Karen, WA
osteogenesis imperfecta Karen lives in the Seattle area. Her experience is different in that she has always relied on a wheelchair in her everyday life, “I grew up as a chair user, so it is the only way I have ever been.” Karen has what is called Osteogenesis Imperfecta, which is a genetic disorder where her bones are extremely fragile. Karen had to learn how to use a wheelchair at a very young age, so it became a part of her general childhood development, “Growing up with a disability is almost a different world than acquiring a disability either through accident or illness…” She explained that learning how to use the wheelchair was one of the hardest things to master when she was younger, but now her biggest challenge is dealing with her hearing loss that is also a product of her genetic disorder. Over the last twenty years it has progressively gone downhill. “Where it impacts me the most is in my ability to get information that is presented to me audibly.” Some examples she mentioned are when she is taking public transit, it is hard to hear the train or bus announcements, so she relies solely on visual aids. She also has trouble knowing which elevator arrives because she does not have directional sound. Since Karen is accustomed to navigating the built environment, she likes to focus her time on helping people learn and become exposed to people like her. She described a time when a four-year-old boy in a grocery store stared and pointed at her with a puzzled face. The father then told the boy to ask her some questions, her name, and ask why she is in a wheelchair. Karen appreciates when adults react in this way because it creates a positive learning opportunity for a child who may have never seen someone in a wheelchair or someone with a disability. “It is really important that kids have a positive experience around understanding that we are all different and if you have not gotten it in your books, or your family life, people in the community need to help you understand that.” Karen has an extreme passion for her work and sees it as something she loves to do. “I might be a chair user, but I am an architect first and foremost.” She had some challenges and had some people say she could not achieve her goals of becoming an architect, but when challenged like that she became even more determined to succeed. She posed many questions relating to the thought of how the design world could benefit if there were more people in the profession who were of varying disabilities. “I think people assume that you have to be very agile and strong in order to be an architect,” but clearly Karen proved everyone wrong. Think about that. If we had a more diverse group of disabled people who were architects, engineers, or interior designers, just imagine how much more accessible our built environment would become.
