I recently visited the ATOS London Offices, for an appointment set up by my Mum, Jane.
We were there to meet with Dr McKillop to discuss varying issues and negative experiences I and many others have endured at PIP assessments and as a result of inappropriate awards for many of us living with Usher Syndrome or Retinitis Pigmentosa (RP).
The meeting was set for 2:30pm purposely so I could travel to London outside of rush hour. Mobility for the deafblind/blind is stressful anytime of the day but particularly in busy periods.
I had been involved with with the original pilot assessment for PIP, as a result I was not overly concerned about my assessment, unlike many who not only find filling out the application form stressful and inappropriate for people with sensory impairment and need assistance completing it.
I am lucky my Mum has always taken care of forms for me and as capable as I am I dread the day I have to do form filling alone.
I shouldn't feel that way, with real understanding, using the assistive technology available and good lines of communication there has to be a far more appropriate way of doing things that do not cause so much distress.
Finding a better way is something I would like to work on with whoever would like to work with me.
Planning the journey into London was much easier with my Mum as she was able to drive us both to a tube station. The tube is much easier to use than the mainline train, however, it isn't easy.
On this occasion, Mum decided to drive and park at Hounslow West tube station, so we could take the Piccadilly line, followed by the Victoria line to Warren Street station and then a short walk to Triton Square. This was the most direct route with minimal changes underground.
The reason Mum drove into Hounslow was as a result of thinking ahead to avoid crowds, anxiety and darkness. Though the meeting started at 2:30pm travelling into London at any time is stressful for a DeafBlind person.
My guidedog is partially retired and whilst Guidedogs for the Blind have told me I could wait up to 18 months for a new guidedog life cannot go on hold for this amount of time so I have to make the most of the resources I have, in other words to ask for help when I need to and to get from a to b using my cane. I am not as comfortable or confident with my cane outside of my comfort zone which would just be my local area.
Whilst I am in this situation I have to arrange my work and transport around assistance from others as my work takes me all over. I’m very lucky to have a very supportive family and network of friends happy to help when they can but for me asking for help isn't ideal but something I have to deal with.
On this occasion I had to use my red and white cane (red and white striped cane indicates user deafblind) and thankfully had the assistance of my Mum to make the day less stressful.
Forward planning is always a must so with Mum it meant a half hour/forty minute drive to Hounslow West tube station to take roughly an hour tube ride to central London for the meeting at 2.30pm.
Then allow an hour, possibly two for the meeting, hope to miss rush hour on the tube back to Hounslow, knowing that on reaching Hounslow West and the car it would be getting dark this time of year. At least this way I could sit in the car with my eyes closed (rested) after a challenging journey.
I should point out that Retinitis Pigmenosa (RP) which is the blindness part of Usher Syndrome is tunnel vision and often results in complete blindness in the dark, bearing in mind through winter months the days are long and often dark so very challenging. winter also brings the brightest sunshine which also causes unbearable glare on very delicate eyes so also blinding.
Though the journey was carefully arranged in a cautious attempt to reduce as much anxiety and stress to myself as is possible this doesn’t ever totally eliminate stress. I would hang onto Mum and whilst I am trusting the cane to detect dangers, obstacles and depth perception I still naturally scan around me in an attempt to use any visual clue that helps me navigate safely.
Scanning is exhausting with 5 degrees in one eye, plus the ongoing light changes the underground brings additional stress to the eyes because of the darkness (night blindness) and sensitivity to light and changing light conditions.
At best it is a horrendous headache and worse a total nightmare.
I know you could think stop scanning right? Or maybe even close your eyes and rely on the cane and allow Mum to guide me!
Much easier said than done, especially with progressive conditions like retinitis pigmentsosa as though registered blind I was born fully sighted so closing my eyes does not come easy, scanning is very much a part of the coping strategy even though it is horrendously exhausting.
I explained to Dr McKillop that what I get from scanning is useful as in, when I look at a face I can only see a small portion of it, perhaps an eye and nose or a mouth, for me being deafblind I would scan the face to draw up a picture of the face as a whole in my mind and then concentrate on looking at the mouth for lipreading which is another part of coping strategy but as I’m sure you can imagine truly exhausting. With my new hearing aids I now benefit from being able to locate sounds, I often look to where I hear the sounds to better hear this could be anything, a person, a car, train, siren, lots of environmental sounds that help keep me safe.
