Cecilia Ekstrom

The 10th EBU General Assembly
The Radisson Blu Edwardian Hotel, Heathrow, London
October 26-28 2015
Cecilia Ekstrom
Presentation on Concerns and Important Aspects
Regarding Visually Impaired Children and Youth
In the past four years a network was set up dealing with the pertinent
issues of a multitude of challenges and concerns, facing children and
youths that are blind or severely partially sighted.
We have prepared an action sheet that gives a view of the current
situation, indications of the EBU perspective and role and finally some
proposal for changing the situation and creating progress. The action
sheet can be found on the EBU website.
The network impact as such has been close to none due to lack of
feedback or involvement in the network by national organizational
representatives. This, in fact, might depict either that low priority is given
to this area, or, more probably in our view, that the problems are very
complex and involve several groups of stakeholders. This includes
parents, the young people themselves, teachers, educators, counselors,
people working at habilitation facilities and, of course the national blind
organizations and the youth wings, departments or independent bodies
representing the group in focus. Moreover, we believe that more here
than elsewhere, personal feelings and involvements play a special role,
guilt, worries, parents expected to be advocates and even desk workers
for their kids, even if they do not feel that they have the social, legal or
practical skills or resources. At meetings and during conferences, tears
are often shed that demonstrate the frustration and worries that involved
stakeholders fight with.
One of the main reasons for parents' feelings of guilt and worries about
how to be able to do things better and create what is considered a more
diverse and active backdrop for the kid - and the frustration and feeling of
worthlessness on the part of the visually disabled youngsters is
loneliness, isolation and lack of acceptance.
This leads to a feeling of low self-esteem and being without value. If
there is none to use as mirror or role model, the kid is stuck in a sort of a
For those who grew up in the days of more segregated education and
even institutionalization, a situation we never want to revert to, one of the
obvious rewards was having people around you that you could feel at
ease with, recognize your reactions and experiences in and who could
render inspiration and advice and even give straightforward guidance
without overprotection or exaggerated care. The reactions were harsh,
straightforward but based on a strong sense of solidarity and
communality. It is, however, important to underpin that inclusion as a
guiding principle is here to stay and we think the important task is to
realize this principle in a way that implies the optimal result for visually
impaired children and youths to the fullest degree.
One of the downsides of integration in normal schools and remaining in
the home and family setting, is the feeling that "I am alone and the only
one with these problems".
Our aim, hence, is to ensure that inclusion in its true sense is brought
into operation in the educational system, during habilitation processes,
and we believe that the organizations of the blind have an important role
to add its advise and experience to the efforts undertaken by the
Feeling alone and like the only kid with the problems and challenges is
So what could and should the solution be?
One important answer is:
The necessity to bring into play role models and mentors for
children, youth and their families
The right of all children to develop to their full potential is stated both in
the Convention on the rights of children and the disability convention . As
organizations working for the improvement of the lives and opportunities
for all persons with visual impairments we have the obligation to take an
active part in order to guarantee this right for children and young
persons. As one aspect we therefore highlight the importance of role
models and mentoring for children and youth and their families. Children
having opportunities to exchange experiences with a young adult is
important for their well-being and one technique to promote a child's
development to the fullest. Families having opportunities to talk to
persons with visual impairments is one method that can help parents to
support their children. It can make them feel less frustrated and give
them a feeling of hope for their child's future. We would like to suggest
that you organize activities where children and their families can mix with
persons with visual impairments.
We can also see that children often have different matters, small or big,
that they do not want to talk with their parents about as parents in most
cases are sighted. They also know that their parents worry a lot and they
don't want to make them more worried than necessary. Thus it can be a
good idea to initiate mentoring processes amongst children and young
adults. They can share experiences and talk about strategies in daily life.
This can have positive impact on their identity relative to their visual
impairment and also enhance the child's social inclusion. The mentors
are obviously in this stage not professionals, but merely older friends
who can offer them time and lend them their ears and listen with the
special attention and understanding that they have due to their own
situation as visually impaired.
Mentoring can be arranged within the organizations or in cooperation
with parent's organizations and youth organizations. Summer camps
may be a good place to start mentoring if there amongst the staff are
persons with visual impairment. It can also be a good idea to raise this
topic with habilitations centers in your countries.
As children who are blind or partially sighted often live far apart and it
can be difficult to arrange face to face meetings one method is to use
social media to facilitate contact between children and a mentor. They
can easily communicate by phone or e-mail. Of course there is also a
need for meeting face to face sometimes. Information about mentors can
be spread on the web sites of the organizations, including the youth
For students at universities it can be a good idea to start a face-book
group where they can exchange experiences.
Amongst various experiences with mentoring programmes, national
Federation of the blind, one of the main organizations of the Blind in the
USA has run mentoring programmes with visually impaired persons as
main actors for a number of years. Experience shows that mentoring has
come to be considered a powerful way to provide contacts for youth who
are isolated from young adults in their schools, homes and communities.
I am an administrative officer at the Swedish Association of the Visually
Impaired (SRF).
I work with advocacy within the areas education and habilitation for
children and youth with visual impairments. I have been a member of
EBU children's network since 2010.
Cecilia Ekstrand
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