “What? Not everyone has a brother with Down Syndrome?” Rafi went to school and was popular, but he didn’t have any real friends. No one tried to include him in the street hockey or basketball being played in the neighborhood.
Rafi is now an adult. He attends a vocational day program and works at a pet store and a restaurant, leaving early in the morning and returning home in the late afternoon. His helpers come on weekends to swim and play basketball and tennis. Some help him shower and shave. He is a man, and it is hard to know how to manage a man who sometimes acts like a toddler. We have been through a lot of behavioral problems. Rafael can be angry, belligerent, petulant. He can become compulsive about his eating and daily schedule. He sometimes refuses to get on or off his bus. He might freeze up or shut down. He once punched his helper. We spent thousands of dollars on therapists, but when we asked Rafi about what was going on he would answer “I don’t know.” He understood that we were concerned, but he could not communicate what was going on internally. The best the doctors could do was diagnose depression and anxiety based on his symptoms. I could list the things that Rafi is missing out on: independence, intimacy, travel, money, vocation. But he is not really missing out on anything. He is loved and he loves. He has a sense of belonging. He is cared for.
I do not think I want Rafi to have Down Syndrome. Yet days and weeks go by where I don’t even think about it. Our lives have a pattern much like everybody else’s. If Rafi were “normally” developed, our lives would simply be different, not better. Our own contentedness flowers from being securely planted inside this space of difference.
One who sees . . . people with disfigured faces or limbs, recites the blessing, “Blessed are You, Lord our God, King of the universe, who makes people different.” One who sees a person who is blind or lame . . . recites the blessing, “Blessed are You, Lord our God, King of the universe, who is a righteous judge.” But if they were born that way [with the disability], one says, “who makes people different.”
—Maimonides, Mishneh Torah, Laws of Blessings, 10:12
I was at a family wedding, eagerly scanning for someone to talk to so I wouldn’t have to mingle when a woman approached me with a warm-hearted and welcoming smile. Her face was familiar, and she introduced herself with me a handshake that I remember to this day: eyes straight, warm, firm, and affectionate.
“Do you remember me? You knew me as . . . Paul.” It was like seeing someone from a distance and only slowly as they walk toward you do their features properly sharpen into focus. “Yes!” But then I found myself awkward and unsure of what to say next. It was her own familiarity with these conversations that rescued me. “It’s okay. My name is Kristen. I’m not the person you remember.” She was so kind and patient with me I could have wept in shame. As she spoke, I recuperated, got my bearings and found myself liking her enormously. She was immediate, funny, honest, and transparent. She specifically wanted to speak to me, it turned out, because she had heard that I “believe in God” and had “become religious.” So, we sat together.
He went through surgery (top and bottom) and gruelling pain, physiotherapy, and counselling. He went through this long and painful process and here she was at the other end of it. Kristen was happy, secure, in a relationship and spiritually hungry. I was in awe and bewildered.
“Can I ask you some personal questions?” She was open and ferociously transparent. (What exactly did they do to your body? Did it hurt? How does your body work now? How does it feel? How does the plumbing work? Who are you on the inside, sex and with whom, and what about masturbation?) Her openness took my breath away. She wanted to show me, but I demurred. She answered without hesitation or embarrassment. Her story was at once heartbreaking and redemptive. Physical pain that at the time was almost unbearable had become a memory of endurance, commitment, and perseverance. She was not going to give up. She said that she just wanted to be herself. Is she disordered or is she different? The commonness of our humanity was the place of recognition that we were not so different. Being in proximity to difference changes you.
It is important to state that I do not honour the difference I have with my friend in a way that evaporates into a kind of mushy relativism. There is another side, one that I can keep in tension: I believe that that we all must be oriented and ordered toward the God of Israel and his Messiah Jesus. I assert that the God of Israel is the living God and, ipso facto, all other gods are idols. But within our individual lives, God superintends, is active and guides us alongside and inside diversity. So, while no person is identical to another, we do not celebrate all human expressions simply because of difference. Rather difference is celebrated insofar as it is oriented to God. Jesus inhabits all that difference.
What does that mean for my friend Kristen and for Rafi, and where is the line to be drawn? Where do descriptions end, and proscriptions begin? My time spent in proximity to the difference has taught me to give more and more generous space: a wider berth. God judges justly. Kristen needs the God of Israel and so does Rafi and so do I. Kristen is broken sexually and so am I. Rafi, well, I do not know. I do not think Rafi knows what sex is. He talks about his penis, and he knows I have one. He knows that his mother and sisters don’t, but sexual organs are neutral to him. “Does God care what I do with my penis?” is not something that Rafi wonders about. I am skeptical of absolutes regarding difference. I know that some will disagree. I can only wish for those who disagree to spend as much time with difference as I do.
Kristen asked to hear my story: how had I came to believe in God and that Jesus was the Messiah of the Jewish people and the Savior. How was I still Jewish? We noticed that our stories were similar in a way—both provocative and controversial, at once paradoxical and dissonant. And joyful. Something significant happened and we both changed on the inside and outside. “What I really want to know is how to believe in God.” She asked me to pray for her and I did so, in the middle of a wedding reception, praying that she would know God and that he would comfort her and reveal himself to her. It was clear to me that my friend and I were not so different.
