Where’s Tony?

On Maundy Thursday I headed out with my companion Tony to my local supermarket, whilst there I bumped into my sister, or rather she bumped into me, Tony as usual remained quiet, my sister invited me to hers for tea.  So paid up and made a quick exit to my sister’s car, rushed into my house packed up a few things and promptly came back to hers for tea.  After a lovely evening I returned home only to discover Tony had disappeared, Tony who doesn’t make much noise, apart from a few gravelly ones had vanished from sight or hearing.

I was low, Tony who guides me through many obstacles on a daily basis helping me avoid bollards, and helping me find edges to pavements so I don’t walk into the road (how gallant of him).  Tony with his bright red and white suit lets motorists know when I’m wanting to make my journey across the road and to drive with caution.  I go into shop and he doesn’t have to say anything as his non verbal communication lets people know that I may need a little extra help or just to talk a little louder too me.  He isn’t heavy he’s good at waiting for me in shops he stands against a counter whilst I hunt for cash as I’m normally holding on to him.  At home he may stand for hours before we head out together and sometimes he likes to sleep in a folding position in my bag, yes indeed the importance of being Earnest does spring to mind.

I know people who have similar partners sometimes we meet and clash from time to time.  Tony has a habit of knocking people if they get in the way, some can even skip over his feet, some ignore him not realising who he is or why I have him in my life. Sometimes people avoid him when they see him or move so Tony and I can get past.  Oh I did miss him his familiar feel and constancy.  Whilst still on the hunt for him I had another companion Claire who isn’t like Tony she isn’t as tall for one and her feet don’t make as much noise, she doesn’t wear red either which is a hassle.

Well  I asked my sister if Tony had either been sleeping in her car or had been staying at her house, rather odd really as my sister really doesn’t need Tony in her life, well I hope she never has too anyway.

So yesterday Claire and I headed up to my local supermarket just on the off chance he may have stayed there, well I asked if they had Tony, oh well they thought Tony may have belonged to another chap who also has a similar companion (shock, horror).  Well there he was the staff treated him well, he is still in fine fettle.  Oh by the way his surname isn’t Blair even though he wears red and the fact that I found him on the day of the UK snap election is no coincidence is it?  Well just to let you know Tony wears red because he supports deaf people.  So now Tony my trusted red and white cane is sticking with me and is currently safely standing in a corner of my lounge waiting for my next trip out 🙂

 

 

 

 

 

 

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Why being a visually impaired pedestrian is becoming a perilous,isolating nightmare

When I was a small child I remember walking with my mum in my local town holding her hand, we walked on the pavement and I felt perfectly safe, I couldn’t see very well but knew there was a road to one side and a step onto it would be dangerous for me.  I knew what traffic lights were and was taught the green cross code, it was simple.  There was a distinction between pavement and road, but now this is no more.

Over the years I’ve seen a large decline in safety for myself and other pedestrians.  It first started in the 90’s with the predestinization  of cities which although was brilliant, motorists and retailers didn’t like it, hence the arrival of retail parks, However predestrinized streets brought other problems, speeding  bicycles ; swerving pushchairs. Some mobility scooter users were going much faster than foot speed  would come at you from all directions.   At certain times of the day (not always knowing what times) some vehicles would be allowed through, and you wouldn’t know a vehicle was there until it was right on top of you from the front or behind.  A-boards and street furniture would appear in random spots, some of it small enough for me to walk into many a time.  When it got completely mad I considered getting a guide dog, that’s how bad it got in one town locally, a cane doesn’t work when people/things are speeding towards you.

In this century the idea of shared spaces/surface where anybody and anything can travel on the same space has made things worse, with buses now added to the melee of wheels, with their virtually silent engines it’s easy to miss a bus turning a corner and nearly being crushed by it or a van reversing unexpectedly; children running about; adults not looking where they are going as their eyes are glued to their mobiles.  Oh yes and the steps that appear from nowhere that I went falling down near our new bus station.  That’s just the streets in city centres.

In my own area where I live many things are taking up space on these supposed footpaths, numerous bins; large skips;  leaves not been cleared up for months which can cover up vital markings; cycle paths which you have to step on to avoid the rest of the clutter; runners not always clearly visable;  plenty of pavement parking by motorists who can’t be bothered to walk.  When pavements get resurfaced they don’t feel flat anymore either, many feel steeper or uneven underfoot possibly due to civil engineers can’t put their various pipes and cables deep enough underground. Some pavements are cracked due to trees roots growing from underneath, even overhanging trees or bushes can appear unexpectedly or from the side where you can get scratched. It’s concerning that pavements can get so cluttered finding space to walk on safely is a navigational nightmare. Even taking a regular route to my GPs last year ended with me taking a tumble.

But here’s what topped it off for me.  I think it was a couple of weeks ago I heard a  loud noise outside my window and discovered later there were some roadworks outside my home, I got a letter from the council a few days later to say there were road works being carried out.  It stated the times when the roads would be disrupted but didn’t give dates of start and finish of the said works.  But thankfully does give a feedback form which I fully intend to fill out here’s why.

