Oh Be Quiet Please!

I dislike the feeling of harping on about something but its the only way to draw attention to deafblindness.

There's so many different levels of dual sensory loss making it hard to draw comparisons to all sufferers. What we do all have in common is limitations to most things in life and a need to bring this to the attention of governments and the public.

No disability is easy to live with and most suffer a great deal of prejudice, its impossible to beat all prejudice and ignorance in life but its possible to reduce it. But how do we go about it. Disabled people themselves can be prejudiced against other disabilities, amazing but true. How do you explain to strangers “I'm not miserable or stupid, I have a mental health problem. “ or “I'm not ignorant, I have difficulty communicating.” Its the same for someone in a wheelchair, people speak to the person pushing the chair and not the one in it. You can't catch disability from us, we wont hurt you. Yes you sometimes need patience to talk to us but so do we when we talk to you!

If your healthy your indeed lucky. I'd never have imagined being in the position I am, assumed people were usually born deafblind and wouldn't have had a clue how to approach them. Disability is like having a lottery ticket that hits jackpot without the rewards, as they say with the lottery “it could happen to you.”

I went to my grandsons birthday party the other day. The first children's party I've been to in ages. It was an excruciating experience but I didn't tell the family that. Being surrounded by small children and mothers, dropping things in my path, trying to talk to me, was to much to deal with. I can't keep up, can't converse, can't join in. Rather than stand around lifelessly I put on my specially reserved smile and gritted teeth. Somewhere inside I'm the same bundle of fun and mischief I always was, the one who'd roll down hills, chase the children round the garden and join in with everything. Sometimes it hurts knowing my eyes, ears and balance combine to stifle my personality and make me feel an idiot with a fixed grin. A lot of people will identify with me when I say I feel like yelling 'Hey I'm still here, still me.” Its not my fault that I can't observe the party, listen to the music and join in the chatter. Sometimes it feels like being inside a bubble, the world is going on around me, I know its there but I can't break through the bubble to see it clearly and join in.

I've noticed I'm increasingly disappearing into my own little alien world, living on my own apart from the cats, with only 3-hours-a-week support from my wonderful support worker and occasional visits from my family the days and nights would blend into nothingness if I didn't have the ability to use the internet and have contact with some marvellous people on it. Giving talks to organisations brings me back into this world for a brief time. Its so frustrating at times knowing I still have a lot to give society and knowing to doesn't listen or make allowance. I can only communicate directly via emails to MPs and others who can help improve access and inclusion for people like me, but an awful lot of departments and businesses don't provide email addresses. There's nothing worse then when I need to contact someone and its not my support day, and no one is here to make phone calls.

At a count over the last month alone I must've sent at least 50 emails to various people running services most without reply, and spent most of my waking hours hunting to find email addresses for other services. I don't want preferential treatment just the same right as everyone else to contact places. DWP is amongst the worst culprits. Any enquiry at all requires phone calls, why should I have to wait on a third party making them and why do I have to go through the rigmarole of proving its my voice yelling “yes this person is phoning on my behalf.” Many countries operate secure net systems that allow mute, profoundly deaf and deafblind people emailing access so why can't we.

Trying to get this put through parliament is trickier than swimming across a crocodile infested river at feeding time, I'd have better chance swimming the river.

It seems I'm turning into a female Victor Meldrew (One Foot in the Grave), the catchphrase “I don't bloody believe it” fits me perfectly.

Sorry I wont be quiet, wont stop emailing you just because you opt to ignore my 1,000 previous emails. Won't stop drumming the drum for recognition and rights for everyone deafblind.

If your one of the unfortunate people who's email account is now blocked because of the quantity of my emails, or your fed up hearing about deafblindness. Take Note – I'll keep shouting till I'm listened to...

Sweet Scents

Its not often I can say I've had a few weeks with very few negatives, the unique problems of deafblindness always throw up negatives. Unlike a lot of disabilities where mobility is restricted and influenced by pain, the challenges are't physical  but demands a lot of courage to deal with the mental affects of a silent and often unseen world.   Getting out and about is always an adventure abet sometimes scary in places I'm not familiar with and sometimes it remind's me of when I was little. Everything strange and different, disoriented and dependent on others. Before I go out I battle to overcome my trepidation and forget potential dangers and its always worth it.

