Journal of Rehabilitation Medicine 51-2 | Page 72

J Rehabil Med 2019; 51: 147–148
COMMENTARY
EUROPEAN ACADEMY OF REHABILITATION MEDICINE: COMMENTARY ON
“TWO PERSPECTIVES ON THE SOCIAL RESPONSE TO DISABILITY”
The European Academy of Rehabilitation Medicine
(EARM) meeting, held during the 21 st European So-
ciety of Physical and Rehabilitation Medicine (ES-
PRM) congress in Vilnius, Lithuania, on 1–6 May
2018, included a debate in the session “Rehabilitation
for all”, based on the paper “Two perspectives on the
social response to disability” (1). The commentaries
presented offered many insights, not only into the
nature of disability, but also into the social role of the
rehabilitation professional.
The original paper argued that, within the context of
rehabilitation as a social response to the needs of per-
sons with disabilities, the notion of “disability” points
to two different concepts. On the one hand, disability
is understood as a mark of a minority group that has
historically been socially disadvantaged and, more
recently, has been organized into a political movement
seeking full inclusion and human rights. On the other
hand, disability is seen as the result of the impact of
health conditions and impairments on people’s lives,
in interaction with their physical and social world.
According to this second view, far from being a mark
of a minority group, disability is a universal human
phenomenon. The paper concluded that rehabilita-
tion and rehabilitation professionals may be uniquely
positioned to reconcile these apparently conflicting
perspectives of disability.
During the session, Angela McNamara and Brigitte
Perrouin-Verbe provided commentaries on the paper
that illuminated their unique perspectives, and sought
not only to expand and enhance the apparent dilemma
of “two disabilities”, but to ground the discussion in
personal experience. Both emphasized the fact that
leadership in physical and rehabilitation medicine is a
key factor in patient recovery and outcome, as well as
a determinant of disability as it is actually experienced.
In addition, both speakers were keenly aware of the
importance of viewing experiences, such as quadriple-
gia, not only holistically, but also “from the inside”.
Angela McNamara (2), as both a rehabilitation medi-
cine specialist and a patient, described her experience
with acute-phase quadriplegia due to Guillain-Barre
syndrome. Her commentary outlined her treatment in
the intensive care unit (ICU), in acute rehabilitation in
the Mater University & National Rehabilitation Hospi-
tals, and through to multidisciplinary rehabilitation in
the spinal injury rehabilitation hospital, where she was
the consultant-in-charge before her illness. In the ICU,
while unable to communicate, she was aware of the
medical risks and observed the absence of rehabilita-
tion medicine team leadership. Physiotherapy in ICU,
she observed, focused mainly on respiratory function
with demonstrated little interest in complications due
to immobility. This experience highlighted for her a
lack of insight into the disease and the patient’s needs
in the acute early stage of recovery and led her to see
the need for holistic multidisciplinary treatment, led by
a physician in rehabilitation medicine, from the acute
illness through to the community.
Like all health professionals, there is a strong and
understandable tendency among rehabilitation pro-
fessionals to want the patient to “dance to our tune”.
However, this must be resisted if catch-phrases, such
as “shared decision-making”, “continuity of care” and
“patient-centred treatment” are to become realities and
not empty slogans. Rehabilitation professionals need
to appreciate the process that patients go through for
them to come to terms with their own disabilities.
In her commentary, Brigitte Perrouin-Verbe, as both
rehabilitation professional and a person who has lived
with a spinal cord injury (SCI) for 4 decades, could
directly address the dilemma of “two disabilities”. She
made the point that, especially for SCI, the impact of
rehabilitation on the experience of disability can be
profound. We know that rehabilitation in SCI decreases
the risk of mortality during the acute phases and de-
creases the incidence of SCI-related complications and
optimizes functioning, leading to better inclusion and
participation in the community. In this sense, rehabi-
litation is committed to the broader understanding of
disability as a universal human issue that requires a
sustained social commitment. In recent years, primarily
as a response to economic problems, the benefits of
rehabilitation are increasingly being threatened, which
should raise an alarm.
Yet, underscoring the need to view disability “from
the inside”, Perrouin-Verbe also warned against the
“banalization of rehabilitation”, the tendency to focus
on optimizing a person’s functioning and independence
while downplaying the reality of the often negative
impact that social conditions have on life with disabi-
lities. Living with SCI, being independent in activities
of daily living, carrying out a full-time job, while at
the same time coping with a non-adapted and unac-
commodating environment, are exhausting and lead
to medical complications, psychological problems or
both. The realities of living with SCI, in other words,
resonate with the other sense of disability as a form
of social disadvantage, a problem that impacts more
directly on the lives of a minority of people.
In the end, both McNamara and Perrouin-Verbe re-
minded the audience that it is important always to think
This is an open access article under the CC BY-NC license. www.medicaljournals.se/jrm
Journal Compilation © 2019 Foundation of Rehabilitation Information. ISSN 1650-1977
doi: 10.2340/16501977-2515