» Lorraine Hershon

Is My Sense of Humour Disabled?

Mark Glasgow — Tue, 06 Mar 2012 14:37:47 +0000

There seems to be a current trend for comedians to push the boundaries of taste and decency further and further. Nothing they say is out of bounds, everything is up for grabs in the hilarity stakes and it’s always good publicity to be ‘controversial’ isn’t it? I’m not sure how funny these people really are; personally, I don’t get the humour that I’m supposed to find shades of genius in. Name calling is something I did when I was seven and I’m grown up now.

An interesting concept taught by Jewish religion is that known as ‘Loshen Hora’, or The Evil Tongue. Speech is considered as such when it suggests something negative about a person that was perhaps not previously widely known, or which isn’t strictly intended to correct or improve a negative situation. I guess we would also call it gossip.

Judaism recognises the strength of words. It’s also true that most of us are very bad at thinking before speak – or neglect to do so at all. As I write this, I’m trying to think about composing the words that will best convey my true meaning, to make sure I don’t confuse or offend. I’m aware of how it all works, especially in today’s world.

Free speech
It has always been that the tyrants of history have attempted to control free speech. Joseph Goebbels, Hitler’s minister of propaganda, promoted the burning of books, and then there was the Stasi, the KGB and the Securitate. Now it’s trickier since the global use of Twitter and Facebook helps to spread words and ideas within minutes.

Words are power, and words count. We all know that much. Looking, for example at some of the most enduring sitcom writers of the last 50 years, the best are those that use shared experiences in their humour and clever use of language. Ronnie Barker, Jimmy Perry and David Croft, understood how to make ordinary situations absurd and funny. They incorporated experiences that we can all relate to because that’s where the best humour exists. Laughter is fun but shared laughter is better.

I am not saying that disability can’t funny, because of course it can. In my view though, it’s not until you have lived the situation yourself that you truly know if it’s funny. For instance five tetra/paraplegics trying to pick up the dropped snooker cue chalk is funny, but then maybe you have to be there. That’s the point: most comedians cannot and probably never will know what the real situation is like. Disability is likely to be outside of the realm of their experience.

So should we be upset when a so called ‘comic genius’ uses inappropriate words in his routine, or just accept that he is joking, that it means nothing, that it’s a laugh? The comedian himself might well claim that we’re too ‘PC’ and that he meant no offence and that the world is just over-sensitive. Really? Does he expect anyone to believe that? Do we really think a comedian doesn’t realise the power of the words he uses? Is he really just being funny, or is it more that he’s just showing himself to be terribly ignorant. I know what I think, that’s for sure, and I for one do understand the power of the words I choose to use.

Lorraine Hershon Nov/Dec Column – Pleasure Island

Mark Glasgow — Sun, 22 Jan 2012 10:03:30 +0000

They do say that a change is as good as a rest, and that’s just what I needed.

This year hasn’t been the easiest, so as the summer rolled round again, I decided to look for an adventure.

First things first: I spent some weeks perusing websites and doing ‘costings,’ because I’m the kind of person who plans everything down to the finest detail. I should have been in the military such is my planning finesse.

Where should we go this year? The criteria were tough: accessible – ish, at least for me, suitable for a family with small boys, minimal boats (because my husband doesn’t do them) and of course affordability.

Choices

I looked at France but the pound being as it is, it came out as costly. In fact anywhere in the eurozone was soon eliminated. We looked at Scandinavia but it was a long drive. So the options narrowed considerably. Until that is, I looked at Orkney.

Ever fancied going abroad that isn’t abroad? If so, then Orkney is for you. It’s just an hour’s ferry journey (which was just about manageable). It felt like going on a long exotic holiday but without having to change currency. It has history and culture, nice cafes, wonderful whisky and fantastic scenery including Scapa Flow, Ring of Brodgar and St Magnus cathedral; I could go on.

I always worry about accessibility but generally it was pretty good. Most of the shops either have no steps or just one teeny-tiny one. The cathedral isn’t particularly easy to get around but seeing that it’s almost 1,000 years old, that’s probably understandable. The boys found it all wonderfully exciting. We did all those things you do when you have children: kite flying, beaches (not me though), picnics with a real wicker basket, odd little museums such as that devoted to the humble ‘wireless’ and so on. It was a fantastic, adventurous holiday that hooked us completely. Everyone is keen to go again next year and I can see its one of those things that could become a family tradition, something they will want to repeat in 30 years time with their children.

