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| Alice Rumble, who says of her debilitating illness, 'You've taught me so much' (Photo source) |
The onset of her disability can be pinned to a fever she experienced when she was 18, which is 16 years ago. In that time, Rumble notes, she has gained what might be termed wisdom. From her new perspective, what had been a wall blocking all her plans has become a window on what is beautiful in herself and in others.
How Rumble's ordeal relates to Christian anthropology — the study of the characteristics of human nature employing Christian insights, will be explained, but, first, we travel with her along the road of the transformation in her mindset. She captures the material nature of the person as a body, but more than that. In a love letter (edited here), she takes a very absorbing approach to revealing the spiritual features of her experience:
Dear disabled body,
Thank you for carrying my heart and soul these past 16 years. You've pushed me to become a better, braver person and taught me some of the most important lessons of my life.
It took years for me to understand you and for a long time I was afraid of you. You brought suffering and uncertainty. You were an invisible force that I thought had come to take away who I was — my intellectual capacity, my work ethic, my physical stamina, my social life.
Fevers, chills and nausea descended. Food randomly wreaked havoc on my guts. My neck became taught with swollen, throbbing lymph nodes. Stabbing pain attacked my joints. Eventually, one of my legs started an involuntary Irish jig. I struggled to walk.
Doctors told me I wasn't going to be able to work or study again. I began to tell my loved ones, trying out the idea. They'd say, "Oh don't say that", as if I was speaking a curse into existence. They were scared too.
I began to wonder whether I was trying hard enough to "fix" you. The dreaded phrase, "Have you tried..." echoed in my head. I'm sorry I starved you in a quest to find the answer in food. The carnivore diet was a low point. I'm sorry I made you eat beef mince for breakfast. The diarrhoea was a fair response.
Sometimes Rumble forced regimes of exercise on her body, or acted against what her body was telling her on the advice of medical people who were financially exploiting her vulnerable state. Despite these, her human spirit did not give up and the tally of positives mounted:
Thank you, though, for introducing me to the heroes in the health profession. The ones who don't give up or blame me when their recommendations don't work. The ones who listen, believe and advocate. They work tirelessly to care for us in a health system designed to fix problems, rather than support disabled people.
You've taught me so much. We've learned how to cook, meditate, knit, garden, navigate bureaucratic systems and care for sick or sad loved ones. You've taught me a kind of empathy that comes from being an "other" — someone who lives in a world not designed for them. I'm so grateful you've helped me meet so many hilarious, creative, supportive and generous disabled people.
Although we've had to grieve my past self and career plans, you've freed me from the weight of my own expectations about who and what I should be. You've helped me become braver than I ever imagined. I've faced down institutional discrimination while fighting for the disability supports I desperately need. These battles have taught me more about advocacy than law school ever did.
You've also brought out the best in the people around me. My partner, family, friends and former colleagues have loved and supported me through the upheaval, grief, uncertainty and wild diets.
Now I've come to accept and appreciate you, I've found the right name to introduce you by. A name that provokes puzzled expressions and sympathetic eyes: Myalgic encephalomyelitis. "It's a brain disease," I explain, and people believe me.
Maybe it was never about your name. Maybe the world around me accepts us because I finally do. Instead of tentatively suggesting, "They think I might have chronic fatigue syndrome", I now proudly say, "I'm disabled."
And that is a beautiful thing.
Yours,
Alice
Readers will shudder at Alice Rumble's words! How can this young woman be proud because disabled? How can she regard her gruelling experience as "beautiful"?
The answers erupt from what we can know about the human person using our general experience as well as from Christian insight. "Dear disabled body, Thank you for carrying my heart and soul..." and for teaching "some of the most important lessons of my life".
We see clearly from the vantage point of our human nature, that our "heart and soul", the spiritual element of each person, is the "controlling dynamism animating the body". As marvellous as the body is in all its complexity, we see from Rumble's experience that we have the capacity to rise above whatever the body throws at us. Of course, this principle has to be tempered by an acknowledgement that the brain can be affected by external influences, extreme circumstances, or toxic substances that impel a person to do what is irrational.
But body and soul are a unity in each person. This is expressed this way: The human being can be recognised as either an "embodied soul", or as an “ensouled body". "The essential unity of body and soul constitutes the person in this world of matter, time and space," says Peter Elliott here. Therefore, Rumble is not defined by her disability, by the state of her body.
The capacity of the soul, which endows the human with intellect, will and conscience, is the focal point of the human dignity Christians seem increasingly to have to fight for on behalf of the vulnerable in this philosophically shallow era. Elliott makes the same point:
When asked what is the real difference between a Christian anthropology and an atheist or agnostic understanding of the person, a Christian would probably point to belief in the soul. Returning to the Genesis principle of the person created in the image of God, we see this ‘imaging’ above all in the divine life, the ruah, or breath God breathed into the man, Adam (Genesis 2: 7)*. This is the basic scriptural understanding of ‘soul’. Only the human being has received the divine breath.
The body and soul form a unified person, but each has distinct functions.
The intellect and will make us radically different to animals, who follow instinct. We also possess a unique capacity to reflect. Reflection indicates not only higher intelligence, but the abiding reality of the soul. I can think about my thoughts. I can be aware of myself as a person. I can be aware of other persons. In my intellect I can evaluate my decisions. I can regret past actions and determine new courses of action. A higher animal can learn to evaluate past actions, avoiding situations etc., but only through trial and error and a limited memory. Yet even the highest primates have no capacity to reflect on themselves or to do what this essay attempts, to reflect on personhood. The ape is not a philosopher.
