We were delighted to be chosen to be Maidenhead’s Thames Riviera Hotel charity of the year. Early in January we began planning a September event to mark the 3rd Official Usher Syndrome Awareness Day (USAD).
It was soon realised that the Hotel would be hosting an Amy Winehouse Tribute the day before and decided MWT would run USAD around this event.
Friday evening was all about #InitTogether the importance of bringing an often isolated community together for a fun, sociable evening around a three course meal and music. It was a great evening.
Saturday morning was all about our accessibility and usability workshop run by our own Molly Watt and work colleague and friend of Molly Watt Trust, Sigma’s Chris Bush. The chance to learn and be interactive with each other whilst learning how to maximise the many uses of handheld devices, smartphones and tablets which can provide real enablement.
The feedback for the whole weekend has been very positive:
‘I have never met anybody else with Usher Syndrome, a room full of Ushers, fantastic.’
‘Thanks for your very informative workshop, one little tweak and my life is made much easier.’
‘I learnt more about accessibility features on my iPhone at your workshop than I did after an hour at an apple store!’
‘Your event was the first I've ever attended, I was so nervous but found everybody so friendly and helpful and I now have friends with Usher Syndrome.’
‘I appreciated the patience of Molly and Chris being so patient, I was comfortable to ask over and over until I understood a few useful tips about accessibility on my iPhone.’
‘I thought I knew all about accessibility on my iPhone, I was wrong, the MWT workshop taught me so much.’
‘I found your workshop more useful than anything else I’ve experienced. I came away feeling enabled not so disabled.’
Just a few of the many quotes received since the workshop along with requests to run the workshop around the country.
We would like to thank the Thames Riviera Hotel for hosting our event and continuing to support our cause. To their staff who took on board some very important points for the comfort of our guests. Providing a well lit room, waitress service to our guests and little things like contrasting tablecloths and crockery and blue glasses a huge assistance to those with visual impairment. Staff were also very helpful with the many guide dogs on site even helping escort several guests across the busy road and directing to the bigger park close by.
This was the first event we have held in the south east, even so we had guests and support from all over the country all wanting to be a part of our #InitTogether #Ushlookslikethis weekend.
All in all the whole weekend was a huge success and one we would like to repeat. We look forward to Usher Syndrome Awareness Day 2018.
On Saturday 16 September 2017, Usher Syndrome Awareness Day, I was very humbled to join in on an accessibility workshop hosted by Molly Watt from Molly Watt Trust and Chris Bush from SIGMA, held at the Thames Riviera Hotel in Maidenhead Berkshire. It really was a ‘blind date’ for me as I had only recently met Molly and prior to meeting her I had no idea what Usher Syndrome was. Usher Syndrome is very much an invisible condition, I was pleasantly surprised by a room filled with over 30 people that had travelled from as far as Scotland and Leeds all making their introductions and it really wasn’t until I saw the flurry of furry hounds with their High Vis harnesses on that I would have noticed anything different about this group of guests at the hotel.
On meeting Molly for the first time in Starbucks, on the surface, there wasn’t anything about her that alerted me to a condition of almost total blindness and deafness, until I spotted ‘Bella - the wonder dog’ sitting on the floor beside her wearing the High Vis paraphernalia. Usher Syndrome is a condition which affects both hearing and vision with the main symptoms being hearing loss and an eye disorder called retinitis pigmentosa or RP and as a vibrant and energetic mainstream millennial, Molly has not allowed her condition to stifle her modern day way of life. Although she is able to communicate using sign language Molly prefers to converse orally, (and boy can she talk for England) as well as maintain an active and strong presence across social media and on top of all that a whizz when it comes to state of the art digital technology - she is even able to maintain her own Digital Hearing Aids from an App on her iPhone reducing those nightmarish visits to the audiologist. A truly model citizen for the connected home industry.
Being an active millennial, Molly has also ensured that (aside from fashion) she is up to date with modern technology and has even managed to find her way into some high profile manufacturers who are developing state of the art technology including some for the Deafblind community. I guess it’s not without doubt that together with her determination Molly has been fortunate to have been selected as a model ‘guinea pig’ for some of this really cool and expensive kit, including #Applewatch, #iPhone, #ReSound Digital Hearing Aids #LiNX3D, #Ring Door Bell, #Philips Hue Lighting etc.
Molly had wanted to be a primary school, but was let down by the system, her university failing to provide access to her course, she therefore made the decision to move into the field of accessibility and enablement.
Molly is comfortable standing in the front of a room and captivating her audience, not to mention she has a great sense of humour too. This confidence and after writing a blog about how the applewatch transformed her life that went viral, also afforded her the opportunity of being invited to Apple HQ in Cupertino twice to provide her insight into the world of the deafblind and the needs of those living with Usher Syndrome along with how she utilises her #AppleWatch to communicate and navigate safely through society on a daily basis as well as in her home & family life - mum keeps a close ‘watch’ over her through technology.