Dark glasses and red and white cane allow outsiders to see we have a problem, but now and then some unscrupulous people seem inclined to use those visual indications to their own advantage. Doing my shopping in a big store accompanied by two daughters seemed a safe enough idea. My daughters turned away for a minute leaving me with the trolley and institution's not to move from it. Maybe the devious shopper had been watching us, who knows, but they somehow managed to make off with a few of the bags  Perhaps the devious thief had I'd been watching me because it only took a second to make off with a few bags from the trolley. It wasn't till we got home that we discovered it. It doesn't happen often but it's an example of how having a clear indication of being blind can work against me sometimes. 

Scotrail like all rail services comes under fire all the time but I can't sing their praises enough this week. Travelling anywhere is an ordeal, I'd been invited to give a talk in Edinburgh and this time my daughter decided to come and act as my guides. There's been a campaign aloft for a long time to allow free rail travel for guides but nothing has come of it despite the subject being discussed in Scottish parliament. Edinburgh Waverley Station staff are very up to date about deafblindness and recognise the red and white canes. To our surprise despite lack of regulated free travel staff wavered rail charges to my daughter for the outward and return journeys. Some people might be aghast at this considering the high cost of rail travel, but deafblind people cannot travel alone, they need eyes and ears hence guidance. Deafblind people are entitled to free rail travel so it stands to reason whoever is accompanying them should travel free.

I was invited to give a talk to Deaf Action, despite my experience with talks the thought of speaking to people experienced in sensory loss was nerve racking. I'd planned the speech and spent ages writing and  memorising it but the planning counted for nothing when I stood up in front of everyone. I completely forgot what to say. Fortunately despite that I felt it was a personal success and a privilege to do. I don't know yet if Deaf Action will agree but I hope I gave people a little insight into my world and the world of deafblindness. My daughters who were with me gained from it too, they saw a side of me they weren't aware of and listening to me as a speaker rather than mum gave them an added insight. They've asked to come to more talks with me so it really was a great personal success.  Both girls said they'd been approached by people commenting on my talk and now they maintain they are proud of me. It taught them that though others can  empathise, sympathise and make inclusion its still impossible to understand effects and consequences of and physical or mental disability unless you've experienced it.

There's something about cities that turn otherwise considerate people into mindless thugs. Workers and shoppers alike hurry to get from A to B, pushing and shoving others aside without thought. The end of the working week and near closing time is worse. People like me can't rush down the street and have to feel my way ahead with the cane, on this occasion walking along Princes Street was like a ride in a dodgems!. Pushed, shoved, poked and almost falling flat countless times, construction work on a building didn't help. Part of the pavement was restricted leaving just enough room for two people to pass in unison. baring that in mind I tried to reduce the sweeping of my cane and feel the way along the wall. It didn't help much and after colliding with the wall and finding my nose pressed firmly against it my patience snapped. Remembering the words of the RNIB instructor. “If people get in the way of the cane it's their own fault not mine.” Sticking chin in the air I resumed the full sweep movement. Hopefully the sore shins might remind those rude pushers to take a second or two in future to let blind people pass.

Senses are remarkable and people generally overlook two of the most valuable ones. Smell and feel. They don't compensate for lack of the others but have a unique ability to take the world into another dimension.    There's a whole world out there that people with full use of all senses miss out on.  Every town and street has it's own smell and Edinburgh like the rest is full of kaleidoscopic smells and vibrations. 