My head will naturally turn to where I hear sound and without thinking my eyes are open and scanning to detect the sounds - all strategies developed to cope in a world of sight and sound.
Ticket machines at tube stations are not easily accessible and tube travel not free for people not living in London. There was nobody in the tube station to help me purchase tickets so again thankfully my Mum was able to do this for me.
Once on the tube, and seated I then use my iPhone to zoom in on the underground maps to check how many stops there are before changing tube (I looked prior on ‘Tube Tamer,’ app) I find myself closing my eyes to rest, RP eyes are incredibly sensitive and closing them when I can is helpful. It is a lot less stressful sitting next to somebody I know, I rest my arm so it is touching my Mum’s, I feel safer then and can relax a little.
Once I know exactly where we are going, who I am with, how many stops I feel a little reassured.
Reassured enough to not feel or watch the motion of the tube going from tunnel to outdoors to tunnel, light to dark, dark to light, as this is very disorientating. I avoid this as much as possible as my eyes struggle to adjust in inconsistent lighting, lighting conditions.
I discovered a few years back I could not look out the window of a moving car door without feeling a little motion sick, my eyes will often feel they are bouncing side to side, and having my eyeballs feel they move around so quickly without moving my head hurts.
I can no longer just peer out a window and watch cars drive past, just like I can't sit in a moving train or tube and watch the outdoors in a moving vehicle. As time has gone on I have realised that to avoid feeling unwell or any onset of vertigo before I have stood up, I will often just close my eyes. Having my new hearing aids go some way to reassure me of my surroundings, listening for the tannoy for any crucial messages, but of course on this day I had Mum.
Having Mum relieves a lot of stress.
Between underground lines we had to travel up escalators, if I had my guidedog it would have been the need for stairs or lifts as she was not escalator trained and in the past this has been a source of worry for me as although I do not live in London I do travel to London for work fairly regularly and once again I would have to find out which tube stations are accessible for Unis and I!
The majority of the journey was on the Piccadilly line then a series of tunnels, escalators and lifts to the Victoria line, onto another tube, this time only for 2 stops.
Thankfully Mum guided me to where the lifts were to avoid more crowds. My cane tactfully establishes where steps are, and at the top and bottom of steps there are bobbly grids that I could also feel through the cane to indicate the start and end of a set of steps.
Signage underground is everywhere, and up close I can see however without walking close enough to see or using my iPhone to magnify I couldn’t access this material.
Thankfully on this day I had my cane and Mum.
Navigating up more escalators, where I would hold on to the railings to keep me upright without feeling dizzy with all the light changes going from underground to ‘overground.’ Before you know it we have to find our tickets and tackle crowds to get through the barriers. There are often underground staff lurking by these gates to assist, on this occasion Mum walked us to a wider barrier /seen as an accessible barrier where a member of staff stood, however he shook his head and pointed to the other side where the other accessible gate was placed, I only knew he had pointed because my Mum told me, I couldn’t see his hands, his whole face just the smallest part of him! Apparently we had gone to the ‘wrong side,’ how is somebody blind supposed to decipher this?
Again, thanks to Mum she guided me to the ‘correct,’ gate and pulled me through the crowds.
Being outside in the bitter cold was refreshing after being underground for 50 minutes however it was a new challenge.
The hustle and bustle on the pavements and to navigate to the London offices of ATOS where our meeting was taking place.
On this particular day it was cloudy but bright.
I had delicate eyes from a headache the previous day the bright clouds didn’t help. The clouds reflect glare and my sensitive eyes do not cope well, even with protective eyewear it is challenging because, of course I am blind in the dark! Catch 22!
I feel the meeting went very well and was very useful to us all - we all always have something to learn from others.
I was particularly impressed that Dr McKillop considered my travel back on public transport and that he suggested we left before the real build up and madness of rush hour in London.
