Molly Watt on her ambition to make the world accessible to all “Accessibility isn't a checklist: it is inclusion in a very broad sense”

She speaks from experience. On the one hand, Molly has Usher syndrome: she was born deaf and has had to deal with progressive vision loss from the age of 11. On the other hand, she is actively involved in the subject of inclusion through her work as an accessibility consultant. Additionally, she has set up a trust to help raise awareness about Usher syndrome and to give people with this condition a voice and a platform to share their experiences.

In other words, she is actively building a community around the subject of accessibility, drawing her motivation and knowledge from the stories of many people, each living and dealing with their own version of exclusion.

“There is a lot of misconception about accessibility, both in terms of physical surroundings and in terms of technology. To give an example, most legally blind people like myself still have some degree of vision and we would like to utilize it to the best of our ability. In tech development, however, it is often assumed that blind people want to use screen readers, so as soon as it’s integrated the platform, the technology is declared accessible.”

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.”

It’s not until she turned 20 that Molly started to accept herself – as an Usher syndrome patient and as a person with her own hobbies, passions, ambitions, and a future. She finally started to rely on her service dog, Unis, who had come into her life earlier. She discovered that technology was pushing the boundaries of what was possible, enabling her to do more, be more independent, and to enjoy more of her life.

“I now have smart hearing aids, for example, which allow me to stream music directly from my phone. I finally don’t have to make up my own lyrics”.

She laughs: “Actually, my lyrics were usually better.”

At 20, Molly made her first phone call and the world opened up for her. She is very passionate about developments in technology and about making it both accessible and available. Through the Molly Watt Trust, she and her family work to raise awareness about the condition, and also to support Usher syndrome patients by donating helpful devices.

“It can be as small a gift as an Apple watch. You would not believe the impact it can have on one’s quality of life. I can adjust the noise filters in my hearing aid on the go, as I enter the metro station. I can work with my GPS navigation without having to hold the phone and my dog at the same time. You can come up with so many uses for it, really.”

Molly describes the Usher community as active, innovative and growing in numbers. She explained that in the past people with this disease were much more isolated: they had no access to sound and many had to rely on sight to communicate through signing. As their sight deteriorated, they would feel increasingly cut off and have very limited possibilities to connect with other people. This is changing and there is definitely an emerging sense of community: social media, technological advances and increase in general awareness all playing a part: “We like to think that a cure is on the way, but we’re all about making the most of our lives today, in this very moment.”

“I enjoy my life: whether it is shopping with a friend on a quiet afternoon or listening to music. I love what I do, as a keynote speaker, as an expert in accessible technology, and as a blogger. I just want to keep doing it all, one step at a time, because I genuinely believe that every bit of help and encouragement counts.”