Just this week I was heading out when it was very windy to catch bus I went back inside as it was too windy for me to breathe normally, I also had to make a cancellation.  I tried again later as I needed to get some shopping it had dropped off a bit so I was able to manage a walk to the shop, however when I got to the bus stop I noticed a large sign bus stop closed.  I checked later and nothing reported that my bus stops were closed, so if I’d managed to get past the wind I would not have been able to catch a bus no warning issued . No one has been able to pick me up during the day because of the road closure either so no access to transport whatsoever. Whilst the roadworks continue  it’s pretty isolating and no there’s no guarantee this will not happen again. How about the perilous bit, well one day on the pavement I saw a big truck parked right in the middle of the pavement, dangerous for someone totally blind, I have enough sight to avoid it but if it had been dark it might have been a different story.   Another truck was parked on the side of the pavement I needed to cross too. I didn’t know why that area seemed blocked by this truck, I discovered later why when I almost walked into a pink  barrier.  Whilst this work continues I’m potentially housebound for a large part of the day, I’m sure some of the other disabled and elderly folk around here will be too.

Now I’m increasingly concerned along with I’m sure many of my other visually impaired friends what unsuspecting  dangers  lie ahead once our feet head out the door and will it come to the point like a large percentage of visually impaired people that it’s just too dangerous and stressful to risk life and limb on this particular obstacle course of our streets which has no health and safety regulation attached to protect us.

 

 

 

 

 

A day to remember

A few months ago I was invited to a wedding reception by a couple of friends from my school days who were getting married, it was totally unexpected but rather nice.  I wasn’t sure if I was going to go or not, due to a number of reasons but particularly down to concerns regarding my recent health issues.  Nearing the time of the wedding reception although I was feeling better, I wasn’t sure about going as I was concerned about travelling alone.  Amazingly one of my friends was coming to my area on some business and said they would come with me all the way there and some of the way back on Sunday, so I accepted.  He got a good deal on a hotel too.

The day before we travelled to Blackpool I met my friend with mutual friends and their daughter in a local café where we put all our plans together, the couple offered to give me a lift to the station which was great too.  That evening I booked my assistance they said they couldn’t guarantee the help as it wasn’t 24 hours in advance which rattled me a bit as it’s not always possible to book ahead, plus I had done some last minute Christmas shopping which delayed my call.  The people I ring up at Journey care are fantastic though.

Our lift got us to the train on time and the assistance turned up, so that was a relief.  Although our train was on time it didn’t arrive on time at our change over stop which meant we missed the train we were to catch but fortunately there were more trains to Blackpool from that stop than I originally thought, so we hopped on the train and arrived in time to do a quick call in at our hotel to drop our things off and head straight to the wedding reception.

My friends daughter spotted me if I remember rightly and found a table with my friend Mrs Bubbles and her husband Benedict Bubbles, we were all rather hungry, I hadn’t eaten till early that morning, fortunately I had a few flapjacks with me which I had baked a couple of days earlier! I managed to go and see the bride who looked lovely in purple and white.

I looked around and spotted a woman from my school year and her husband who I spoke to for a while, when I was at school we had little to do with each other really, however,  we then had a great conversation, which is probably the first proper conversation I ever remember us having. Eventually they came over to join us.

Mrs Bubble, Una Stubbs  (the one I had a great convo with) and I ended up having a picture taken when Mrs Bubble suggested we all said pooh and wee. Mr Benn the groom came over to chat as well later.  Mr DJ came over to get messages to record for Mr and Mrs Benn which I thought was a lovely idea.

At around 5 we ate buffet food we all managed quite well considering there were many people who were visually impaired and some of them had guide dogs, as far as I know there were no crashes and bangs oh  sorrys said which can happen in those sort of situations.  I stayed with a friend sometime ago, who had other friends staying too, we all kept saying sorry to each other because of bumps and crashes, they named it the sorry house. Anyway there was a meat feast and some pizzas and quiche and desert to fill our bellys, I personally found the sweets a bit too rich for me but the rest of the food was great.

There was much laughter, people buying one another drinks (I don’t think I got opportunity to buy drinks) and  discussions varying from books to school and music.  The in house entertainment was a woman who could play various instruments  and sing which was quite good, I wasn’t sure whether it was all completely live or not but I certainly saw the instruments but it was very loud.  I think it was around 8 we had a meal I had lasagne, which was tasty.

The disco got going just towards the end, there was what I call a group karaoke going on, first with Bohemian Rhapsody by Queen, earlier on we had Oliver’s army by Elvis Costello. I joined in with the singing but not the dancing till the last track came on.  Apart from being grabbed by one person to dance with me, which I found rather uncomfortable, it was enjoyable both the singing and the dancing.  After saying goodbye to those I could Father Ted and I returned to our hotel.

I surprisingly slept quite well but it took a while to get comfortable as the duvet didn’t quite reach my shoulders.  The bizarre thing about my hotel room was that there was no window. There was also a lot of banging, however I have the beauty of lying on my hearing ear to block out the noise.