I was able to share with Dr McKillop a great deal about the challenges both the Usher Syndrome and RP community meet with on being assessed often by people who are not fully aware of the very real daily challenges we face, often because of how we present ourselves and how ‘capable’ we can appear and of course many of us are very capable but not without support and I mean the right support, coping strategies and understanding things the current PIP application form does not take into consideration.
I want to help, to educate and raise awareness of these hidden conditions to those carrying out PIP assessments and also enable people like myself to not fear these assessments which to date are to many very daunting, frightening in some cases - just the thought of an appointment often causes untold anxiety and distress and I understand why when so many are not awarded correctly and then have the added trauma of an appeal, some are even too afraid to apply and struggle on without financial assistance.
I am informed that in the case of Usher Syndrome alone 68% of people who go to appeal win their appeals which is a very high number, of the other 32% most cannot face an appeal and therefore miss out which is very concerning.
After the meeting wrapped up we headed back out into the cold. My eyes had to adjust from the meeting room, the reception and to the outdoors all lighting was totally inconsistent - these things are all very relevant to people like myself and in understanding RP these things must be taken into account.
It took a while for me to adjust and although we left before rush hour the sun was going down, winter sun is far brighter than summer sun and can actually be very painful on ‘RP eyes’ - more light adjustments. Sunglasses can only do so much and of course the darker they are the more blind I become!
At this point I am really pleased to be hanging onto Mum, she will be my guide on the way home - not only am I out of my comfort zone, I am anxious and in an environment I am not used to. This is also very relevant as I live in a small town, nowhere near as busy as a big city.
It was busier, creeping towards rush hour!
Not surprisingly the men and women sat in ‘priority,’ seats weren’t keen on giving up their seats. My vertigo was already playing up from all the light changes and now being underground in a moving tube, all I could do was hang on, lean against my Mum and close my eyes.
Thankfully although it was busy we did arrive back in Hounslow in good time.
Walking out of Hounslow West tube station at around 5:30pm it was dark. I am fully blind in the dark. Mum guided me to the car and helped me in. I sat in the front and folded my cane away, ‘until the next time’.
I felt both relieved and relaxed to be in the car with my Mum, also a huge sense of achievement at what we had done.
However once we hit the motorway, listening to some Motown, my eyes began to throb. The car lights and street lights, glare all around me me.
Looking straight ahead all I could see was blur and bright red lights everywhere and even in the more lit areas I’d glance towards my Mum who just looked a blur so distorted is my sight in these conditions, it really is very disorientating and then motion sickness kicks in.
Once again it was time to close my eyes and just let my ears do the listening, to the music and to Mum’s voice, Mum’s reassuring voice I know so well.
What would I do without Mum?
Truth be told, I have to do it without Mum sometimes, and I can - and do, however the stress levels are ten times worse.
As I demonstrated at the Offices of ATOS I manage because of the various tools and assistive technology I have access to, none of which are cheap to buy.
My Resound LiNX² hearing aids connect me to the Apple ecosystem - iPhone, applewatch, iPad and MacBook enable me to have a life and need to be replaced as and when necessary.
These items of equipment are in no way ‘flashy items’ but essential equipment to give me access to the things most can take for granted.
Mobility is the one thing these items cannot directly assist with however they do help with navigation and the enablement to use certain apps that enable when I am out alone with my cane or preferably my guidedog (hopefully my new match will not be long) we can get from a to b as safely as is possible.
This vlog was made to demonstrate the NEED for enabling assistive technology for those who need it:
So PIP is Personal Independence Payment, I’m sure you will see my ‘independence’ comes at a substantial cost and whilst I have a very serious and progressive condition I wish to live my life as positively as is possible and with appropriate support from the state, nothing more and nothing less.
We all deserve that consideration.
This vlog was put together in part on my way into London that day and thereafter using my ipadpro to demonstrate and simulate my trip.
I would say the visual field here is greater than mine but gives an idea of the challenges people with Usher Syndrome and RP deal with:
13th November, the start of my adventure to the other side of the world.
It had been just two days since Mum and I had come off a plane from San Fransisco (that's another blog!) Already we were heading off to Singapore before Perth, Australia where I was a keynote speaker.
I've never flown with Singapore Airlines, I had only heard good things about this airline, so I was feeling quite relaxed.