Where next?

I’m desperate to go to Shetland now, although I imagine the accessibility might not be great (although it might be better than I think). My chances of getting my husband on an overnight ferry are slim, but I’m working on him.

I know that living with a disability can sap your spirit and it can be easy to get into a rut. Before you know it you stop being bothered about doing things but I’m so glad that I made the effort to enjoy an unusual holiday destination. It wasn’t always easy and of course we all prefer the ‘known’ but the buzz and stimulation of a new experience shouldn’t be underestimated. So, go on, try something new; you never know until you do. Now, shall I do that parachute jump I’ve always thought about doing? A trip to Shetland maybe, or is it time to buy the Jaguar?

Pullout1:Everyone is keen to go again next year and I can see its one of those things that could become a family tradition.

Lorraine Hershon JanFeb Colomn

Mark Glasgow — Thu, 24 Feb 2011 16:23:07 +0000

Q: Dear Mrs H, We are doing a consultation event next week ad would love you to attend. We can pay you in tea and biscuits and of course wont be able to pay for your time, expertise and knowledge, your childcare or your travel costs even though we expect you to come to the other side of the county. As you know these things are done on the cheap so we couldn’t possibly set a precedent by implying we value you.

Since the arrival of a new Government this year, consultations have gone into overdrive, and as a result I get invited to everything within 100 miles. Yes I get invitations every week inviting me to come to this consultation or that one, or maybe the other one. Invariably they start at 9am and are the other side of the county so I agonise over each one, should I go or maybe I should go to a different one instead? Which one is most important I wonder and then I remember!…. You see I know how these work as I used to be one of those people who ran consultations. They tend to be put together by earnest individuals who have been told they must do a consultation after all it’s a legal requirement. They then put on events that prove to be long and irrelevant, they provide an inadequate venue, inadequate lunch, inadequate parking and inadequate toilets and at the end of the day feel pleased with themselves for running such a ‘unique’ event. After which there wont be any feedback to the powers that be because no one really wants to know how it is, they just want to make sure they have done the ‘consultation’. So we are in the middle of a public consultation on Disability Living Allowance. I have gone through about half of the document, and of course all of the easy read version. One of my first reactions is that the document relies heavily on “spin” to sell it to the public – they have our very best interests at heart after all but when the government relies this heavily on “spin”, inevitably the proposals would be very unpopular if their truth were made clear.

Synopsis: We wish to support the most deserving section of our disabled population, and so must redefine who they are, because current definitions leave us supporting too damn many disabled people. This is “unsustainable” (read: we are broke).

Any group (or Government) that relies so heavily on propaganda to make its case does so because they are lying. What is the balance between their lying to themselves and purposefully misrepresenting their intentions to others? It would be helpful if we had an idea. In this situation I believe the only available strategy is to fight for fair rules and regulations line by line by line, and to point out again and again, forcefully if necessary other areas where the Government could save much more while hurting fewer. The question I ask though is Anyone listening? Good Night and Good Luck….

LORRAINE HERSHON

Mark Glasgow — Wed, 17 Nov 2010 09:11:59 +0000

… reflects on the age of disablism….

Scrounger, cheat, fraud, thief. Just some of the words used to describe those of us claiming benefits. Another phrase I like is ‘lifestyle choice’.

Sadly we seem to live in a society that feeds on fear, greed and envy. Read the newspapers or watch the TV and they are always full of stories about people claiming huge amounts of benefit while running marathons, climbing mountains or ballroom dancing.

If you read any online comments you will find a braying mob mentally which says we should be grateful for anything; that we should be tugging our forelocks in subservience and shuffling off into darkened corners where we can hide with our meagre handouts.

We have had sexism, and racism but we now live in age of disablism. It is a return to good old Victorian values.

I was listening to one such discussion on Radio 5 live and someone came on to explain that he had paid years of National Insurance before he became ill and at that point I had a shining realisation, yes. National Insurance! Bingo! Isn’t the clue in the name? It’s a kind of insurance that’s there to cover benefits should events happen that you need it. Just like we all expect our house NOT to burn down when we take out our home insurance, most of us don’t expect to become disabled in our lifetimes. But of course it happens, but it’s someone else isn’t it? It was never going to happen to me, I’m sure you never thought it would happen to you, never planned for this lifestyle choice.