Difference
Proximity to people who are different from you—in disability, in worldview, in faith, in any of the myriad ways that humans are different—teaches you things you could not learn otherwise. Being in proximity to differences transforms our mental categories: how we see and think about the world and how we think, how we ask questions and how we reflect on stories.
When Jean Vanier went to live in community of the physically and intellectually different, he said that “it has been this life together that has helped me become more human.”1
This happened to me, and I am thankful.
This is about human differences and disability. We live in a world of human difference, and we must seek to understand that and embrace the uncertainty that comes with it. I want to reflect on how we might better cope with and ultimately be enriched by its ambiguity.
A word on terminology. We often use “disability” as a collective representation for difference. It is an implied social contract that implies that certain things are normal and certain things are not. This category is indeed useful for some people to gain access to services and have their needs met. But disability is only one aspect of human difference. In discussing these artificial constructs, John Swinton notes that “when we make these things up that very often, they become quite negative, quite pathological. So, disability for me is a way of naming difference, but not necessarily the best way of naming difference.”2 Sometimes I will use terms “disability” and “difference” interchangeably.
I would never imply that all aspects of human difference are forms of human disability. Nor would I accept that human difference which harms others can be justified. By “difference” I mean those states or attributes that interpersonally or socially divide and separate groups of persons from other persons. In many cases, the body reveals such difference, albeit in varying degrees and forms. While in American society eye color has little differentiating power, skin color has enormous differentiating power.3 The way we receive physical characteristics is both deeply unequal and culturally encoded in society,4 although in different ways across times and places, all human societies understand bodies as indicators of difference. Differences can be offensive.
How Does It Feel to be a Problem?
Rafi and I were at a dance night for people with special needs. I was sitting on a bench outside the dance floor next to a woman and her helper. When the helper got up to get a drink the woman took my hand and began signing on it. She was blind and deaf, but she sought out connection. She was talking to me, and I could not understand her. Later, when her helper returned, they talked. I was the outsider—it was I who was different. I was shut out.
Human difference, particularly when it presents in the body, is felt to demand a story, an explanation, on the part of those with “normal” bodies:
Just as disability is a difference with a difference (and in some ways more fundamental than differences in race, ethnicity, and genre), it stands in a unique relation to life narrative . . . [D]eviations from bodily norms often provoke a demand for explanatory narrative in everyday life. Whereas the unmarked case—the “normal” body—can pass without narration, the marked case—the scar, the limp, the missing limb or the obvious prosthesis—calls for a story. People presenting unexpectedly anomalous bodies are often called upon to account for them, sometimes explicitly: “What happened to you?” . . . One of the social burdens of disability, then, is that it exposes affected individuals to inspection, interrogation, and violation of privacy.5
But inside of us all there is no normal. There are predispositions, tendencies, and biases. The norm in fact is difference, and we choose what kinds of difference are acceptable. There are many ways to be normal and our ideas of it shape our personal and cultural thinking. “Difference” is not a neutral term—it is deeply theological and social and anthropological. It goes to the heart of what it means to human.
What is difference? When we think of human differences we tend to focus on the disabled. When it comes to human differences the disabled different are “perhaps the most fundamental; and in many places the least recognized, the least remembered, and the most life threatening”6 groups of people with a named difference. But disability is only one piece of the puzzle of difference. Swinton asserts that
disability is simply a cultural marker for difference. It is a consensus that we come to that certain thing are normal and certain things are not normal . . . If you had a society that was not particularly interested in intellect, it was more interested in community . . . then the category “intellectual disability” would be meaningless. So, although it is necessary perhaps for to access certain services and to help people to have their meet the needs met, it’s just something that people make up. And it’s when we make these things up that very often, they become quite negative . . . So, disability for me is a way of naming difference, but not necessarily the best way of naming difference.7
Swinton’s challenge is clear to me: Human difference is a construction based on a society’s priorities and interests. Yet I freely acknowledge that we often benefit from these very constructions, from the category “disabled” to take care of Rafi. Access to money, resources, and technology have been a blessing to us and have added to the quality of his life. When Rafi was a child, we received “parent relief ” income. When Rafi became an adult, he qualified for disability income. We submitted his doctor’s testimony and filled out an application that had a lot of boxes. The more boxes we checked, the more money we received. That is the way it works. Those classifications might be made up, but they also matter.
For those with differences that constrain, there are real needs to be addressed. The person receiving the benefit, however, is reduced to a “client” or a “patient,” which can easily become a kind of diminishment. (After all, a “patient” is one who endures, who is longsuffering.) You’re in a hospital for a procedure or test? You are asked to change into a gown, and you reenter the world lessened. You are exposed. You become a passive object and a recipient. A client needs something and is in a position of subordination in relation to the person or institution that has the authority to dispense it. The client is diminished. The charitable model sees disability as victimhood, a difference that is “tolerated.” Surely it is a good to use community resources to help and protect and defend. But after a person is helped and protected and defended, then what do they do? How are they included? How do they belong?
