Posts Tagged ‘disabled people’

FOUR FINGERS AND THIRTEEN TOES – Time for a Festive Grumble – Before going off for a Jive

December 15, 2014
Stephen as a Storm Trooper!

Stephen as a Storm Trooper!

Here we are, less than 2 weeks before the “big day” and instead of sipping mulled wine whilst giving orders to my little elf (otherwise known as Stephen) who should have been busily wrapping parcels, we embarked on a rather hectic visit to London; I then had preliminary rehearsals for a variety show, in which I’m performing; and, added to that I have been trying to complete a commissioned painting in time to be delivered as a Christmas present!

However, all of this palled into insignificance by the latest debacle against Disabled People as reported in the media last week.  Three senior Court of Appeal judges – Lady Justice Arden, Lord Justice Lewison and Lord Justice Underhill, overturned a landmark court ruling from September 2014, making it a breach of the Equality Act 2010, for bus drivers to refuse to insist that a mother with a pushchair should leave the designated wheelchair space to make way for a wheelchair user.

The ruling overturned an award to Doug Paulley, a disabled man, of £5,500 damages after he was unable to board a bus because the designated wheelchair space was already occupied by a pram.  It seems the bus driver had asked the child’s mother to make space for the wheelchair user.  She refused.  Apparently, the buggie did not fold down and she wanted to avoid waking her sleeping child.

We are now faced with a situation where the very equalities legislation that was designed to provide Disabled People with a level playing field, has, in this instance, demoted us to the status of second-class citizens.

The implications of the above appeal ruling, is likely to have the effect of dissuading wheelchair users from using public transport, for fear of being left sitting at bus stops for hours on end.

This is already the situation for many wheelchair users trying to use public transport; but now that these incredibly educated judges have effectively stated that mothers with buggies or prams can take precedence over wheelchair users in terms of occupying the designated wheelchair space.  This, sadly, makes a mockery of our disability legislation.

In the United States, the Americans with Disabilities Act 1990 is much stronger than our initial 1995 Disability Discrimination Act, and in most parts of America it has been enforced with vigour. Personally, unless I was absolutely desperate, I would not even bother to wait at a bus stop in the UK for a bus with a vacant designated wheelchair space to take me to my destination.

However, on two previous occasions, Stephen, myself and James have travelled the length and breadth of New York on buses. This might potentially have been a logistical nightmare for two wheelchair users, and a young fit son.  However, fear not, it does not matter where a wheelchair user is in the queue, New Yorkers encourage you to go to the front; and when the bus pulls up, the driver allows alighting passengers off.  The difference between the UK and America is obvious at this point.   Before any embarking passengers are allowed to get onto the bus, the driver will personally assist the wheelchair user to their designated space, strap you into position within an inch of your life, and then allow the other passengers on. If there is somebody standing, a suitcase, shopping bags, buggies and or prams with or without babies in the designated wheelchair space, they will be moved. Nobody argues with the driver!

Whilst on the subject of transport, I have constantly found it difficult to find reliable taxi drivers that you can trust to turn up as and when you want them (at whatever time of the day or night), with vehicles in which you can travel safely.

There was one exception here in Cardiff.  One wonderful taxi driver that I did come to know and trust with my life, he was the kindest driver I have ever met.  I would travel with him on a regular basis (sometimes into the early hours after a night out with my girlfriends) – and he never let me down.  Sadly, Howard passed away over two years ago, and I have not used a taxi since.

On the railways, I can apparently travel from Cardiff Central to London and remain in my wheelchair, in whatever class carriage I choose. However, spontaneity is out of the question … I have to book one of the very precious designated wheelchair spaces three days in advance, and ensure that a message has been forwarded to all stationmasters along the route, in particular to the station at which I need help to get off the train.  Consequently, the last time I travelled on a train in the UK was the early 1980s, and in the salubrious surroundings of the guards van.  Four years ago however, without hindrance or prior arrangement I travelled the trains and subway in New York.

You will have by now gathered that I firmly believe we need enforceable legislation here in the UK, which has real bite!

