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Items filtered by date: December 2016
Friday, 09 December 2016 18:57

Usher Syndrome / Christmas Challenges

Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep the next bit short to get to the main point of this blog. I wrote a more in depth blog about my full diagnosis on this site roughly a year ago but here is just a quick summary.

I was diagnosed with Retinitis Pigmentosa when I was 5 years old and can never really remember being able to see ‘normally’. As a kid I always found it very difficult to see in the dark and always bumped into and tripped over things out of my field of vision. As I got older my eyesight slowly got worse to the point where it started to affect me in the day. My central vision was not an issue and I didn’t need to wear glasses. Instead it was the lack of peripheral (or side) vision that started to give me problems. Not seeing things that I wasn’t already looking at made getting around a little harder than it would be for someone with normal vision.

When I was 16 I started to lose my hearing and got hearing aids fitted at the age of 17. It has slowly been getting worse since then and I am now severely deaf. Although hearing loss is not a linear decline, by the way it’s going I will probably need a cochlear implant within the next 5-10 years, maybe even earlier. To put the icing on the cake, I had a retinal detachment back in 2012 which means I have practically no useful vision in my right eye anymore so I rely heavily on my left eye which can cause eye styes.

Now to the main point of the blog, how does Usher Syndrome affect me at Christmas? Well I guess I’ll start by saying that I love Christmas time. Getting together with your family and friends and having a great time is what makes it so special (and a few presents of course). As for my Usher Syndrome, the time of year doesn’t automatically change how much I can hear or see, but there are several factors that make Christmas, and winter in general, a harder time for me (I didn’t mean to make a rhyme there but it works).

The first difficulty that all of those with RP can relate to is short days and long nights. Longer nights mean more time in the dark which is exactly what causes the most problems. Although it’s not strictly related to Christmas as such, I have had a lot of trouble recently at university since all but one of my days finish after 5. By this time it is pitch black and I must walk from my lecture to the bus stop in order to get back to the city centre of Nottingham where I live. The trouble is, the area around the bus stop is not very well lit and there are lots of people that are scrambling to get on the bus. People come from all directions and often walk in front of me or stop without me seeing them. In the last month I must have bumped into roughly 20 people just near this one bus stop! I often get some nasty looks even though I’m extremely apologetic, especially from girls. I tend to forget about it until it comes to that time of day again, but I just have to go and accept that I am probably going to have to apologise a couple more times. As well as the problem at uni, it can sometimes be an even bigger issue when I’m out and about in the city. The general population (in my experience) do not tend to be quite as forgiving as most students and I’ve had a few situations where I’ve almost been punched because I’ve accidently walked into someone in the street.

I also spend a good portion of Christmas on nights out with friends and family. Being in dimly lit pubs and dark clubs has always been an issue no matter what time of the year it is. In this case though, I actually think the lead up to Christmas makes the majority of people more relaxed and forgiving so they don’t seem to mind as much if I bump into them or accidently spill their drink. The first thing I do is pull out my ‘sight impaired’ card from my wallet so they know I didn’t mean it and wasn’t just being a *insert rude word here*. I then offer to buy them another drink, which most refuse funnily enough. I assume they feel partially responsible for bumping into me and people often apologise to me instead. There have been occasions however where I have spilt drinks down people and they have had to be held back by their friends whilst I try and explain my condition.

Although most of my Christmas difficulties come from my eyesight, there is one major thing that affects my hearing during winter, colds. I’m not the sort of person that gets ill all of the time and I only really catch them during the winter when they are most prominent. As I write this blog I am still recovering from a cold which caused my hearing to become extremely difficult. Many people suffer from slight hearing loss due to a cold as your Eustachian tubes can get blocked and infected. This causes a negative pressure in your middle ear which means your ear drum cannot vibrate properly. This effect is amplified for hearing aid users and here’s why. For a person without hearing aids, even if the ear drum has negative pressure acting on it from the inner ear a sound can still cause it to vibrate with relative ease due to there being a nice big hole on the other side (aka your ear hole). For a person with hearing aids this hole is plugged up nice and tightly which causes a positive pressure on the other side of the ear drum. This doesn’t allow it to vibrate very well at all which makes it much more difficult to hear. I guess a good analogy is when you leave the back door open. It is much easier to slam a door inside due to the air being able to escape out the back than it would be if the back door was closed. Even better, if you didn’t have a cold it would be like slamming a door when you have the windows and doors open, they slam themselves!

I’m sure there are a few other little things that can cause me a bit more trouble during the Christmas period but they definitely do not outweigh the good times I have with my family and friends!

Wednesday, 07 December 2016 07:23

A toolkit to enable deafblind to access the world

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.

Please share..

Monday, 05 December 2016 17:54

Singapore Airlines - Never again

I blogged about my not just poor but disgraceful treatment by Singapore Airline cabin staff on 13 November during my flight, Heathrow to Singapore.  I very unpleasant start to travel I had looked forward to for months.

