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Molly Watt | From Deaf To DeafBlind In 2 Years

The header image is a headshot of Molly smiling with sunglasses on top of her head. Her blond/brown hair is cascading over her shoulders in loose curls and she's wearing a chambray shirt.

Women On The Move | Molly Watt

“I’ve often said it’s one thing being a deaf person, it’s another being blind person, but being a DeafBlind person is a whole new ballgame.”

~Molly Watt

Contents:

Editor’s Note

My deepest apologies for not publishing this on Monday. Molly Watt is someone I’ve admired and followed for years. While I knew she was a very passionate advocate raising awareness about Usher Syndrome, I hadn’t heard her full story until she sent us her video.

They tried to tear her down yet and thankfully she didn’t let them have the victory. We all can learn something from Molly’s story. 1

As with all of our video/transcript posts you have the option of reading, listening or both. Enjoy! ~Steph

Beyond Sight Magazine Cover

Beyond Sight Magazine Cover contains a headshot of Molly smiling with sunglasses on top of her head. Her blond/brown hair is cascading over her shoulders in loose curls and she's wearing a chambray shirt. The text reads Molly Watt | From Deaf To DeafBlind In 2 Years.

YouTube Video

Introduction

In this photo of Molly she is looking thoughtful while gazing off camera. She has on an orange top with pink flowers.

Hi, my name is Molly. And I thought I would come and say a few words about my story as to why I am here today.

So, my name is Molly, I’m 27 years old. And I have a condition called Usher Syndrome, which is the most common cause of congenital deaf blindness. Now I say I say it, in a really blase way because it’s basically my life. But I’m going to say to you now, it’s not always been like that. I’ve taken a lot of hard work and support to get to where I am today. So if we could just rewind a little bit and start from day one, shall we say?

Life With Hearing Aids

So I was born deaf. So I was given my first pair of hearing aids, 18 months old. And that was all I knew, really, and had a perfectly happy childhood. I was always the only kid with hearing aids, but that was just the way it was, it didn’t particularly bother me or hinder my confidence as a child. The only thing that was slightly different was I wasn’t able to speak properly till about six years old.

So I was held behind a little bit at school. So I was held back a year and so I was always a year ahead of my peers. But again, being an August baby, didn’t really bother me too much.

So I have been wearing hearing aids since 18 months old and wouldn’t imagine I couldn’t imagine life without them. Everything was going hunky dory until I got to go into senior school where it’s like any other kid is quite nerve-wracking. A new new school, new faces, etc. But for me, I was struggling with my, I was unable to lip read, which for a deaf child or person is pretty isolating, because I was relying on a lip patterns and anything visual really. So as soon as I started to struggle to read lips, I was struggling big time.

I was also struggling with headaches, I was clumsier, and it was actually my teacher of the deaf at the time, who said, “Molly, you might be reading glasses, go for a routine eye check.” Because it’s not unusual for for deaf people to be so exhausted because we’re using our eyes all the time to you know, understand and digest everything. So you can imagine how exhausting that is. So nothing seemed particularly unusual at this point.

But it wasn’t until I got to the optician’s just for a routine eye check and the optician asked my parents “do you know why Molly is deaf?” And they said, “well, actually, we were told it was a technical blip. We don’t have any family history in it, it is what it is.” And the optician, and this is really really lucky to be honest, the optician had been reading up on Usher Syndrome and had said to my parents, “you know, I think there’s something not quite right at the back of Molly’s eyes and I think it might be linked to her deafness.”

Receiving The Diagnosis

So appointment after appointment ended up Moorfields Eye Hospital. I’m 12 years old at this point. And that’s when they confirmed I was in fact, I in fact, had Usher Syndrome. Now, Usher Syndrome at this point to me just seemed like a condition just something else to add to my list of problems, shall we say. But I’ve never really understood the severity of it, I was only 12. And looking back in hindsight, pretty naive.

But the other thing with Usher Syndrome is it consists of deafness from birth, and then the blindness of it which is retinitis pigmentosa is a progressive blindness. So you start off sighted and then you gradually lose your peripheral vision. The rate of progression and how much you lose depends on the person. They had said to my parents when I was 12, that I shouldn’t see too much of a difference till I was in my late 20s, early 30s.

However, I went from being partially sighted at the age of 12. Just severely sight impaired, which is politically correct, for blind at the age of 14. So I lost the majority of my vision in two years. So it’s fair to say none of us were expecting that we weren’t we weren’t prepared for it.

Changing Schools

School was a real real challenge. I didn’t really know what to do with me. I have support for the deaf side and support for the blind side, but neither of them knew about the other. And you know, I’ve often said it’s one thing being a deaf person, it’s another being blind person, but being a DeafBlind person is a whole new ballgame.

So it was a real challenge because I was struggling to accept and understand what I needed. As well, and it was all during critical years of education. It actually resulted in me leaving mainstream school and going to (inaudible) school for the deaf, which in hindsight, was the worst thing I could have ever done.

Facing Barriers To Support

The school they talked about supporting me and have an experience with children with Usher Syndrome, but they couldn’t have been further from the truth. Unfortunately, it was all about this money. And so of course, they wanted me there, and once I got there, I suffered bullying from both teachers and students. I was labeled a fraud, because I seem and look okay, I can’t really be blind because I’m as independent as I am.

