Empowerment of people with cerebral palsy
FROM SHAME TO PRIDE
Empowerment of People with Cerebral Palsy
International Academic Conference on Education and Psychology
April 25 26 Istanbul, Turkey
Doctoral Candidate Satu JrvinenUniversity of Turku, Finland
My Research: Why?My non-fiction book published in 2012 was a
starting point to this research. Many people with cerebral palsy
told how they have tried to deny their impairment and shamed
themselves.The aim of this study is to make the experienced life
with cerebral palsy more visible by giving a voice to one silent
and marginalized group in Finnish society. By showing that every
person has a unique story to tell, it is also possible to empower
those people.This research is part of a large life story project
among disabled people (2012-2015) in Finland coordinated by The
Threshold Association.
How?The research materials have collected from different
sources. Now there are about 30 autobiographical life stories
including some books, many life stories and some shorter episodes
of life. All these texts have published in the 21st century.The
life stories written by Finnish adults with CP are very
heterogeneous just like the writers themselves.For example the age
dimension is wide, from 20 to 80 years. The qualitative data-based
content analysis is an appropriate method for analyzing life
stories, because it appreciates a diversity of this kind of
research material.
What?The purpose of this study is to more profoundly understand
the chances of empowerment experienced by Finnish adults with
cerebral palsy by searching answers to the following questions:
Which factors promote and which prevent the acceptance of
cerebral palsy as a part of identity? Which things facilitate and
which complicate the empowerment as an individual, subject-based
and social process?
Cerebral Palsy What Is It?Cerebral palsy (CP) is considered a
neurological disorder caused by a non-progressive brain injury or
malformation that occurs while the childs brain is under
development. Cerebral palsy primarily affects body movement and
muscle coordination.
Cerebral palsy causes physical impairment. The type of movement
dysfunction, the location and number of limbs involved, as well as
the extent of impairment, will vary a lot from one individual to
another. Cerebral palsy is non-life-threatening, incurable,
non-progressive, permanent, not contagious and manageable
condition.
The Medical vs. Social Model of DisabilityDisability is a
personal tragedy and a personal problem.Medicalization is the
cure.Expertise is held by the qualified professionals.The disabled
person must adjustDisabled people need careProfessionals are in
controlDisability is a policy issueIndividual adaptationsDisability
is the experience of social oppression and a social problem.Peer
support groups are important for disabled peopleExpertise is the
experience of disabled peopleThe disabled person should receive
affirmationDisabled people need rightsDisabled people should make
their own choicesDisability is a political issueSocial change
confined to a wheelchairsickhelplessneed a curehouseboundcant
walk, cant talkneed special education and institutional carebadly
designed buildingsinaccessible transportsegregated educationlow
incomelack of enablerspoor job prospectsprejudiced attitudes
Problem = Disabled People Problem = Disabling Society
Empowerment What Is It?It is a phenomenon vaguely familiar to
everyone and widely used in many disciplines but also quite
abstract and difficult to conceptualize. Commonly shared opinion is
that empowerment is always something positive, but it is hard to
say when someone is exactly empowered.Empowerment is an interactive
process which occurs between the individuals and their
environment.Empowerment is about managing to gain more control over
your own life either by yourself or with the help of others.
Empowerment is both a process and an outcome.
Figure 1. Empowerment process in this research.
More negative attitudes Less negative attitudesLess
possibilities to participate More possibilities to participateFROM
SEGREGATION TO INCLUSION
Empowerment in Disability ContextEmpowerment can be seen as
becoming an abled subject in ones own life and becoming powerful.
The first step in this complex process is to accept cerebral palsy
as a part of the identity. For many people, this has been a long
journey from shame to pride. Accurate information and peer support
are needed as early as possible.There are still many misconceptions
about this life long condition even among the doctors. A child with
cerebral palsy can be seen as a hopeless case with no potential to
develop at all. Equal rights are said to give empowerment and the
"ability to make decisions and the opportunity to live life to the
fullest.
We dont want you in our school.
There is no meaning to study at the university if you have to
communicate with other people, because you walk and talk so
strangely.
How can you even dream of getting a job?
Would you think that you will manage with a baby?
You can never be able to live an independent life.
How on earth someone like you can be a teacher at the
university.Preliminary Results
The parents have a crucial role in dynamic process of
empowerment. Every child should be seen primarily as a child, not
as a living diagnosis. The life stories clearly show that with
suitable education and encouraging examples it is easier to achieve
a capable identity and have more opportunities to say: Yes, I can!
instead of just dreaming If I only couldA lot of sisu and
creativity are however needed when overcoming all those visible and
invisible barriers. Nevertheless almost everything is possible.
Discussion: What Should We Do?The parents, teachers and
employers should see people with cerebral palsy as unique
individuals with many capabilities and (maybe) some challenges. CP
is just one part of us.We need a more positive general attitude
toward different people and not underestimating abilities and the
potential quality of life of those living with impairments.
The life isnt disabled with suitable aids, sufficient help,
positive discrimination, accessible environment etc. Full
participation and equality are still far away but every single step
towards them is worth taking. We should never give up.
Dare, dont scare.Be strong the discrimination is wrong.Keep on
dreaming the future will be shining.
Thank you!
Contact information:
E-mail: [email protected]:www.satujarvinen.com
