"Persons of short stature need to find their own kind of mobility"
"Persons of short stature need to find their own kind of mobility"
Going to the movies at night or for a beer at the pub around the corner – participation as equal members of society is defined in the UN Convention on the Rights of Persons with Disabilities and many persons with disabilities view this as a given. In many areas of life, participation is also tied to mobility. Persons of short stature have very different approaches to this.
Silke Schönfleisch-Backofen is a member of the board of the German Association of People of Short Stature and their Families (German: Bundesverband Kleinwüchsige Menschen und ihre Familien e. V.). REHACARE.de spoke with her about the many different ways mobility influences her life.
Ms. Schönfleisch-Backofen, how do you personally define mobility?
Of course, this a question that I have also asked myself in preparation for our conversation. I believe it is perhaps the most important question. However, you generally need to state beforehand that being a person of short stature doesn’t automatically mean "restricted mobility". There are simply too many different forms of it.
Yet for me personally this is an actual issue. Mobility for me primarily means freedom and self-determination, for instance, to get to work on a daily basis. That said it is very important to me to be mobile when I want it and not just when the carpool is available. Whether it is a car, a three-wheeler or forearm crutches – I want to be able to choose which mobility aid I use and when and where I do so. Unfortunately, this isn’t always an option.
When do you have to forego this freedom of choice?
When I go on vacation for example because I am not able to simply get into any rental car at the travel destination – many other persons of short stature are also not able to do that. In the best-case scenario, most rental car companies are prepared for wheelchair users by offering vehicles with hand controls but this doesn’t help me personally. My car has a very small steering wheel, a brake booster and an extremely light touch steering mechanism for example. I can truly only drive my own car, which is why it is a disaster if it breaks down sometimes and needs to be in the workshop for any extended amount of time.
Are there any other mobility aids you rely on in everyday life?
Yes, my customized three-wheeler. A bike with two wheels is not an option for me since I am not able to keep my balance. My three-wheeler is very lightweight, has more gears and above all a reverse gear. It is important since I also use my three-wheeler at the supermarket or in department stores. Not only do I need to be as flexible as possible but I also need to be able to back out of an elevator sometimes.
I always say, my three-wheeler is my wheelchair. It just looks different. My arms are too short to power a wheelchair and I wouldn’t have the strength for it either but using my legs works very well. For me, the three-wheeler bridges the gap between managing long distances with the car and short distances with my forearm crutches.
So the use of adaptive and assistive aids comes very naturally to you?
Yes and it is for most other persons of short stature as well. These aids make it possible for us to enjoy equal participation as the UN Convention defines. At the office, I also have a power electric wheelchair for instance that can be adjusted up and down. This is very practical in the cafeteria to see what the menu is today. Or for stand-up receptions. I can adjust to the eye level of the person I talk with. When it comes to the wheelchair, it isn’t necessarily about getting from point A to point B but rather about compensating for differences in height.
Are there other mobility aspects that play a role for you?
I have a service dog that can pick up my key or a piece of paper for example. He also contributes to my mobility since I have to go outside three times a day for him. Not only does he provide safety and fosters social contacts, he is also an incentive to go outside and exercise.
So for you mobility also has a lot to do with physical activity in general?
Yes, most definitely! This doesn’t necessarily always mean getting from point A to point B. More than four years ago, I started dancing for instance. The "DanceAbility" exercise and dancing program is originally from the U.S. and it quickly showed me that I was wrong when I used to think, "Dancing? I can’t do that." By now, dancing has become a form of expression for me that not only gives me renewed self-confidence but also better body awareness. This is not about shortcomings but about aspects of general physicality. This illustrates another aspect of mobility for me.
Having said all that, I once again would like to emphasize that my way of living is just one of many ways. My way is therefore not the be-all and end-all for all persons of short stature! Everybody needs to find his/her own kind of mobility. Whether it is with or without aids such as walking aids or a wheelchair for example – everyone should move as they see fit and as they need it. After all, mobility doesn’t automatically mean that you need to be able to walk. Just like in other areas of life, what is important here is to ask yourself and choose the best solution for your own mobility.