Unis came into my life when I was 16 years old. Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of my needs had a huge part to do with the way I felt.
Having been born severely deaf and coping well with hearing aids and my daily support, having a service dog of any kind had never entered my mind, why would it?
However, at 12 I was diagnosed with Usher Syndrome meaning I was going from deaf to deafblind and along with that diagnosis came a whole multitude of change.
Unis was a huge part of that change.
I loved her the moment I met her but it took me along time to get my head around having her.
The fact that deafblindness is a hidden condition meant I had been able to hide my condition if I chose to and back then I chose to more often than not, after all I just wanted to appear to be like everybody else!
As beautiful as Unis was and is she made me stick out when it was the very last thing I really wanted.
Behind closed doors she was my everything, she understood me more than anybody, she was always there for me, she never doubted me accept on the occasions I refused to take her out with me - stupidly, back then I would rather fall over and hurt myself than be seen safe and sound with my guidedog.
I look back now and can see my being able to accept myself had been made harder by the thoughtless people around me in school. They made my life miserable by offering no encouragement or reassurances that I was ok, that I was doing the right thing in having and using Unis as my sight diminished, in actual fact they went out of their way to suggest I did not need Unis and that I should return her. Without a doubt these were the attitudes that made my life all the more challenging.
That was a time in my life I look back on rarely accept to say this disgraceful treatment of vulnerable children should never ever take place and if in my work I can make that never happen again my suffering was not for nothing.
Unis saw me through those hideous times, she knew how distressing I was finding life, she would sit at my side leaning on me so I knew she was close. In my time of denial and feelings of depression and isolation she has been with me.
On days when I feel anxious she has been there to calm me down. Snuggling up to her and stroking her beautiful silky fur has been assuring and also enabling.
Caring for Unis was initially overwhelming but doing so strengthened our bond.
I am never alone with Unis, she understands me better than anybody. Unis knows when I am at my most anxious, she has been calming and encouraging and has made me go that extra mile on many occasions.
Unis has been more than my eyes over the 6 years I have had her, she has been my best friend, even my therapy, she has kept me sane through the most difficult times.
Sadly Unis has found working with me difficult over the last year and we have together reached the heartbreaking decision that she should retire and enjoy her retirement rather than struggle on looking after me now she has developed anxieties of her own.
Naturally I am devastated and hope my family can keep her as a pet when my new match is found.
Unis will always be special to me, we have been through so much together including some of the most unpleasant experiences in my life and for that I cannot thank her enough.
Even though she cannot deal with the pressures life as a guide dog brings she is still always here for me, she helps keep me calm and focussed on the days I don't feel I want to leave the house. She knows I care more for her than anything and that I need to give her the same consideration and that means having to go out when I really don’t want to and strange as it might sound once I get out I always feel so much better.
Without Unis on those bad days I might have no need to leave the house and my mental health would absolutely suffer.
Before https://therapypet.org I would not call myself a ‘dog person’ in actual fact as a little girl I was quite afraid of dogs. My parents bought a dog to try and help me over my fear, I accepted the dog but had little to do with her, however, when she died I was devastated and when the next family pet dog was brought home, the most gorgeous and fun boxer dog called Dexter I grew to love him, he grew to be big and bouncy but also incredibly affectionate and protective of us all. Without Dexter I would never have opted for a guide dog and in effect missed out on all the positives they bring, not just in guiding me but in everything she has given me over the years.
San Francisco in November was an amazing experience, not just because I got to speak in Silicon Valley to some of the very top people in digital at Qcon I also got to re-visit my friends in the Accessibility Team at Apple Cupertino and I got to learn so much more.
I did a short informal talk about how and what accessibility features I use to some of the team, some I have met before and to a few new faces, we also discussed the new apple accessibility website.
I was able to speak about features I like, things I don’t and to pass on some great ideas from those around me, in the hope we can all do our bit to make things even better not just for the Usher Syndrome community but for everybody. If it works for minority groups it will work for the majority.
We then had a great questions and answers session. I love this part of my work, the more curious people are the better the understanding of need and the better result for the end user.
Apple products have enabled me to do so much so far. I am proud to be a small voice that gets listened to and am very grateful of the time spent with the team in Cupertino.
I was delighted to speak in great detail about the importance of ‘iPhone ready’ hearing aids and what that can mean to the deafblind, deaf, hearing impaired, hard of hearing - whatever term used, this connectivity is fantastic.
Forty four different types of hearing aid now ‘work’ with iPhone which is awesome. The one question I didn’t ask and which I wish I had is how many of the forty four are also ‘Applewatch ready’ as that really is the icing on the cake for the deafblind, with it’s prominent haptic abilities (vibration alerts on the wrist) and what for me make life a little safer and are very reassuring. I love the fact my Linx2 have direct connectivity to all of my apple products including applewatch.