As for airline travel – don’t get me started.  All I will say is that the amount of support you receive will vary from airport to airport and from airline to airline.  It is equally frustrating and costly and you are constantly worried about your wheelchair being damaged. Reassurance can make or break an aeroplane journey and, having been unfortunate enough to have both manual and powered chairs damaged in transit, I can tell you that airlines and baggage handlers could do with some disability awareness and equality training – not from some non-disabled person pretending to “come fly with me” – but from real people with real experiences.

I, and many other Disability Rights Campaigners, have fought for years for equality for Disabled People. We were part way there when the Disability Discrimination Act 1995 was passed. Flawed as it was, at least we had some kind of legal clout, despite the fact that the word “reasonable” was peppered throughout the legislation.  The problem with “reasonable” is that it is very subjective, and differs from person to person.  However, at least with the legislation, we were able to open up dialogue and help many organisations introduce best practice to their service provision and business operations.

The disability rights campaign was the last of the civil rights movements – Gender and Race has long been legislated upon.  We were still in our infancy when the Government, in its infinite wisdom, decided to amalgamate all equality issues into one single piece of legislation – the Equality Act 2010.  Many equality campaigners (including me) predicted that this would be the demise of disability rights. Indeed the baby has been thrown out with the bathwater and disability rights have fallen to the bottom of the equality agenda.

Hate crime towards disabled people has increased; essential disability benefits have been cut; essential practical support enabling disabled people to work and or be educated have been slashed; and vital positive legislative rulings enabling disabled people to move forward, have been overturned on the whim of non-disabled legal personnel devoid of common sense.

So, whilst I am having a good moan, I would like to take a swipe at those companies out there who make a lot of money on the back of the situation in which disabled people find themselves. I’m specifically talking about the companies who provide essential equipment for disabled people, particularly electric powered wheelchairs.

I’d like to tell you about a dream I had the other night.  In the dream I was being taught to dance the jive – specifically the Jive(R) in a Sunrise Medical wheelchair.  Curious? Well read on.

I have used electric powered wheelchairs since I was about nine years old, and Steve has used a powered chair for nearly ten years. Up until now I have always been an advocate of Sunrise Medical powered chairs.  My first was the innovative manual to powered F15, followed by two consecutive F55’s which were strong and robust.

However, the problem comes when you want to replace a well worn F55, and find that this trusted product is no longer manufactured.  For some unearthly reason, the alternatives on offer are named after a variety of Latin dances … Salsa, Jive, Hula, Rumba … You get the drift!  Conversely, I suppose that a Sunrise wheelchair called Foxtrot, Waltz or American Smooth, just doesn’t send the right product advertising messages for a go-getting corporation that services a world-wide market in powered chairs.

Unfortunately, our chosen alternative to the sturdy and reliable F55 proved rather less than a racy and raunchy Latin dance, but more a clumpy mobility version of Ann Widdecombe and John Sergeant combined.

I could go on forever telling you our saga of such a dreadful product – but Steve is still wrapping presents, and the X Factor is blaring away in the background – so I will simply say that after more than six months of aggravation; an engineer bordering on moving in (as he spent more time in our house than he did at his own); a rather fraught visit to the Sunrise manufacturing hub in the West Midlands (where we discovered that patience and understanding are left firmly locked in the time clock, when the Sunrise shop floor workers clock on); Senior  company management  demonstrating a complete disregard for Sunrise customers, (to the extent that even when they are presented with irrefutable evidence of a product so wanting in quality) that they did not have the decency to acknowledge receipt of email communication.  Maybe they should revisit their professed “Corporate Responsibility” as it is so eloquently quoted on the Sunrise website…

“At Sunrise Medical, we’re not only focused on improving people’s lives, but also the way we do business. Whether it’s being respectful of our environment, contributing to the communities in which we operate in or empowering our employees to think and act in a responsible way – managing our business in a responsible way is important to everyone at Sunrise Medical.”

Steve’s chair was returned, as not fit for purpose.  Fortunately, his saviour came in the form of a Meyra iChair MC3, from our trusted regular wheelchair maintenance company – Hereford Mobility Centre – who supplied a rather nifty black and white version which we have nick-named the “Storm Trooper”.  So, to lighten this blog, I am posting a picture of Steve, in his own inimitable way, modelling his very own little Storm Trooping wheelchair.

