Interview with Corina Zolle, August 2008
What is your position in ENIL?
I am a member of the Board and of the Management Committee.
How long have you been involved with the Independent Living movement and with ENIL in particular?
I have been involved with the IL movement since the middle of the 80s and joined ENIL in May 2007.
In 1986 I began to study biology at Mainz 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 lawyers. Originally I wanted to study medicine but I thought that medicine really was impossible for people in a wheelchair.
The first time I had personal assistance, young men, conscientious objectors doing their alternative community service, carried me up and down the stairs in a – again – completely inaccessible 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.
During the time at university I got in touch with the “independent living movement”. With 3 or 4 other disabled students we fought to make the university accessible. And we were successful. Most of the buildings are accessible now.
To write my thesis on “Therapies for spinal muscular atrophy” I had to move to another town and again I left my parents house but now I had personal assistance and my own apartment. But I still had problems with my personal assistants. They were 20 year 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 is entitled to have female assistants. I had already begun with my dissertation about Alzheimer’s disease when I was finally permitted to employ female students to help me.
Eventually I had the chance to live on my own- it was a very good feeling. My parents built an apartment for me, close to their own house, where I can live with my personal assistance.
Are you also a member of national organisations in your country?
I am a member of ForseA, which advocates personal assistance, and also of the ZsL Bad Kreuznach which is a centre for independent living.
How do you see the development of the Independent Living movement in the last 10 years in your country and in Europe?
In Germany, a lot changed in 1994 the sentence “no one shall be discriminated against because of a disability” was implemented in the equal rights article of our Basic Constitution Law. This marked the first step making the enforcement of independent living possible. In 2000 we got the AGG, which is our equality law based on EU legislation. In 2007 we got the final version of the Social Security Code which has a section on “Living Independently and Being Included in the Community”. This allowed many disabled people to enforce their right to PAs and to a personal budget. When I started studying, it was considered uncommon to have PA. Still, disabled people have to constantly fight for their rights. State funding agencies for social service can still give you a hard time. There is a strong lobby for nursing homes. You are sent from pillar to post before something is signed and sealed.
However, in recent years we saw old-established associations changing their minds concerning PA support.
How do you manage your personal assistance?
I am the employer for all my assistants. Some authorities are still giving me the runaround when I ask for funding of my assistance, but not as much as they would have 20 years ago.
Have you experienced different approaches on personal assistance in other countries?
Yes, I was in Spain for studying and then again five years ago I was in Alicante. It was not barrier-free at all. I wanted to go to the board walk and couldn’t. So, last year I brought my own ramp. However, I did not need it because the situation had changed completely. I also like what the Valencian Government has done concerning accessibility. I think EU money is well spent there. I was in Washington in 1999 for the conference “Prospects for the Independent Living Movement in the next Century” thanks to funding from ForseA and also the federal Social Ministry. I was impressed with all the furnishings and equipment. Germany is lagging behind in that respect, I wish we were faster. The biggest role model for all countries is of course Sweden, not only regarding accessibility but also regarding personal assistance and direct payment schemes.
What are your wishes for the future regarding independent living and personal assistance?
I hope that personal assistance is easier to attain for more and more people. We still need a change of heart in the authorities’ attitude. The problem with the personal budget in Germany is that it is tied to your income and assets and I wish they would change that.
State funding agencies are trying to keep the wages of assistants low. I think this is unfair since the work of an assistant is complex and demanding. I do wish that state authorities could see that an assistant deserves more pay than a toilet attendant.