The following morning Father Ted and I had a delicious breakfast which was well worth the money, ahhs and oos could be heard when we had entered the restaurant because of Father Ted’s dog who is a gorgeous black Labrador who is a force to be reckoned with. After breakfast  we  headed straight off to the station to catch the train home.  At the station we met up with several of the guests at the previous nights do, and travelled home with one of them, who I will call Dougal, I don’t know why that name, a nice man who had few words but gentle ones.  Father Ted and I went our separate ways and I caught the last leg of the journey home, I was pleased to find I didn’t have to wait long for the bus either.

I want to thank Mr and Mrs Benn for inviting me and everyone who I spent time with over that period of time, it was fun and a privilege to be with such lovely people and certainly a day to remember.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Losing my way

I haven’t written a blog for a while here’s why, I feel lost, well more accurately I’ve lost my way.

I had one of those weeks last week where I felt let down and blocked at any progress I was trying to make.  So I come to a full stop.  How do I proceed and where the hell am I going?

As a child I would get lost, who wouldn’t, my solution find an adult or more accurately I would have lost an adult and try to proceed finding them, it would result of tapping someone on the shoulder or shouting Dad or mum at somebody only discover it was someone else, embarrassing.  Sometimes I’d be looking for a vehicle only to get into the wrong car that would look very similar, that’s happened to me about three times.  I’ve lost my reading glasses a million times or more I’m sure.

In times past I felt I’d lost my faith born out of dryness, disappointment or doubt, the truth there is God knew about the feeling of being lost when he shared the parable about the woman who had lost the coin, the interesting thing about the other two parables and that one is that the people had lost something that belonged to them, something that was already in their possession I’ll let folks think about that one.

The thing is I’ve lost my way, my direction in life, but I’ve not only lost my way or direction, I’ve lost my destination, what is my destination? Is it true that having lost my way I’ve lost my destination?

Destination determines something way off in the future, as human beings we are programmed to think ahead, destination determines outcome or achievement.  That notion of achievement is thought provoking,  should achievement be the end game of everything we do?

My problem has always been I may have a destination but my strategy in getting there is poor, I’m not really a strategist, it’s not really my strong point.  In some situations your destination can seem like an agenda and not a good one.  How many of us for instance in order to arrive at our destination we try and manipulate people or circumstances in order to arrive at the most beneficial outcome to us?   We may not be the only ones on that particular course of direction or destination.  Athletes compete in a race for the prize  they are heading the same way, their approach and strategy determines who wins, but it also determines who loses.  Is life about winning and losing, or rather should life be about winning or losing?

Believe me I’ve thought a lot about some of the things I’ve wanted to do, my motives for doing them are they pure, justifiable.  My search for work is difficult because I’m not the only one wanting work, so do many others, Is it arrogant to think I could be better than someone else to do a job?  To be fair having a dual disability means I’m further down the food chain of desirables from an employers perspective as being the best choice.

For all the advice people give me in my life, there are no simple answers.  and my problems can’t just be fixed.  There’s nothing worse coming away from a conversation feeling as though that person has it all worked out and you feeling as though you don’t measure up to those standards they are inadvertently setting.  To be fair I’ve done it too , come up with solutions for people when it’s not what they need at that time, when they have lost their way, or they don’t know what to do, in those circumstances all people need is empathy,  a listening ear and most of all encouragement, not solutions, pat answers or questioning.

In the meantime what do I do?  Well the only answer I have right now is rest, I don’t mean do nothing but not strive for answers, let go of trying to come up with solutions that are depressing which a lot of them are.  Just let go of trying  to work it all out.

I have to trust that somehow, somewhere or someone, will bring some light into my pathway, so I can move forward.  In the meantime I stay lost.

My intrest in politics

I’ve posted in the about me section of my blog of my interest in politics but only completed one post on the subject.  So I thought it would be a good idea to elaborate on the subject of my interest in politics and that of my approach to it, where it came from.

As a child my Dad and I would watch news and current affairs programmes on the tv and talk about what was being shown,  he wouldn’t sit there and start  educating as such it would go something like this some news item would come up and then he would just respond to something that was being reported and get irate with what he saw and I think I would then ask why, he would then inform me about his opinion related to the topic.  I also remember journeys out when I was older in the car going somewhere or other or when he took me on the seemingly long journey back to school conversations around current affairs, politics, history or religion would come up, as a teenager and adult these would become heated.  But I don’t want to go marching ahead here.

At both my primary and the first secondary school I attended we listened to a programme called in the news which explained news items in a way which children would understand and promote discussion.  I thought this was a great way to introduce children to politics, I used to watch Newsround as well with the other children but it wasn’t as good as in the news or watching programmes with my Dad.

I grew up in the 70’s and 80’s both extremes of the loss Labour 70’s and the super rich 80’s depending on your view of the situation.  I remember particularly the power cuts in the 70’s and  early 80’s of the Thatcher years, the strikes, the Falklands war, newsreaders who were rather serious and the interest in nuclear disarmament.  I didn’t have a particular view on these things at the time,  but knew of them.  The one thing I do remember during that particular period is my dad saying that under the torys the rich get richer and the poorer get poorer.  For some odd reason I always thought he was a tory, strange I would think that as that would not be the kind of comment a tory voter would make.  Maybe it was because we were the sort of family they would want to get their vote my Dad was the sort who believed in aspiration, he worked hard and climbed the career ladder, plus things  he said that led me think he was a tory.  However my mum and nan would talk about the politicians rather than the policies.