For me, I am still plodding on with my JiveR.  Currently I have had the controller and tyres replaced, had to have the arms on the chair fabricated in a stronger fashion, and even then, we have resorted to duct tape to keep a number of nuts and bolts in place!  The only reason I am putting up with this is that I am not particularly disposed to the idea of sitting in a Storm Trooper – Princess Leia I am not!

It still seems that even in these supposed enlightened times, particularly in terms of the provision of goods and services for Disabled People, society generally, providers of goods and services, and the Government are doing a disservice to Disabled People. I can put it no clearer than just to say … “two steps forward and five steps back”.

Yet again disabled people will need to rise up and fight for our rights.  We need separate, clear and enforceable Disability Equality Legislation.

Phew … Rant over.   So all I need to do now is wish you a very happy and peaceful Christmas holiday, and to everyone – regardless of gender, race, religion or disability – I hope you have a New Year that brings empowerment and success in equal measures.

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FOUR FINGERS AND THIRTEEN TOES – LORD ALF MORRIS – A PASSIONATE CARING MAN WITH A COMMITMENT

August 14, 2012

It was with much sadness that I received news of Lord Morris’ passing through the media today.

I held Lord Morris in very high esteem, and that was in no small part due to his un-erring ability to take time to speak with people whom he felt he could help.  It was in this connection that I developed an even greater respect for a man who was so instrumental in changing the face of the UK in its attitude to disabled people.  He was a true champion for Rights for Disabled People and a staunch supporter of campaigns by Thalidomide impaired people.

Those of you who have read my tribute to Lord Jack Ashley, will know that in 2008, I was commissioned by BBC Radio Wales to present a radio documentary on Thalidomide 50 years on.  As part of the documentary I was keen to speak with Lord Morris, and through his office in the House of Lords, suitable arrangements were made to meet with him.

You may recall I previously spoke of meeting Jack and of our “Abbey Road moment”.  That was in fact the same day as I met with Lord Morris (although we had met on a number of occasions in the early 1990s whilst campaigning for the rights for Disabled People).  However, unlike Lord Ashley, we did not zip around the corridors of power on scooters, but we were taken through those imposing corridors by Lord Morris to a Committee Room, where he gave a passionate interview about his involvement in the Thalidomide story.

Before we got to the Committee Room, we passed many eminent members of both the House of Lords and the House of Commons.  I was struck by the genuine sincerity with which Lord Morris was greeted.  If I were to try and paraphrase this, it would be that he was greeted with the affection afforded to the Headmasterly character “Mr. Chips”. 

Lord Morris was quietly spoken, but commanded an air of authority and respect that is virtually impossible to replicate in today’s political world.

Lord Morris will be remembered as a man of integrity, and man of honour.  Most of all he will be remembered as a man who, despite rising from abject poverty to the rank of Elder Statesman, never forgot his solid northern roots.  It is my genuine belief that his understanding of being “ordinary” allowed so many people to warm to such a fine and dignified man. 

Our current politicians have much to learn from people like Alf Morris, and his passing marks the end of an era – of caring and compassionate parliamentarians – that we should mourn alongside the passing of a fine orator, who was revered and respected for all his good works and commitment to social justice.

FOUR FINGERS AND THIRTEEN TOES – Fast forward two years

July 11, 2011

Looking back through my records today, I noted that it is nearly two years since I started the Four Fingers and Thirteen Toes’ Blog.  During that time, I have shared some of my thoughts on many diverse subjects – some anecdotal; some serious; some poking harmless fun at me and my family and some which I hope have been thought provoking.

 

It has been a pleasure to make this journey in your company, and I hope we can continue this sojourn for a long time to come.

 

When I started writing this Blog I had just completed a revision of Four Fingers and Thirteen Toes; the Thalidomide Memorial Campaign had taken shape; the so-called credit crunch was still biting hard and I had the pleasure of meeting Dr. Valerie Jones who delivered me, way back in December 1960.

 

So for this month, I thought it would be interesting to consider how quickly things can change. 

 

Fast forward two years – The Thalidomide Memorial Campaign continues with its good work, in securing that lasting recognition of the contribution that Thalidomide people and their families have made to society.  We are concentrating on three potential locations for the sitting of the Memorial Plaque.  We have gleaned support for the campaign from Lords and Baroness’, those in Business, Commerce and Law, Celebrities and Sports Stars, