Psychological and social factors affecting aging woman
Virtual presentation järvinen
1. 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 Järvinen
University of Turku, Finland
2. 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.
3. 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.
4. 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?
5. 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
child’s 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.
6. The Medical vs. Social Model of
Disability
• Disability is a “personal tragedy” and
a personal problem.
• Medicalization is the “cure”.
• Expertise is held by the qualified
professionals.
• The disabled person must adjust
• Disabled people need care
• Professionals are in control
• Disability is a policy issue
• Individual adaptations
• Disability is the experience of social
oppression and a social problem.
• Peer support groups are important for
disabled people
• Expertise is the experience of disabled
people
• The disabled person should receive
affirmation
• Disabled people need rights
• Disabled people should make their
own choices
• Disability is a political issue
• Social change
7. • “confined” to a wheelchair
• sick
• helpless
• need a cure
• housebound
• can´t walk, can´t talk
• need special education and
institutional care
• badly designed buildings
• inaccessible transport
• segregated education
• low income
• lack of enablers
• poor job prospects
• prejudiced attitudes
Problem =
Disabled People
Problem =
Disabling Society
8. 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.
9. Figure 1. Empowerment process in this research.
More negative attitudes Less negative attitudes
Less possibilities to participate More possibilities to participate
FROM SEGREGATION TO INCLUSION
10. Empowerment in Disability
Context
• Empowerment can be seen as becoming “an abled subject” in one´s 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.
11. “We don´t 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
12. • 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 could…”
• A lot of sisu and creativity are however needed when overcoming all
those visible and invisible barriers. Nevertheless almost everything is
possible.
13. 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 isn´t 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.
14. Dare, don´t scare.
Be strong – the discrimination is wrong.
Keep on dreaming – the future will be shining.
