Hello DbI readers or friends,
The Usher Network is the month of DbI! So, here we are…
I work as the manager for the only Usher service in the UK with Sense charity for over 15 years. Besides being a graduate, I also have a postgraduate Diploma in Deafblind studies. Not only being a professional in the field I also have Usher Syndrome too. Like many people with Usher, I face some challenges, but can often see the fun side and am able to laugh though not always at the time. There are some sad and clumsy moments too. It all goes to show that I am completely normal – much like everyone else! So, there you are, that’s me, Emma Boswell, the Chair of DbI Usher Network introduced to you all.
I was lucky enough to attend DbI and ADbN conferences for about 6 years before becoming a chair of DbI Usher Network in 2012. I am married to a wonderful (and part-time grumpy) man with 2 energetic and confident teenagers who seem to think that they know everything, though not in my opinion. They still have a lot more to learn about deafblindness and dare I say many other things in life! One thing they have over me is their amazing IT and Social media skills, and don’t they know it.
For many years, under DBI, the Usher Network has helped bring the Usher community, families and professionals closer together. This is a large part of my work too. Usher syndrome is a combination of both hearing and sight loss which is a distinguished genetic medial condition. The exact eye condition that goes as part of Usher syndrome is called retinitis pigmentosa or RP for short. This can mean nightblindness. There are different types and sub-types of Usher. More information about these can be picked up by clicking the following link.
There are many definitions of Deafblindness and Usher Syndrome largely can be defined by issue areas, such as communication, access to information, access to getting around, balance issues, networking challenges and barriers to overall wellbeing. Having differentiated and meaningful access for everyone to share and learn from each other is vital to overcome the issue areas and help to generate a learning and supporting environment.
I have always been very proud to be involved under the DbI Umbrella and the close-knit relationships that have been fostered with many opportunities. I have thoroughly enjoyed meeting many different people from all around the world. I have been able to share my dual experience as a professional and having personal and lived experience of Usher syndrome. This has made for greater and richer understanding by sharing my experiences and insight.
The committee members and I have regular virtual meetings to keep abreast of the global Usher movement and we are very excited indeed to be busy organising an event for people with Usher and professionals to further work together and networking next year. We are looking forward to much in 2023 – so please do watch this space!
If you have any queries or questions or just want to chat something though, we are very happy to hear from you. Just drop us an email and we will be in touch. Anyone who is interested to get more involved with the network, just get in touch.
Best wishes to everyone
Emma Boswell