When Laura W. was diagnosed with Rigid Spine Syndrome, she wanted to find out more about it – but experience reports were rare. Today, she uses her blog to lobby for society to think less in stereotypes and for other people to speak courageously about their various disabilities. Why this is so important to her and how she otherwise rolls, she tells us on REHACARE.com.
Name: Laura W. Age: 30 City: Oldenburg county in Lower Saxony, Germany Occupation: Teacher in a kindergarten Impairment: I have muscular dystrophy, caused by a genetic defect. The Rigid Spine Syndrome was quite "mild" for me, so that I had few limitations until my early twenties. The topic of disability has not been addressed. I went to regular schools, trained as a kindergarten teacher and got my driver's license, moved into my first own apartment (a shared apartment on the second floor) – all without any problems. My illness then manifested itself with initial limitations at the age of 25, through falls and weakness in my legs, so that climbing stairs became a high-performance sport. In a rehab in 2017 I met doctors who knew my clinical picture for the first time. At the age of 27, I got my night-time respiration and at 28 I accepted my first wheelchair. From that time on I started to get involved with the community of people with disabilities. Because I only now felt I belonged. Now I am somehow in the middle of it and I understand that I had an invisible disability all my life.
Laura W.: Good humor and comedy, my little family consisting of my partner and my two Sphynx cats. Life – I take a lot with humor and can laugh very well about myself.
What have you always been wanting to do and why have you never done this so far? Laura W.: There is actually nothing that I wanted to do and did not do. I would just like to travel a lot more. I find other countries and cultures very interesting. When I finished my education and earned my first own money, I took some bigger trips. When my physical limitations took up more space, I retreated a lot and only did the most necessary things. Now that I can accept aids like the wheelchair, I want to do more again, like traveling.
Which person has influenced you most? And why?
Laura W.: I do not have a typical role model now. But my parents have shaped and influenced me. With their behavior and upbringing. They never let me feel that I was sick or that I could not do something. My disability has never played a role or been discussed in any way. Or used as an excuse for any deficits. When I myself felt that I couldn't do something or that I couldn't do it the way other children could, my parents always said: Do it the best you can, Laura. And that's what I did and still do today. This is how I have achieved all my goals. I am incredibly grateful to my parents for the way they treated me, it made me a self-confident and independent person. You have the chance to become the Commissioner for the Disabled. What would you do first? Laura W.: I am in no way political, legal or activist. I don't see myself that way and I have far too little knowledge. But since 2002 there is the BGG (law for the equality of the disabled) in Germany. You hardly feel anything of this law in everyday life. It includes, just to name a few examples, accessibility in road traffic, self-determined life, simple language, participation in working life and much more. I think that as the Commissoner for the Disabled I would like to advocate more implementation of this law. And that no "healthy" people in advertisements slip into the role of a disabled person. That annoys me also always very much!
What is especially near and dear to you? Laura W.: My blog work on Instagram, Facebook and my website. To show that a person with a disability can also have a normal everyday life with work, household, relationships and leisure activities. That there are (young) people with disabilities that are not visible at first glance. That there are (young) people who can walk/run, but are still dependent on a wheelchair. Because in this matter the society is still strongly limited and thinks only in drawers, quasi either-or. That has become very important to me.
I would like to be ... Laura W.: I believe in a life afterwards, in second chances/possibilities. I would like to lead a life as a "healthy person". Not that I don't like or appreciate my current life – but I would like to live a life with full physical strength and energy. I would like to know how it feels not to be slowed down by my body and to be able to improve my performance. I have always been very ambitious, especially when it comes to sports. But I noticed very early on that at some point I had to stop doing it physically. For example, at the sports festival in elementary school: I gave my best, but I never achieved the same performance as my peers. Or when riding: I did vaulting (therapeutically) and then learned to ride. I was also good, but never like other children my age. There was always a lack of strength, endurance and energy. I would like to be a "strong, healthy" person for once. Which question would you like to be answered the most? Laura W.: What if....? – one of my favorite questions.
What I still wanted to say... Laura W.: People with rare diseases should be much more courageous and share their history. When I got my diagnosis as a teenager, I was incredibly curious and desperately wanted to learn more about my disease. Only I found only very theoretical texts written by doctors, which gave me hardly any answers. I felt very lonely. Today I share my own story and I know: Together we are strong and the exchange of experiences, tips and tricks helps a lot! So be brave and go into exchange with others!