Fortunately we have our insurance to call on, that thing called National Insurance, and however it’s not what we thought anymore and its shameful. I know people who live desperate lives, they cannot pay for heating or food so they have to choose daily whether to be warm of whether to eat.

There’s a lady local to us, who spends hours in a local supermarket waiting for the final reductions because that’s the only way she can eat. We seem to live in a harder, crueller society that mocks those at the bottom and the only way to describe it is shameful but no one really cares. So its time we stood up for ourselves.

Our benefits are not handouts, they are our right. I alone have paid 20 years national insurance contributions and I suspect you have too. These benefits are not free money, we have paid for them and the public and politicians need to be reminded of this. With a steady rise in animal cruelty as well as a rise in disablist hate crime, we should judge a society by how well it treats those most in need and those most unable to defend themselves. Our society does not stand up to scrutiny, it scores low in terms of compassion and caring. While I wish I could hold us up in a shining light of good practice, I find our Big Society sitting in a very dull light.

… Shares Her Experiences of Her First Trip to London in Her Wheelchair.

editor — Thu, 28 Oct 2010 10:35:03 +0000

I needed adventure and excitement and, as they say, a change is as good as a rest – so I have just returned from my first ever solo wheelchair trip to London!

Actually it’s my first trip anywhere alone with my chair, but I wanted to meet up with an old friend and didn’t really want to drive all the way, so felt it was time to give public transport a go. So, in keeping with the spirit of adventure, I booked a flight to Heathrow and one back from Stansted.

The flight down to London was great – quick, punctual and the service was terrific. On arrival I took the Heathrow Express which, at a whopping £18 single fair, turned out to be the only accessible option, except a taxi into central London. Actually, while it touts itself as ‘accessible’, I needed help onto the train as there’s a gap of a few inches wide and a funny type of door ‘lip’ to hop over – difficult, especially with a bag.

Once I arrived in London I decided to make my way from Paddington to Oxford Street and then meander across to Covent Garden. At this point I realised London does not yet have joined up dropped kerbs. You get half way down a street and then find you can’t cross the road as there is only a dropped kerb on one side, so I resorted to free-wheeling down the roads of Mayfair instead!

While Oxford Street is allegedly one of the UK’s top shopping avenues, the state of the pavements are truly awful. When you walk you really don’t notice but, once you roll, you see every single bump and crack. Oxford Street is grim for wheels and hard on hands, and I was lucky to only nearly fall over once.

Later that day I took my first bus ride as a wheelchair user. Transport for London tells you the buses are accessible. Strictly speaking they’re only accessible if you have someone with you; it’s hard to get on alone as the ramp they provide is far too steep, meaning that you can’t quite get on without a push and can’t get off without flying head first as your wheels hit the pavement (or head over heels if you try the backwards option)! When I asked the driver for help he refused, citing health and safety – whose, his or mine? Fortunately, a fellow traveller came to my aid.

The final part of my journey was from North London to Stansted. Not too difficult, you would think, as there is a National Express bus going that way. So I emailed the company to find out. Phone us, they replied. So twice I phoned their 0870 number; twice I was told there was no one there who could help; twice I gave my details and twice someone promised to phone me back. They didn’t. Luckily a friend took me to the airport instead.

It was a fantastic adventure though, my very own ‘Planes, Trains and Automobiles’ – where to next, I wonder?

Why Do Some People Think They Can Say What They Like About Disabled People?

editor — Wed, 31 Mar 2010 15:57:21 +0000

Lorraine has some great news.

Life’s a funny old thing, isn’t it? It doesn’t seem to matter how much we think we’re in control, life throws in various unknowns along the way – just to keep things interesting.

Sometimes I think it might be quite nice to lead a steady, reliable sort of ordinary kind of life. You see, I used to be one of those people who was so organised; I had these terrific five year plans where I would map out my career, finances and personal life with Great Expectations. The only thing is, since we got into the 21st century, nothing has gone according to plan, and I’ve had to forget all the grand designs – they’re worthless.

So following on from that I can announce I’m pregnant… again! If I were to say we were amazed it would be an understatement. We are simply shocked and flabbergasted, but here we are looking at the birth of our third child in mid October. What can I say? Of course I’m pleased, thrilled, and excited – but it wasn’t in the grand plan for 2008, that’s for sure!

