M Vuk
M Vuk
M Vuk
IMPEDIMENTS OR POSSIBILITIES?
A Hypothesis from the scope of social
Christian ethics
Martina Vuk UDK 27–428:172
172–056.26
172–056.34
Introduction
The visible condition of a person in bodily pain or of a person who has lost
autonomy, social status or self–representation, reveals to some degree an in-
visible reality which is present in every human being. In other words, in the
encounter with a marginal, dependent, sick or disabled person, moral judge-
ments based on the idea of independence and autonomy are often revealed
to be illusions, challenged by the idea of dependent, deeply vulnerable and
limited creatures.1
Assuming the validity of this premise, my primary purpose in the fol-
lowing paper is first to reflect upon social and cultural attitudes that con-
sider disability and vulnerability as a boundary and a threat; and secondly,
to propose an alternative in transgressing the differences of socio — anthro-
pological boundaries in order to enable dynamic communication with fel-
low human beings, and ultimately, to bring about true human flourishing.
In the first part of this paper I will reflect upon the meaning of disability,
as well as, the impact that the presence of those living with disability has
on individuals and society at large. In such perspective, particular emphasis
laid upon the physical condition of those living with disability. In the sec-
ond part, my focus will be on the meaning of vulnerability associated with,
but distinct from the notion of disability. Thirdly, I will elucidate my argu-
ment with concrete examples from the L´Arche community — where people
with and without disabilities are living together in mutual interdependency
and cooperation.
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Martina Vuk: Disability and vulnerability DISPUTATIO PHILOSOPHICA
1. What is disability?
Definitions of disability2 depend on whether disability is approached from
the realm of biomedical or social sciences. Numerous definitions of disabil-
ity have been proposed in an academic framework within the last fifty years
stemming from medical through to a social definition. According to a recent
World Health Organization (WHO) definition — also used in our European
context — disability is considered an umbrella term that covers impair-
ments, activity limitations, and participation restrictions.3 Disability is thus
not just a health problem, it is a complex phenomenon reflecting the interac-
tion between features of a person’s body and features of the society in which
he or she lives. Overcoming the difficulties faced by people with disability,
requires interventions to remove environmental and social barriers. When
approaching disability discourses from the scope of Disability studies,4 two
dominant models5 are discussed: the biomedical and social model. Those
two models have been largely influential in framing the definition of dis-
ability, as presented above. The biomedical model, on the one hand, looks
at disability as a physical condition and individual tragedy that needs to be
fixed or cured by medical intervention. The social model, on the other hand,
emerged as a reaction to the biomedical model in the early 1970s. Its primar-
ily focus is on “fixing” societal attitudes towards disabled people, instead
2 In this paper, my reflection does not include a particular type of disability, such as se-
vere, developmental or intellectual. I will use them interchangebly. My emphasis is to
illuminate an interdisciplinary conceptual and cultural comprehension of disability un-
derstood within the context of mainstrem society. For a more robust comprehension and
classification of disability see: World Health Organisation, World Report on Disability, (Ge-
neva: World Health Organisation, 2011), available from http: // www.who.int / disabilities/
world_report/2011 /report.pdf ; World Health Organisation, International Classification of
Functioning, Disability and Health (ICF), (Geneva: World Health Organisation, 2001), avail-
able from http://www.who.int/classifications/icf/en/; See also “Definition on Developmen-
tal and Intellectual Disability,” American Association on Intellectual and Developmental
Disability (AAIDD), available from http://aaidd.org/home
3 See “Disabilities,” World Health Organisation, accessed April 2017, available from http: //
www.who.int/ topics/disabilities/en/
4 According to one of its proponents and as a person with direct experience of impairment,
Simi Linton defines Disability studies as the socio–political–cultural model of disability
incarnate. It provides an epistemology of inclusion and integration, formulating ideas that
could not have been imagined from the restrictive thresholds of the traditional cannon.
See Simi Linton, “Disability Studies/Not Disability Studies,” Disability&Society, Vol. 13,
no.4.,1998.
5 Alongside two dominant models of disability, there are few other approaches to disability
such as: radical model (Whithers, 2012); human rights model, (UN, 2006); or few versions
of social model such as British Social Model, (Campbell&Oliver,1998; Barnes&Mercer,
2010); the North American minority approach (Scotch, 1984); the Nordic relational model
(Tøssebro 2002, 2004); postmodernist disability approach (Corker&Shakespeare, 2002),
etc.
