Living with a disability
"AS NORMAL AS POSSIBLE - AS SPECIAL AS NECESSARY"
Many people have little or no contact with people with disabilities. As a result, encounters are often characterized by uncertainty and fear. Nicole is an educational scientist, coordinator for the "Parents Self-Help Network", chairwoman of the Integration Vorarlberg association and author. She campaigns for people with disabilities and their integration into society. In this interview, the "incluencer" talks about her personal experiences as the mother of a daughter with a disability and her idea to sensitize people to being different with a children's book.
Nicole, why is the inclusion of people with disabilities still a taboo subject?
We automatically include older people and children in our everyday lives, projects and events. Everyone can identify with that. People with disabilities are often not in our minds. We forget to speak to them directly or invite them. There is still a fear of contact because we don't know how to react or talk about it. Our approach to people with disabilities has evolved over time. In prenatal diagnostics, nine out of ten children diagnosed with Down's syndrome are still aborted. This shows that the fear is great. Often not so much of the child, but of the reaction of others. In our meritocracy, those who can keep up are successful. For people who fall off the grid, things can quickly become very difficult. For inclusion to succeed, however, we need explanations as to why a person with a disability cannot or cannot yet do something or why they behave "differently". When I had my daughter Frida in 2012, the world turned upside down for us too.
How has this changed your life?
Many people don't even know that 96% of all diagnoses are made later in life and only 4% are made prenatally or at birth. It was the same for us. It was like a jigsaw puzzle: a developmental delay plus other health issues led to a suspected diagnosis at the age of two, which was confirmed a year later. She lacks the elastin gene and all her characteristics and abnormalities are related to her connective tissue. As a mother, I had sensed for a long time that something was wrong, but for a long time I didn't dare say it. I felt a sense of relief, but it was also a big shock. For both the child and the parents, a disability means that it won't be easy and that it will take a lot of courage and strength to walk this path together. My heart ached as a mother, but in my head I knew from my experience and training that it wasn't the end of the world and that we would get through it with support.
When did you realize that you needed help?
At the time, I was still a single parent and needed full-day care for my daughter at kindergarten for two days. That was the first time I reached the limits of the system and had to fight for my child to get the care we needed. Austria ratified the UN Convention on the Rights of Persons with Disabilities in 2008. With this signature, the country promised that it would implement inclusion for people with disabilities in all areas. In practice, I then realized that this was unfortunately not yet working as it should. I then sought help from the Integration Vorarlberg association, which campaigns for a good life with disabilities. The idea for Himmelblau was born in 2018.
You published a book and founded your own association. How did your passion project come about?
Himmelblau was born out of my pain at the fact that adults find it difficult to talk openly with children about disability. Then a friend asked me if I had a book that explained how to deal with Frida. I couldn't find anything suitable and the story of my first bicycle came to mind. One of the pedals always broke off and my father fixed it with adhesive tape. I mainly grew up with older boys and of course that was really uncool. I couldn't rely on the bike and I couldn't keep up with the others either. That's a good metaphor for the gene that Frida lacks. If you don't know it, you can't see it at first glance. But it has a strong influence on her whole life. It costs her an enormous amount of energy to concentrate on one thing. The story of Ella and her bike helps children to understand people with disabilities and to categorize them correctly. Some things that we take for granted are a real challenge for others. It's about being different and about different requirements for living and learning. We want to encourage adults to take up these issues and thus empathize with those affected and their families.
You self-published the book. Why did you do that?
Actually, I just wanted to start a project in kindergarten with my idea. But then I called Luka Jana Berchtold, an artist from Schwarzenberg, who immediately agreed to take on the design. Matthias Köb then helped us as a copywriter to package my moral claims into a dramaturgically fluid story. Although we live in different places, we handled the entire project digitally, apart from two meetings. Even though my radius in Damüls is currently somewhat limited with two small children, I still see myself as a citizen of the world. Working together has inspired me and given me the feeling that I am capable of acting. But the literary world didn't wait for us, so we self-published the book. Within 46 hours, we were able to raise the 10,000 euros we needed via crowdfunding. That was incredible and the feedback from parents and teachers that our book helps to finally explain the challenges of having a disability in suitable words and pictures made up for every hour invested.
And not just in words and pictures, you also do entire project days with workshops and events.
The book is a good start, but a successful educational moment always has to do with touch. When something or someone touches you, it really sinks in. That's why we wanted to give the children the opportunity to experience for themselves what it's like to live with a disability. The children can try out everyday situations under slightly different conditions. They are given glasses that simulate a visual impairment or try to close zippers with gloves. The children learn that everyone has different talents and abilities. But you can't choose which ones. Everyone has a completely unique genetic toolkit. It's just luck what you get or not.
Yes, and where you are born. Is it easier as a person with a disability to grow up in a village like Damüls?
Yes, the advantage is that Damüls has such a small structure. Frida goes to the small school in the village with only 17 children. This makes contact with other families more personal. People in the village know us, and Frida benefits enormously from this. It has been scientifically proven that children with disabilities learn the most from healthy children. This is because they imitate and are thus encouraged to take developmental steps. They need a lively environment that inspires them. Of course, they also need more supervision and other learning materials. Damüls always supports us here. Whatever the school needs is provided. This shows that inclusion can work if the attitude of decision-makers is open towards people with disabilities. Unfortunately, this is not the case everywhere.
What still needs to change so that we no longer have to talk about inclusion?
We need everyone - head teachers, teachers, parents of non-disabled children, clubs - and politicians to be open and understand that children should grow up together and learn from each other. That every person is a valuable member of a community and can enrich it. That life in the midst of our society, rather than in special institutions, is ultimately more beneficial. When people grow up where they live, where they are known and can lead as independent a life as possible. Where support is available and assistance in everyday life is not an issue. When I'm old, that's what I expect. No one is immune to disability due to an accident or illness. Everything could be different tomorrow, and we all need to be aware of that. All people have the same need for belonging, appreciation and acceptance. It's just that some have different requirements for living and learning. It is our task as a society to enable them to have a good life. We are all doing so well, that is something that our society is capable of achieving.
You encourage many people with your words. Where do you draw your daily strength from?
I draw energy from the fact that I want to find a solution to a problem. Also from the fact that I don't just think about ourselves as those affected. I always try to think about all families with similar challenges. I set myself the standard that everyone should be well. Regardless of whether they have a disability, a migration background or a different sexual orientation. We live in a region of the world where there is enough for everyone. I simply lack the gene to exclude people on the basis of other characteristics. I would like to see less competition and more togetherness in our society.
You once developed a happiness thesis. What can we imagine by that?
It's important to me to put a positive spin on the topic of disability. There is often so much heaviness and pity involved. Nowadays, we constantly hear what is necessary for a good, happy life. Slowing down, getting out of the comfort zone, having the courage to leave gaps, etc. - in other words, everything that makes up life with a person with a disability. You have to plan more time and things work differently when you are not automatically expected to perform. Of course, it's also a learning process, because we were socialized differently. I also sometimes struggle with the demands placed on me as a mother and on my daughter. Basically, we should treat everyone with respect. Some people like you, others don't - that's completely normal. First and foremost, we are human beings and disability is a characteristic that naturally influences a lot. As normal as possible and as special as necessary - that is the premise that is needed when dealing with people with disabilities, but actually with everyone.
Further information on the Himmelblau association and children's books can be found at: www.himmelblau.co