Unfortunately I’ve had some negative reactions from family members and now I feel less than inclined to even mention it. My surprise and excitement has been blunted. Now it all seems just a bit awkward.

I would have thought unpleasant comments about my ability to parent in particular were uncalled for – actually I do a pretty decent job on the whole. Just because I’m not as physically able as some people doesn’t mean that I’m totally incapable of being a parent – but then, it probably does seem like that to some unenlightened individuals. In my own experience there are always ways and means of getting things done; sometimes you just have to be more creative in your thinking, that’s all.

So don’t ask me “How will you manage?” Don’t even think it! I’ve already had several people say that and, you know, it’s a bit insulting to say the least. This is one of those life affirming events when, even if you are surprised like us, you really want people to say: “That’s wonderful! Marvellous! Congratulations! Well done!” Because the creation of life is wonderful and marvellous, isn’t it? Yet people think they can say anything they like to me and my husband and actually it hurts a bit – well, sometimes. If nothing else it shows a lack of respect, not just for me but for anyone who is disabled. As my husband retorts exasperatedly: “Of course we will manage. It’s not like we’re living in a shack in the middle of Africa with eight kids and no drinking water.”

It’s just going to be a bit more of a challenge than I was expecting! And I can’t resist a challenge can I?

…Loses Her Mona Lisa Smile

editor — Wed, 31 Mar 2010 15:49:26 +0000

Keeping your dignity’s not always an option when the world takes you by surprise

Despite life’s surprises over the last few years, I’ve always tried to maintain a certain level of dignity – or could that really be vanity and pride in disguise? Being honest, I give off a certain level of smugness when talking to friends: “Fallen out of my chair, in public? Oh no, not me, I’ve never done that,” I say, with a Mona Lisa smile.

Granted I’ve fallen at home many times, and once did a back flip against the back door that left me stuck between the bin and the recycling, but no one apart from my husband has ever seen it because I always brush down very well and sail onwards as if nothing’s happened.

Of course, all good things come to an end eventually, so my enviable record of not humiliating myself in public bade a final farewell on a recent trip to Liverpool. I’d booked a room at the Crowne Plaza, Liverpool’s premier hotel (so I’m told), and – indeed – the Concierge met us on arrival and took our bags up to our room. About an hour later we were getting refreshments in the lounge, which was when my husband realised we had left something vital in the car. “Don’t worry,” I said. “I’ll pop out and get it.” As you do.

Liverpool’s Crowne Plaza hotel has a revolving door. Not a big revolving door, nor is it a fast revolving door; in fact, when it comes to revolving doors, it’s fairly unremarkable. I can assure you that, over the years, I’ve successfully negotiated far more challenging revolving doors with ease – which made it all the more galling when I was caught out by one that seemed the most innocuous in the world.

Within about two seconds of entering the door, I had that sudden horrible feeling you get just before you flip over. There was a mad scramble to grab anything in a vain effort to stop gravity doing its worst, but by then it was no good – once you’re gone, you’re gone! With a whack on the back of my head, I was suddenly jammed a couple of inches from the floor with my legs dangling over my head and my backside flying high. Maybe dignity saw me coming and ran through the revolving door without waiting for me?

Needless to say my husband was totally oblivious to the whole incident, as usual. Luckily, within seconds, three men appeared. One squeezed into the door with me and then between them, they pulled me up and out. You can imagine I was feeling so very “dignified,” my face was burning with embarrassment and I felt very stupid!

How it happened I shall never know, but I nursed the bruises for a week. As for my smugness, let’s just say it’s something I no longer indulge in – a bad habit best now forgotten!

Why Does Child-Friendly Not Mean Wheelchair-Friendly?

editor — Wed, 31 Mar 2010 15:43:10 +0000

I like to think that being a disabled parent of little boys is no more challenging for me than it would be for anyone else.
Most of the time this thought works well. I do the things that all parents do and don’t think twice about it. Of course I am constantly dealing with certain attitudes, especially from healthcare workers who tend to greet me with raised eyebrows – female, wheelchair, baby – before composing themselves again. Disabled people having children still seem to be a rarity for them, which is odd because I know loads, so they do exist!

