NHS Scotland and Discrimination

I will defend the NHS to my last breath. My praise for GP's, nurses, consultants, even the porters and all the other vital people knows no bounds, I owe them all debts of gratitude that can never be repaid. Sometimes despite best efforts things go askew and many faults exist within NHS but the dedication of almost all medical staff is not one of them. When I see our wonderful health service under threat I cringe with horror and tremble at the thought the health and safety of myself, my family and everyone else dependent on this wonderful service would be placed in jeopardy if the government continued stripping away the fabric.

Personally I've always acknowledged issues exist within NHS, but the problems lay not with the dedicated the medics, the blame lays firmly in the hands of administration, managers and decision makers within the health service. I've seen this proved time and time again. If I as an individual can truthfully point fingers at repeated cases of bad management then I remain confident I am right.  Those familiar with my blogs or Facebook or Twitter with also be familiar with my complaints of discrimination and lack of reasonable adjustments and access to the most basic services and the most vital ones incuding NHS.

The lights are on but no one is home. 

Perhaps that seems a cruel assessment of managers and administration within the health service, but it doesn't even come close to the feelings of anger I have towards these departments. Don't get me wrong some of the receptionists at my local health centre are friendly and approachable. I say most because there's always the odd one who'll shake her head disapprovingly if I stretch up of tiptoe to try and get a closer look at her mouth when she talks to me, she'll give a hefty sigh and look extremely annoyed if I ask her to repeat herself. Fortunately nowadays I rarely attend the health centre without the support of a guide and notetaker. Much to  the irritated receptionists relief she's spared the process of head shaking and hefty sighing. Well at least with me.

Unlike England it seems Scotland doesn't recognise a secure web system to allow deafblind and some disabled people to use internet email contact for medical advice and prescriptions. That said, I know of a couple of GP's with small health centres that do make their help and services available to patients.  My health centre has a web page where repeat non urgent prescriptions can be ordered. If you happen to need an urgent prescription...You guessed it...phone. Not their problem if you can't use a phone or don't have anyone on hand to phone.  After a two year battle with the health centre management they conceded and gave me their email address but with the strict instructions/ "Only for use in making or cancelling appointments nothing else." They refused to relent to any other concession. They'd also warned "We don't check emails frequently." An odd statement considering they'd given the email address to me to make or cancel appointments.  Despite the fact my wonderful support worker is only paid to support me for 3 hrs a week, she tries to make herself available as often as she can. I know she has a family and other commitments, it would be extremely unfair to expect her to be on hand 24/7.  I live alone. The health centre is aware of my limited support time and my living situation. 'Patient awareness' and 'consideration' seem to be alien words to my local health centre management.  Before I had support I'd been placed in a terrifying situation of feeling really ill and having no means at all to contact the Health Centre, they knew of this too which makes their attitude even more appalling.  They have a web page where patients can request non urgent repeat prescriptions. Anyone requiring an 'urgent' prescription must...wait for it...phone a request.

Breaking News!! Deafblind woman living alone without specialist equipment makes telepathic breakthrough in contacting her Health Centre. 

The Health Centre took stupidity and disregard to new levels recently. On Tuesday 4th December I looked up their web page intent on making a regular repeat request. The web site was down. It was down on Wednesday and Thursday too. Finally on Friday 7th the web page was up and I sent the request. "Allow 48 hours" is the usual time for repeats. On Wednesday 12th I got hold of a family member who went to collect the medicine from the local chemist. It's less than 10 yards from the Health Centre. No prescription there. The medicine was for 'mild heart failure' I was almost out of medicine.
I awoke early the following morning and struggled to see, I'd developed an infection in both eyes. The blind one didn't trouble me much but I'm almost paranoid about losing the last of my vision in the other eye. I knew what was needed, I'd had the same problem before. No one was on hand to phone the health centre and I knew the infection would get worse without treatment. I emailed them using the account they had given me. No reply. Later on that afternoon I emailed them again saying how urgent the issue was and that I was in pain. No reply.  The following day Friday. My support worker contacted me early in the morning via Facebook to tell me a Doctor had phoned her to say he would issue a prescription to be collected immediately.  It was late afternoon before I could get hold of a family member to go to the chemist for me. They came back empty handed. The chemist hadn't received the repeat prescription or the 'urgent' one!!
 Over the next hour and a half the family member made four more calls to the health centre and two to the chemist. At 5.15pm the chemist announced it had both prescriptions.

What would have happened if I hadn't managed to get hold of a family member to phone up and run back and forth to the chemist?

ANGRY, FRUSTRATED, HUMILIATED, ALARMED and most definitely DISCRIMINATED against. I had specified the words 'urgent, painful. restricting my very limited vision.' The Doctor acted immediately as soon as he was notified. It took over a day to notify him. They didn't notify me that the doctor had been informed. A distance of less than 10 yards from a chemist. A health centre with at least 10 secretaries, receptionist and management. Have I been wronged? I'm my opinion yes I certainly have. Shame on the administration to treat someone who cannot access the things everyone takes for granted in such a despicable way.  Yes I will always defend the NHS and yes I'm quite aware that administration is a necessary part of the system, but nothing on earth will convince me that was not bad administration and management or convince me the attitudes of both are discriminatory and prejudiced...

Inclusion

Don't you just hate it when someone decides to be a party popper. But while your plotting and planing the holiday festivities, working on family get together's. Deciding who is coming to dinner and who isn't. What to eat. What parties to go too and what to wear...Out there somewhere close by will be a needy lonely person. maybe they don't have family or someone to care. We can't help everyone as much as we'd like to and its very sad to think of sad lonely people.
But wait a minute! 
You may well have a lonely person sitting right in the midst of your celebrations!!

Grandma, Grandpa or old Auntie sitting at the end of the dinner table ignoring everyone like a cankerous old fart. Then later sitting apart from everyone else in the chair in the corner, nursing a drink and refusing to join in family activities.  Everyone knows the elderly are less sociable don't we?
But are they really less sociable, is it really just old age and moodiness. or could it be they have a level of acquired deafblindness.
If they have they may not even realise it, loss can be gradual over time, so gradual you don't even notice how little you can actually see and hear. Of course even family mostly don't recognise the signs and sometimes doctors don't either. You could always try a couple of little tests to ascertain if they are hearing and seeing sufficiently, if you have any doubt at all suggest they see a doctor or consultant and make sure the doctor is aware of the fact you suspect dual sensory loss.  Maybe grandma, grandpa, old auntie or uncle feels left out because they can't follow the conversation and can't visually keep up with things.
Be aware!!
The majority of all deafblind people are over 50, after then senses deteriorate rapidly especially if a person has suffered problems with vision or hearing throughout life. They don't need to have suffered a loss of both to be effected by loss of both in later years.

