Senses

There's so many factors throughout life that influenced my current attitude towards coping with disability. Over sensitivity was one of my biggest flaws long before I experienced the burden and stigma of disability, moving around from place to place always made me stand out as a stranger, someone who spoke and acted differently from the rest. It should have equipped when later in life disability made the struggle for acceptance so difficult but of course life doesn't work like that. In some ways ageing puts certain things into prospective, things that once might have caused embarrassment or offence no longer have impact though certain things such as bereavement or disability will always have an affect on sensitivity.   

When someone opts to avoid speaking to me or shows annoyance at having to make extra effort making themselves clear I sometimes feel tears of frustration sting my eyes or have that horrid feeling of being judged as stupid or worse.  Because I still have a little vision in one eye I don't feel so overwhelmingly self conscious when I'm with people I know well, I can let my guard down and ask them to sit closer so I can read their lips, being nose to nose with strangers is a different matter, it's invading space and very few people understand the reason why I have to be at such close range. I habitually make a show of confidence regardless to how I'm actually feeling and as far as I'm concerned it's important to make people believe I'm really confident it puts them at ease and makes them more likely to make an effort, well that's my theory though it doesn't always work.  But having confidence to explain to people about my hearing/vision loss and asking them to make allowance is one thing, understanding what they say without asking them to repeat umpteen times is totally different, it's horrid for me and whoever I'm attempting to communicate with.  I suppose it's because communication is the most fundamental part of human interaction and when challenged in some way everyone becomes uncomfortable.

The fact that I give talks to very large groups of children and adults and answer endless questions is only because I don't have to struggle to understand them. For anyone who doesn't yet know note takers (someone typing the dialogue onto one laptop enabling me to read in large font off another laptop), or dual finger manual or life savers literally, without them speaking to one stranger would highly unlikely, speaking to dozens at a time would be impossible.

Another factor that's played a huge part dealing with my confidence, over sensitivity and many other things was counselling.  A few years ago while at my lowest ebb, housebound and struggling to deal with my feelings, limitations and the changed social attitudes towards me I reluctantly agreed to some counselling sessions suggested and undertaken by the charity Deaf Action. Many people view counselling in a negative light not wishing a stranger to pry into their deepest thoughts, but to my surprise that wasn't the case at all. Initially the conversation was random and guarded on my part, to my surprise the counsellor didn't pry but let things flow without questioning. It was like switching a light on in my head, I'd answered my own questions and found my own solutions with a little guidance. Questions like 'why me,' almost everyone disabled or not will have asked themselves that at one point or another but it's defunct, there's no answer, dwelling on that  question is pointless I've known people to waste so much precious time beating themselves up on it.  I've come such a long way since those early dark days, counselling wasn't a cure for over sensitivity or disability but it did provide a stepping stone to coping, adjusting and dealing with things.

Certain frustrations never end and particularly the frustrations with society in general towards anything that's deemed outside a perceived normal and individuals who frown and pass judgement on anything they don't understand.

I'll never know whether it was age, counselling or those vastly different experiences I've had though life that made me more accepting about my disability. Perhaps it was a mixture of them all, who knows. I'd advocate counselling for anyone who has an issue they struggle to come to terms with. For me the important thing is today I can proudly say I'm comfortable with who I am and though being deaf and almost totally blind still hurts and always will I'm not bitter or angry, never think 'if only' and above all I've learned a tolerance and acceptance for the vast array of differences humans have. I'd never wish disability on anyone but do really wish people with full use vision and hearing could really listen, see and feel the world around them with the same sort of clarity that deafblind people often can. ..

The Necessity of Good Support

Making sure sensory loss people in general and  not just the deafblind, have access to the right help, know they aren't alone, and have full information about their disability is so very important to me. I shudder wuith horror recalling how it felt when I first lost use of  my main senses. Depression, hopelessness and desperate are good descriptions. The Health Service failed on several accounts to make the connection and distinction between single sensory loss and dual loss. They failed to offer advice or point me in the direction of the best support.  It was quite some time before a keen practitioner added two and two and referred me to Deaf Action. Despite the name, Deaf Action work tirelessly with the deafblind people as well. It's vital that Doctors and Health authorities improve methods of identifying deablindness and insure people are automatically referred to organisations such as Deaf Action.

Sever benefit cuts are on the horizon and will start taking affect next year

I recently attended a public meeting about cuts to the welfare system and prominently cuts that will have significant affect on disabled people. There's grave concern the message of just how individuals receiving Income Support, Employment Support (high rate), and DLA (low rate), will be affected. There's additional worry that the deaf and deafblind might not comprehend what's happening because of communication problems.