As I got into my teens I would still watch the news with the Berlin wall and communism apparently falling, during that time I started hearing people talking about the more left wing side of politics and that continued into my college years.  This was my favourite period.  When I was at college at the beginning of the 90’s I found myself with a group of friends who like my Dad were interested in the kind of things I was, we would sit at lunch times discussing American and European politics and some sharp disagreements would follow, however we were still great friends underneath the debates we were all feeling our way not just in our lives but in our concept of the world and the complex political arenas we were trying to navigate.  I found these conversations stimulating and at times memorable and they were happy memories.

I had various small stints in the public sector completing work experience or short term temporary contracts which gave me a small window of the work of local councils.  As a teenager I took GCSE Economics and both my BTECS were in Business and Finance, in these I came to understand  the government’s influence over the economy.  Interestingly having a faith impacted my political feelings, I would hear discussions that the torys would be the government Christians should want to have in power I suppose because of the security aspect and probably upholding Christian values at the time, equally I heard from the labour Christian left of upholding social justice and the poor etc.  Over the years I would meet spatterings of Lib Dem supporters or equivalent, which I learnt to understand more many years later.

During the mid  to late 90’s It was new labour and I was unemployed. I got involved with a local access group for disabled people which I thoroughly enjoyed.

In 2000, I got a job working for a media business during the years I worked at that company with people having strong political views,  my job involved research I got to find out what kind of things our Government at that time was spending its money on, I was always having to read politically related documents, publications and media, we were supposed to be apolitical which I believe we were, but we did have some trouble getting hold of various government departments to write for us some of it I believe was politically motivated unfortunately.  For instance we often had trouble getting hold of edit from Scotland, so the company had to open an office there, to raise our profile and credibility amongst certain Scottish Ministers.

Just before the torys came back into office the recession hit, which once the conservatives got in, started to have impact on the company I worked for.  Due to public sector cuts, private companies were concerned work would dry up for the them as a result.  The strange thing is much as both sides of the Government argue over spending both sides of the Government HAVE to spend money on public services, so there is always work for private companies.  Now you may think that I’m blaming the Conservatives for the eventual collapse of the company I worked for, but I found the joint impact of a decision by the government and the media to report it had a negative impact on the business I worked for, I think there had been some cuts just before the conservatives came into office, but more pronounced when the torys got back in again if I remember correctly .

So I ended up out of work again my own frustration of having a dual disability and being unemployed and listening to the radio got me interested in politics again, hence I set up a group for visually impaired people to have a voice politically, but it’s not a political organisation rather it’s just a network for information and support for that particular endeavour.

Throughout my life I’ve seen the way politics has weaved in and out of my life in various ways and means.  Although my Dad was the first to get me interested in politics the way he influenced me was more on my approach to politics rather than what he believed.  One thing he said that was helpful and I’ve always took it on board is look at both sides and you will get the truth somewhere in the middle, the more I’ve looked at politics and the things I hear the more that seems true, the extremes concern me, when I look at the extremes of politics its  either full of emotionalism or people who have irrational views that don’t have much grounding and don’t want to hear anything that’s not their point of view.  As one friend said recently the funny thing about extremes is that they change over time.  At one time one view was acceptable now would be considered extreme or vice versa.  My other approach is just to listen and seek to understand where someone comes from, even if their view is vastly different to mine .  To me different political parties have their strengths and weaknesses, this is where for example my contrary nature comes in, who do I really want in power, a government that wants to promote a strong economy where jobs are a plenty and a better standard of living or another that promises to take care of you when you are ill, or another which seeks a more consensual form of democracy.  Ultimately I’ve struggled to vote before because what I may want locally may not be what I want nationally or vice versa.

Ultimately I get tired of politics when words are often the measure of a politicians worth, not their actions, unfortunately that’s what they have to do to get the vote talk their way into a job, I suppose that’s a cynical view but there’s truth there, how can we really judge a politicians worth really, by their words or by their actions, as words can be deceptive but so can actions be misconstrued.  All I know is that I still enjoy listening to the debates on how to deal with difficult issues and vote on who will represent the things I care about the most locally, to watch how politicians respond to unexpected crisis.   To me a leader is only as good as their backbenchers as they have the word on the ground and have the best influence to make change.

To end my rather long post a quote that is valuable about any leader is this by John Maxwell

“People don’t want to know how much you know until they know how much you care”

I think that about sums up my politics.

Christianity and Disability

For some time now I’ve been thinking a great deal about this topic.  Just from different things that have happened.  I’ve wondered what is the best approach to talk about this subject or rather write about it.  I’ve come to the conclusion the best way to address it using the passage about Bartimaeus.

