that's me

[Guest guest]

My name is Corina Zolle, I am a molecular biologist, have SMA type 2

and live in Germany.

I was born in 1966 and in the first year I developed like all other

children do. I could crawl very fast and I even began to walk a few

steps. When I was one and a half years old my parents took me the

doctor because I did not show any progress in walking, it became even

worse. The doctors diagnosed a muscle disease and told my parents that

I won't become older than 5 years. In the following years my parents

took me to countless doctors and tried various therapies but without

any effect. My parents always feared that I could catch a cold and

worried a lot. I did not worry at all, I was a very happy child and

had lots of friends. When I was 4 or 5 years old my parents sent me to

a kindergarten for disabled children, most of the children were

mentally retarded. Some of the therapists in that kindergarten noticed

that I seemed to be rather intelligent and therefore my parents and my

therapists began to fight for me to be allowed to visit a " normal "

school for not disabled children.

In Germany it is not so easy for disabled children to go to school

with non disabled, because we have special schools for handicapped

children. In these schools there are often physically and mentally

disabled children and the level of education is low. Moreover the

schools often are far away from home and the children have to live in

institutions without their families.

To become allowed to go to a " normal " school I had to proof, that I am

more intelligent than the average of the non disabled children. I

passed these tests very easily and could stay in our little village

with my family and go to school with my non disabled friends. My

mother brought me to school in the morning and my grandmother took me

home in the afternoon because my mother had to go to work. My 6 or 7

years old friends in school assisted me when I needed help, I never

asked a teacher for help because I feared I could be sent to a special

school if I was too demanding. When I had to go to the toilet I called

my parents at home, but I tried to avoid that as often as possible.

Sometimes school was very hard for me but I had a lot of friends and

at least learning was easy. When I was 10 I came to the secondary

school and again I was the only disabled child. The school was

completely unaccessible, so my friends had to carry my wheelchair up

and down the stairs. Once I fell down the stairs and broke my leg. But

it was the only chance for me to get a higher education. Non of the

schools were accessible for people in a wheelchair and neither the

school nor any public authority gave money to change that. All the

money was spent for special schools for disabled children.

When I was 16 I decided to have a spine fusion. This operation saved

my life. I could sit only a few hours a day, I could eat only a little

bit and I had problems with breathing. Moreover it was terrible for me

as a 16-years-old girl to have such a bad scoliosis and not looking

beautiful like the other teenagers. After the spine fusion I was much

taller, I gained weight, and the volume of my lungs had doubled. But I

lost strengths in my arms so that I now had difficulties in feeding

myself. Half a year later I was able to go for holidays to Tunisia, I

could sit in a plane for hours and stay in my wheelchair the whole

they long.

In hospital for the first time I was without my parents. It also was

the first time I came in touch with other disabled people. After the

operation I decided to leave my parents home and went to a institution

for disabled people to finish school. What my parents always had tried

to avoid, I now did it voluntarily. To live in the institution was a

very hard experience for me but I finished school and I got to know

disabled people who are very strong and politically active.

In 1986 I began to study biology at the University, although most of

the people I knew told me I was completely crazy and I would never

have a chance to work as a biologist. Disabled people should study

computer science, economy or become a lawyer. Originally I wanted to

study medicine but I thought that medicine really was impossible for

people in a wheelchair.

For the first time I had personal assistance, young men, doing their

alternative national service, carried me up and down the stairs in a -

again - completely unaccessible university. Personal assistance in

Germany is paid by the social welfare, but it is very difficult to

get. During the first year at the University my parents paid for my

assistance and it was very expensive. I needed the help of my lawyer

to get money from the public authorities.

I was a very good student, I had sympathetic professors (at least most

of them) and passed my exams easily.

During the time at the University I came in touch with the

" independent living movement " . With 3 or 4 other disabled students we

fought to make the University accessible. And we had much success.

Most of the buildings are accessible now.

At the end of my studies one of my professors asked me if I would like

to write my thesis about " Therapies for spinal muscular atrophy " for

him. I was very happy about that question because, first, it is always

wonderful to be asked by a professor, and, second, it showed me that

despite of my disability and despite of all the negative thoughts

people had when I began to study biology, I could have the chance to

become a good biologist.

To write this thesis I had to move to another town and again I left my

parents house but now I had personal assistance and my own apartment.

I enjoyed my work and met many other SMA people. But I still had

problems with my personal assistants. They were 20-years-old men, and

they had to wash me, to bring me to the toilet and all those personal

things. So I began to fight for female assistants. It took many years

to convince the public authorities that a woman must have the right to

decide for female assistants. I had already begun with my dissertation

about Alzheimer's disease when I finally was permitted to employ

female students to help me.After I finished my doctoral thesis, I

turned my hobby into a job, and assumed employment at the Centre for

Independent Living in Mainz. My job there was to give advice to people

with impairments looking for assistance. I did this on the basis of my

personal experience. I have worked in this field for almost seven

years, but finally, I returned to the profession in which I was

qualified. Thus, I started my job at the -Ehrlich-Institut, where

I have been working as a scientist since early 2005.

Eventually I had the possibility to live on my own with a completely

good feeling. My parents built an apartment for me, close to their own

house, where I can live with my personal assistance.Of course, I still

have assistants, both at home and at work. Meanwhile, I have been

doing employed work for 15 years and am therefore financially

independent – apart from my assistance.Looking back I can say that I

have been really quite successful, against all odds. This was only

possible because I was given the chances to use and develop my

abilities with the help of assistance.