I was able to attend the meeting thanks to my support worker Zoe and the additional help of a Note Taker. They enabled me to follow the discussions and participate, more to the point they ensured I didn't miss vital facts and information that will affect me in future. 

Everyone in receipt of benefits including DLA and particularly low rate DLA will lose out. It's vital that people seek advice now and make sure they have someone with them such as a guide/interpreter and note taker (if used), at any future discussions about benefits. People can no longer afford to miss out on important information that will affect them. 

Deaf and deafblind are not always aware they are entitled to note takers for any sort of appointment, the same applies with emailing local Health Centres to make and cancel appointments. Few Health Centres will promote their emailing or automatically offer the service. It's necessary to request access by email and the more deaf and deafblind who do so the more likely it is to become common place to be offered emailing to the service. It's particularly useful for people with low level hearing and without a text phone.

There's genuine increased risk to the well-being and mental health of sensory loss people in light of benefit cuts. Surprisingly numbers of people committing suicide or suffering sever depression is prominently high amongst the deaf and deafblind section of society. Those with acquired losses and particularly males, are more at risk. It seems no one has the full data of totals but it's expected that forthcoming benefit cuts will create more health problems and leave the most vulnerable at risk. People already struggling to cope with the changes and communication problems of sensory loss will now face additional problems with benefits. 

My hope is that anyone reading this who is deaf or deafblind will seek advice and take comfort in the fact there are other people who understand how they feel, and there are organisations like Deaf Action who will help. I also hope anyone who knows or suspects a friend or family member as being deafblind will also help put them in touch with the right people...

Safety First

Today I'm nursing a badly bruised right knee, broken left big toe and some singed fingers. Constant bruising and the odd burn here and there is part of everyday life nowadays, the broken toe is less common but now I've had both big toes broken as a result arthritis is creeping in. Minor injuries are part of the life for people with restricted vision and balance loss, I'd imagine people with acquired loss are more susceptible. The combination of accepting need for greater care and adjustments to improve safety. The elderly don't like making changes even logical ones, I've met a few either with registered acquired dual sensory loss or those I've suspected to have it, in every case I've found that same stubborn reluctance to accept the need to de-clutter and make the home safer.

I'm not elderly yet though rapidly (and reluctantly), working my way through middle age. With a large family who pop in occasionally with the ever expanding list of small grandchildren and two active cats the potential for injury intensifies. Neither cats nor grandchildren understand that they can't leave toys laying underfoot, jump out from behind corners or sprawl out on the stairs waiting for me to pass. Thankfully only the cats do the latter but both are responsible for so many injuries.  Today's ones were the result of my youngest grandson and a Thomas the Tank rocker, it's not a tiny rocker but laying directly in the path of someone with extremely limited vision it might well have been as tall as a horse and I'd still not have spotted it. .

Adults are remiss too, leaving cups near the edge of the coffee tables, discarded bags and shoes. It's not deliberate thoughtlessness just another aspect of invisible disability and the inability to comprehend sensory loss. When senses decline gradually as often happens with acquired loss, the reluctance to acknowledge the extent of personal loss has an averse affect on the people closest to us, if we don't acknowledge difficulties seeing and hearing then others would never guess. Then there's a section of people, particularly the elderly, who experience the gradual sensory and don't even realise just how severely deafblind they've become. Friends and family miss the signs too. It's a catch 22 situation. 

For me bruises are frequent, broken bones occasional and burning food and self is a daily occurrence, Those pre cooked meals horrid and unappetising so the alternative is to cook hence the burns to me and everything else. It's easier to opt for fruit, some weeks I consume so much my vitamin levels must be sky high our ape ancestors would be proud of me. 

Explaining the reality of deafblindness is almost impossible and because my speech is pretty good and my battle to retain some independence is strong people can't always accept I'm deaf and almost totally blind. 

Making people aware that deafblindness has so many different effects and levels is equally difficult, they don't grasp how delicate sight and hearing are and how many things can cause the loss or one or both. There's so many unfair things I wouldn't wish on anyone and being cut of and isolated from the rest of mankind is one of them.   

Imagine you woke one morning and discovered you couldn't See or Hear Anything...

You knew there was electricity but you couldn't use the PC, ipad, texting, phone, TV, Radio, and had no idea if anyone was around you. You can't feed yourself, tins and packets are just shapes with no indication of what's inside. Your cut off from everything with no way out and completely isolated.

Far fetched?

No.

It happens to thousands of people.

Now imagine how you'd feel. Panic, helplessness, hopeless, isolated, frightened. You'd probably tell yourself you couldn't cope, scream inside and desperately want a chink of light or sound, anything at all to bring a little comfort and sanity.

Fortunately I've not experienced the total utter complete loss of both senses but it's inevitable. I've had time to accept and adapt but those around me can't possibly tell how much of my senses I've lost.