My husband is now used to having people talk to him rather than me and always makes a huge point of deferring to me in such situations. I’ve long since realised that it’s going to take more than just me to change attitudes and opinions, but it’s coming along slowly. However my biggest issue has to be access. How many times do I have to drag my husband along to something because I can’t get myself and the baby into the premises? Too often that’s for sure. So, do I make a huge fuss every time or just go with the flow?

Recently I was invited to attend the local breast feeding group. Because I never get to go to things much, I decided to make it a date. Experience, however, means that I always do a little survey of a new venue well in advance, because I’m rightly suspicious of how “accessible” places really are. All too often, I’ve discovered that “child friendly” does not automatically mean “wheelchair friendly”. As it turns out, this breast feeding group holds its meetings in a building built in around 1965; that means there are several big steps that I can’t get up without help, while parking is only available on a busy road.

I am certainly not amused about this. On my first visit I took my long suffering husband along, just so I could get in through the door. You can guess how heads turned when he walked in carrying the baby, but he just shrugged, smiled and pottered off to read his newspaper for an hour.

Since then I have sourced a big ramp that we intend to put down and leave for the next few months, as I’d quite like to go there on my own. I’m not sure that people understand how I want to do attend these sort of meetings without my husband hovering about; that I just want to do normal “mumsy” things and enjoy a bit of girl talk!

Yes, there are more challenges as a disabled person with a new baby. There are obstacles to overcome, and I certainly can’t take for granted the things that other new mums do. That said, I have also found that people are overwhelmingly helpful and accommodating once they understand my needs. They are ever eager to rectify an awkward situation and put me at my ease. A bit of help, as they say, is worth a ton of pity. The pity I can do without.

…Is Focused on the Impending Birth of Her Fourth Child

editor — Wed, 31 Mar 2010 15:24:59 +0000

– and why it doesn’t get any easier!

Quite possibly, by the time you read this, I will have had our fourth child and finally put to an end the conundrum of where to have him. After the slight mishap with the last baby – who decided to stop breathing 20 minutes after having arrived in the world, and had to be resuscitated before being whisked to hospital – my husband has been understandably rather anxious and insisted that this one should arrive in hospital.

As a disabled woman, my whole birth experience has been very mixed. Number one son arrived safe and sound with me lying on my back protesting. Number two arrived after a 50 mile emergency dash to the nearest major hospital, following a minor problem; he was born with me on my back, begging and screaming to be allowed to shift position, as lying on my back during labour hurts. Not only does it hurt, it is absolute agony for me and the very worse position to be in!

As I have the fortune – or misfortune – to have rather short labours, the options for pain relief are limited; for this reason, we chose to have number three at home. We also live in a very rural location, so the hospital isn’t exactly on our doorstep and I might not get there in time! After being assured they would accommodate my needs, though, we decided upon a hospital birth for number four.

A couple of weeks ago I had a chance to discuss the various options with a member of the hospital staff.

“Could I have a pressure relieving mattress?” I asked. “I won’t be able to turn over.” (Also standard mattresses feel as comfy as sitting on a bag of stones.)

“All our mattresses are fully adjustable,” came the reply. Hmm! Not what I was hoping for.

“Please don’t put me on my back,” I then said.

“Well, of course we shall do our best to accommodate this, but we will if we have to,” they replied.

No, I thought. You won’t!

Finally she asked: “So, you are pretty mobile then?”

“Yes’ I replied, not sure what she meant by this, “but I won’t be able to stand up, you know.”

I left wondering if we had had the same conversation. Despite supposedly having read my notes she seemed to have very little awareness of my needs. I felt confused and uneasy at the whole thing and not particularly reassured!

The medical profession still doesn’t realise that one size doesn’t fit all, and that we are made more disabled by their failure to understand the social model of disability. I am not just a medical package that needs to be squeezed into their expectation and presentation of a condition. I am an individual. I am Me! So will I have the baby in hospital or at home? I will find out in the next few weeks, that’s for sure!

…Sometimes disables herself!

…Frets About Visiting Places for the First Time

editor — Wed, 31 Mar 2010 15:20:01 +0000

A lack of information can really disable you.
“Let’s meet in Durham,” a family member suggested recently. However, once I researched the geography of the city I wasn’t so sure.
According to the cathedral website it wasn’t great for access, being set on a hill. As we have three young children, plus a wheelchair, to get around I wasn’t sure it was the best place in the world to have a day out.