I was lucky enough to be escorted to the lounge at Terminal 2, Heathrow (all about who you know right!?) after chilling in comfortable chairs and sipping cocktails, we were finally called to board. Mum and I grabbed our hand luggage, I grabbed my cane and off we went, I felt excited at this point, I think Mum did too albeit she had repeatedly expressed her dread for the 12 hour flight to Singapore!
Approaching the plane we were greeted by smiling faces, and the lady hostesses all dressed in a kimonos even notified me when to step on to the aircraft and even took my elbow, 'Good start,' I thought to myself.
Having being seated, I scanned around me to get familiar with the surroundings that would be home the next 12 hours.
We had bulkhead seats, in premium economy so i had plenty of room and being the clumsy person I am these days I felt more comfortable even though I had been seated beside a couple with a young baby - “Don’t lean left Molly” I told myself, I ceraintly wouldn't have wanted to disturb, wake, knock or touch this little one! There was seating for two people and I think it would have been more appropriate for me and my mum to avoid accidents!
I soon noticed the TV screens were positioned on the wall in front, rather than folded and released from under your seats like with BA or Virgin, this was the next negative, yes, great to have extra personal space foot however the screens were of a distance that I could not see them very well at all, very blurred, never mind I thought, hopefully I will sleep anyway, best thing for me to do on a night flight as the cabin is so dark, a real challenge being deafblind and night blind.
Before take off I waited patiently for somebody from the cabin crew to approach to talk me through the safety instructions, give me clear directions to toilets and emergency exits. To run through the entertainment system and of course to show me both where the help button was and the light button but nobody came. I felt anxious.
This was a night flight, meaning the lights were out shortly after we took off, and already I struggled navigating the controls for the screen let alone the chair for light or to even locate where the toilets were. 'I could never do this without help' I thought. How sad did that make me feel? At 22, I don't want to feel like I'm reliant on another and even with company safety of each and every passenger is with the airline.
I am well travelled and my experiences on several other airlines are to board those needing extra time first, to then speak with me on a one to one and to provide information about safety, instructions on where everything is located in the aircraft and to check in with me from time to time. Several airlines would also provide items of safety equipment for me to touch so I’m as aware as I can be.
on board an aircraft is a very difficult environment I struggle to hear as well as see.
When the safety instructions occurred on screen, I noticed when looking up close there was a person in the corner of the screen signing the instructions, Of course this was not accessible to me with my lack of vision, and scanning around the screen I could make out what looked like subtitles but again, inaccessible to myself.
Having taken off and in the sky, the lights were considerably dim (I guess as it was 10:30pm at this point,) however this light I am virtually useless in, let alone in the dark. I was keen to just get my hearing aids out and try to sleep the hours away... As soon as I'd eaten, I then felt around for buttons on my seat to try and push the chair back in a more comfortable position to sleep. The buttons from I could see all had red lights on them... they all looked exactly the same to me. I tried asking Mum, and Mum was stuck helping me and struggled because of her own bulky chair being in the way. Though premium economy is considerably spacious, the actual seats and arm rests are quite compact making it hard for me or anyone else to lean across and help me. We eventually found the 'call,' button and got someone to adjust the chair for me, at this point you could say I was in a bad mood... 'Just sleep Molly,' I thought. I felt totally useless and extremely restricted when all I wanted to do was sleep.
Having eventually caught a few hours sleep, when I woke up it was pitch black, I was totally blind. I couldn't see Mum, I couldn't see my hands, nothing. Not to mention my hearing aids were out. Unfortunately I was suffering with a sore throats and ear ache to make matters worse and more uncomfortable. Next door to me were a couple with a toddler, this couple got a lot of assistance and even got upgraded as their TVs didn't work... 'At least you could see enough to distinguish that,' I thought. I couldn't tell you if my TV worked or not, it was simply inaccessible! I missed out on entertainment on a 12 hour flight. I closed my eyes a few more times to in hope time would pass. Eventually I woke up and it was lighter, it was breakfast time.
Every time the air hostess approached and gave the options of food and drink, Mum had to repeat more than once before I understood/ heard. I was really feeling quite dependent at this point and fed up. Despite continuously struggling the air steward did not offer further assistance.