1 He cried out

Bartimaeus was on the side begging, but he heard a commotion, he asked what the noise was about and he was told it was Jesus, obviously knowing about who Jesus was, he cried out to him,  he cried out because he knew Jesus could help him.  The words he used was Son of David, have mercy on me.  Yes he was shouting to get Jesus attention because he wouldn’t have been able to find him easily.  But he could have cried out those words for another reason.  Particularly his reference to David.  Was he thinking about the story of Mephibosheth of which  he may have heard in the synagogue, this is recorded in 2 Samuel Ch 9.  David showed kindness to Mephibosheth even though it was his dead rivals sons relative.  Bartimaeus probably didn’t feel that he earned the right to sit at the masters table but asked for mercy anyway. Because he knew that David had shown kindness to someone with a disability.  David had shown kindness on the previous king’s relative by asking him to come to his palace and providing him a place to live and be seated at his table as if he was one of his own.  Mephibosheth was also given servants.  For this Mipobosheth had done nothing to deserve this kindness.  So Bartimaeus was appealing to the son of David’s kindness in the form of Jesus.

2 The people were stern with Bartimaeus

The people’s response to Bartimeaus cries were hostile and harsh telling him to shut up.  Why tell someone in need to shut up, why tell someone whose lived with debilitating condition for many years to shut up.  What is our response when disabled people complain or cry for help?  In fact thankfully in spite of the harshness of the people surrounding him he didn’t give up, he was single minded in his pursuit of Jesus, and had the courage to speak out all the more, telling someone to shut up can often lead to the opposite affect, nothing was going to deter Bartimaeus from receiving his sight not even the fear of man or peoples prejudice.

Before I go any further in this post with the different points of the story I need to say that from this point in the story by the two different accounts recorded in the Bible they diverge.  One accounts Bartimaeus throws off his cloak and  is called over by Jesus, in the other account, he tells those around him to bring Bartimaeus to him.  I’ve decided to go with the account recorded in Luke as I believe it better reflects Jesus character and actions and although I’m sure Bartimaeus threw away his cloak and , therefore throwing away his identity as a disabled person, I don’t believe because of his blindness he would have been able to make his way through a crowd of people to Jesus on his own, therefore I believe Luke’s account is more accurate.  Now I will proceed.

3  Jesus  stopped and commanded “Bring him to me”

Jesus stopped, why because he heard someone cry out to him.  Not just anyone, Jesus didn’t just ignore this man or his disability, in fact he stopped and listened, not only did he stop and listen he also responded. In fact he commanded those around him to bring Bartimaeus to him, he didn’t expect Bartimaeus to try and navigate to him on his own in the huge crowd pressing on him.  He honoured him, he knew his limitations and gave him dignity.

4 Jesus  asked him what he wanted

It may seem strange and it may seem obvious that this man wanted his sight back, but no.  Many disabled people sit in churches and the people assume if they need prayer its because they want prayer for the healing of their particular disability , or that’s the only prayer they need.  NO NO NO.  People with disabilities have the same needs as everyone else, provision, relationships, and emotional health.  so don’t assume when a disabled people come up for prayer its physical healing they want.  Jesus was showing the man respect, he may have already have known Bartimaeus needed physical healing but he needed to ascertain what he wanted at that particular time.  Jesus asked him in order to demonstrate the principle of not assuming you know what someone needs just because it’s obvious.  Also there is more to a disabled person than their disability and this I’m sure he wanted to demonstrate in his actions to the people around him these points that I’ve written here.

5 He responded to his request

Jesus did heal Bartimaeus.  But I want to point something out that may not be obvious. When did Bartimaeus get healed.  You might think it was when Jesus laid hands on him.  I believe it was far sooner than that.  I believe it started at the point where Jesus commanded those around him to bring him to him.  Once those people around Bartiemaeus responded to his command and  brought him to Jesus that’s the point where I believe healing began, because it was a demonstration of love, which I believe is a prerequisite for healing or at least the start.  As soon as Bartimaeus saw Jesus loving response and the immediate kindness from those around him he was able to throw away his identity as a disabled person and become someone with a disability.  Once he reached Jesus then Jesus did the rest.  Bartimaeus became a man who was blind but now could see.

So what does this passage teach us about disability and those of us who are Christians?

1 Listen to people with disabilities  when they cry out for help.

2 Don’t rebuke a disabled person asking for help.

3 Seek to understand what they want and not dismiss their issues and concerns as mere complaining.

4 Ask others to come and assist that individual but be willing to be the one to ultimately help that person if necessary.  Much of the time a disabled person just needs to be heard and understood and ultimately loved the same way as any able bodied person would.

5 Pray for them but ask what they want prayer for.

I may write more on this issue, because I know there are issues that have not yet been addressed. So don’t be surprised if I do another part to this in the future.  Please feel free to ask questions or comment. Thanks 🙂

Independence Part 5: Coping with losing your independence when your sick or disabled

This is the final part of my series on independence, however when I started writing on the subject of Co-dependency I thought of another topic in relation to that, whether I will add it to this series or put it as part of another I don’t know yet, but for now this is the final part.

