Presentation of IF at the Council of Europe hearing

Page 1

Ethics
of
Hope
 Figh/ng
nega/ve
stereotypes
–
and
its
consequences
‐
of
 people
with
Spina
Bifida
and
Hydrocephalus
in
Europe
 Pierre
Mertens,
President
IF
 Strasburg
–
23
September
2011
 Council
of
Europe
‐
CAHPAH


What is IF? International Federation for Spina Bifida and Hydrocephalus Global umbrella organisation 44 national / regional members (organisations of people with SB/H or their parents) / 41 countries

Domains Human Rights Prevention International Solidarity Network Development

HQ in Brussels, small office in Kampala


What is IF? IF represents people with Spina Bifida and Hydrocephalus •  One of 7 Key EU networks of people with disabilities for the European Commission •  Consultative status at the UN (ECOSOC) •  Participatory status at the Council of Europe •  Actively seeking partnerships with FFI, WHO, CDC, Unicef, OHCHR and others

Fortification-project (training, advocacy) with Akzo Nobel and FFI – www.smarterfutures.net www.ifglobal.org


What is IF? An global network of dedicated people, of knowledge Parents, professionals and adults with the impairments, national and regional organizations Annual conferences 2011: Guatemala 2012: Sweden 2013: Vietnam

WWW: website, monthly newsflashes Workshops 2010: Surgery and parent groups (Dar Es Salaam); Standards Harmonization workshop (Nairobi); Capacity Building (Dublin); Conference on Preconception Care and Preconception Health (Brussels) 2011: workshop on prevention (Amsterdam (together with Eurordis) / Brussels), Transition (Brussels), QA/QC (Dar es Salaam), Multidisciplinary Care (Kampala)

Stimulating research


What are neural tube defects (NTDs)?

Spina Bifida (and related Hydrocephalus) Anencephaly


Small defect, a lot of damage

Dr Liptak: “the most complex congenital malformation compatible with life� Nerves interrupted Paralysis below the lesion Incontinence for stool and urine Mobility problems Loss of sensation and risk of pressure wounds Hydrocephalus / secondary malformations (eg. Chiari) Resulting in a lot of medical needs


BUT: life is more than the medical deficit Concentrate on the abilities and not only at the disabilities Medical interventions should be limited to absolute minimum. Less can be more! Conservative is not always a bad word. ETV/CPC versus shunting CIC versus urological surgical interventions Prevention of pressure wounds Training is self control Qualitative technical aids

AND: primary prevention!


What are neural tube defects (NTDs)?


Role models


Untreated
Hydrocephalus


Nega/ve
cycle

Ins$tu$onaliza$on
 Termina$on
of
pregnancy
/
life
 Unmo$vated
professionals
and
parents


Situa/on
in
…
Africa


Posi/ve
cycle

Figh$ng
Stereotypes
on
disabili$es
 Opportuni$es
for
people
with
SB/H


UN
CRPD
 •  Ar/cle
10
states
that
na/ons
reaffirm
that
every
 human
being
has
the
inherent
right
to
life,
and
 shall
take
all
necessary
measures
to
ensure
its
 effec/ve
enjoyment
by
persons
with
disabili/es
 on
an
equal
basis
with
others

 •  Ar/cle
25
lays
down
that
persons
with
disabili/es
 have
the
right
to
the
enjoyment
of
the
highest
 aUainable
standard
of
health
without
 discrimina/on
on
the
basis
of
disabili/es


WHO
resolu/on
on
birth
 defects
 •  Agreed
at
63rd
World
Health
Assembly,
May
2010
 •  Call
on
member
states
 –  Preven/on
of
birth
defects
 –  Care
for
children
birth
defects
 –  Fostering
and
suppor/ng
pa/ent
organisa/ons
 –  Promote
interna/onal
coopera/on
 –  Make
sure
ALL
human
rights
are
enjoyed
by
children
 with
disabili/es
 –  Support
families


Further
ac/on?
 Create
hope
with
health
workers
and
the
public
opinion
 and
correct
the
percep/on
on
newborns
with
birth
 defects
 Establish
coordinated
care
to
improve
the
outcome
of
 newborns
with
birth
defects
 Fight
nega/ve
stereotypes
on
disabili/es
and
s/gma
on
 NTDs
 Empowering
parents
and
PWDs
 Create
an
accessible
and
welcoming
society
towards
PWDs
 Improve
data
collec/on
/
registra/on
 10/08/10


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