And I, I was often quite confused myself, because I had the (inaudible) to me. When I was telling her I’d been matched with my guide dog, Unis , which involved a lot of training, mobility training, and you have to qualify to become a guide dog owner. They don’t just hand them out. But I was really struggling accepting having Unis and I loved her as a dog absolutely adored her. But accepting that I needed her was a real challenge and I was only 16.

And I remember saying to the (inaudible), I’m really struggling and I haven’t been eating so hadn’t been going to the dinner hall. Because it meant leaving my my room with Unis because it was dark at this point, can’t see a thing in the dark. And she said to me, “well, Molly, you don’t really need her, so that’s why.”

And I remember kind of believing her, you know, and I made the call twice to guide dogs to actually hand Unis back because I was kind of convinced I didn’t need her and that my life would be easier without her, which absolutely breaks my heart now, because I adored Unis. And I really wish I could have had the correct support to support me from day one with her because that would have helped a great deal more, rather than being denial for a few few years longer.

Moving Forward

So anyway, needless to say, having Usher Syndrome was a challenge, particularly because I was in those delicate school years, and I didn’t have the support. But that said at home, I had an amazing support system, I lost the majority of eyesight. And two years, as I mentioned, I struggled a lot with my mental health, mainly because of the school that I was at, I would say. But as a lot of people will know, these things don’t just go away, you know, even now at 27 I do struggle with my mental health.

But fast forward a few years, you know, I did get into university decided it wasn’t for me, the support again, wasn’t there. I just kind of felt that these places weren’t ready for me. And there was nothing on me it was actually them, and that I was going to succeed anyway.

So I have been self employed now for about four years is going on five years. And I consult an accessibility and digital accessibility but also the, it varies massively the work that I do with large and small tech companies. Consulting on how technology can be hugely impactful. But also the use of inclusive design helping not just groups of people like myself, but every single one of us.

And yeah, so I’ll use my own personal experiences as expertise. But I also have training and sort of design. And other bits, you know, I know bits of code i’m not i’m not fab at code, I just know bits. So I know enough to help with back end developer developers and designers when it comes to consulting and giving out solutions or just merely just guiding them in the right direction where accessibility and inclusion is concerned.

The Molly Watt Trust

A full length fabulous photo of Molly with brunete hair wearing a red midi dress with white boots being guided by Bella.

So yeah, I’m 27 I’m moving out. I I’m on my second guide dog, Bella, who is beautiful, amazing. And needless to say she comes everywhere with me, which is a slightly different story than Unis but I think having Unis really taught me a lot of things. Definitely having my family and friends have made all the difference.

I learned the hard way about friends and that not everyone you think is going to be there is going to be there. But I’m I’m okay with that. I’m okay with having just a few friends quality over quantity any day. And that is me really but I am very passionate about raising awareness of Usher Syndrome.

We set up the charity, The Molly Watt Trust, and that was mainly to raise awareness of Usher. But what we can do and not what we can’t do, we’re not about the sympathy vote. But what we can do with the right tools and support in place. So as a charity, we do fundraise for assistive tech, we mentor, we get people together as the people of Usher who have never met someone else with Usher to me and their families.

So we’re only small but that’s something that it’s definitely helped us as a family cope dealing with Usher Syndrome as a family as well as me as an individual. So The Molly Watt Trust will always be very close to my heart for that reason.

And then Molly Watt Talks, which, which is my company, which has really molded me into the person I am today. Thank you so much for listening to my story. If you have any other questions, please do feel free to reach out. I have a website or I’m very, very, very present on social media, Twitter, which Molly Watt Talks don’t hesitate. I’d be more than happy to answer any questions or if you want any help in your workplace, etc. don’t hesitate to reach out thank you so much.

Transcribed by https://otter.ai

Connecting With Molly

Molly’s Bio

Molly is 27 years old and has a condition called Usher Syndrome, which causes deafblindness and has no cure. She is director of Molly Watt Talks, a usability and accessibility consulting group, and co-founder of the Molly Watt Trust, a non-profit helping to raise awareness about Usher Syndrome and provide access to technology. Molly now works part time in Nexer Digital’s design team in the UK, as an accessibility and usability specialist

Molly is a motivational speaker, author and illustrator of 2 children’s books and avid blogger. She is an advocate and ambassador of both GN Resound and Sense, a national deafblind charity in the UK. Using her negative experiences to make a positive difference to others, Molly is proud to have spoken at the Houses of Parliament, Harvard Medical School, Apple Campus, Camp Digital, Spotify, ASOS, Atos, the BBC, the NHS and for private audiologists around the UK. Her passion is accessibility and the use of assistive technology to enable and enhance the lives of people living with life-changing conditions.

Connecting With Bold Blind Beauty

Image Descriptions

  • The header image is a headshot of Molly smiling with sunglasses on top of her head. Her blond/brown hair is cascading over her shoulders in loose curls and she’s wearing a chambray shirt.
  • Beyond Sight Magazine Cover contains the same photo as in the header. The text reads Molly Watt | From Deaf To DeafBlind In 2 Years.
  • YouTube Thumbnail – A photo of Molly, a pretty young woman, with long wavy blond hair and a big smile is wearing a light-colored top. Trees are in the background.
  • In this photo of Molly she is looking thoughtful while gazing off camera. She has on an orange top with pink flowers.
  • A full length fabulous photo of Molly with brunete hair wearing a red midi dress with white boots being guided by Bella.
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