3. Books of poetry Drawings made with pastel
Siri Fransson
Living in Bergen since 7 years. Originally from Ølen close to Haugesund where she was born 42 years ago.
She is retired due to her disability - Spinal muscular atrophy, a disease which makes your muscles very weak and dependet on a wheelchair. Since 2 years she works
voluntairy for the FFO, where she for example handles questions about universal design.
When not working she likes to draw and write poetry, music and concerts is also of great interest, as meeting friends over a dinner.
Her favourite place is near the sea. ”Where I can hear the gulls cry, feel the sent of the salty water, this brings me back to my childhood, when I used to spend my summers
close to the sea. Now this dream is hard to achieve. When I was a child it was much easier, my parents could just lift and carry me everywhere. Denmark is one of my
favourite places. It’s close to the water, it’s flat and dense, perfect conditions for good accessibility.”
About outdoor spaces in Bergen she says : ”You have to know the way around town and find spaces that are accessible and stick to them, otherwise you will get into
trouble straight away and there will be a lot of detours just to get through.” Spacous, flat and open are keywords for a good place if you use a wheelchair. Spaces with these
qualities makes it much easier to move,
”The environment is not designed for everyone, you always feel that you are one of the others. And even sometimes that you are a problem that needs special solutions. Of-
ten the design separates the walking and not-walking with stairs and ramp, which just separates peoples with disabilites from others and makes you stand out from the
rest.”
Living with a disability requires planning. ”With my disability I have to depend on others. Living with routines makes the daily life work. But making something spontaneus is
hard, you have to plan your everyday life.”
4. Spinal muscular atrophy
Type II
Spinal muscular atrophy is characterized by equilateral muscle weakness and progressive muscle atrophy. The muscles are limp, weak and shows signs of atrophy, especially
in shoulders, torso and pelvic muscles and sometimes also in the tongue. The sense of feeling is normal.
Spinal muscular atrophy type II. The weakness in
Tremors in the fingers and hands are ver
scoliosis.
There is no cure for the disease, treatmen
preventive measure.
6. Poetry
Siri started writing poetry when she was seriously ill and she has published three books. Her
poetry is a source of inspiration for developing my work. I have choosen some of the poems
that inspired me and translated a few sentences to give an idea of the meaning of the texts.
7. DREAMING
Free in my dreams
Longing-
All the things I only can reach through my dreams
Things you take for granted
things that are unattainable for me
Loning for a free life
a life full of spontaneity
This is my life
and only in my dreams I am free to long
I feel like a prisoner
captured by my own feelings
Loning for the night to come...
so I can be free!
My dreams
When I sleep you are in my dreams
I love my dreams
But reality came back too fast
and reality is not always easy
8. EVERYDAY LIFE
Meeting the day Knowing
Can I manage to meet a new day? Sitting here and I know
The easiest way would be to stay in bed know that it is dark
and stay dreaming all day know that the summer is gone
know that the fall is here
Thinking about the day to come know that my time outside is over
Remember: the inhaler, pills, oxygen tube, get a service man for my wheelchair know that the holiday is over
- always something to think about in my electronic life know that I will face a difficult time
Tell the municipality about my rights and tell them the story of my life all over Sitting here and feel the fall coming
again - I feel it in the bottom of my soul
Before I know it my friend is here
Without even knowing it I suddenly smile and laugh while we are talking
I feel that she cares
I feel that there is a lot of people I care about
And all of a sudden my body is leaping with life
You say it must be hard to live a life with a wheelchair
Sometimes even I don’t know how I cope with it,
but something or someone gives me the strenght to survive
But, do you know?
It is not running barefoot in the grass I miss
It is that I am not able to participate
because a stair stopp my way
I don’t care that I am not able to dance on my feet
but it is sad that I can’t enter because I have a wheelchair
Harsh days
It is not the disease
which makes my life though
Not a day goes by without obstacles
It is the society and the actions
That is the life I have
Have to take one day at a time
Think about this the next time you feel sorry for people like me...
Otherwise I would not cope
My future is full of thoughts and concerns
I have to bite the bullet
and wipe away a tear
I will pull through
I promise
9. DISEASE
The fight for life The conqueror
Lying in my bed in the hospital The doctor
The fever is taking over my body Looking at his block
I am frightened Reading from the case book
My body is out of control One year or two
I am not able to distinguish between what’s dream and what’s that is all she got
reality
My heart is filled with sorrow Parents chocked
and my body with pain What shall they do?
What shall they think?
”God, help me! Should they give up?
Get me out of this nightmare
I don’t want to fight anymore” Time pass
weeks become years
Falling asleep again
and hover between life and death The doctor with his crew
Let the faith decide about my life they should have seen her now
Slowly but steadily I come back to life Standing here
The fight is over with sparkles in her eyes
-for now... She thinks
The conquest, it was mine!
11. Material
Sheets
As a wheelchair user you sometimes can feel trapped behind four solid walls. A material that is flexible,
formable and light. A material that is shielded but without shutting the environment out and without totally
closing the space.
The user can feel that she has the power over the material, that it is flexible and can adapt to her needs.
Sheets as an object gives the sense of safety, associated with the feeling when you cuddle up in you bed at
night. An intimate material, soft and protective.
The material also evoke memories from a hot summer day with the sheets hanging from a clothes line floa-
ting in the wind. Almost like a sailcloth far out in the sea. A sense of freedom.
13. Bedclothes. The pattern is confusing The sea. I am not very fond of this Soft, calm. A bit dreary, I like colours. Grandmother, cosy. Reminds
to the eye. I find it difficult to look one. A bit dull. me of my childhood.
at the stripes.
Material samples
14. Colourful. Fun! Fishing-net A bit chaotic but also very exciting. Snow and ice.
Manipulation of materials
15. Spatiality
-I like calm spaces. But not too quiet, it is nice with some re-
laxing music in the background. Not too dusky but too bright.
Walls painted in peaceful colours. I like when it is the objects in
the room that makes it come alive, for example furniture and art.
Too much furniture make me stressed. When the eyes easily
can sort out things in the room, then the amount of furniture and
things is perfect. A warm room is inviting. I like natural materi-
als such as wood and textiles.
-My favourite room is my living room. Here I spend most of my
time when I am at home and in the bedroom. I like to sleep.
-When I come to a new place, it is important that it is not over
furnished. Too much furniture is obstacles if you use a wheel-
chair. It makes you afraid of tearing things down. It is also impor-
tant that you can get a general view of the room so that it is easy
to orientate oneself.
I like the light. The colour and the light makes me think of the sun.
17. now only free in her dreams
dependent on wheelchair easier as a child
and assitants Weak muscles parents could lift and carry her everywhere
two bodypositions - sitting and lying
weightlessness
lifting and supporting
25. Soft and uneven Hard and movable Formable Formable and smooth
Test of different tactile materials
Using small bags of textile filled with materials with
different types of tactility. This is a test to see what
kind of material I could fill my element with. A test for
my user to see what kind of stimulation or non stimu-
lation she would prefer.
