Molly explains that accessibility is not a checklist of technical requirements. Accessibility means inclusion in a very broad sense: inclusion of people with all types and degrees of impairment, but with the emphasis on what they actually can do, and the enabling tools that they already use.
“Many of us can do really well and have fulfilling and independent lives if we have the right tools and people in place. We are still missing the general awareness about that in society, and it is my ambition to drive the wheel of inclusion and to break down all kinds of stereotypes on the way.”
Molly grew up in the south east of England, in a close-knit family where she and her three siblings had a supportive and positive environment.
“I was born deaf, but I had hearing aids from early childhood and learned to communicate orally, and in general I adjusted quite well. I was not really bothered by it and was a happy and active kid. But when my vision started to deteriorate and I was diagnosed with Usher syndrome at the age of 12, I had to go through a whole new level of adjustment.”
Already at 14, Molly was registered as legally blind, followed by a dark and emotional period.
“It was not an easy time and I definitely had to work through a lot of denial.”
According to Molly, Usher syndrome patients do not all share the same experiences. Each story and journey is unique and each person manages their life differently. And yet, there is one common challenge that is not so obvious to the outsider.
“That’s the part that is most difficult to understand for those who meet people with Usher syndrome. We don’t fit the stereotypical picture of a deaf or blind person. Many of us have access to hearing through hearing aids, which are getting better and better as technology develops. This means that many Usher patients, especially the younger generation, can communicate orally. We still prefer to rely on our sight where we can – and to many, we just look completely normal.”
“But our lives are far from normal: adjustments, big and small, need to be made, and in many cases we need the support and understanding of people around us to manage our lives successfully. When I was growing up, studying became increasingly strenuous, as I had to concentrate very hard to have access to the same information as my peers. I needed more breaks to rest my eyes and to avoid headaches; I needed larger print texts and more time to complete assignments. Nothing impossible, but these adjustments were not easily given or understood, because I didn’t look stereotypically blind-deaf.”