Some might think reading this that I have no authority to write about this particular subject after all there hasn’t been a time when I haven’t been disabled.  But I believe although I may not have the qualifications or expertise to write about this subject, I’ve had to learn to adapt to the world around me with the disabilities that I have, I’ve also seen others find it difficult to come to terms with their lack of independence.  I’ve had people comment how well I cope and I think if that is a lesson to people maybe I can give a few tips, maybe in their own minds if they see me manage they may be able to do so too.

I feel for those whose independence has been removed from them abruptly as a result of illness or disability the road is often much harder whereas someone who knows a condition they have is going to get worse is not a great thing to live with but at least you have more time to come to terms with it and better timing and resources at your disposal in order to prepare for the eventuality.

1     Acceptance

Much of the way to deal with losing your independence is down to our thinking.  Acceptance is the first step, accepting you now are disabled or sick is vital for you to progress forward, that doesn’t mean you should define yourself by your disability or sickness, or even have it as part of your identity.  That disability or sickness  doesn’t own you doesn’t belong to you but it is something you have to learn to live with. By the way when I say it doesn’t belong to you I mean you didn’t choose it.  You don’t have to let it control your life either.  But you do have to accept that it’s there that it does change your life that it does give you limitations.

2     Do get angry

It’s ok to be angry about this change to your life yes be angry that you no longer can walk the distance you used to, you can’t read the paper anymore, you can’t pick up the cup with your right hand without spilling the contents, that’s fine.  Yes be angry when people are being rude to you or ignore you and treat you like a second class citizen, but process that anger properly.  Vent your anger on your own  or share it with someone who would understand.  As time goes on you may find that the length of time you are angry about a situation is a little less each time as either you learn to adapt or you get a tougher skin round others who may be unpleasant or who lack compassion.

3     Be honest when your not coping

It’s normal to feel depressed too, understandably you may have been through a trauma before your sickness and disability and now your having to adjust not only what’s happened too you before this happened but now adjusting to the outcome.  Don’t hide the fact your struggling to come to terms with your disability or sickness, let someone know or speak to a counsellor about your fears, anger and tears,.  It’s not a shame to be sick or disabled but it is a shame to hide that pain away from those who care about you.  They may already know that your not coping and it may be a relief to them for you to share that with them.

4     Get all the help you can

Get all the support you need from healthcare/social services professionals and any charities related to your condition,  Find support groups where you can go to and obviously if your reading this there will be social media support groups linked to your condition.  There are benefits available for people who are sick or disabled, don’t be ashamed to take them .  The government has made provision for them,  undoubtedly you’ve paid your taxes or national insurance  in the event of this happening so you will be entitled to take them, these benefits will help you be more independent.  The money may pay for you to get a cleaner if you need one or a support worker, to help reading your mail or take you shopping  or a qualified carer to deal with your hygiene needs, to give that family member a break.

5    Get adaptations

There are plenty of adaptations available on the market these days, from large print clocks to specialist gardening equipment, which means you may still do the things you want to do with the right equipment.  I for instance have screen magnification software  on this laptop so I can read the print on the screen, I have speech if  I need it too, I can change the size of print, the size and shape of the cursor and even the contrast of colours  if need be.  Some adaptations can be got through social services such as a chair lift for the stairs, or a  hoist for a bed.  There numerous products out there that will make it easier for you or a family member to be more independent.

6     There is hope

Just because you are now sick or disabled it doesn’t mean that your life is over, for some your life may have just begun.  Don’t try and run before you can walk, pace yourself, laugh when things go wrong.  It is possible to work when you have a disability I worked for 13 years in a media business,  just be honest about your limitations and what you need and you should survive.  In order to work you may have to learn new skills, colleges and University’s should have support workers and adaptable equipment for courses.   You can still travel but you can book assistance you can get someone to help you on and off the train, they provide wheelchair assistance on and off trains.  If you can’t hear very well anymore you can get adaptable phones, so you can still communicate.  There are many people who have learnt to adapt to their particular illness or disability so can you, as long as you are patient with yourself in your progress you can learn to adapt, don’t compare yourself to others in their progress whether they are doing better than you or worse, don’t give up, when things are tough, just remember you are not alone, many HAVE been in your shoes before you and many will still in the future. There will be good days and bad, there will be days when you may take two steps forward and two steps back.  Count your blessings, you may not be able to speak the way you used to but you can still see and hear the people around you and hug those close to you.  Other parts of our bodies can do the things other parts can’t anymore but in a different way, there’s a lady who can paint with her feet.

I know this may not be a comprehensive response to cope with losing your independence, but my tips above are a starting point, if need be follow my blog, I have my good days and bad days too, it’s not a bed of roses being sick or disabled but there are plenty of things to laugh about.  I’ll end with a funny story.  One of my relatives had bought a motorbike, he took us to show us the bike in his garage, well I took a photograph and what I took was not of the motorbike but of the lawnmower! Bye for now 🙂

Independence Part 4: Interdependence

In my previous blog posts we have covered what independence is, the irony of it Co-dependence and now we are covering interdependence.

