Leprosy mailing list – May 12th, 2006
Ccn: all.
Ref.: ICF terminology and POD in
leprosy
From:
van Brakel W., Amsterdam, the Netherlands
Dear
Salvatore,
I would like
to respond to a few of the terminology issues raised by Doug Soutar
and Drs. Ganapati and Pai. To
start with the contribution of the latter in LML May 10th, 2006. The definition of 'disability'
quoted from my thesis is no longer current. I would like to make a case
for adapting our terminology to that used in the general field of
disability and rehabilitation.
The conceptual
framework and terminology now accepted and used widely is based on the
International Classification of Functioning, Disability and Health (ICF,
WHO, 2001; <www3.who.int/icf>).
In the ICF, "lack of ability to perform an activity"
is now called 'activity limitation'.
The ICF uses the term 'disability' as an umbrella term for all
types of disablement, i.e. impairments (physical), activity
limitations (activities of daily living - ADL) and participation
restrictions (social). This is very convenient in the field of
leprosy, since people affected by leprosy face all three areas of
problems and the distinction between, e.g. a particular impairment
(e.g. muscle weakness) and the resulting activity limitation
(difficulty grasping), or between an activity limitation (e.g.
difficulty walking) and participation restriction (restricted
mobility), is not always very clear.
In the context
of the ICF terminology, 'deformity' would simply be a 'visible
impairment'. Perhaps this
would be the preferred term, when otherwise the term 'deformity'
would need to be used. I
like the quotation supplied by Doug Soutar and fully endorse its
positive intention. However,
it is important to realise also that, when it comes to the
stigmatising nature of our language, the crucial question is not the
terminology used in English, but the words used in the local language
of the country or area where disability work is carried out. We need
to search for (and, if necessary, invent) terms that can be used for
the various types of disability and that are non-stigmatising. The terms used should portray
a positive image of (the person with) disability, regardless of the
cause of the disability, and should reflect dignity and respect. This is easier said than done,
since colloquial language often uses unpleasant terms in relation to
disability, but will be well worth the effort! Use of terms based on or
related to the ICF terminology will ensure clear communication between
related fields of work and science, which will help the integration of
leprosy-related rehab and POD into general rehab and CBR.
With best
wishes,
Wim van Brakel
