Usher Syndrome for me means my whole world is accessed via accessible assistive technology.
A year ago to the day I was fitted with Resound Linx2 hearing aids. It has been quite a year, a year that I have experienced some amazing things.
I was born deaf so very used to wearing hearing aids and I coped pretty well. Great support as a child, I could speak well and on the whole was doing pretty well at school, I accepted deafness, I knew no different. However things changed upon my usher diagnosis.
As my sight went I felt as though my hearing had deteriorated too, thankfully this was not the case but in actual fact I had lost my ability to hear with my eyes. I couldn't lipread, i couldn't see body language or gesture properly. I visited audiology to be told my hearing was stable so I continued to use the same hearing aids, I then realised how much I had relied upon my vision to help me hear. I could no longer see much and I was really struggling to hear and there I was expected to just get on with it.
To say it was difficult is an understatement so I isolated myself, the world was a frightening place when you cannot see or hear.
I look back now and it makes me angry to think this is so unnecessary knowing so much more about the available enabling technology.
Had I been fitted with Linx2 when I was diagnosed with Usher Syndrome my blindness would not have impacted so heavily upon me. The clarity of these hearing aids, their ability to enable spatial awareness, to have several settings changeable depending on environment instead of feeling more deaf and more isolated than I had ever felt as a deaf person I would have felt more confident in my ability to hear and to trust my hearing.
Linx2 bluetooth connectivity has enabled me to use a telephone for the first time in my life and to hear clearly, I was 20 years old before I could make a phone call with confidence and to hear the voices of my family properly, things most people take for granted.
I can now localise, I know where sounds come from. Before I was blind I would hear sound and often need to look all around to find the source, looking all around is no longer an option with only 5 degrees of sight left so this feature is priceless. I can be out and about with guide dog Unis and hear the sounds of danger, I can also hear the sounds I've missed over the years, I can hear birds sing and dogs bark, I can hear aeroplanes and the more important things I can hear voices, the voices of my family so clearly. I can hear new tones, I hear music, I can hear mood and picture atmospheres and so much more.
Blind people rely on their hearing and deaf people on their sight and yet deafblind people like myself are expected to "make do" to get by. As if life isn't tough enough with dual sensory impairment, surely we should be entitled to technology that will enhance our lives, to enable us to get on as best we can.
Linx2 enable me to access so much more. With full connectivity to my iPhone and applewatch I can now access lots of useful apps developed to assist the blind, something I could not do with my old hearing aids.
For me blindness is the most challenging part of my condition, there is no cure for it, it affects how I personally access information and also my mobility.
There is no cure for my deafness either but the hearing aid technology I use has been life changing so not the issue it was for me.
My interest in assistive technology and accessibility heightened on my Usher Syndrome diagnosis. Being only 12 on diagnosis and then registered blind at 14 I had already begun strategising and experimenting with assistive technology as it enabled me to "fit in" as best I could.
I see myself as fortunate to be born at a time when technology was good and am thankful it continues to get better and better, sadly for many accessing the best enabling technology is all too often out of reach financially which is very sad.
In my mind best technology is the only way forward and long term would work out so much more beneficial to all.
More people with Usher Syndrome would have the ability to be active members of society. Able to get out and about with confidence, work in different environments, use a telephone, communicate confidently rather than be home, unemployed often feeling isolated and depressed.
Technology should not be "frightening" to anybody it should be embraced by all it is not just fancy gadgets for people like myself, with other disabilities and for the elderly it is enabling.
I am deafblind, I am 21 years old and technology has given me my life back.
I am hearing with the most amazing technology, technology I'd dearly like for others who would benefit from them. I am able to access lots of information via my iPhone and Applewatch, I am even seeing things with my 5 degrees of vision, things I haven't seen in years via the Ricoh Theta s 360 degree camera. This little camera enables me to take a 360 degree picture which appears on my iPhone screen, I can move the picture around with my finger to see a whole screen of information. A strange experience for me the first time I used it but an amazing experience I can only describe as seeing an atmosphere, zooming in on every area of my screen. It gives me a memory of peripheral vision, something I lost almost 8 years ago, absolutely amazing.
I cannot imagine my life without my trusty MacBook or my iOS products they enabled me to access my education, to reach out to others and to maximise my abilities as a deafblind person and more excitingly these technologies keep improving
I love teaching others how to use the technology I am lucky enough to enjoy, I want others to understand what technology offers and I want those in technology to understand the often unique needs of people with sensory impairment, particularly Usher Syndrome and deafblindness.
Whilst accessible technology is available and amazing it remains that far too many websites are not accessible, even with fantastic technology. This is an area that needs to improve and an area that interests me.
There is no reason why it remains that many educational intranets and government websites are inaccessible. Still many of the most important Social Media platforms are not fully accessible and this needs to change.
I myself was denied my University education and in this day and age this is absolutely not necessary.
It is refreshing to know there is now a Global Accessibility Awareness Day as it must means Accessibility is firmly in the minds of many going forward and this is absolutely good news.
A really is for Accessibility...