I even had to ask my Mum where the toilets and exits were, everybody else got the instructions loud and clear at the start, and I did not even know where the toilets or exits were... This is absolutely unacceptable.
I asked my Mum not to speak to the cabin crew as firstly she is not my carer but my Mum, secondly, she shouldn't have to speak to them and thirdly, I did not want a fuss, simply access to everything everybody else has!
My Mum was very cross as she had advised of my condition on booking, at the airport and it was pretty clear, having entered the plane with my cane in hand the crew knew I had a disability - even with all that I was ignored.
The male staff member my Mum approached discreetly made her very angry, firstly stating ‘We forgot’ then suggesting in fact she should be responsible for me on board the flight. Completely unacceptable response.
Well yes, my Mum is my Mum, she is not trained in aircraft safety and accept that she was with me is no more responsible for me than any other passenger on the aircraft.
I am 22 years old and deafblind I would appreciate being treated like an adult and an individual and for one to just offer the reassurance and assistance where need be, especially on a 12 hour night flight. What if I needed the toilet and my Mum was asleep? What if my Mum was in the toilet and I needed help? It is not my mother’s responsibility.
Every passenger's safety on a plane is the responsibility of the airline, every flight begins with a safety announcement yet I was not considered, no thought was given at all.
The crew were very concerned about the passengers beside me having a broken TV, so much so they upgraded them, I couldn't see to know if my TV worked!
I was 'forgotten.'
The two adults to my left with the toddler received a lot of assistance and his parents were right there and fully responsible for him. Mighty special I felt!
If an elderly couple appeared on the plane, air crew would approach and speak with the individually or in any case just say, 'let us know if you need us,' they would not say 'you've got each other, help yourselves.' Contextually, this is the same as them placing full responsibility on my Mum.
My Mum is not trained in aircraft safety. Quite frankly she's a passenger on a plane also, and shouldn't have look after her 22 year old daughter for 12 hours and nor do I want her to.
After making a complaint to the ‘rude steward another man came and spoke to my Mum and was apologetic, however, the damage was already done.
I could not wait to leave the aircraft and when I did I was confronted with a woman who was there to ‘assist’ she advised me I needed to wait for her and other passengers needing assistance. I advised i wants to stretch my legs and I am glad she did as she was intending to take me through immigration which would have been completely unnecessary as I had a connecting flight again with Singapore Airlines so she should have known that.
I dreaded the next flight after such poor service, however, it would seem word had gotten across about my needs and this time my Mum had her say right away, knowing how upset I was from the previous flight.
This flight was the shorter of the two flights and thankfully my needs were considered.
I am not looking forward to flying with Singapore Airlines back to the UK, I believe there needs to be more disability awareness training particularly for those of us with hidden disabilities and sensory impairment on the whole it was not a pleasant experience.
After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed their ticketing practice and are now able to add both deaf and blind instead of just one disability, this should now make very clear to all staff the unique accessibility needs of any deafblind traveller travelling and to ensure the appropriate support /assistance is in place.
I was very pleased to see this on my ticket for my flight last month to Glasgow.
This is absolutely a step in the right direction however there is still work to do.
I have suggested to British Airways have all safety instructions and menu’s available on the iPads each staff member appears to have which would then solve the issue of accessibility for the majority with blindness, visual impairment or low vision, how simple is that? In my opinion there should always be braille copies of safety instructions onboard for those who need it, according to the people I spoke with on both recent flights this has not been the case for years. Virgin have braille on every flight!
All with blindness should always be offered a one to one to touch and feel safety equipment, without exception, this I am told is normal practice, however, it was not offered to me on either of my recent flights!
It is my belief that more can be done to make life much easier for those with disabilities travelling rather than the many hoops we have to jump through currently.
Technology is always the answer and it should be used to make life easier for both traveller and staff.
Going back to the staff iPad, these are already in use why not enable disabled travellers to set up a profile detailing their needs and upon booking a flight the profile can be added this would be particularly helpful to the deafblind and deaf unable to use a telephone but with specific accessibility needs.