The experience was so bad I put in a formal complaint to the airline who did respond apologising for their inappropriate treatment of me as a traveller with specific documented needs and also for the inappropriate way a male staff member spoke to my mother, suggesting it was her job to ensure my safekeeping and safety onboard the flight.  

The fact is I sat on a Singapore Airlines plane for 13+ hours not knowing where anything was, that includes, safety information, toilets, no access to entertainment system, no access to assistance at all.  The 13+ hour flight was a nightlight, I am completely blind in the dark and as a result of aircraft noise, little hearing and no access to lipreading my experience was not just horrible but uncomfortable and unpleasant and this was acknowledged with an offer of 100 Singapore dollars as what, an apology or compensation for their terrible service, either way a complete insult and not really the point.  Clearly the principal far more important.

My travel agent was informed and both they and Singapore Airlines said they had learnt from my complaint and that my return journey would be perfect, everything would be dealt with to insure my needs considered completely.

So here we are travelling back from Denpasar, Bali.  Check in 3 hours before your flight they said.  Three hours before my flight they had already allocated seats for the Denpasar to Singapore flight and also the Singapore to Heathrow flight and guess what WRONG again.

Seats allocated were not appropriate, once again I would not be in a position to see or hear the cabin crew.

My mum contacted the travel agent in the UK who suggested we deal with the matter in Singapore, the people at the gate in Denpasar advised they would forward details of the seats required on the Singapore to London Heathrow leg - either that was not done or Singapore Airlines have serious communication issues on the ground.

Our travel agent was also horrified by the treatment on the outbound flight and I'm told has taken the matter up with his Singapore Airlines rep, repeating my thoughts on what an insult it was to offer 100 Singapore dollars as an apology or compensation, I should add that money could be spent only with, you guessed, Singapore Airlines so insult and completely invalid to me as I’ll never travel with them again.

I suffer with anxiety at the best of times and my stomach was tied in knots, I couldn't breath and went into meltdown at the airport in Denpasar, my Mum was at my side assuring me it would be okay and that the staff had promised to provide a supportive service on the way home, sadly it was not that way.

On arriving at the check in gate the young man on the gate suggested it was our fault the seats were not right and that Singapore Airlines do not attach any priority to people with disabilities - that is nice to know!

After the most embarrassing show of ‘We got it wrong’ having staff running back and forth to the plane asking people to swap seats, none wanted to so we boarded the plane virtually last.

I found it very hard to hold things together, I was so upset, it didn't feel like I had just had a wonderful holiday, I felt anything but relaxed.

Clearly the staff had been briefed to speak to me which would have been nice had I not felt like everybody was looking at me and listening to the conversation, I just burst into tears and wants to be left alone.

Yes this time I was told about safety and emergency procedures but to be honest I wasn't listening, I was far too upset.

I know the flight attendants were trying to help but the damage was already done.

Another 13.5 hours of seeing and hearing little or nothing, I decided to try to sleep in the hope I’d open my eyes and be home.

No such luck, closed my eyes and dozed on and off anxious, I might knock somebody or something, I just wanting to be anywhere but on this aircraft.

When the lights come back on in the cabin, about 3, 3 and a half hours from home I could see enough to look around the cabin, I could see no reason why my needs had not been considered and why I hadn't I simply been allocated appropriate seating with my Mum in a row of two where I didn't have to worry about knocking into or disturbing anybody else, I might even have been able to relax and possibly got some proper sleep.

I also could not see why I was not put in the bulkhead seats considering there were places for basinets but no babies, just a row of 3 men and a woman.

How can it be that this airline considers it is ok for babies to be on a bulkhead in close proximity to emergency exits and yet I would not?  Makes no sense to me at all.  A baby in arms would certainly be a hazard in the event of an emergency exit, would it not?  I also scanned around when my mum escorted me to the toilet that the rows of two on either side of the plane did not have anybody with special needs, people who could have easily been more comfortable in the seats I was allocated, seems its true, Singapore Airlines does not give prior consideration to those like myself with very specific needs.

On scanning the cabin further I couldn’t help but notice the detail this airline go to symbolise Christmas, lots of decorations around the cabin, more concern for look than that of passengers with specific needs! Nice!

I cannot make head nor tail of this organisation, I simply asked for ‘Reasonable Adjustments” not because I’m difficult but because I want to feel comfortable just like everybody else.

Sitting in a front row means a staff member can stand in front of me so I can at least try to lipread, be independent rather than staff having to reach over to touch me to get my attention then repeat themselves over and over, making a spectacle of me in the process.  I don't mind being touched but there are people who absolutely would be insulted, this is something else the needs to be considered.

I do not know what the answer is to travelling on a plane if, like me. you inform your travel agent and the airline of your needs and this sort of thing happens, what else is there besides do not fly at all!

The staff on my flight were very good, it shows just what they can do, sadly for me it was too little too late.

Thank you to both Elaine and Michelle for all your help on SQ306, you certainly tried.

To finish up, Singapore Airlines have demonstrated me just how thoughtless and incompetent they have been when it comes to travelling as a deafblind person and I’m sure will be happy to learn I won’t ever fly with them again.  Expensive tickets to be treated badly.

 

 


  

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