The young can also be affected. Some have hereditary or genetic dual loss. Some have usher syndrome  Yet others contracted meningitis or the mother came in contact with Rubella or other viruses. Young people today are unaware that the sexual disease Herpes can also cause deafblindness in unborn children.
Like their older counterparts, younger deafblind people also suffer isolation and can easily be forgotten in groups and gatherings. most deafblind people regardless of age prefer one to one conversation as its impossible to follow regular conversation in groups.

If someone has or you suspect they have dual sensory loss take time and a bit of effort to include them. NEVER, ever speak to someone with a hearing loss with the light BEHIND you. If you couldn't hear do you think you could read lips or see sign with the light blinding you and blotting out the person your trying to understand? Be considerate,

It's annoying and time consuming to repeat second or third hand snippets of conversation, jokes or antidotes , but taking the time to do so and include someone with sensory loss will make them feel involved and wanted and above all make them feel part of the festivities.  We can't go out of our way to help all the lonely isolated people out there. But we can make extra effort to go out of our way to make sure our nearest and dearest have the very best of times with us.

   

Candy Cane

I've not reached old age yet and in many ways I'm pretty fit, the family come down to visit and I see my beautiful support worker for a few hours each week. Yet the sad truth is I can spend days and nights on end without speaking to another human and I suspect I'm far from alone in this respect. Without the use of phones and without the option of nipping next door for a chat with the neighbours, or popping up to the shops and bumping into old friends, opportunities to converse are incredibly restricted. being the life and soul of the party was never my scene but I've always enjoyed a nice little conversation about something or nothing. Giving talks at schools and organisations brings me back to life, I can talk the hind legs off a donkey figuratively speaking. Communication is therapeutic and my contribution towards educating people about deafblindness allows me to clear some of the frustrations of isolation.

Recently I attended a review for DLA accompanied by my support worker and a truly marvellous note taker who's helped me in an endless amount of talks and general appointments. Having to reveal personal aspects of my life and limitations to an official who knows nothing of me is embarrassing, I prefer to be seen as a survivor and show bluster to the world, I suppose it's a natural protective mechanism and that was my attitude at the DLA review. Review questions don't cover the majority of disability issues, there are people with hellish disabilities who are limited in so many area's yet can still go to the toilet unaided but somehow that seems irrelevant in the great scheme of things. The review was an emotional experience and I honestly didn't care if the DLA award would be affected or not, I didn't want to seem like a helpless hopeless creature begging for financial assistance.

I've finally got my new white cane which is now decorated candy cane style with red tape. Red and white symbolises deafblind and distinguishes between the white for single sense loss. Most people only put two red circles on the canes but I like to be different. The cane is quite long and actually a bit heavy, there's a special sweeping technique to using it allowing reasonable space at either side of me. The possibility of hitting someone passing by worried me but the RNIB instructor said “don't worry about hitting people it's their fault if they aren't watching where they are going” Yes well...a fine statement to make to a person who spends most of the time apologising to lamp posts and mannequins when I accidentally collide with them thinking them humans. It's not just because of vision loss, it's disorientation and bad balance which are often the result of dual sensory loss.

Being alone so often means I find myself spending a large amount of time talking to the cats, lots of people talk to their pets for company so I don't think I'm totally potty. There's double reason for it in my case too, it also helps me practise at keeping my voice and tests my word formation. Thank heavens the cats can't talk back to me though, they'd most certainly tell me to shut up, that's one plus about being deaf. If ever the cats did answer I wouldn't hear them unlike anyone else who'd most surly have a heart attack!

Occasionally one or the other of my daughters will drag me out clothes shopping with them, can't think why and I can't say I enjoy it. Unable to make out fabric colours, sizes or prices I'm left to hang around for ages  trying not to look conspicuous. Of course they move from rail to rail examining this and that and sometimes forget I'm with them and it annoys and flusters me at times. But there are times when I get my own back on them.  I'm small and petite so I'll deliberately hide between rails of clothing, it makes me chuckle thinking of my adult daughters stopping assistants and saying “Can you help me I've lost my mum!!”

Spring Cleaning

The tradition of spring cleaning dates back thousands of years, even in this modern age of minimalism and a million and one cleaning aids people still get the urge to throw off the gloomy shackles of winter and welcome spring by freshening the home. There was a time when daily and seasonal cleaning was something I took pride in, I relished the challenges of balancing housework, motherhood, work and hosting our famed dinner parties. Today the picture is completely different. The family has grown and spread wings, dinner parties are a thing of the past and basic cooking is hazardous as my burnt hair proved and cleaning...where do I start.

Like so many things in life cleaning is dependent on vision, limited vision means you can't see dirt, but it doesn't mean your unaware of it. It's impossible to retain high standards or even reasonable standards without assistance, someone to point things out and help do the things we can't do. Unless someone tells me there's cobwebs or stains somewhere I've no chance of clearing them away, everything from ironing, operating the washing machine, mopping a floor cleaning windows and washing dishes is hit and miss. Forget household repairs and decorating, unless there's someone on hand to do these things or enough finance to pay someone then they can't be done. Most women are versatile and handy with a paintbrush, needle and thread and can hammer a nail in, I used to, I can't now. Simple things like mopping the floors is can be dangerous, wet slippery floors cause injury even to the sighted. Hovering the carpets is hit and miss too, I've lost track of the times I've 'thought' I was hovering only to discover the machine had come unplugged or I hadn't actually switched it on properly, when your holding the hose of a hover you don't 'feel' vibrations so lack of hearing and vision affect that sort of thing. 

When people live alone it's even more tricky, I think it's wrong to expect families to be on hand a lot. Most have young children don't live close by and demanding jobs too. It raises the question of how the system can help and should it. Well yes, no one chooses disability, what's the alternative, leave people to rot or put them down as an unnecessary burden and expense. The old adage "you have to walk a mile in another man's shoes" comes to mind.  There's no gratification or pride in feeling your a burden to anyone and disabled people often feel that, we don't need the rest of the world to make us feel it too. It's unrealistic to expect to much from others and I honestly don't and there are times I loath my inadequacy even within the home. It's very true that retaining a sense of humour and the ability to laugh at self, life and circumstances makes all the difference in the battle for survival. Somehow I can always laugh about the streaky windows, blotchy paintwork, going out with a hole in the behind of my slacks because no one thought to tell me about it, burnt frizzled hair and all the rest. Better to mock ourselves than mock others. 