I’ve noticed that people take little notice of accessibility until you actually need to. We are forever being asked to go to places that frankly are neither wheelchair nor child friendly, that have steps hidden all over the place, steep inclines, poor cafes with even poorer facilities. “It’s all about Space,” my husband says. As in ‘the Final Frontier’. He’s right of course; the time has come in my life where if there isn’t space to take a wheelchair and a buggy then we’re not interested in going. It’s one reason I’m sure that I see parents dragging children around shopping centres – our own local out-of-town complex is ‘Wheelchair City’!
Gone are the days of spotting a cosy wee tea room and popping in for a scone. Now I’m looking for somewhere I can get in without having to move half the clientele and apologise non-stop for the inconvenience. Those pretty seaside towns with their quaint cobbled streets, at an angle of 45 degrees, are not for me anymore.

What really surprises me, though, is the lack of information that’s available. Whenever I go anywhere new, I look for as much information as possible and – despite all the legislation in the world — it’s pretty hard to find out the things you really – I mean, really – need to know. Like, how flat is a town? Where’s the best place to park, realistically? What can I really see? Where are the easiest places to go for lunch? How many accessible loos are there? And – my biggest bugbear – is there gravel all over that ‘accessible’ path?
Because of current legislation I’m sure people tell you the wrong information: (a) in the hope of appearing accessible, when it only is with difficulty; (b) not having any training or firsthand experience of the needs of access; and (c), not wanting to be honest because they’re worried about being prosecuted.

The result of all this lack of information means that I stress horribly over visiting new places – as I have no idea what to expect – whether I should even go at all. On several information, I’ve had information so wrong that the day has been totally ruined for us. It’s not rocket science to realise that wheelchairs, hills and steps are a really bad mix – is it?

I just don’t want the stress of attempting it and I know my husband doesn’t want my stress either. So it’s time that service providers gave the information we need – and not what they think we want to know.

…Sometimes Wonders About Her Sanity!

editor — Wed, 31 Mar 2010 15:17:41 +0000

Wearing Y-fronts on your head can sometimes work wonders.
I’m sure there are times in everyone’s lives when we catch ourselves doing something and think: “I must be stark, raving bonkers!” Unsurprisingly, with three under-fives running riot around the house, I find I’m doing this more and more.

When you have little boys, you end up doing all that little boy stuff; trains, tractors, cars – in fact, anything with wheels, including chairs! However our five year old has discovered lavatorial humour in the best Carry On… tradition, while his brother (who is now almost two) is even worse when it comes to toilets and all things personal. I now find myself doing the hilarious Let’s Pretend To Poo” Game, the Who’s Farted? Game, the What’s That Smell? Game, and the Bodily Parts Game. Oh yes, it’s a laugh-a-minute, that’s for sure!

So, when I found myself sitting on the floor on Saturday night surrounded by toys, boys and a dog, I guess I shouldn’t have been surprised to find I was also wearing a pair of boys’ pants on my head. This was the infamous Is It A Hat? Game which my boys absolutely adore. Basically we find lots of odd things, plonk them on our heads and shout “Is it a hat?” At which point they split their sides laughing and I start thinking: “I can’t believe I’m sitting here with a pair of Y-fronts on my head, I must be absolutely crackers, and whatever happened to all those aspirations?”

The serious side of this is that it’s a very good way of engaging with my children. Generally, I suspect that disabled parents have to work harder at the whole parenting thing. I can’t run round the house after them, I can’t do as much physically as a whole, and I certainly can’t resort to physical punishment – even if Id wanted to! Too often you see parents shouting, berating and generally humiliating their offspring, the main reason being that they can.

Thankfully I can’t and wouldn’t, but what being disabled has brought me and my children is that parenting can be fun and silly and relaxed. “Don’t worry, it will wash,” is an overused phrase in our house. If I stressed over the small things, my head would probably explode. My parenting relies very much on verbal skills – both mine and the children’s. Communication is the key.

Come to my house and you will find endless chatter between me and my children, which I believe has generated much more respect on all sides. Humorous games actually allow me and my husband a lot more control over our children’s behaviour – as a rule – and, of course, it’s taught me a huge chunk of patience – something I’ve lacked for a lot of my life. So, if you find you’re tearing your hair out over screaming children, remember that putting Y-fronts on your head has worked wonders for me, and it might just do the same for you!

