Presentation at the 2nd International Symposium: ICF Education. 30 June 2017 (Cape Town). http://www.icfeducation.org

1. Environmental facilitators galore!
Building communication strategies
for children with severe disabilities
on cultural resources
by
Martha Geiger, Sinegugu Duma, Theresa Lorenzo
UNIVERSITY OF
CAPE TOWN

2. Background
 children with severe disabilities are often the most
neglected in terms of planning and providing
appropriate interventions.
 for those with severe communication disabilities,
an additional lack is in the area of the basic human
right to meaningful interactions and communication.
 sustainable strategies to provide opportunities for
basic communicative participation of these
children are urgently sought.

3. Prologue to
this study:
Geiger, M. 2010. Using
cultural resources to build
an inclusive environment
for children with severe
communication
disabilities: a case study
from Botswana.
Children's Geographies,
8: 1, 51 — 63.
http://dx.doi.org/10.1080/
14733281003651016

4. Aims of the participatory study
 to identify culturally determined non-verbal and pragmatic
elements of social interaction in an isiXhosa language
context.
 to explore culturally appreciative strategies to support the
communicative participation of children with severe
disabilities in this context.

5. Method
 An action research journey:
 iterative cycles of collaborative action, reflection and
subsequent further planning…
 Participants:
 44 mothers of children with severe cerebral palsy from an
under-resourced peri-urban isiXhosa speaking context in
the Western Cape.
 Data collection:
 action reflection group sessions, reflective dialogues and
participant observations.
 Data analysis:
 in-group collaborative analysis and
thematic content analysis.

6. 3-phased Freirian Approach
Session guide:
KEY QUESTION
1 Naming Phase What do YOU think is the problem?
2 Reflection Phase Why do YOU think this is a problem?
3 Action Phase How can WE change this?

7. Findings
 12 practical action learning outcomes (ALOs 1-10
presented here)
 Two main themes were identified, directly responding
to the two main aims of the study
 Three theses/propositions

8. ALO 1:
Recognising communication without speech
 ‘different cries…for hunger…for pain…for
wanting attention…’ - recognising
communication without speech
 PS: A universal confusion:
 speech vs language vs communication 

9. ALO 2: Remembering and reinforcing
earliest non-verbal interactions
 ‘…I look at his face
expecting the ‘sorry’
look – and if it isn’t there
I will clap again’
 remembering and
reinforcing eye contact
and facial expressions
used in earliest
interchanges

10. ALO 3: The smile: the most universal
communication of all
 ‘…and all of them do
it…even mine’

11. ALO 4: Repetition and rhythm
 The Father Christmas
chants ‘Hêpi-hêpi-i-i-i’
(happy-happy) over and
over again as he gives
each child their gift…
 repetition helps to
facilitate participation
and enjoyment

12. ALO 5: Proverbs: ‘because you cannot fight
with a proverb…’ Two very different uses:
1.) as picture
communication symbols –
e.g. Boiki and the Hornbill
bird (in Botswana – see
http://dx.doi.org/10.1080/14
733281003651016 )
2.) as tools of advocacy
for mothers of disabled
children:
‘It’s a way for the
mother to turn the
spear’ and say ‘what
about you?’
(e.g. skunk cannot smell
itself and birds line their
nests with other birds’
feathers…)

13. ALO 6:How can we encourage others to accept our
children…and to communicate with our children if
we, the mothers, are rejected?’
 Therapists’ goals:  Mothers’ priorities:
Communication goals
Communicative
Participation
Social Inclusion
Relationships
Social Inclusion
Communicative
Participation

14. ALO 7: ‘The names we use can change
the way others see our children’
 ‘A very bad example of labelling is to use the term
‘isidalwa’…that means ‘creature’…so some people
will talk about other children by name
…Lungi…uRuth … but this one they will call
Isidalwa’.
 ‘The mothers only use their children’s names… it
makes the child to be known as a person’ - the
words or names we use are powerful advocacy
instruments

15. ALO 8: Other children as strategic
facilitators of communicative participation
Nopelo’s story:
With us it is a competition, all the other children want
to say, ‘She smiled for me!’

16. ALO 9: Therapists and mothers need to talk,
to listen and to learn from one another.
 ‘When you ask “did you practice at home?” I stay
quiet. I don’t know what to say’ - therapists and
mothers need to talk, to listen and to learn from one
another.
 What mothers would like therapists to understand
 What therapists would like mothers to understand

17. ALO 10: the value of the waiting time /area
 ‘The reason I came back to the clinic today… and I
will come again … is the things I learnt out
here…from you’ - the value of the waiting time/area

18. Implications
2. SLT and CBR Service
Delivery
 Process; interventions
WITH caregivers to
optimise resources
WITHIN
 Content; usefulness of
cultural elements as
starting points (asset-
based approaches!)
1. Empowerment of
Participants
 ‘Unlock’ existing means
of social interaction for
children with little or no
functional speech
(LNFS)
 Empower Caregivers to
facilitate
Inclusion/Participation
 Enhance Quality of Life
of children with LNFS

19. Implications (continued):
3. Training
 appreciation,
identification and
collaboration in terms of
process and content for
SLT (and other) Service
Delivery.
4. Research
 Appreciative Inquiry /
Transformative Action
Research as
intervention
 theory related to AAC

20. Conclusions
 There is a need to reframe culture as a resource in
supporting the communication development of
children with severe disabilities.
 There are indeed environmental facilitators galore!

21. Acknowledgements:
• Sincere appreciation to:
• The Mothers, for giving of themselves so that others may
learn
• The Western Cape Cerebral Palsy Association for hosting
the project
• Prof. Theresa Lorenzo & Prof. Sine Duma for such patient
and creative PhD supervision
• The NRF for funding the first years of the study with a
Thutuka Grant (61722/2007).