My role as a Special Needs Officer takes me out into the rural
communities (known here as “the field”) rooting out children with
disabilities. In theory, the main aim is
to get them into an appropriate school but in practice there are many more
fundamental problems and hurdles to jump before that can happen. For instance:
1.
Basic education from Kindergarten through to
Junior High School 3 (roughly equivalent to Year 9) has been compulsory and
free since 1961. However, from my
admittedly limited experience in the rural north, it is obvious that dozens of
children are not attending school.
Perhaps enrolment and attendance are higher in the more affluent
south. The law suggests that parents of
non-attenders should be fined but this is never enforced. There would be a very serious shortage of
accommodation and teachers if all these stray children did decide to
enroll. And given that many able bodied
children flout the law, getting parents to send a disabled child to school can
be quite a challenge!
2.
Disabled children are traditionally regarded as a
curse on the family, the outward sign of a misdemeanor or sin, so they are
secreted away inside the family compound.
No data is available to illuminate the extent of the problem or where
our “clientele” may be; you might think the hospitals would be a good starting
point but many of the disabled children are not taken for medical diagnosis or
treatment.
3.
There is no systematic approach to finding the
information/families we need to help.
Departments don’t work together efficiently to share information. This is a very oral community where written
recording is haphazard. Computer
literacy, even within the Ghana Education Service, is limited, not to mention
the lack of access to computers or the internet (how did we ever manage without
them/it!).
4.
There is a constant battle to get enough fuel for
field work. Many officers sit in the
office with nothing to do, waiting to be allocated a few gallons for a few
visits. As a consequence, I would guess
that the more distant communities have never, or very rarely, been visited by
the District Special Educational Needs Officer (SPED) so we are barely skimming
the tip of the iceberg where disability is concerned.
Some Examples:
Ama lives in the outskirts of Zebilla. She has no speech. Her mother has left the family compound so
she is cared for by her father, who drinks, and her aunt. Ama was referred to Zebilla hospital by the
SPED, supported by my VSO predecessor, and fortunately her aunt followed
through the referral to a diagnosis of paralysis/palsy of the tongue. Physiotherapy was recommended but that was
out of the question given that it would involve a prohibitive 30 km trip to
Bawku.
There isn’t a school in Zebilla with any disability specialism
but fortunately the Head teacher at Ama’s local primary school is very
sympathetic and has accommodated her in the Kindergarten environment. Socialising with her peer group has been
important and definitely speeded her progress in communication; she is making
herself understood in many different contexts by gesture - her own sign
language and even trying to make sounds.
I am currently trying to organize for (a) the school to set simple
targets for progress, like a mini Individual Education Plan (IEP) and (b) a
visit to the nearest school for the deaf, for assessment, advice and the
possibility of a placement there in September.
It’s a boarding school situated about 50km away. It would not be the perfect placement given
that she has hearing, it’s the speech that is the problem, however, she would
be taught sign language. I don’t really
know the character or the intake of the school so I can’t judge yet. I failed to persuade the Director of
Education (who holds the purse strings) that a school INSET delivered by
someone from the School for the Deaf and including some basic
sign/communication skills would be a good idea.
I am currently in “pestering” mode for her to release the Education Office
car so that we can take Ama to get the assessment. The pestering word should give you an
indication of my current success!
However, I am determined.
As well as working with the school you must also work with the
family and this is quite an eye opener.
Basically, you turn up on your motorbike in the approximate vicinity of
where you think they live (well, clearly I have to rely on the locals for
this). Then you sit down under a shady,
evergreen mango tree and wait. Often
there are already a few people there. At
this time of the year a few women sit and sort out seeds, food, rice, children;
later on, in the rainy season, they will be out on the farms. A few men and some of the older folk are
there for the company. On arrival a
handy bench is produced for us (they mostly sit on the ground). By and by, somehow, knowledge of your
presence spreads (African drums, witchcraft, miracles…mobile phones or possibly
a noisy motorbike revving past) and the community slowly drifts over to the
mango tree to join the excitement. It’s
amazing!
And, as you reach the end of the community discussion about
the next steps for Ama, another mother gains the confidence to step into the
limelight with her disabled child. This
little girl can’t walk. Two visits later
we discover that she has had treatment at two different hospitals, both
unsuccessful; and now nothing is being done to help her. The girl is 4, so should start Kindergarten
in September. So, I have written her a
referral to get a current diagnosis and treatment plan so that if necessary
(and I think it will be) I can fight for a wheelchair for her (and it may well
be a battle!).
Same time, same place…we have just concluded business with
this mother when yet another member of this community produces her disabled son
(it’s staggering given the sparsity of dwellings in the vicinity!). This boy is very small for his 7 years and
has that slightly stocky appearance you sometimes find with Down’s Syndrome. Like
Ama, he can hear but not speak. It’s
obvious he has limited tongue control and his development seems delayed. His mother explained to us that when he was a
toddler she worried about his lack of speech.
So, he was taken to the local “healer” who slit his tongue (I think the
flap underneath) causing profuse bleeding…but no speech. Call me biased, but I can’t see how this
treatment helped!!
So, yet another referral…and all without leaving my shady
tree.
This is not an isolated experience. The same thing happened in another rural
community we visited on the opposite side of town. Here we were seeking out a deaf child we are
hoping will attend the School for the Deaf in September. As we chatted through the procedure for this,
under a shady tree, out came the
community to view the man on the motorbike with the “nasara” (white
person). Two more deaf children from two
more families were introduced to us and added to our list.
Surely all this evidence should be enough to convince the
district that (a) more systematic work is necessary and (b) there is a need for
local provision for disabled people and their families? Well, actually, not yet, it seems. We are able to visit only a very few villages
and communities. There must be so many
more who really need help to improve the quality of their lives. But there is no money, no system, little awareness
and a huge amount of reticence.
In the next few weeks I hope to get the Special Needs Officer
(SPED), Social Welfare Director, Community Health Nurse and a member of the
Federation for the Disabled together with a view to firing them with enthusiasm
and commitment. From these few we may be
able to set in motion a larger committee whose objectives centre around
improving the quality of life for people with disabilities and for their
families. I don’t think it will be
easy. I’m told that the Federation for
the Disabled fights amongst itself. And
there is no money. But who knows what
may happen? In another district they
have managed (with some funding and a longer established VSO) to establish a
monthly meeting for families with disabled children where they just get
together; get support and advice; meet friendly faces; learn that disability is
not a shame and…spread the word. It took
a long time to get there…but then, so did that shady mango tree.
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