The call to special assistance is usually a long hold then a staff member unsure of what is required, ending the call feeling anxious that needs are not catered for and from my experiences they simply do not get it right.
A personal profile could be set up simply and safely stored by the customer of by the airline with the permission of the customer and applied at time of booking the information then readily available and viewable to all staff and then the unacceptable excuses I was given about breakdown in communication from ground staff to air staff would be eradicated and all disabled people would know their needs would be met.
I very much appreciate British Airways have listened to me and I have seen evidence of this however I am concerned to hear several deaf customers have also had bad experiences recently so there really is work to do.
Hidden disabilities are often the most misunderstood hence the need for all round training.
I personally object to being offered a wheelchair in order to have assistance at the airport, why would I need that? I’d like to be escorted on foot through the quietest checkin and security, I can walk, it is just very difficult in busy unfamiliar areas with a cane or guidedog.
So British Airways thank you for changing your ticketing procedure as a direct response to my complaint and for the offer of compensation airmails or eticket but more importantly please consider my other ideas which will make a difference to millions.
My offer to present deafblind, deaf, blind awareness to your staff remains and I can be contacted via my website.
My next two flights are booked and not with British Airways however I will consider flying with you again to see if improvements continue to be made.
As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years.
A husband and four children comes with challenges but nothing out of the ordinary accept one child was born deaf and needed additional time and support.
The deafness diagnosis brought challenges within the family as along with looking after two young and active sons there was an array of appointments to deal with and rarely enough time in each day to get everything done.
Thankfully back then I had a husband with a flexible job and a very understanding manager, parents who were very hands on and an amazing support system in my area.
There were a few fights for support in school but nothing that wasn’t ironed out quickly.
Molly was born deaf, she knew no different and was a happy child who just wanted to be able to communicate she made parenting her an enjoyable challenge.
Each little achievement was rewarded with a smile that made all the hard work worth every single moment.
Deafness was not a misunderstood condition, there were audiologists, teachers of the deaf, social workers for the deaf, deaf clubs and events and all locally.
For me it was all about putting in the time, listening to my child, to the experts, lots of patience, oodles of encouragement and watching my little girl thrive and thrive she did.
As the rollercoaster went for us it was like a child’s ride deafness was ok, it wasn't frightening, there were lots of deaf children, it was doable, time, support, help and belief and we reached the end of that ride without tears.
A confident youngster achieving that of her hearing peers, great job.
The killer blow for me as a parent was the Usher Syndrome diagnosis, my deaf child would become blind, possibly the most frightening thought of all. We were all plunged into darkness, literally it was more like the ‘haunted house’ ride.
Few had heard of Usher Syndrome and if they had had not met anybody with it let alone worked with a child with it. There were no others with the condition in our area, the support required now was very specialist and it was not available.
There was panic, there was a gaping hole in support services and this hole would need to be filled by specialists direct from Sense.
Nobody was trained to work with Molly, more departments became involved all sympathetic often overly so but their way of supporting a young person very individual / unique in her needs was sadly very makeshift and dare I say trial and error.
It was the most stressful time of my life.
There were now more appointments than ever and very few local. Lots of travelling a very unhappy and confused child and nowhere to turn.
I remember being very thankful of a visit from a lovely lady from Sense who would work with Molly. Molly’s support team locally and put together a specialist report incorporating her needs.
One person who really could make a difference, a lady who made a huge difference in our lives, sadly Molly would only see her once every 6 weeks and yet her whole education relied upon her input. I am very thankful of that support however it wasn't really enough to educate not Just Molly but everybody that worked with her.
It didn't feel like it was enough and so here my tenaciousness took a hold of me, it was not ok to just make do, it was not ok to feel isolated by a condition, it was not ok that the many professionals around us seemed to more feel sorry for Molly than support her and enable her, it was not ok to just do nothing.
I set about learning as much about Usher Syndrome as I could, each appointment be it audiology or ophthalmology I would question, question, question, research online. I made myself known to Sense, I began networking to find others living with, working with or with knowledge of Usher Syndrome, I attended conferences. I became the ultimate pain in the proverbials - I was a parent on a mission and my child would succeed.