Realistically there's a need for mental organisation and a place for everything but it's not always that simple. I've spoken before about difficulties for some families understanding changes and restrictions of acquired dual sensory loss. Females of any age love make-up, perfumes and toiletries, though grown my daughters are no exception. My home is often the gathering point when they decide on get together nights out and it inevitably means chaos, particularly in the bathroom. I can't decipher labels, so knowing the exact position and location of toiletries prevents disaster. In theory. Enter stage left – A group of sisters and a few friends vying for the bathroom to get ready. I've washed hair with conditioner or shower jell, cleansed my face with fake tan, used hairspray under arm mistaking it for deodorant and cleaned teeth with a tube of emulsifying oil thinking it was toothpaste, it could've been worse. Thank heavens no one suffers from hemorrhoids!!

Laughter aside, there's little or nothing about daily life in or outside the home that isn't hazardous or extremely difficult to do for people in my position. Bit by bit independence slips away like the receding tide and no amount of effort can prevent it. All the confidence in the world can't change the sense of fading away into an empty void. I don't think it's cruel or unfair to say people born deaf and blind can't possibly grasp what's missing in life, parents, teachers and helpers show them how to adapt and interact within specific boundaries. Experiencing the familiarities of life and natural abilities gradually erode is on a different level and the ageing process doesn't improve anything. 

The ability to write down my thoughts and share my experiences knowing that out there people read them and try to understand means an awful lot, it's a sort of therapy. In some respects deafblindness is like a life sentence of solitary confinement in a black cell. It's not possible for anyone to unlock the door and throw away the key completely, but it is possible to learn how communicate and include people...

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!!

Making a Difference

There's a few characteristics I've been fortunate enough to inherit from my late parents, persistence and dogged determination are two but sometimes even the best determination falls flat. I've always had a huge amount of admiration for Helen Keller. That great American woman struck down with meningitis or scarlet fever as a small child, the result was loss of sight and hearing rendering her mute. The story of Helen is astounding not least because of her strength, passion and and determination. She went on to become an icon of survival and overcoming odds and representing so many deserving causes. What set Helen apart from most deafblind people was the fact she had the backing of an influential family with friends in high places, including Alexander Graham Bell and President Cleveland. I suppose my point is it doesn't matter how much desire or determination deafblind people have, nor what level of intelligence they possess, without support, equipment and finances they are doomed to become inconsequential and forgotten.

As more and more services come under fire from cuts and charities struggle with reduced means to retain quality of assistance, more and more people risk being left out and even more vulnerable. The equipment needed by many deafblind people tends to be a combination of deaf and blind aids, those with a small amount of vision but no hearing often prefer electronic note takers to the alternative of dual finger manual. There's some highly acclaimed deafblind people today, many suffer from Usher Syndrome and while for some the condition means sever hearing loss and tunnel vision, for others it means they have a slightly better chance of achievements. I could be wrong but from my personal observations employment of deafblind people, even amongst deafblind charities is those suffering from usher Syndrome who have retained that little extra bit of hearing and vision are more likely to find employment. In contrast deaf and blind charities seem to employ a significant number of deafened or blind people. A lot of the problem with employment of deafblind is the additional help and equipment needed to allow them to conduct a job successfully. It adds up to a huge amount of money to employ just one person and so opportunities are few and far between for a deafblind person to remain a contributory part of society.

I've been involved in a project aimed at helping deafblind people regain confidence and a place in society, but funding is running out and the future of the project is in doubt.

Using what I thought was good initiative I bombarded various organisations to allow me to continue individually some of the work to project had undertaken. I felt incredibly proud when I managed to secure a few ventures that will not only help deafblind people but help bring general patient awareness to newly qualified GP's. The problem was funding these things, after all to do anything I need the support of a guide and note taker, I need literature and printed finger manuals to distribute. Despite jointly running a business in a former life I don't have a clue of costing for equipment, guiding and printing and don't have the foggiest idea how to find out. Incredibly after approaching my local council and calling in a few favours I was told it just might be feasible to get enough funding to last a year, I just have to submit those dreadful funding costs and cross fingers.

The possibility of getting out there and doing something that I personally initiated and knowing I can achieve is a huge boost. I can almost forget my restrictions and bleak future.  But it all comes down to my first point about Helen Keller. Finance and support. With those two things almost anything is possible. The support of people who understand my needs, who give as much assistance as possible. The finance to enable these people to help me and provide necessary equipment. Helen Keller was an amazing woman but also in some ways a fortunate one, the opportunities to make an impact on the world and make yourself heard is not readily available to most of us.

To be able to say 'I have this condition but it didn't control me or beat me because of my own determination and the support of good people,' must be a truly wonderful thing.

To be one of those marvellous caring people who can say “I went out there and helped someone achieve by supporting and encouraging them,” must be an equally wonderful thought...

This morning I'm in one of those up and positive moods where anything is possible. it's in no small part thanks to a visit to the doctor which went extremely well and all down to my support worker and an electronic note taker. 

I'm not sure if my support worker will appreciate me revealing her name but she's come to be a very important part of my life recently. Zoe works for Deaf Action and frankly without her assistance there are days when I couldn't function. Because of council cut backs my time with her is technically limited, but even those few hours per week make all the difference in the world. She organises things, makes endless phone calls and acts like a mother hen despite the fact I'm decades older than her. People like Zoe are the salvation of people like me, although strictly speaking her time with me is limited she'll do things for me outside the allocated period, that sort of effort means everything and more so when she spends time just listening to my whines. With Zoe on hand to remind me of things I'd intended to ask the doctor and the note taker typing away in large font on a lap top, I found for the first time in years I knew exactly what was and wasn't wrong with me. I have to gloat a little because my own self diagnose was correct, I think people suffering dual sensory loss have sensitivity to their own bodies, perhaps one of the many ways the body allows other compensate. The down side is any changes in general well-being seem to be more highly emphasised. One of the bug bears of any disability is increased stress levels, in the case of acquired deafblindness communication and isolation along with restricted activities certainly add extra diminution.

Thanks to Zoe the doctor has agreed to refer me to the local gym and swimming pool, Zoe plans to accompany me and the doctor will assist my bid to get additional support hours from the local council.

I can never plan ahead on anything, I never know what level of ability I'll have on a day to day basis. The only time I do make plans are for appointments or my beloved voluntary work but even that can be touch and go, being forced to drop out of giving a talk and spreading the word about dual sensory loss always upsets me. I've recently found out the funding for the project I work with runs out at the end of March. I'm devastated because talking to people and letting the world know about deafblindness means everything to me. I visited the local ob centre again (I'm a regular visitor there), asking them to help me find means of getting a note taker and guide to enable me to do voluntary work independently. There's so many area's in society that need to be taught about disability awareness, patient awareness and deafblind awareness, unfortunately as usual the job centre couldn't offer any new advice. I'd love to have a meeting with the powers that be who decide to make cut backs and impose even more restrictions on disabled people. I'm sure I could enlighten them on a few facts!!

The weekend ahead should be an exceptional challenge for me. Three of my daughters now hesitantly and grudgingly are starting to accept I'm not the mum I used to be and taking note of the fact I'm cut off from so much. They've asked me to accompany them to a friends Birthday bash. Even if my vision is stable it'll be a huge challenge lingering round in a semi dark venue surrounded by people I won't be able to see or understand. But I've decided to set myself new challenges and goals, after all I claim to be a survivor I ought to prove to myself I am. I might chicken out at the last minute but if I do go at least I'll be able to say to myself. I tried.

I've got another challenge ahead this weekend too. Two of my grandsons want me to go to Edinburgh with them, it'll mean taxi's trains, crossing busy roads and heaven knows what else. My oldest grandson is 16 and has pledged to look after me well. These two things might seem simple to most people but for me they'll both require a lot of courage and Herculean effort. As I said I can't plan ahead but I've come to the conclusion if I don't set myself goals and challenges then life will just pass by and the only substance to it will be the memories of long ago before dual sensory loss...

All's Well That Ends Well.

The last few weeks have been anything but settled. I had to concede defeat vision wise and curtail my usual umpteen posts on facebook, twitter and my blogs, writing was painful and extremely difficult, I always dread the days when even increasing font to huge proportions won't help ability to read because everything in blurred beyond recognition. Times like that tend to make my already poor balance even more haphazard, dual sensory loss can have enormous affect on ability to walk a straight line. That's where the red and white symbolic stick and dark glasses help people distinguish my staggering as visionary problems rather than someone who's had a tipple or two to many. It's rather ironic really, I don't drink and can't recall a time when I've been inebriated and certainly not enough to leave me staggering!

I've mentioned before on days when vision is severely limited and balance poor, it's impossible to find anything constructive to do, even simple exercise is a challenge and a half so I find myself laying in bed unable to focus on anything and a danger to myself. Remaining inactive for days on end is unhealthy for anyone, the hours drag by over the last few weeks I've spent as much as 16 hours a day laying doing nothing other than cat nap hoping every time I open my eyes I'll see a little clearer again. It's odd the way my remaining vision tends to come and go without warning, a bit scary and sometimes depressing too. I'd give anything to feel a valued member of society again. It really isn't a case of lack of effort or desire, society just won't make allowances for me or those like me.

Naturally being a survivor and fighter who doesn't accept limitations willingly can take it's toll sometimes. Stress and lack of activity finally got the better of me last week when my heart rate went into overdrive, fortunately my grandson was on hand to call the health centre else I dread to think what would've happened. I've the highest respect for paramedics in general but had a run in with one particular chap last year that left me shocked and angry. He'd been called out to attend my granddaughter who had breathing difficulties because of an infection. His attitude towards me when I explained I was deafblind was dismissive and almost ridiculing. After a formal complaint to the ambulance service I was assured deafblind awareness would be promoted to all staff in future.

When the health center called an ambulance last week I was nervous about how they'd communicate with me and how they'd react but they took pains to make sure I understood them. Mind you, when they told me I was about to have a heart attack, my pulse was over 130 and I was in bad shape, I think I'd have rather not have understood them!!

Unfortunately the doctors at the hospital didn't make the same degree of effort to clarify what the problem was, after giving me this and that they agreed I could return home none the wiser to what had actually gone wrong. Maybe ignorance is bliss.

Fortunately I've got my marvellous support worker who'll accompany me to my next appointment and along with an electronic note taker I'll hopefully be able to tell the doctor what help I think I need and read what they intend to do.

Tonight I have written again and can see enough to read my type. All's well that ends well...

There's always those sort of days when life is good. Days that appear comparatively normal doing the simple things that ordinary people do, getting out and about spending time with family and laughing at silly things or just laughing for the sake of it.  Without laughter and communication with other humans life becomes intolerable. .

There's always the other sort of days too and those are the ones that seem to be growing more frequent, days where simply existing replaces living. Where finding a reason and the strength to remain optimistic against the odds is a challenge and a half.  Life should be treasured life and blessings counted, but there are times when even the strongest grow weary, when the odds are stacked high against us and when the simplest thing becomes a struggle to far. 

Last week was full of days like that.

Thousands will identify with the frustration of being at the mercy of the welfare system where basic things can't be replaced, where we do without because there's no alternative and we sit silently praying nothing else breaks down and needs replaced any time soon. Then there's bills, fuel, food and all the rest and for many the only option is to borrow from credit companies some of which charge triple the cost of goods. These are the things that are familiar to so many people today. But for those like me there's added complications when certain bills can't be met on time. For example internet/phone companies.  BT offer a service for disabled people whereby the service for phone/net can be kept open in cases of late payments, other companies are not so understanding. Mine isn't despite being a long standing customer services are cut leaving me with no means at all to contact the world outside, to add insult to injury most companies charge a £10 late payment fee which can add up to £120 per year for someone who can only pay bills on time if they match benefit payment days. Days without access to anything is horrendous particularly when alone. Families can't always be on hand and if they are it's difficult to ask or expect the level of help I need on bad days. Voluntary work is dependent on guide services and the stability of my limited sight, its been quite unstable recently, it means when alone as I am increasingly more often nowadays I can't type for more than a few minutes at a time and some days not at all, with almost no ability to do anything constructively and no means to get out, no company or any means of communication with the outside world. 

