PHASE 2: COLLABORATOR AND ELEMENTTherese Dernbrant. BAS. Spring 2010.

COLLABORATOR - SIRI

Siri FranssonLiving 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.”

Books of poetry Drawings made with pastel

Spinal muscular atrophyType 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 verscoliosis.

There is no cure for the disease, treatmenpreventive measure.

SIRIS THOUGHTS

PoetrySiri 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.

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

DREAMING

Meeting the day

Can I manage to meet a new day?

The easiest way would be to stay in bed

and stay dreaming all day

Thinking about the day to come

Remember: the inhaler, pills, oxygen tube, get a service man for my wheelchair

- always something to think about in my electronic life

Tell the municipality about my rights and tell them the story of my life all over

again

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

Harsh days

Not a day goes by without obstacles

That is the life I have

Have to take one day at a time

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

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

It is not the disease

which makes my life though

It is the society and the actions

Think about this the next time you feel sorry for people like me...

Knowing

Sitting here and I know

know that it is dark

know that the summer is gone

know that the fall is here

know that my time outside is over

know that the holiday is over

know that I will face a difficult time

Sitting here and feel the fall coming

- I feel it in the bottom of my soul

EVERYDAY LIFE

The fight for life

Lying in my bed in the hospital

The fever is taking over my body

I am frightened

My body is out of control

I am not able to distinguish between what’s dream and what’s

reality

My heart is filled with sorrow

and my body with pain

”God, help me!

Get me out of this nightmare

I don’t want to fight anymore”

Falling asleep again

and hover between life and death

Let the faith decide about my life

Slowly but steadily I come back to life

The fight is over

-for now...

The conqueror

The doctor

Looking at his block

Reading from the case book

One year or two

that is all she got

Parents chocked

What shall they do?

What shall they think?

Should they give up?

Time pass

weeks become years

The doctor with his crew

they should have seen her now

Standing here

with sparkles in her eyes

She thinks

The conquest, it was mine!

DISEASE

MATERIAL

MaterialSheets

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.

DISCUSSION ABOUT MATERIAL AND SPATIALITY WITH SIRI

Bedclothes. The pattern is confusing to the eye. I find it difficult to look at the stripes.

The sea. I am not very fond of this one. A bit dull.

Soft, calm. A bit dreary, I like colours. Grandmother, cosy. Reminds me of my childhood.

Material samples

Bedclothes. The pattern is confusing The sea. I am not very fond of this

Colourful. Fun! Fishing-net A bit chaotic but also very exciting. Snow and ice.

Manipulation of materials

-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.

Spatiality

INSPIRATION

Weak muscles easier as a childparents could lift and carry her everywhere

weightlessness

lifting and supporting

dependent on wheelchairand assitants

two bodypositions - sitting and lying

now only free in her dreams

Relationship between the heavy and the light weightBy artist Ernesto Neto

Enclose, lift and supportBy artist Ernesto Neto

DreamlikeBy artist Ernesto Neto

Weightlessness and balance

ELEMENT

An element for meeting on the same levelSitting, lying or in between

Tactility and stimulation

Test of different tactile materials

Soft and uneven Hard and movable Formable Formable and smooth

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.