As it turns out I was very wise to do all of those things, along with working and nurturing my other children. I was prepared for the oncoming battles, every single one should be completely unnecessary if people are more aware and finally it would appear there is a way for this to happen.
I have fought with the education system, with the DWP, with Student Loans, with Occupational Therapists, with ATOS and why?
Quite simply they expect my daughter to be something she is not. They assume she is incapable of very much, they do not think outside of the box.
People in these departments are decision makers, they are making decisions that can change the lives of vulnerable individuals and yet they do not know enough about the condition and we cannot expect them to know everything about everything but they do need to listen to the experts, the person they are often assessing and to consider how and why a person functions the way they do.
When I tell you one ATOS doctor that assessed my daughter told us he had ‘googled’ Usher Syndrome the night before you will understand how unacceptable the system really can be and it is not good enough.
For those who have met my daughter, heard her speak, seen her do things, her passion about making a difference need to remember a few very important facts.
The only reason she can function the way she does is with the right support, the right technology, the right equipment an environment acceptable to somebody who is deafblind and a huge amount of effort.
My whole reason of putting this blog together is not really to talk about my life history but to indicate how hard things have been made over the years and how not everybody has the energy to fight these battles and in effect are let down by the system, however, after visiting Maneesh Juneja’s VR Workshop in London I see the way forward is right there.
Already there is VR of dementia so lets have VR of Usher Syndrome it would make the lives of all from patient to professional so much easier.
VR would bring empathy and understanding to those working in healthcare to the decision makers and to families all of whom would then be able to make more informed decisions and provide relevant support and assistance and an end to the never ending battles so many face.
Often described as tenacious and on occasion a ‘rottweiler' by Molly, the truth is all I want is the best for my children just like any other parent and so like everybody else I will continue to ride that rollercoaster until I can safely get off!
I had never heard of Usher Syndrome until I worked with a girl who has it.
If I’m honest I saw her come in and out with her guide dog and she appeared to be ok, never asked for help, seemed to cope as well as the rest of us.
I didn't know the girl very well but she was popular.
I feel bad admitting this but I was kind of suspicious of her as she seemed so ‘normal’ that I googled Usher Syndrome and was surprised to learn she was deafblind and that deafblind doesn't mean hear and see nothing which then explained why she spoke and why she has a guide dog.
I was really curious, I should have just asked her but it seemed rude, looking back I should have just asked rather than wondering how she coped.
Anyway, she and I became friends and I told her about my first impressions and how I found it hard to believe she hd a disability even though having a guide dog should have confirmed it and that I felt terrible about it, she told me not to, it was nothing new, she just wanted to get on with her life, be understood and wanted absolutely no sympathy, “It could be worse” she said!
Sadly it seems I am one of many who needed to be educated, my friend told me how she often finds the ignorance of others more challenging than her condition which really is very sad.
She told me she was used to this sort of thing and tried not to let it trouble her, even though it can be difficult.
I remember we met in the April and we got to know each other really well through the summer, she was great fun, we laughed a lot, she even laughed at herself when she tripped or had what she called “an usher moment’ not sure I would have been quite so jovial living with her daily challenges.
I learnt a lot from my friend, she rarely complained, just got on with life occasionally asking for help but nothing much.
However as winter came, the nights drew in she changed, was almost a different person.
I didn't understand why she always wanted to head straight home, never wanted dinner or even a drink after work, always seemed in a hurry to get home, was strange.
It seemed she only came out sociably if she was with a friend she had from school days, I didn't get it, actually felt a little pushed out so this time I confronted her and asked why she was so off with me, she was shocked I felt that way and sat down and explained why she behaved differently.
On top of the tiny window of vision is night blindness and bright lighting in shops, the changing lighting everywhere as well as bright summer sunshine which make her challenges even greater, I hadn’t considered any of that, again it was me feeling silly but it was so strange.
The happy go lucky person she was through the summer became like a Jekyll and Hyde, a Cinderella rushing home before dark!
How cruel is this condition?
Its completely misunderstood, I googled it and still didn't understand it properly because the only ones who truly know are those who have it and live with it day in day out.
Just wanted to get that in writing just in case it helps others understand.
For me the worst thing about having Usher Syndrome (or any disability I'm sure) is the constant battle for understanding.