The model of “tolerance” towards difference is in fact often quite intolerant because “the tolerant” want to control and have the different behave according to standards established by the tolerant. In a 1790 letter to the Jewish community of Newport, Rhode Island, George Washington wrote: “It is now no more that toleration is spoken of, as if it was by the indulgence of one class of people that another enjoyed the exercise of their inherent natural rights.”8 Washington knew that people are different and that too often the normal are given the power and make decisions about the abnormal.
The Problem of Difference
We were in an ER one day and the doctor said, “Besides Down Syndrome what else is the problem?” I said that Rafi had a urinary infection. And that Down Syndrome is not a problem. I could tell he was embarrassed and reflective. I would like to think his outlook was shaken up a little. Down Syndrome is not something that is broken or wrong or needs to be fixed. It does not define Rafi. He is a human being trying to get by with the help of his family and friends, like most of us.
Being independent, “standing on your own two feet,” and not being a burden—are considered markers of adulthood in our modern Western society. I remember teaching Mary, Rafi’s new helper, how to go through Rafi’s bathroom routine. He needs help showering, shaving, and toileting. Rafi is a grown man: use your imagination. Her eyes got big. But for him it is normal and natural to be taken care of this way. I told her that she should not have any embarrassment: “Your job is to assist him. His job is to be assisted.” Most of us toilet, shave, shower and get dressed without help, routines that take as long as they take. Rafi follows his routines with help. They take as long as they take.
We insist that managing ourselves is an expression of our dignity, our sovereignty. As if having help is abnormal, some kind of flaw or a malfunction. “I can do it myself” is a milestone, a sign that a child is feeling a sense of mastery over his world. But for adults, “self-sufficiency” is embedded in notions of choice, liberty, and freedom for and from others. It is a discourse that is defective, one that presumes us to be entirely autonomous, independent beings and that giving or receiving help indicates either control or its absence. We don’t want to need help, but being helped fits the facts of human life as we know it: we were born needing help and we end life needing help. The thought of a child or an elderly person suffering without the help they need makes us sad. But needing help in the middle part of our lives too often also seems to us sad. Why does this case present us with a special problem?
Rafi cannot provide a good or service. He lacks financial, social, or labor capital. In a world where efficiency is king, where our social worth is so often based on what we invent, accomplish, or achieve, the disabled present a unique challenge. And as such, the disabled are uniquely able to question and challenge these social values. The power to legitimize and acknowledge Rafi cannot come from commodification or productivity indicators. It comes straight from his humanity, as it should for us all. Rafi has value because human beings have value, and this value does not differ according to people’s differences.
Rafi wants to belong. He wants to fit in, to be with people who treat him as normal and with respect. He can tell when someone is not comfortable. Yet most often Rafi does not belong. He is excluded as the world races by, as one unable to live according to the values of self-sufficiency, productivity, knowledge, and power. There are other values that must be agreed upon so we can discover his value, beauty, and uniqueness.
In this task, Jean Vanier offers us a vision we might follow: “We tend to reduce being human to acquiring knowledge, power, and social status. We have disregarded the heart, seeing it only as a symbol of weakness, the center of sentimentality and emotion, instead of as a powerhouse of love that can reorient us from our self-centeredness, revealing to us and to others the basic beauty of humanity, empowering us to grow.”9
- Vanier, Becoming Human, 6. In February 2023, a 900-page independent report commissioned by L’Arche concluded that Vanier sexually abused at least twenty-five adult women between 1950 and his death in 2019. I have been and continue to be nourished and inspired through Vanier’s writing and his example of a life dedicated to the disabled. In Jewish tradition we say these things when a person dies: may his memory be for blessing . . . blessed be the true Judge. It is up to us to remember it all. Vanier’s legacy, although tarnished, continues in the good work of this organization that is dedicated to the disabled and different. That memory is a blessing for good. ↩︎
- Swinton, “Breaking the Mold.” ↩︎
- This recognition is compounded when the context is changed to National Socialist Germany. There, eye colour had far more differentiating power. ↩︎
- One might also note a similar contrast in social reception of physical augmentation/enhancement. For example, some would interpret the act of receiving dental implants for degenerating teeth quite differently from breast augmentation. In this case, dental implants are far less likely to be perceived as “vain” or reflective of some negative personality characteristic. ↩︎
- Couser, “Disability as Diversity,” 105. ↩︎
- Couser, “Disability as Diversity,” 111. ↩︎
- Swinton, “Breaking the Mold.” ↩︎
- Founders Archives. ↩︎
- Vanier, Becoming Human, 55. ↩︎
Andrew Barron was an adjunct faculty at The Centre for Spirituality, Disability, and Care at Martin Luther University College, federated with Wilfrid Laurier University in Ontario, Canada. He has previously taught disability and theology at Wycliffe College at the University of Toronto where he graduated with his doctor of ministry degree in 2016. Barron lives in Toronto. He is married to Laura and is the father of Rafael, Ketzia, and Simona. Andrew can be contacted at drandrewbarron.com.