Raising awareness of ALS and real accessibility – these are the issues Bianca Riedmann is passionate about. What exactely real accessibility means to her, what defines the person who has been by her side for 15 years and how she otherwise rolls, she tells us on REHACARE.com.
Name: Bianca "Bibi" Riedmann Age: 32 City: Lochau, Vorarlberg, Austria (at Lake Constance) Occupation: Employee in an advertising agency for graphics/layout work for a magazine Impairment: Juvenile ALS (= Amyotrophic Lateral Sclerosis) since 2005 and therefore in a wheelchair since 2008. ALS is a hitherto incurable fatal disease of the motor nervous system in which the motor neurons (= nerve cells in the brain and spinal cord responsible for controlling the muscles) degenerate or die and no longer send messages to the muscles. Since the muscles are no longer functional, they gradually become weaker and atrophy. The disease is progressive, i.e. the symptoms worsen over time – patients lose their strength and the ability to speak, eat, move and breathe.
Bianca Riedmann: My cat Kiki, when she goes crazy and does the craziest things. And my boyfriend Christian, who not only does the craziest things, but also says.
What have you always been wanting to do and why have you never done this so far?
Bianca Riedmann: A long roadtrip-like vacation through different cities and countries in Europe, just like we have done it already four times through the USA. However, I am kept by the often missing accessibility and wheelchair suitability – sometimes it's just the lack of information about it! – prevent me from doing so.
Which person has influenced you most? And why?
Bianca Riedmann: Firstly, my boyfriend. He has been by my side since 2004 and has been experiencing my increasing weakness in all stadiums for 15 years now. Together with me he is always facing new challenges. Thanks to his unbelievably self-evident help, his positive attitude and his tireless courage to take on all obstacles without further ado, I have remained an active and positive person to this day despite everything and can still experience things of which I could otherwise only dream because of my illness. Secondly, my best friend. She has shaped and strengthened me mentally in many ways and is a wonderful role model from whom I still have a lot to learn.
You have the chance to become the Commissioner for the Disabled. What would you do first?
Bianca Riedmann: I would advocate accessibility that is obligatory by law (like the "ADA" = "Americans with Disabilities Act" in the USA). No matter whether it's an old building that needs to be retrofitted or a listed building. How is it possible that heritage protection is above the right of a person with disabilities to move freely and unhindered and to enter and use a public building like anyone else? I would advocate REAL accessibility in all areas that allow disabled people to participate in society as much as possible, as normally as possible and in dignity. By REAL accessibility I mean that people with different disabilities are always involved in planning and adaptation, and that construction is not just done according to some guidelines, which in reality hardly benefit anyone, but the subsidies can be collected during construction.
True accessibility would benefit not only the disabled, but also the old and frail, parents with prams and temporarily disabled people. Accessibility would be comfort for all. Moreover, the creation of a truly accessible environment would bring countless contracts for the construction industry, thereby creating and securing domestic jobs. The money would therefore be doubly well spent.
What is especially near and dear to you?
Bianca Riedmann: As you can easily see from my previous answer: accessibility. But also to raise awareness for ALS, to draw attention to this still relatively unknown disease and what it brings with it. It is very important to me to create awareness in the population for a life in a wheelchair, a life with disability or illness, to point out related hurdles and misunderstandings in the private sector and in society about which many people are perhaps not aware. I wish to bring more understanding into everyday situations.
I would like to be ...
Bianca Riedmann: ... more confident and self-assured in public appearances and speeches and then Commissioner for the Disabled :-D
Which question would you like to be answered the most? Bianca Riedmann: How can ALS be cured or at least stopped? Why are people still staring at you in a wheelchair in 2020? And why is accessibility today still an optional luxury instead of a matter of course with benefits for all?
What I still wanted to say...
Bianca Riedmann: Life is not about what happens to you or what is imposed on you. It's about how you react to it and how you live with it.