I suppose it would be difficult for most to imagine my world on bad days and weeks. Unable to cook properly, read, write, contact family, visit friends, go for a walk or even undertake mundane tasks such as ironing. The restrictions are endless but the isolation is worse.

Sometimes the only escape is to sleep or attempt to sleep. Life is so precious and should be lived not frittered away alone and cut off from the world.  Retaining the belief that things will get better is vital and completely losing that faith isn't an option, but sometimes keeping optimism in a system that doesn't see the needs of the vulnerable and turns a blind eye to calls for help is almost impossible...

Saturday 14th january 2012

Dear diary...Well it does seem as if I've created an open diary with this blog, and every time someone reads it and shares it even though it's mostly uneventful, and somewhat badly written it still acts as an outlet. everyone who knows me also knows I grudgingly accept being disabled but don't do it quietly, at least not while there's so much I can explain to people about dual sensory loss. I hope one day to get sponsorship to allow me to speak to medical undergraduates, everyone in the health profession and every other spectrum that deals with the public. Its not easy to reach out and get people to listen but those who do and those who read this diary, the thought that anyone is willing to show interest in the restrictions of dual sensory loss is a huge boost.

Like everyone else with disability I've experienced those instances when strangers have made rude remarks, treated me like an idiot or laughed as I pass by. I don't hear the insults or see the faces but still know instincivly when someone is sending out negative vibes. Its peculiar in a way because there's no sixth sense yet a lot of disabled people particularly those with high sensory loss really seem to be able to access vibes and emotions of those round them far better than the average person.

I've mentioned a deaf/blind mute man before and met him again yesterday. He's selective about who he likes to use dual finger maual onto his hand. He'll brush people away if he doesn't feel compatiable to them. He senses even before they touch his hand that he doesn't want to communicate with them. Its an amazing use of senses and something thats overlooked with our high dependency on vision and sound.

Touch and smell play a huge part in daily life yet most people don't give these senses a second thought. I easily distinguish the different vibrations of a bus, car, lorry or bus passing on the main road a short distance away and it's the same with planes, knowing if they are coming into land or have recently taken off. In a small way touch and vibration compensate for loss of sound.

Smell is remarkable. In the early pre speech days of homosapins smell and touch were vital assets. It wasn't looks wealth and certainly not chat up lines that attracted. More often than not it would be smell. With todays modern assortment of body sprays, perfumes and household substances you'd think the ability for natural scent detection would be over powered. Not necessarily so, I think it's that inbuilt sence of smell that lets me know when someone has been negative towards me and how the deafblind mute man can accept and reject people automatically.

Knowing we have other unscathed senses that though can't replace missing and damaged ones can help compensate just a little. If ever you were to meet me outside and my nose twitched it wouldn't be me impersonating Bewitched or having an itchy nose, it would be my automatic senses at work!!

I tend to write about so many different things because there are some days when I don't have the chance to participate in society so simply writing this such as; 'got up, waited for vision to settle, got burnt cooking, banged head on cupboard door, turned on PC, tripped over cats sat talking to self and waiting for someone else to communicate with me, and waited for the clock to complete its cycle,' all sounds so bland but the truth is...they and yet more things are the bland, dull and frustrating events of every day life for the deafblind...

Friday 13th January 2012

What a busy day and every moment was great! It started with the weekly visit from my support worker. She's exceptional. Usually when I have to depend on people to make my phone calls and organise things they do so reluctantly because they know it means endless interruptions with me reminding them what to say on my behalf. Not so with my support worker who instinctively seems to know exactly what's needed. The best thing about people like her is not just the fact she undertakes necessary tasks for me but also that she listens and shows genuine care and interest. It's often very difficult if not impossible for families of disabled people to fully appreciate needs and particularly the needs of those with acquired problems. When a family member previously able to do things changes and becomes dependent, especially those with invisible problems it's difficult for families to recognise and accept changes and my family are no exception. I'd always pandered their needs and took pleasure cooking, cleaning up after them, making small talk and all the other things a mother and grandmother does.  But things have changed, I can't see the clutter which is now potentally dangerous for me, I don't see the smudges and spills, can't cook without risk of  burning me and the food and they completely forget to include me in group chat. It's not deliberate oversight on their part or neglect its a case of not seeing the differences in me and not wanting to accept mum now has limitations. its a very natural thing with families.  

When someone develops a  disability the entire family needs help on awareness, acceptance and adjustments.  Sadly there's very little help and disability education available for families out there. .

The afternoon was spent in a secondary school speaking to 4^th year students. Selecting volunteers to try out ear defenders to muffle sound and a blindfold then getting them to walk round with only a stick to help is always a good way of breaking the ice and giving a small taste of what it feels like. As usual when we first entered the class the teachers assumed it would be the guide speaking and not me, after all they don't imagine a deafblind person will be giving the talk, it's the same old problem that occurs everywhere I go, it irritates me at times but I've learned not to get offended.  Glad to say by the time the lesson was over the teachers themselves had learned a lesson in not making assumptions and not overlooking someone because they are unsure of what approach to use.

Usually I ask the pupils 'if they saw me with the stick and glasses outside trying to cross a road would they help me?' usually I get a resounding “YES,” today however because the pupils were shy only one hand ventured up. I explained about sensory loss affecting balance in my case I can stagger around like a drunk on a Friday night, I remove the glasses, put down the stick and demonstrate my walk then ask again if they saw me without the stick and glasses would they help. This time they weren't shy in yelling “NO.” It's another way of showing how wrong assumptions can be. The dark glasses do protect me from light but also serve as a visual for others and the stick applies in much the same way.

Its a tremendous feeling when you know people have listened and taken on board what you've said and even more so when you know they've actually enjoyed listening. If this can enlighten just one person and make just one person understand disabled people are no different from them. Not just dual sensory impaired people but all disabled people then I have done something good and worthy.

Following days like today I can always sleep with a lot more ease. Not only was my vision stable and not causing pain but I did what I set out to do, enlighten people and feel I'd contributed to the world in some small way. What a wonderful feeling that is...

Thursday 12th January 2012

I love writing about positive things and it's been a pretty positive day and evening all round. These are the times when limitations don't stand in my way and I achieve things. Probably not big things to the average person, things like arranging to see my granddaughters headmaster in person, usually I never visit the school, people who don't understand anything about dual sensory loss make assumptions to intelligence and become distant or patronising. Finally the school has agreed to provide some communication help which means I'll be almost like any other interested carer or family member. When I can make progress and finally get the message of rights across it always brightens the day. My persistent emailing also paid off when I helped someone get results with a housing issue, it's not quite the same as back in the days of employment and decision making but in some ways doing things on a voluntary basis is even more rewarding.

