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...