A little bit goes a long way.
In my own personal experience I have spent more time explaining myself and my condition for people to say they understand and will support me, to later find out they have no understanding at all even though I'm still blue in the face from my explanations and therefore it gets put on their back burner.
When you have to repeat yourself and remind yourself on top of your daily reminders you have difficulty makes you feel degraded, embarrassed, lowers your non existent confidence and makes you less inclined to want to battle on just getting on with everyday life.
All I ask is, say what you mean, don't placate me or try to empathise when you have no intention of doing anything. If you have questions I will answer them.
There is nothing worse than false hope to be sideswiped or knocked back again. This applies to all walks of life, even down to the health professionals who we have to sit down with and 'prove' we struggle in order to receive help.
My aim here is not make you feel depressed but enlightened that the small gestures you might make to help someone. ...... MEAN THEM!
Thank you for taking the time to become more knowledgeable. :)
I will at every opportunity try to raise awareness of RP, Usher Syndrome and Guidedogs.
Well, here I am with some amazing friends and family( I'm the short one with red hair!!) getting ready to take part in my very first charity event here in Ireland to raise funds for the Fighting Blindness.ie.
It was an amazing but extremely tough challenge in the Glendalough Valley in the mountains in Co. Wicklow, especially as it was my first time partaking in such an event. Admittedly, I'm so delighted with myself for completing it and not even the sore legs can take the smile off my face. It was also a very important event for me personally, as while fundraising I decided it was time to reveal to everyone that I am losing my eyesight and that it is due to Usher Syndrome type 2. Only some of my close friends and close family knew beforehand, and even though they had given me enormous support and still continue to do so, it was time to make others aware. I wasn't diagnosed with Retintis Pigmentosa until March 2013, a few weeks before my 34th birthday. It was with complete and utter shock to learn of this diagnosis and I don't think i could ever forget that day, how could anyone really? After diagnosing me with RP, it suggested that it could be due to Usher Syndrome and I was urged to find out more about this condition. I left the ophthalmologist's office having heard his words but not comprehending what he actually meant. It was only when I got home and like everyone does, I 'Googled' it all. That's when it hit me, I'm going blind. When he spoke of my eyesight getting worse and worse but hopefully I might have good central vision for another 10/15 years, that's what he meant, I'm going blind. He talked of the possibility of gene therapy which looks promising but probably not for another 15/20 years, he meant I'm going blind and there's no cure at all. It was really difficult to believe that I was having to deal with going blind when I was already deaf. Kept thinking was this 'supposed god' having a laugh? Reading up on Usher Syndrome, I knew straightaway that it was what I had and more than likely it was type 2. It really was like reading about myself. Genetic testing later showed that I do indeed have Usher syndrome type 2 (USH2a). It was awful though, having to tell my parents that the hearing loss was in fact genetic (previously thought it was due to an infection) and that I am also going blind now. I know they did blame themselves for awhile but I'm hoping that with me being open and honest with others about it, it will show them I will be just fine. I came across Molly Watt during my first Google search on Usher Syndrome and kept thinking wow, fair play to her for all that she was achieving and not letting it hold her back. I really admired this girl and I still do!! I also came across Mark Dunning and the Usher Coalition, Megan Kennedy and many others, and the positivity and faith they had but yet being totally honest with how hard it can be was admirable. They all gave me the strength to believe that I can still achieve things in life despite it getting harder to do so. After a year and half of coming to terms with the diagnosis, I realised I didn't want to hide it anymore. I did hide my hearing impairment and I had left it to others to guess that I was so. But hiding going blind... no, that would be so draining and completely unnecessary. So I put up on Facebook the link to my fundraising page where I explained briefly what I had and how it was affecting me. It really worked out well as I had a lots of people talking about it and it really raised the profile of Usher Syndrome in my area which I'm delighted with.. Also by raising awareness of the condition I was hoping to get support and understanding in return, and that is happening. The amount of support I got was overwhelming! There is still some way to go though with raising awareness and making others understand how tough it is. But sure it's only the start of my journey with Usher and I intend to make it a posiitve one even if it does get a bit bumpy along the way.