So glad the schools and colleges are back after the holidays, it means I've got constructive things to do visiting them and showing the world what disabled people have to offer. I've been to some great schools and colleges, some of Scotland's finest. There's a mistaken concept that private schools and young people from better off families are aloft and uncaring. The pupils never cease to amaze me with their interest and genuine concern often remaining behind after class to ask things. And it shows the young from all walks of life have hearts and sometimes just need to learn what life can be like for others. It gives a certain amount of hope for the future showing that with the right approach problematic pupils and wealthy ones respond positively.

For the remainder of this week and part of next I'll be working in a secondary school, I love nothing more than when teachers are proved wrong about pupils. Teachers will say some of  the pupils might be disruptive and laugh at me, they ask me not to take offense and assure me they'll remove any problematic pupils. It's never happened because not once have I found a class with a disruptive disinterested pupil, quite the opposite. They listen and we laugh together, later on I'll tell them that they've learned a good lesson of laughing with people and not at them. it's great to see them digest that and understand. 

When I'm asked back to a school after several visits they usually present me with something. I've got a collection of hand written letters from pupils, paintings and drawings, things made in the art classes. It shows the schools really take interest and if only one pupil out of every 20 remembers the visit from a deafblind woman and remembers all I've taught them then I've succeeded in my objective. 

The strangest place I've been asked to give a talk in was an adults lip reading class. All but two of the participants were deaf and used sign language, I don't use that and my skill at it is highly questionable. My note taker had difficulty understanding what most of the participants were saying because of speech impediments. They had difficulty reading my lips and didn't know dual finger spelling, it was a disaster in terms of giving a talk but everyone saw the funny side and it was super to see people can laugh problems and not take it to seriously.

Primary children come up with classic questions and sometimes I have to hold breath to stop laughing. Strangely enough children all over seem to have the same sort of image when thinking of deafblind people, some of my favourite questions are:-

“Can deafblind people drive?”

'Technically no, but if they did they'd be better drivers than some of the people on the roads.'

“How do deafblind people eat dinner?”

“They use knifes and forks.”

“How do they open doors?”

“They use the handles.”

The next question came from a very mischievous looking boy;

“If a deafblind person had a guide dog and someone tried to rob them, would the guide dog bite the robber?”

I eyed the boy at close range and thought out my reply; “Well...I can't tell you that it's secret, the only way anyone would find out if the dog would bite and how hard it would bite would be to mug the deafblind person.” I think he discounted the idea of trying to rob a deafblind person with a guide dog!!

The talks themselves are very serious and hard hitting, getting the message across that one day sensory loss could happen to them or someone close and leaning new ways to communicate is the answer. Bringing home the danger to sight and hearing in the modern world of loud music and close proximity to TV screens and monitors is another important point.

Above all when I visit schools I like to leave them with something positive to think on. I always tell them to stop and think.

If someone who can't hear them and can't really see them can stand in front of them and speak even if they have no idea iof anyone is listening or watching,  then they themselves can do anything, never say this is to hard or I can't. For disabled people the world over it's the same story - It's not lack of desire or lack of self effort that prevent us achieving it's society...

Tuesday 10th January 2012

I like to think I'm a tough old girl and few things alarm me other than the usual concerns for family or when I learn of man's inhumanity to man and his wanton selfishness. I'm no exception when I have those endless sleepless nights where the mind refuses to rest and thoughts churn round and round coming up with the worst possible scenario's to everything.  There's also nights where I forcibly stay awake by choice particularly when my sight has been stable, then I'm reluctant to sleep in case my good fortune expires in the morning light.  Nights like that allow me to type away till my heart is content putting all my thoughts in print. Sometimes I write stories inspired by life events or pass the hours writing endless philosophic theories each containing my imagined solutions to the vast complications of  life.

I love using words and writing is a joy even though know my style of writing leaves a lot to be desired. Words are wonderful means of expression whether spoken or written and  I love the concept of such a vary array of languages and expressions those fascinating dialects and slang's that only natives of an area can interpret. There's a word for everything and words allow us to express experiences, thoughts and fears, anger and pain and every other emotion. But not everyone realises spoken words aren't always necessary to communicate, sign language and dual finger spelling prove that, more astoundingly is the fact friendships and close relationships can be formed without use of spoken or written language and without the accepted sign languages either.  

 

Years ago I met a young African family who'd moved to the area because of it's proximity to the local university where the husband was attending. The family consisted of the husband wife and three children. Both the children and their father spoke and understood English but the wife had no grasp of it at all, in a prominent English area it made her an outsider. That didn't prevent our children becoming good friends and playing together every day. The mother and I would stand outside watching the children play and exchange polite smiles. One day when I was indoors my son fell over and cut his knee, the African woman scooped him up and took him to her house sending her son to fetch me. I found her cleansing my sons knee murmuring reassurances in her own language. She never did master English and I didn't master Afrikaans yet we formed a wonderful bond and endearing friendship based on smiles frowns and gestures, we'd laugh outrageously at each other and instinctively knowing what the other meant, she'd cook for my family and me for her's, we shared some precious times together.  She was a wonderful woman and taught me lessons about friendship, humanity and how communication and cultural differences don't mean barriers.

Recently sleeplessness has been quite profound and the source has everything to do with the real frightening prospect of benefit cuts. I've always rose to a challenge and come back fighting regardless to what life has thrown at me, and it's has indeed thrown a lot over time, but this time I'm starting to wonder if I have finally been beaten. Already many aspects of life are a struggle and I don't say that lightly. Disability, as every disabled person will testify, entails various additional needs and additional help requirements. But with all we're forced to deal with it comes to the point where we ask 'how much more are we expected to take?' Aren't disabilities enough, isn't dependency enough, sigma, prejudice, humiliation, inability to help ourselves and do simple things for ourselves. Pain and fear, the list goes on. Those who live with disabilities are survivors of the earth dealing with things able bodied people couldn't imagine. Sometimes I have the urge to scream at the world 'for gods sake don't increase our hardship, don't put additional financial burdens on us limiting our help even further making even the smallest thing such as a trip outside or a new disability aid an impossibility.'