The wonderful smell of old buildings, you can really smell the age and sometimes it seems the bricks carry the scent and memories of past era's  New modern buildings have an altogether different smell and it's not just the materials and paints. Then there's the massive variety of food stuffs that combine together sending  the senses into overdrive. Spices, herbs and cheeses, frying and baking, tea coffee and alcohol. Truthfully sometimes absorbing the food smells quells my hunger pains. The massive range of perfumes and aftershaves of passer bys that assault the senses, some wonderful and others chokingly repugnant. Fresh tar and the deliciously fresh smell of grass and flowers waffling from across the street. Then there's vibration. The cross match of heaving pumping music or the less obvious classical music which has to be experienced close by to appreciate, then last but not least the thumping ground shaking movement of traffic and pedestrians. It's a shame in order to fully appreciate the sense of feel and smell you have to forget the hearing and vision. There's a whole world out there to be discovered without those two things, in some ways they are equally as vibrant and awesome as anything ever heard and seen. It's worth drawing the curtains and switching off the TV and radio and think about what you feel and smell.  Life is beautiful...

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...

Sunshine

Warm sunny weather is a blessing and welcomed by most people and particularly those in Scotland. A place notorious for wind, rain and dull overcast days. The Scots are hardly folk and anxious to linger under even the most feeble of sun rays, they are renown for donning shorts and T shirts even if it's blowing a gale so long as the sun is shining the world is well.

Growing up in sun drenched countries means I'm not a fan of the cold. Sunlight always reawakens happy memories of blissful childhood days. But today the once loved sun is now a dreaded enemy almost as much as ice is. Sunlight means not being able to open my eye outdoors or distinguish anything even at close range, it means keeping curtains closed to avoid being dazzled. Speaking to someone who is deaf usually means facing against the light to allow lip reading or clear sight of sign language. But it's worse than that for deafblind. Even in normal light and up close those with limited vision find lip reading extremely difficult, direct light makes it impossible. Light sensitivity applies to thousands of people whether vision impaired or deafblind. For me going out without assistance is impossible at the best of times, going out in sunlight means I squeeze my eye shut even with strong protective shades the problem persists.

I'd give anything to sit by the beach again and watch the waves, make sandcastles or laze under a brolly reading. On warm nights the sky is often cloudless revealing a mass of stars twinkling across the heavens, I loved astronomy and had a wonderful telescope. I'd gaze up at the heavens for hours on clear nights, sometimes till almost dawn enraptured by the dazzling twinkling lights. These things are beyond me nowadays.

The sound of raindrops spattering against the window leaving trails of water trickling down the pane, puddles glistening when sun reflects on their surface. Early morning chirping of birds in nearby tree's, a multitude of varieties gathered on branches watching avidly while I distribute morning titbits. The neighbourhood dog barking as the postman passes by. Babysitting my tiny grandchildren ever alert to the tiniest cry and hugging them close laughing with them when they giggle. It's the simplest things we take for granted yet really they count so much..

It's been another period of ups and downs, a reoccurring eye infection made life particularly difficult for a few days, things like that always cause worry and evoke thoughts of 'will today be the day my eye finally dies and darkness engulfs my world.' Admitting to problems and worries and openly speaking about them doesn't mean weakness and certainly not sympathy seeking. For me showing the world some openness and insight into my life and difficulties is a way of raising awareness, letting the world know about the hardships of deafblindness and reaching out to others.

My list of injuries and burns seem to mount almost weekly with accidents here, there and everywhere, my independence is becoming increasing fragile my loneliness more enhanced and my vulnerability more evident. The human spirit is to continue and fight to overcome but some things cannot be overcome. Accepting them doesn't mean giving in and ceasing to try. I'm prepared to keep trying to do as much as I can, burns cuts and all until there really is no more chance of me doing things.

Yet another burn today. This time a boiling an egg was to blame. Having an electric cooker makes it impossible to tell when the heat is full and it's impossible for me to gauge distances. Unfortunately the sun was sneaking through a gap in the curtains when I bend forward over the cooker. Somehow I passed to close to the hotplate. My long red hair which I've always taken good care of was singed down the entire right side, I didn't see or feel it a thing and called my grandson to help me find out what was burning. After three washes and a trip to the hairdresser I can still smell the odour of burnt hair. In order to try and cut out as much fizzled hair as possible the hairdresser had to cut quite a bit of it off. I was very lucky today it could've been so much worse, on the up side I've got a spanking new hair style, the sort I'd never have considered before. Everyone tells me I suit it far better than I did my old style.

Every cloud has a silver lining, that applies in more ways than just one...

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...