If we want to be independent but we can’t be truly independent what are we left with.  The answer is interdependence, which is mutual dependence.  A friend of mine got confused with the terms when they thought co-dependence was interdependence.  The difference between the two is that co-dependence is over dependence or reliance on someone else and it’s not necessarily mutual.  Mutual dependence means that  you assist one another in becoming independent by supporting the other person or people where dependence is necessary.

I think a great example of this is in a good working community where everyone understands each others strengths and weaknesses.  For example there are two people one is a middle aged man the other an elderly lady.. The  gentleman  is extremely good at gardening but can’t so a button after his wife died, the elderly lady is no longer able to garden due to arthritis in her knees but she can still sew.  The man who can do her garden will equally be supported by the elderly lady’s ability to sew some trousers or buttons on a shirt. It could be that the elderly lady can teach the gardener to sew themselves and the gardener can show the elderly lady other ways to garden independently without bending down, this could mean the gardener can landscape the garden so there’s very little bending involved, or only have a garden with trees or hanging plants in.  This kind of example could be practised in other ways throughout the community.  A parent who has a car can give a lift for someone who doesn’t have a car in exchange for baby sitting duties.  If the person getting the lift was a teenager they can be taught to drive by that parent and the teenager can assist the parent on maths or IT if they are at adult education classes.

I personally think one of the reasons why so many people rely on welfare or rather have to rely on welfare is that the notion of community has largely disappeared in our modern world, although I believe it seems to be desired.  I know that churches and organisations are setting up projects within neighbourhoods, towns and cities in the UK in an attempt to address this shortfall.  But one of the reasons this is not happening is probably down to trust, can we trust someone to assist us who we barely know?

The place to start I think is in the family unit and try and extend the interdependence model outside of the family unit.  If your not a part of a family unit try and join a community project where your skills and strengths can be utilised and also get support for the things that you need support with, or the things you can teach others.

Now one important thing I want to address, disabled people are the ones that are often seen being the ones that need help, but apparently have nothing or little to offer, this is nothing further from the truth.  Many disabled people are crying out to be integrated into their communities, they have an awful lot to offer, life experience, flexibility, problem solving skills and that doesn’t account for the many other things.  Many of the disabled people I know are more than willing to give to their communities and some have had the opportunity to do so, one of my visually impaired friends, runs a choir for children in their community for instance.

So in conclusion look out to help others and be mindful of the fact that others are willing to help you, but don’t become dependent on people and do things not expecting anything in return no one likes people doing things for ulterior motives. But if someone has helped you in the past be sure to find ways of supporting them in return somewhere down the line, hopefully they weren’t looking for anything in return. Let’s hope we can learn in the future to find ways to not fear to depend on one another without becoming users or becoming over dependent on people. Not to be afraid of asking for help either, knowing that we may be able to do something in return in the future.

I hope this blog post and my others have given people food for thought.  My next blog post will be the last post in this series it will be on coping with losing independence as a result of illness or disability and how to adjust,

Independence Part 3: Codependency

In my series on independence, I’ve covered what it means to be independent, are we really independent, now I address a more complex subject that is relevant but difficult in many points.  At what point does dependency become co=dependency?   Let’s try and define co-dependency, by it’s nature it’s tricky, simply put  it’s when dependency has  gone too far.  Now before I go any further I want to say that co-dependency is necessary for some, but I’ll elaborate on that further later.

Co-dependency is mostly seen in abusive relationships or when someone has an addiction.  The persons needs become damaging to the relationship, either way both sides of that relationship there are benefits.  The roles of victim and saviour come to mind, the person playing the victim needs rescuing a saviour comes along to save them, the victim needs a saviour and the saviour needs someone to rescue, the saviour is drawn to people who are needy who they can help the victim simply suck the very life of the individual making demands, becoming manipulative, intimidating and controlling.  The rescuer or saviour has a deep need to be needed and relishes helping that person but unfortunately does not help them become independent, they continue to allow them to need them.  This link has  a great blog post on the 10 signs of a Codependent relationship, she has put it in a much better way than I could have done.  http://www.mindbodygreen.com/0-17039/10-signs-youre-in-a-codependent-relationship.html

One thing she brings out though which is very valid is the role of fear in a relationship, if the relationship is based on fear or your needs are fear based that’s a strong warning sign all is not well.  One thing worth pointing out is the rescuer is often afraid of letting go of the victim, they are afraid of what would happen if they “abandoned” the victim in their apparent neediness, this is particularly apparent where there is an addiction involved.  I’ve heard different people talk about what they do to assist their relative who had a drug/alcohol dependency, they are often scared of letting go because they think that person will hurt/kill themselves, but never consider that actually that person may come to their senses in those circumstances, or someone else may come along who may not become their next rescuer, but be able to have the strength to say no to their co-dependency, which is often hard.  Let me say I’ve been on both sides of the fence, thankfully the victim  side a long time ago, I now don’t need anyone in a sense, and I don’t need to be needed either. There is absolutely nothing wrong with having needs as long as they don’t become demands or they breach healthy boundaries.