However, clearly Rumble has gone deep, she has plumbed the capacities of the human person, appreciating the fact that as well as the material, there are abstract realities which enrich our existence. She identifies bravery, beauty, the ability to be a better person, the love shown her, all of which overpower the evil exhibited in money-making medical practitioners. Of the abstract sphere of the human world, Elliott adds some detail:
Our intellect recognizes that truth, goodness and beauty are of great value. True or false, right or wrong, good or bad, are categories of concern to most people (**). Our innate seeking after truth perhaps takes its highest form in the moral quest, when we seek ‘the good’, and wish to avoid evil, or at least when we know that we should be making moral choices. This moral sense or capacity is natural to being a person, hence described as the Natural Law. Human persons are moral beings. To be a person is not only to be interested in moral questions, but to be able to make moral decisions. The capacity to choose is free will. (***) The capacity to evaluate and make moral judgements that guide these choices is the human conscience.
Yet [...] we are imperfect, with a tendency to do what is wrong. This means that we are involved in a constant moral struggle. With St Paul we can say that while we know the good we should do, we often choose what we know we ought not to do (Romans 7: 14-25)****. Christian anthropology remains incomplete until it includes this reality of sin and guilt in our lives. The human person should never be idealised, less so when we still live in the shadow of events that cut the last century in two: genocide, wars, tyrannies, revolutions, slaughter unprecedented in all history.
Nevertheless, the Catholic understanding of the human person remains optimistic. Contrary to what some journalists claim, Catholics do not hold to a pessimistic doctrine of human nature. We do not believe in the ‘total depravity’ or innate corruption of the person, linked to a doctrine of human helplessness or the ‘bondage of the will’. This is the belief of Martin Luther, John Calvin, fundamentalist Christians and some pessimistic modern philosophers. Catholics believe that free will has not been destroyed and corrupted by original sin. A human being still has the capacity to live as the image of the loving Creator. The inherited effects of original sin have certainly weakened human nature and we all need divine grace, but we still retain innate dignity, moral worth and freedom to choose.
The quest for beauty, or striving to make something beautiful, is far more than a pleasure-pain reflex. I may like a certain food because the taste gives me pleasure. I like some music because it makes me relax. I take pride in what I make with my own hands. But there is also something higher at work here, a capacity to seek the Beautiful, a tendency or desire to reach out to the divine, whether in art, literature or music or by appreciating the natural beauty of the created world and universe around us.
The human being’s quest for order, design or symmetry, whether in building a house or planning a garden, also goes far beyond the instinctive repetition of design seen in some insects (such as bees) or animals. We have a sense of participating in a greater Design. We sense a partnership with the ultimate Planner, that we share in the work of creation. This was the mandate given to us in the second Genesis creation account. This reaches a particularly high point when humans understand that their capacity to transmit human life through child bearing is not "reproduction" but "procreation", the mandate given in the first Genesis creation account (Genesis 1:28) *****. Our imaging of God is to be responsible co-creators on this planet.
It is clear from Rumble's account that she is a free creative agent, driven to make the most of her talents, despite the difficulties. She expresses a great sense of personal identity, and on that foundation can reach out to others to seek support and to help other disabled people. It is very obvious Rumble is more than a disabled body.
One last point is that of the respect that must be given to each person for the very reason that we have an innate dignity arising from our human capacities, which reflect the nature of God. This quest for respect is an ongoing battle. Elliott describes the situation this way:
The Marxist vision of ‘economic man’ has collapsed, or been transformed into another false anthropology – the person as a consumer in a globalized free market. [...] A selfish individualism emerges, an individualism that tramples on the rights of others and exults in the survival of the fittest and richest. This secularist individualism would reshape the person through genetic engineering and killing the weak and unfit.
In the face of this challenge, the Catholic understanding of the human person is not individualistic, rather, the person is seen as essentially a social being, created to live with and for others, created for self-giving love. The Gospel of Christ, the virtues, beatitudes and commandments, shape persons who are called to find true fulfilment in self-giving love, in the service of others, first in the family and then in the wider society. In community, Christians are always called to respect the common good.
At the same time, Catholic insistence on the immortal nature and destiny of each human person includes a struggle for his or her rights and duties in society, for justice. This struggle for the ‘truth of the person’ sets the Church on a collision course with the aggressive individualism that dominates much of modern culture, expressed in ideologies based on self-liberation or the absolute right to do as one wishes.
Alice Rumble has won through to achieve an understanding of her life's meaning and purpose. We can join together to wish her further growth as a person and we can pray for the healing of her body. From her account we can see why some people, having experienced mental or physical trauma, exclaim : "It was the best thing that could've happened to me!" Such a view is comprehensible only in light of Christian anthropology, explicitly recognised or flowing from the innate character of the human person.
* Genesis 2:7 — "The Lord God formed the man from the dust of the ground and breathed into his nostrils the breath of life, and the man became a living being."
** Gaudium et Spes, 15
*** Gaudium et Spes, 17
**** Romans 7:14-25
***** Genesis 1:28
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