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DISPUTATIO PHILOSOPHICA Martina Vuk: Disability and vulnerability
On the cultural level, with a great effort of social activism there has been
unprecedented receptivity towards disability in the modern period. Thanks
to the social model definition of disability, which has a broader applica-
tion within social policies for the disabled, persons have generally become
less isolated by being further included in broader society. With the progress
of modern medicine many people with disabilities, especially those with
Down Syndrome, will experience, as never before, so many benefits with a
modern way of practicing medicine.6 However, the persistent problem with
a western liberal society regarding disability is that people with disability
are reduced to the acquisition of rights and freedoms. Although people with
disability nowadays can experience inclusion, they do not necessarily feel
that they belong or are desired as potential friends, companions or employ-
ees. To truly belong one needs to be missed. As theologian John Swinton
wrote: “belonging goes deeper than inclusion, since to belong one needs
6 For instance, in an American study on disability the findings of Henry J. Kaiser Family
Foundation in 2003 and 2004 have shown that a majority (82%) people with disability
surveyed in a report, think they have better lives today than they had some years ago.
However, almost 40% believed that the health care system treats persons with physical
disability unfairly. See “Americans’ Views of Disability. A Kaiser Health Poll Report 2004.”
Henry J. Kaiser Family Foundation, accessed Mai 2015, available from https://www.kff.org
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Martina Vuk: Disability and vulnerability DISPUTATIO PHILOSOPHICA
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DISPUTATIO PHILOSOPHICA Martina Vuk: Disability and vulnerability
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Martina Vuk: Disability and vulnerability DISPUTATIO PHILOSOPHICA
This has been evident in many international documents including the Unit-
ed Nations Universal Declaration on Bioethics and Human Rights (art. 8);10
the Document on Biomedical Research Involving Human Subjects (CIOMS,
2010);11 and the most recent one, the Report of the International Bioethics
Committee of UNESCO on the Principle of Respect for Human Vulnerability
and Personal Integrity (IBC, 2013).12
What about other people? Does vulnerability as a condition also include
“the category of normal” or people without disability?
Disability does indeed imply personal vulnerability, as people with dis-
ability (with profound or severe disabilities, respectively) do need more at-
tention, affection, understanding and love. However, people with disability
cannot be identified or reduced to the meaning of vulnerability as one group
of vulnerable individuals, neither can the mainstream population be de-
prived of the experience of vulnerability. As humans we all are vulnerable,
but at the same time we all are autonomous. The real question is what does
autonomy precisely mean and why within the modern moral discourse has
it been the dominant idea regarding the meaning of being human? The em-
phasis upon autonomy understood as the capacity of being a self–dependent
or rationally powerful creature obscures the recognition of vulnerability as
being equally important and constitutive for the realization of human. Vul-
nerability became a mark of women and children, as well as, the marginal,
weak, sick and disabled individuals. Until recently, the meaning of vulner-
ability was emphasized as a mark of those individuals who are particularly
affected by greater bodily vulnerabilities such as people with intellectual
disabilities and mental disorders, people with Alzheimer disease or any
other individuals whose cognitive abilities are diminished. For this reason,
I suggest we take a look at the semantics of the term vulnerability and sec-
ondly, on its application within the field of academia.
In the contemporary discourse the meaning of vulnerability is often re-
placed with the meaning of fragility, weakness and suffering. Although the
distinction between the three meanings is subtle, there is an obvious con-
ceptual difference between the abovementioned terms. Vulnerability is not
merely the capacity to be wounded, weak and fragile as most relevant dic-
10 See United Nations, Respect for Human Vulnerability and Personal Integrity, (Paris, UN-
ESCO, 2005), Article 8., accessed February, 2014, available from http://portal.unesco.org/
en/ev.php URL_ID = 31058&URL DO_TOPIC&URL_SECTION=201.html
11 See CIOMS, International Ethical Guidelines for Biomedical Research Involving Human
Subjects, (Geneva, WHO, 2010), assessed March,2014, available from http: //www.recerca.
uab.es/ceeah /docs/CIOMS.pdf., assessed March,2014.
12 United Nations, Report of the International Bioethics Committee (IBC) of Unesco on
the Principle of Respect for Human Vulnerability and Personal Integrity, (Paris, UN-
ESCO, 2013), accessed August, 2017, available from http://unesdoc.unesco.org/
images/0018/001895/189591e.pdf.
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DISPUTATIO PHILOSOPHICA Martina Vuk: Disability and vulnerability
tionaries will describe it. Neither is it a tragic condition of illness and suffer-
ing, which has been reflected within various contemporary discourses. Yet,
it is a complex and controversial term which require proper clarification.