Over the last decade, technology, smartphones, tablets and apps in particular have in many ways changed the way people live their lives on a daily basis and even made the world a smaller place. For many though, the arrival of this emerging technology can be very daunting, that is until you understand the benefits of how to extract the best use out of it to your advantage, regardless of abilities, everyone uses their devices in a different and personal manner. Who better to demonstrate some key advantages of these products, highlighting the important things as well as some useful tips too, than Molly herself. Impressed at how these products have impacted her way of living and with her tenacious entrepreneurial spirit, she took the initiative of organising a hands on accessibility and usability workshop in order to share her experiences with other members of the Usher community so that they too can enjoy the benefits of exploring these new arrivals.
Commanding the attention of an audience of around 30 (and their canine partners) is no mean feat for any speaker, however Molly and Chris managed this with ease and the audience soon became engrossed with the content and couldn’t wait to get hands on with exploring their own devices.
Not having previously had the need to explore the accessibility features on my mobile phone, I was suitably impressed by some of the tips that Molly and Chris shared with her group (Screen Reader vs Speak Screen, voiceover, inverting colours, zoom/zoom region, swiping with two or three fingers, double and triple tapping the home button -who knew all these options were available etc) that even I myself, a sighted and hearing individual have adapted to using some of these techniques to make my access that much more comfortable for myself including the ‘show controller’, zoom window and nightmode on twitter now that I have reached the age where I have to rely on reading glasses to see anything on my screens.
About me:- Passionate about the Digital Landscape and emerging assistive technology that is taking the connected smart home and city by storm, it is through my profession in proximity mobile marketing and my basic understanding of the Deaf community that I have identified a unique and niche new form of digital communication using a combination of this emerging technology and a mobile application as part of a #SmartCity Infrastructure that will transform the lives of millions of individuals offering them a more independent and inclusive way of living. I have started a project to develop this revolutionary new digital communication channel dedicated (but not exclusive) to the Deaf, Hard of Hearing and Sight Loss community and it was during my research into this project that Molly and I connected. In my experience of proximity mobile marketing where creative agencies are continuously looking at emerging tech and innovative ways in which to engage brands with their audiences in the physical world there is a lot that they can learn from people who have restrictions in life with how to overcome challenges.
I would like to leave you with this quote - Employees with disabilities drive innovation. Disability creates a constraint, and embracing constraints spurs inventive solutions - Haben Girma and please do consider that Molly-Watt-Trust is an independent Charity - Molly Watt Trust, registered UK charity 1154853 and would benefit greatly via any donations, please be generous.
I would like to take this opportunity to thank Molly, Chris, Jane and Andy for being such wonderful hosts, great cakes by the way, Thames Riviera Hotel for being so accommodating with the group and their guide dogs and most importantly for all who supported Molly by attending the workshop. There were some wonderful raffle prize giveaways including the Ring Doorbell and Philips Hue starter kit. Let’s hope that there will be loads more to come and I would highly recommend the services of Molly-Jane Watt as a keynote speaker or gadget guru for accessibility, however please do bear in mind she is an independent Charity and cannot survive on freebies.
applewatch, #Apple, #Ring, #ReSound,
Author - Frank Viljoen, Director of MOOHBE a proximity mobile marketing specialist consultant working on a revolutionary digital communication channel for but not exclusive to the Deaf, Hearing and Sight loss community.
Our sincere thanks go to Mark Dunning and his team at the Usher Coalition for their hard work in putting Usher Syndrome on the calendar thus resulting in so many deciding to embrace the opportunity to raise awareness of Usher Syndrome in one way or another, it's been fantastic.
Our own campaign #Ushlookslikethis has been run alongside "Own The Equinox” #USHEQX and has been a huge success.
We would like to thank each and every person who provided a selfie, photo or quote, who posted, tweeted, retweeted or favourited our posts all over social media in our attempt to raise awareness of Usher Syndrome in such a positive way and to include as many of the Usher community, their friends and family as possible.
It has been fantastic seeing so many great pictures from all around the world, also to see the many other Usher Syndrome Awareness Campaigns taking place.
It is your pictures and quotes that have made our campaign work and of course the irony that #ushlookslikethis doesn't look like anything so cruel is this hidden condition.
The Usher Syndrome Awareness drive this past few weeks has given lots the confidence to come forward and to be part of the ever growing community and for them in their own way to not feel isolated or alone and to have a voice.
We have had a record amount of contact from people wanting to introduce themselves and in one way or another be a part of raising awareness of this cruel condition.
It has been amazing watching so many involved in their own awareness campaigns which will definitely have raised the profile of Usher Syndrome.
To see that our handwork has been recognised online has made the campaign a real success:
It is fair to say #WeOwnIt
The primary objective of The Molly Watt Trust is to raise awareness of Usher Syndrome something we do all year round and something we will continue to do along with offering support, fundraising for small items of life enhancing equipment and to work alongside other larger charities.
There remains much to do.
Once again a huge thank you to all who have taken this opportunity of being a part of this worldwide awareness drive we are quite sure that as a result of the hard work by so many that there will be many many more people who will if nothing else have heard of Usher Syndrome which is fantastic.