This whole conversation really got me thinking about how amazing my hearing aids really are having direct that connectivity and what it all means to me.
I think knowing just how much I benefit from these things makes me feel really frustrated for the many people I know who could also benefit as much from my set up / toolkit.
The more I looked at the list of forty four the more annoyed I became.
The main reason being, the number one brand provided by NHS England does not have even one model, yes ‘NOT ONE MODEL’ on that list of forty four meaning millions and millions are missing out not just on best technology but on enablement and inclusion to carry out so much more than these now very outdated and out performed hearing aids.
Neck loops and faffing around are simply not good enough anymore, particularly as incredible assistive technology exists with built in connectivity and has done so for many years now.
Neck loops are fiddly and easily misplaced by the deafblind. Many don’t offer direct connectivity and are anything but inclusive and most have to self fund these extras too, also radio aids to assist with hearing in more challenging situations like meetings, classrooms, offices and the various other places not environmentally friendly for hearing aids, more cost and often to the individual.
Even with these things in place it is often not enough and then comes more expense for Government Services (Access to Work) who will need to fund STTR each and every time to enable accessibility.
How complicated is this system?
An up to date pair of smart hearing aids is the answer potentially saving a fortune.
NHS England need to think about ROI when providing hearing aids. Something even as simple as being able to use a telephone can give so much more in the way of enablement also employment, resulting in less unemployment, less mental health issues and most importantly less isolation.
There is no price for confidence so NHS ENGLAND isn't it time you considered how far technology has come, consider all the things it can do and enable your patients.
It is a fact, confirmed to me by my deafblind trained social worker that all deafblind people should be issued with two pairs of hearing aids and two pairs of reading glasses because of the impact of dual sensory loss and the complete reliance on assistive technologies. This is detailed in my own personal Deafblind Assessment.
Sadly it seems few Health Authorities are aware or do they simply just ‘turn a blind eye or a deaf ear?’ Many in my position do not have two pairs of hearing aids and even worse often have hearing aids that are years old, denying them the opportunities to connect with modern enabling assistive technology, this really is not acceptable.
Perhaps when considering that each and every deafblind hearing aid user should have two pairs of hearing aids, instead provide one pair of modern smart aids enabling an exceptional hearing experience, also enabling locational sounds, access to speech near and far, to telephones, to access not just the sounds to stay safe but to understand them, to hear inside what is happening outside, to adjust and understand environment, also to enable control of hearing aids via apps, all of these things all assist with the challenges of deafblindness. Simply insist the hearing aids are insured.
I mentioned the add ons that dated hearing aids require like neckloops, radio aids. My hearing aids need neither, sound is streamed through the outstanding connectivity from iPhone to hearing aids and my iPhone even acts as a microphone.
I was told some months ago by an audiologist the reason people with deafblindness who choose to have cochlear implants will usually get funding for two at a cost far exceeding that of top of the range hearing aids is to enable locational sounds for safety - shouldn't this be the same for hearing aid users?
Best access to sound for safety reasons should be all, not based on which type of hearing aid required. Safety is safety.
Outside can be a very frightening place when unable see or hear danger and not just for the deafblind person but also a potential danger to others.
I used standard issued NHS hearing aids from 18 months old until I was almost 21years old, I could access sound, I learnt to speak using those hearing aids and benefitted from all visual clues.
I was very typical of a deaf person, I coped ok. However since my Usher Syndrome diagnosis at 12 years old and being registered blind at 14 years old I felt more deaf, I struggled, particularly with tiredness. Back then I didn't really know why. I was told ‘Usher Syndrome is exhausting!’.
Today it is obvious, I could no longer lipread very well or benefit from facial gesture, from body language or from the many visual clues deaf people use. I had to completely rely on my hearing aids and they just were not good enough.
Sadly there are many struggling along just like I did but what makes it even worse is they are now much more aware of what ‘Smart hearing aids” can offer they just cannot access them!
It is time for NHS England to not just be aware of the everyday challenges to those living with deafblindness, the real impact blindness has on somebody already deaf, how isolating a condition it is then it becomes clear to see that each person should have access to the very best in hearing aid technology.
Helen Keller’s quote from all those years ago ‘Blindness separates people from things, deafness separates from people’ is very true, however best technology can now not just ease isolation but enable inclusion.
I feel very privileged to have the very best in hearing aid technology, it enables me to be confident in my work. I also feel very passionate that others like myself should also have access to the best.
My smart hearing aids are more than just hearing aids they are literally my ‘Linx2Life’.
Smart hearing aids and apple products are accessibility tools for people like myself, they are not flashy gadgets they are essential for the everyday challenges faced.
I'd like this post to reach Goverment, to be read by NHS England, Access to Work, Social Workers working with the deafblind, Audiologists with deafblind patients, Occupational Therapists working with the deafblind and to anybody else I have missed in the care sector.
We have to make life inclusive.
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...