Besides acknowledging vulnerability as the capacity to be wounded, The
Dictionnaire Encyclopédique D´Ethique Chretienne13 defines vulnerability
as a form or mode of human existence embedded in vitality, sensitivity and
sociability. The present dictionary also acknowledges vulnerability as a phe-
nomenon that manifests itself through sad emotions (anxieties, despair and
dislike) in periods of insecurity, violence, or death. In her book La vulnéra-
bilité une nouvelle catégorie morale?14 Swiss philosopher Nathalie Maillard
addresses vulnerability as a term relevant to living beings as their ontologi-
cal category which by nature of things per se, constitutes an essential part of
their existence. It is important to emphasize that according to Maillard defi-
nition, although all living beings are substantially vulnerable, not all have
the same intensity of vulnerability. There are people who are more vulner-
able (for instance people with disability) and people who react differently
on vulnerability. This means that we cannot make a categorical distinction
between vulnerable and non–vulnerable individuals, but between more or
less vulnerable people.
The second issue I would like to emphasize regarding vulnerability is
its implications and understanding within academic disciplines. Within the
scope of academia, the most recent ethical, philosophical and theological
discourses have shown that vulnerability can be approached from various
perspectives and dimensions. The medical approach seemingly locates the
notion of vulnerability within the notion of disease — corporeal and bio-
logical susceptibility. In bioethical discourses, priority has been given to the
discussion regarding the relation between the concerns of autonomy and
vulnerability15 and as a reaction to medical and technological power and
control.
In the context of social philosophy, the notion is that vulnerability im-
plies social, environmental, political and economic individual disadvan-
tages, such as malnutrition, migration, poverty, abuse, etc. The philosophi-
cal and theological literature distinguishes vulnerability as an ontological
condition, anthropologically conceptualized within the context of life ex-
perience, and discussed as a mutual human and a human — Divine inter-
13 Laurent, L., Gaziaux E., Müller D., “Vulnérabilite.” Dictionnaire Encyclopédique D´Ethique
Chretienne. Paris: Les Editions du Cerf, 2013.
14 Nathalie Maillard, La vulnérabilité une nouvelle catégorie morale? (Genève: Labor et Fides,
2011), p. 161– 228.
15 See Barry Hoffmaster, “What does vulnerability mean?,” Hasting Center Report, 36, no.
2, (2006); Michael H.Kottow. “The vulnerable and the Susceptible,” Bioethics, 17 no.5
(2003).
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Martina Vuk: Disability and vulnerability DISPUTATIO PHILOSOPHICA
16 Martina Vuk, “Vulnerability and Disability: Ethical and Theological Evaluation“, Unpub-
lished Research Master Thesis, KU Leuven, 2014.
17 See Miroslav Volf, Exclusion and Embrace:A Theological Exploration of Identity, Otherness
and Reconciliation, (Nashville, Abingdon Press,1996), p. 99–166.
18 Thierry Collaud. “La vulnérabilité nécessaire au bien commun,” (paper presented at Col-
loque International Personne vulnérable et société de performance, Institut Interdiscipli-
naire d’Ethique et des Droits de l’Homme, Université de Fribourg, Fribourg, Switzerland,
April 2 2014).
19 Thomas Reynolds, Vulnerable Communion: A Theology of Disability and Hospitality, (Grand
Rapids, MI: Brazos, 2008).
20 Reynolds, Vulnerable Communion, p.78–80.
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DISPUTATIO PHILOSOPHICA Martina Vuk: Disability and vulnerability
premise that not only vulnerability and autonomy need better interrelation,
but as MacIntyre suggested, for an adequately balanced approach to the per-
son, the strict separation between the two concepts, reveals the insufficient
understanding of interdependency in the modern evaluation of the meaning
of human person. As he puts it:
“Modern moral philosophy has understandably and rightly placed great em-
phasis upon individual autonomy, upon the capacity for making independent
choices. Virtues of independent rational agency need for their adequate exercise
to be accompanied by what I shall call the virtues of acknowledged dependence
and that a failure to understand this is apt to obscure some features of rational
agency.”21
21 Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues
(London: Gerald Duckworth & Co.Ltd., 1999), p. 8.
22 In order to protect participant privacy, the given names are changed.
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Martina Vuk: Disability and vulnerability DISPUTATIO PHILOSOPHICA
In his answer, Brent points to a few key issues regarding the complex-
ity of the ideas associated with the notion of vulnerability. First, Brent was
a friend with a person with disability — a person whose vulnerability is
(as we could assume) greater that Brent’s. Second, the vulnerability of that
person could possibly challenge Brent and expose his vulnerability. Third,
approaching his condition as mature and responsible person, he uses terms
such as vulnerability, weakness, and imperfection. And fourth, addressing
the vulnerability and weakness as parts of his human condition and part
of his friendship relationship does not stop him from flourishing (“to be
happy”).