Amongst the haunting thoughts that run through my mind on sleepless nights I now have the image of yet more old sick and helpless people dying in sorrow and neglect. More images of housebound disabled people unable to meet the cost of fuel bills and food bills let alone anything else. And people like me unable afford phones or internet connections that give the last remaining connections to the outside world.

Every man is born with a conscience, only the wise and good choose to heed their conscience...

Monday 9th January 2012

The saying “silence is golden” has a wealth of meanings but silence isn't always golden, in fact sometimes it's the opposite. I've had many moments when silence is been oppressive. Sometimes it can seem almost like living inside a thick bubble. The thickness distorts everything outside making it impossible to make sense of images, sound can't penetrate the bubble either, it can make the world seem such an unwelcome alien place, the only safety is to close eyes and forget the bubble and silence. With eyes closed loss of hearing and vision don't count, memory can trigger sounds we once heard and hold images of people and places. Memory is an amazing thing, provided I have help sorting things out and have someone on hand to check quantities and things I can still cook within reason. It's the same in the car much to the frustration of whoever is driving, I'll say 'take a left or second right', occasionally I'm right and memory pays off but more often we get lost courtesy of modern road upgrades! Musical memory means if an old song is played I can recall the sound of instruments and voices, of course I don't remember the lyrics to every song but it's great fun if I do.

On a visit to my granddaughters school they forgot about me when the fire alarm went off, leaving me the only person still on the premises. I've sat on an empty train after the other passengers had disembarked following an announcement the train had broken down. Tradesmen exploit the fact I can't examine completed work and often don't do the job properly or worse give verbal estimates

then maintain 'I misheard them' and bump up costs.

One of the most frightening experiences I've had was when at home alone. Things had been tough and I was suffering stress with the usual stress related symptoms, increased heart rate dizziness etc. Recognising my problem I just wanted reassurance and someone there to listen. My local health center allows me access by email to make and cancel appointments but nothing else. Disabled people can have access to a panic button but they require use of hearing. An alternative is an emergency button that sends an emergency team directly to the home. In this case it wasn't an emergency, I didn't have one of those buttons and just wanted someone to help me calm down. For people like me with no hearing and minimal sight nothing exists to let us have direct contact with health providers. If I'd had an emergency email contact it would've made so much difference someone could've mailed me back and offered that little bit of reassurance.

I'll never forget that day or the feeling of utter despair, fear and helplessness.

The same thing applies with various government departments especially those concerning benefits. If someone contacts them on my behalf they demand to speak to me personally, I usually take the phone give my details and hand it back to whoever is making the call for me. 9 out of 10 times the department maintain "they can't speak to a third party therefore cannot process my request."

Doctors surgeries are a nightmare too. Although they now willingly provide note takers for consultations they don't allow appointments (urgent or otherwise), to be made after 8.45am. I can't use the email appointment service if I need to see a doctor soon or within a day or so, they maintain they don't check emails regularly and by the time they do it's way past their appointment window, it's not always possible to have someone on hand to phone them before 8.45am. It's a lose, lose situation.

The threat of benefit and disability cuts is alarming and on top of the inequality and humiliation experienced by dual sensory loss people and other disabilities it seems a bit to much and so very unfair. It's about time the system realised people don't choose to have problems, but the system deliberately chooses to ignore the needs of people with problems...

People often ask why I'm so passionate about politics. My diary isn't about politics but it's impossible to exclude it when the subject controls everything we do and can't do. When life gets a bit much and there's a risk of feeling down I always find the best way is to divert thoughts off self and focus on other things, lets face it, its attitudes and policies that make life so difficult for us all. With the right attitudes people would suffer less, have greater acceptance, easier access to things out of reach but taken for granted by the majority. Being accepted is such an important thing yet it seems in some way or another half my life has been spent battling for that and not just through disability.

Growing up in different places was a wonderful experience but unsettling too, there was always differences. I always had a different accent to the rest a different colour or culture, different dress only and only a limited few people ever let me feel I fitted in, its exactly the same with disability. People make all the right noises of objection when they see or hear of people suffering prejudice but regardless to how they sympathise it's impossible to understand what being different is unless you've been in that position. For example the child who's bullied because they are fat, even though the reason might have nothing to do with overeating, usually there's always someone who'll try and befriend them and any friend in difficult circumstances is worth so much, but that friend can't understand what the bullied child is going through but its impossible unless they have experienced it too. That's where the importance of acceptance and tolerance comes in. Its the same  story of everyone who is perceived as different for whatever reason.  Acceptance is such a big thing, being accepted for who we are rather than excluded because of physical things and tolerance can change everything.

We all dream of finding that one special person who doesn't see differences but accepts unconditionally and there's an awful lot of people out there who do that, see beyond physical limitations and love regardless. The prospect of high level dependency isn't something anyone wants to think of but millions have no option, those wonderful people who devote themselves to a partner or spouse dealing with ceaseless caring without complaint are some of the unselfish admirable people on earth. My general health is quite good, my life expectancy is good too, but my dependency rate will at some point in the not so distant future will be extremely high, more to the point my communication skills will be almost non existent. Its not self pity, its realism when you can't discuss simple daily events, talk about the news, who said what, talk about all those little things partners talk about then it takes the idea of a relationship into a whole new spectrum. Deafblind people do have relationships they communicate with each other and quite proficiently too, but its extremely unusual for a sensory intact person to be able to cope full time with all the needs and shortcomings of a deafblind person. I suppose most disabled people feel they wouldn't want to impose on an able bodied partner, it's a horrid thought and one I wouldn't consider lonely or not.

Everyone aims to hold onto as much independence as possible for as long as they can, so keeping an interest in politics and continuing the quest for acceptance and tolerance and more compassion from the very top would really set the way for everyone else...

As a treat my grandson and I went to the cinema today. 