…Sometimes disables herself!

editor — Wed, 31 Mar 2010 15:16:47 +0000

Truth is, disability can sometimes get more difficult over time.

People think that once you’ve been disabled for a while you get used to it. Well, only sort of. To be honest, some of it actually gets more difficult as time goes on.

You see initially I was super-duper positive, looking on the bright side of life and being the all-singing, all-dancing, superwoman that everyone knows and loves. I could do anything and everything. Nothing was too great for me. Pollyanna was my middle name.

Then I came down to Earth, not so much with a bump but a big fat splat. Since that time I’ve pottered along in life, and found my place in the world a bit more. Now I have children, though, the dynamics have changed and I’m all too aware of everything that people say and do around me. My boys are still little, but I worry about becoming an embarrassing parent – it gives me sleepless nights at times. I hope my children won’t cringe when they introduce me to their friends. I worry they might be the subject of bullying because of me – I know it happens.

Suddenly I’m conscious of how inaccessible so many places still are, when you’re in a wheelchair and have small children in tow. Even if I’d wanted to go, I couldn’t have got into the church where my son had his carol concert last year. It’s all still a bit awkward if I have to pop into school for something. What do teachers and parents think? Should I say something? “Oh don’t worry about me, I had a bit of a bad back after falling down the stairs/being run over by a speeding car/being attacked in the street/falling 10 stories/a deep sea diving tragedy/a ballooning accident/ a medical mishap…”

I’m super self-conscious among the other parents – worried that they might be feeling uncomfortable.

I know this sounds amazing to anyone who knows me, as I generally give the impression of being “person most likely to…” – only I’m not. It took me ages to pluck up enough courage to go to the school door to collect my son. When we had his birthday party a few weeks ago I felt like I was the most glaringly obvious thing in the world, as if I had a big boil on my nose. Oh, almost forget; it’s actually a wheelchair!

I can overcome this. I know it’s silly, but in my head I pretend I’m playing a part, just like I did in all those school plays – deep breath, then enter stage right and straight into the first speech! It’s a good technique; it’s served me well over the years and, even though I’m still very nervous, I manage to get through another public outing. Like everything, I know in my heart this feeling will pass, that’ll get better with time.

…Praises an Overlooked Hero

…Praises an Overlooked Hero

editor — Wed, 31 Mar 2010 15:07:02 +0000

Most people have no appreciation of the role of a carer.

Someone recently told my husband that I was the most inspiring person they had ever met. That’s very nice but, without wanting to sound mealy-mouthed, is just a bit glib – and completely ignores our situation.

The most inspiring person is, in fact, my husband who – like every other carer in this country – is overlooked, forgotten and taken for granted. He’s the one who lost the life he knew when I became disabled; the one who gave up his job; the one who cooks, cleans and shops; the one who organises and takes the children on outings. He’s the one who puts the vacuum cleaner round the house, digs the garden, walks the dogs, bathes the boys, and does the bedtime stories. If I need him to, he’s the one who gets me out of bed, organises breakfast, helps me bathe and dress – or anything else I might need help with. He says he doesn’t mind but I know there must be times when he wonders about the route his life has taken. What happened to all his ambitions, and the career he put on hold – probably forever? I know that he feels it the most when people ask him what he does. Men are supposed to have great careers and are all too often judged by society on the size of their pay packets. “Tell them you’re a north sea deep sea diver or something,” I say. But he doesn’t. He’s honest. He tells the world he’s a carer. Unfortunately most people have no appreciation of the role – you don’t until you are there. For his all his trouble my husband gets £53 a week from the government, depending on a yearly assessment of his ‘needs’ – whatever that means. Regardless of politics, government after government has promised a better deal for carers but nothing is forthcoming – after all, it costs money and doesn’t really win votes. So my husband and thousands of carers across the country remain invisible, saving the nation a large fortune in care costs and getting nothing in return – their only reward being that they do it out of love. Although my husband wouldn’t have it any other way, I know he’d like a bit more money in his pocket and perhaps a few more opportunities to get away from it all – safe in the knowledge I’m not going to end up flat on my face with the boys running riot! For most people caring is not just about the 35 hours a week the government says you must do; it’s 24/7, forever and ever. So, the next time you’re looking to be inspired, think about the people who either help care for you, the family or friends who look after elderly parents, neighbours or children with special needs. And ask: when did they last get a day off?