I suppose the notion of being reduced to an alien state of isolation evokes pity and sympathy from others but those things are worthless and don't bring relief or comfort. There's thousands of gadgets to enhance low sensory ability or compensate sensory losses, however costs leave far out of reach. One particular new invention would make enormous difference to many people including me. A glove that translates hand touch alphabet and enables deafblind people to send and receive text messages.

It's only a matter of time before someone invents a sensory gadget that alerts us to things laying in front of us or dangerous heat Etc. Until they invent these things and remember disabled people have equal right to participate in normal life and cost these items realistically, People like me will continue to suffer burns, bruises and broken bones.

Meanwhile my collection of scars bruises and burns continue to grow to such an extent I'm considering auditioning for the role of “Bride of Frankenstein.” They'd save a fortune in the make-up department!!

Sticks and Stones

Sometimes no matter how much determination we have certain things are impossible to achieve. That's been the case for the last few weeks when I've tried to write more than a couple of sentences at once. The vision element has been more unreliable and unpredictable of late and even at extremely close range I've been unable to read lips. Worse, when visiting schools I've struggled to distinguish words written in the largest of fonts by the ever patient note takers. I've had no alternative but to use dual finger manual on occasion. Yes it's a wonderful thing enabling conversations to be constructed but I've got this mental block against it viewing it as the last resort, the last vestige of communication with other humans. I should be heaping praise on whoever invented finger spelling but I've fought such a hard battle to keep going and keep up the self pretence that I'm just a regular part of society and not a separate entirety.

Fighting to make myself seen, heard and included keeps me going, accepting the need for dual finger manual in real terms is like admitting defeat and losing the battle. I'm not a defeatist. Or rather, I'm not ready to give in to the increasing fogginess and darkness.

I know deep down I'm more fortunate than some, I've got my voice and golly I know how to use it. Deafblind people don't always manage to retain a good voice and those who do are usually withdrawn and lack confidence to speak out. They need people who can speak out and understand exactly what is needed.  It's a never ending battle to bring deafblindness to the attention and get the same recognition of other disabilities. it's remarkable that some people can retain a good voice when deafened yet others cant, I'm thrilled when people tell me they didn't know I'm totally deaf, its a huge complement. Pausing to recall how words sound can be hard work though generally once you've heard words you can retain the memory of specific sounds. Mind you there's some words I've forgotten the sound of and lots of dialects with sounds I've never heard, it makes the task of  trying to understand strangers difficult for any deaf person. Then there seems to be a whole new language in today's society, words to describe something are used in totally unconnected context.  

That said my own habit of mispronunciation can have hilarious or embarrassing results,  perhaps I need to write my own dictionary of  'language according to Beth.' 

It hasn't all been doom and gloom over the last few weeks. I met some fantastic ladies from Deaf Acton, an amazing charity that's spreading out and representing deafblind people. They invited me to give an interview and shoot a short film about deafblindness, they've been pulling out the stops to help me set up my venture of giving independent talks on dual sensory loss and communication. It means the world to me having that additional support and encouragement.

To date I've been using a shortish red and white stick it's more of  symbolic than a real aid, so recently the doctor decided to upgrade me to a long white stick with a rubber tip. I was surprised to discover you need training lessons before being let loose in public with them.

There's a technique on how to hold the stick and move it about for best assistance, obviously there's also a technique to make sure you don't make massive sweeps with it which could well trip up unsuspecting passers-by. I thought learning to use the stick would be a doodle but not so. An instructor took me to a deserted building with lots of hallways and steep stairs, outside the building was riddled with twisting paths and endless concrete steps without hand rails. I've mentioned before that dual loss of senses can and does affect balance and my balance is particularly unstable. After 40 minutes of going round the inside and outside of the building, up and down stairs, the instructor frowned, shaking his head sadly he said: “Can't help thinking you'd be better off with the white stick in one hand and a walking stick in the other!!”

A well known phase from a former Wimbledon champion came to mind; 'You cannot be serious man!'

The final part of the test was to put on a pair of blacked out glasses and try walking with the stick. Strangely, it seems I can walk a straighter line totally blinded than I can with my tiny bit of vision.

After an hour of prancing about I asked how I'd done, he sighed and shook his head. “I'm afraid you failed, looks like you need another couple of lessons.” Learning to drive was easier!

Being the mischievous person that I am, I didn't tell the instructor how I'm looking forward to qualifying for the white stick. I'll be able to brandish it around and clear my way through crowds, even better I'll wave it in front of me to stop the traffic so I can cross roads, slowly walk half way across then stop and turn back again. Oh the revenge on all those impatient drives who currently don't stop to give way to my little stick. Ha!!