Last year I obtained a cinema ticket designed for disabled persons allowing free entry for the card holder or a adult carer accompanying them. The photographic cards are valid for one year, the specification doesn't cover registered deaf persons or deafblind. The card costs a minimal amount and is valid for one year, however this one had expired. I used to enjoy frequent trips to the cinema but over the last few years its been out of reach like so many other things. Size of screen doesn't prevent blurring and loud sound systems are useless, all in all cinema visits are useless, but like I say it was a treat for my grandson. Because of the expiry they demanded I pay full admission charge, it gave me the opportunity to argue the case and bring awareness of dual sensory loss to the management. You wouldn't pay full price for a three course meal in a restaurant if they placed empty plates in front of you. They relented and we only had to pay for my grandson.   Cinema's are expensive for anyone, add taxi fares and cinema snacks and your talking a lot of money. It annoys me when I'm a regular taxi user and spend a large amount of Disability Living Award on fares yet some drivers refuse to accept disability reduction cards claiming they don't have the paperwork needed. The cards allow a £3 reduction on fares and have a limited amount of use per year, run by local councils the scheme can be a huge asset but acceptance of the cards should be regulated. Cinema charges yet another example of how the unique problems of dual sensory loss isn't taken into consideration. I don't think I'm making a rumpus drawing attention to the act anyone would be reluctant to pay for something they only have partial or almost no benefit from. Its important no disability should be overlooked and not accorded equal fairness in the area's needed.

Believe it or not despite full deaf and blind registration I don't claim high rate DLA. Initially the diagnose was part sighted and deaf, middle rate award reflected that. But over recent years with several unsuccessful operations and continuing deterioration registration was changed to blind/deaf. High rate would enable me to do more things, get out more often and pay for more equipment I desperately need as well as helping costs of hiring tradesmen to do repairs, redecoration and modifications my home needs. Due to the current financial climate and despite encouragement from the Advice shop and various other sources the advice has been not to make a high rate or mobility claim. I'm pretty good at arguing my case and will continue to do so but according to sources with threats of welfare reform I could well end up losing some of my current award rather than gaining anything. There's so many organisations out there trying to protect the rights of the vulnerable, but there are few if any out there trying to safeguard and improve life and rights for deafblind people...

Friday 6th January 2012

I had a lot of trouble with my vision earlier today, is so frustrating especially when even the smallest pit of light is intolerable and my eyes hurt. The hours drag by with nothing to fill the time, wish I'd learned to knit, how hard can it be clicking away with needles, a fixed amount of clicks per row and nether a care if stitches are dropped. Given the crazy trends around today I could create multi holed scarf's, people with vision have created worse things.

People like me can't even use text messaging on mobile phones, type talk phones are obviously no good either. I heard of a specially adapted phone initially created for the blind. The larger screen and buttons mean it's possible for some deaf blind people to use. The cost of £2,500 puts it out of most people's price range. If you want to hear and see or communicate there are so many things on the market to help, but in each case cost is outrageous. RNID and RNIB only provide limited amounts of equipment, employment laws mean such things must be provided but the employer. The truth is firms and some charitable companies only give paid employment to a limited amount of disabled people. One deafblind charity only employs two such people, both with mild to moderate dual sensory loss. There's an awful lot of highly educated disabled people, some obviously can't work but those who can would love the chance of a job that used their specific skills and especially one in a field that benefits from first hand knowledge and experiences. Although I love the voluntary work I do, sometimes I think its slightly unfair when I put in the same hours as the rest of the team and give 100% commitment yet they are fortunate to be on the payroll while I'm not.

Thankfully by this afternoon I could open my eye again. I took the opportunity to fire off half a dozen emails, two trying to promote Touching Lives project, one to the local council regarding an elderly neighbour who desperately needs a wet room and the rest to various MP's who no doubt hate me and file my emails under trash.

Finally one of my grandsons came to stay the night. Like most of my older grandchildren he loves learning about everything, it gives me the chance to talk about my favourite subjects.  Like most of my conversations these days I did the talking and he listened. The joy with grandchildren is they don't care if I misunderstand them, they patiently repeat themselves or try to use dual finger spelling, they seem un-flustered and more relaxed about communicating than most adults do. The relief this brings is best described by imagining a wild horse kicking down the paddock fence that entraps him and bolting for freedom... 

Well the marathon shopping is done leaving two weeks respite before the next one. I doubt three plus hours food shopping is something anyone could enjoy, and to add insult it's embarrassing handing my purse to whoever I'm with so they can rummage for cash. Sometimes it's difficult to be sure what cash I have, and I can't see the till total or hear the till operator, I'm always glad to leave the store.  Back home a cup of tea soon melts the stress, I've got gadgets to stop the kettle spilling and another to prevent the cup overflowing, the latter operates by vibration which is also how my alarm clock works. Trust me a vibrating pad under the pillow would wake the dead.

Sipping the tea I started thinking about life and what it's all about...when the world is silent and semi dark it leaves a lot of time for thoughts. There was a time when I went shopping and everyone would stop to talk to me but nowadays its rare anyone approaches. People smile and wave, I don't see them and walk past and some people are now reluctant to approach knowing the communication difficulties. When my hearing was fading but my vision was fine people would chat ceaselessly to me and I'd bluff my way through conversations pretending I heard every word.  Most people with hearing loss buff but will be loath to admit it.  Rather than asking people to repeat themselves its easier to smile or frown, nod and say things like 'gosh, really, wow, etc. and hope we've said them in the right places. I've lost count of the times someone has been chattering away to me leaving me struggling to guess what on earth they were talking about. Thankfully, my skill of nodding and muttering must've worked because few people ever realised, I was growing profoundly deaf and their conversations were meaningless to me. 

Most of us bluff through certain things in life. We disguise emotions, pretend to be brave and act strong because we don't want to appear weak especially to the people who depend on us. Sometimes we honestly believe ourselves that it's just bluffing when in truth it's not, most of us are far stronger than we realise or give ourselves credit for. Things happen in life that can't be changed and no amount of wishing or regret can undo them. Past events, loss, misunderstandings, cruel treatment, acquired disability, they can all induce feelings of failure and helplessness, I learned these lessons the hard way. We could go through our entire life asking why, why me, why did that happen, why did someone do this to me, what did I do wrong...There's no answer, never is. It's what distinguishes people from being survivors or victims and life is about survival. When sad things happen and we retreat into ourselves and suffer that well of self pity. There's nothing wrong with self-pity really provided it's recognised and doesn't become the focus. Being vulnerable is something so many of us suffer from but there comes a time when we either give in to vulnerability or decide whatever happened to make us so cannot control everything. Physical and mental disabilities including depression and stress cause so many different symptoms and results. Expecting everyone to respond the same would be ridiculous. What we can learn from each other, and life is, that we cannot undo things, when life changes dramatically we can all decide to adapt, learn to love who we still are and learn other ways of doing things. They say we can't love and understand others until we love ourselves, and that means acceptance. Once we accept ourselves, we can teach others how to accept us too regardless of limitations and differences...