Now I come to the more tricky issue of those who are sick or disabled. By very nature they will be more dependent than the average person and may even become co-dependent because that sickness or disability has not happened to them by choice and coping mechanisms are not easy to learn.   First to the person that has a sick or disabled family member or partner, don’t be afraid to ask for help when it all becomes overwhelming.  If your starting to feel resentful that may be a sign you are either doing too  much or examine why your doing something.  I know from personal experience that a disabled person doesn’t want to deal with someone who feels resentful for helping you.  But neither should the disabled person go without support if needed, here communication is necessary, if you feel you are doing too  much for that person, tell them but don’t be brutal about it.  For instance, If your constantly taking that person everywhere by car leaving little time for yourself just tell that person that your willing to help them but do they know anyone else who can help too, or even suggest someone you know who would be willing to help, most disabled people do not want to be a burden so sensitivity is crucial in these issues, equally to the person with a disability or sickness, be sensitive to people who help you, encourage the person assisting you the most to let you know if things are getting on top of them, and try and find others who can support you, don’t try and rely just on one person. be fair, be reasonable but above all respect that persons need for their own time.  In this situation It would be rare that a sick/disabled person is deliberately taking advantage of your help, just communicate when you sense things are starting to get out of hand. Obviously bear in mind if someone has very severe sickness or disability they will be co-dependent for instance if they have Alzheimers, in those circumstances  do  not be afraid at getting professional help.

If you are in a relationship that is suffocating, give yourself some space and think about what is happening.   Are you happier when your not in it? Are you the one squeezing the life out of the other person or is someone doing the same to you. If either is happening give yourself a break from that relationship or end it if you are in a position to do so, and get counselling or support.

In summary I would say

1     Have healthy boundaries in your relationships

2     Communicate when things are getting on top of you either way.

3      Seek help and counsel if things get difficult

4     Take a break if things are getting on top of you

5     Learn to say No to unreasonable expectations or demands

6     Recognise where there’s fear in your relationship

7     Don’t beat yourself up if you’ve been on either side of the equation it’s possible to change.

In Part 4 of this series I will be covering the topic of Interdependence 

 

 

Independence what does it mean to you? Part 1

Recently I was listening to a woman talking about the issues she was having looking after her husband who has some form of dementia, obviously looking after someone with this illness is difficult at the best of times.  I was listening to her sharing her frustration about her lack of sleep, the fact that her husband keeps waking her up during the night as he keeps getting lost. The following day she ends up tired out, amongst other things she was sharing.  She felt alone, abandoned, at her wits end, frustrated, angry, and most importantly trapped. I am certain her husband feels many of those things too, angry, frustrated, alone, confused and above all trapped.  They are both trapped for different reasons, one for being ill and the other for being in the role of carer.

The thing that came into sharp focus for me is the thing that upsets them both the most, the one they both share  is their loss of independence.

Independence to me is  the ability to do anything without restrictions from others or circumstances. Well this begs a questions. What does independence mean to us? and do we value independence?

Sometime in the first year of my life it was discovered that my life would be different from that of others, my parents discovered I was blind.  This meant some changes which would impact my life for good.  My parents I’m sure wondered how I would get on in the big wide world, what adjustments would need to be made in order for me to live my life as independent as possible yes as independent as possible.

From the day we are born we are learning and are encouraged  to become independent, to gradually learn to navigate our own way in the world, everything from feeding, clothing ourselves, to move around on our own, making important decisions about our future etc.  We are forever progressing towards independence.  But how many of us ever considered that there is a strong possibility that once we gain independence that we can lose it in an instant or gradually and how we would cope if that was lost, how many of us have really faced that possibility.

I’ve been in the position that although I have some form of independence, it is hindered.  I can’t drive so I have to rely on a good transport system and have to plan my journeys more than most, accounting for time allowance, busy periods, cost, engineering works if it’s a train journey.  I can’t go abroad on my own unless it’s to see my relatives, or an expensive travel service, other groups aren’t disability friendly the mobility problems are magnified if I tried to go on my own.  In other words I do have to rely on others, services etc to be truly independent.

Anyway I don’t want to make it sound like my life is terrible it isn’t.  The point is I VALUE the independence and freedom that I have, and I know some people have it worse.

I think that so many people don’t consider what it would mean to lose their independence, they take it for granted, and some particularly dare I say our Government see no problem in removing anything or anyone that helps people who are sick or disabled to live their lives independently.

When people lose their independence I find most people can’t handle it and few really come to terms with it.  They’ve never thought it would happen to them or refused to face the fact it could happen to them.

When my lovely nan was unable to walk into town anymore, she had to rely on my aunt to get her shopping for her and would soon get upset if my aunt got her the wrong things, she couldn’t do her own shopping anymore, she didn’t have the freedom of choice she used to have and her frustration and resentment of not being independent would boil over.

For those who are independent now think about what you are free to do now on your own without having to rely on anyone else, think about what you would do if you lost it.  Finally don’t take your independence for granted you don’t know how long you’ve got it for.

This is looking to become a 4 part series.  The next blog entry will be addressing the irony of independence.