As a Christian counterculture — founded by the 2015 Templeton Prize
winner, Jean Vanier — L´Arche is a global network of communities of people
with and without disability that has been a witness of a way of “transcend-
ing the barriers” between different people who live together as friends and
companions for more than fifty years. Grounded in Christian principles,
but explicitly multicultural and interfaith in operation, L´Arche attempts
to demonstrate the possibility of living by alternative values. Among other
aspects, L´Arche offers an alternative way of seeing the truth of disability. It
is not disability as the condition per se, but the encounter with a person with
disability that counts as central and authentic. Such an encounter changes
how one regards the personhood and moral agency of those living with dis-
ability. The relationships within the context of L´Arche are relationships
that are marked by disparity in mental capacity, in the capacity to perform
certain activities, and by different social status, cultures and religions. Yet,
these relationships flourish. Such relationships portray diversity as an es-
sential element of transformative friendships. Moreover, the relationships
in L´Arche are characterized by a particular way of belonging that implies
interdependency, the main features of which are a narrative of vulnerability
and individual uniqueness. The outcome of this interdependent relation-
ship is transformation of a person’s perception of and relation to the other,
openness towards the other and mutual acceptance of one´s own personal
limits not as something tragic but as a way to transcend one´s own self–suf-
ficiency. Such communication and relationship has been proof demanding
for mainstream society; however, it remains an opportunity to reconsider
and transcend differences.
23 First name, Last name of interviewee (Exploring Friendship Relationship between People
with and without Disabilities in context of L´Arche), interviewed by Martina Vuk, Man-
chester, England, November, 2015,transcript Martina Vuk, Université de Fribourg, Switzer-
land.
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DISPUTATIO PHILOSOPHICA Martina Vuk: Disability and vulnerability
Conclusion
as a point of conclusion, the encounter with the person who is fragile or dif-
ferent in terms of mental capacity, social status, culture and religion — such
as, for instance, persons with disability, with Alzheimer’s, with dementia, or
who are homeless and strangers — could be the mediator of an achievement
of true freedom and an opening towards a true knowledge of one — self and
the other. The visible vulnerability of those ostensibly more vulnerable, re-
veals the invisible and hidden vulnerability of every human being and has a
potential to release one — self from the captivation of false prejudices, fears
and self–sufficiency.
I assume that the fundamental challenge in overcoming the fear of differ-
ence does not lie in other persons, a political system, a Church or a culture,
but rather in insisting on the individuals´ invulnerability, false self — image
and self–sufficiency, that places barriers in the way of human communica-
tion and communion. In this regard, an anthropology founded upon recogni-
tion of vulnerability can confront cultural inconsistencies and reveal to the
Church and society the possibilities for appreciating the dynamic diversity
of the human condition. Thus, taking this positive approach, the concepts of
disability, and relatedly human vulnerability, are not only to be understood
as an exposure to suffering but also as the surrender of oneself in trust to the
other and to the world.To transgress boundaries of difference that disability
as a visible condition of some places in front of us, requires acceptance of
our vulnerable human condition not as something tragic, but as a strength
and possibility that lead us towards the other. In such exchange, the other
is perceived both as a gift and a creature with the capacity to be limited and
vulnerable, but simultaneously unique and autonomous in trust and dignity.
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Martina Vuk: Disability and vulnerability DISPUTATIO PHILOSOPHICA
Abstract
DISABILITY AND VULNERABILITY — IMPEDIMENTS OR
POSSIBILITIES?
A Hypothesis from the scope of social Christian ethics
The visible condition of a person in bodily pain or of a person who has lost au-
tonomy, social status or self–representation, reveals to some degree an invisible
reality which is present in every human being. Assuming the validity of this
premise, my primary purpose in the following paper is first to reflect upon social
and cultural attitudes that consider disability and vulnerability as a boundary
and a threat; and secondly, to propose an alternative in transgressing the differ-
ences of socio — anthropological boundaries in order to enable dynamic com-
munication with fellow human beings, and ultimately, to bring about the true
human flourishing. The structure of my argument is threefold. In a first part
my focus is stressed upon concerns of those living with a physical condition
of disability and a mainstream socio–cultural attitudes towards it. In the sec-
ond part, my attention will be on the meaning of vulnerability associated with,
but distinct from the notion of disability. Thirdly, I will elucidate my argument
with concrete examples from the L´Arche community — where people with and
without disabilities are living together in mutual interdependency and coopera-
tion.
74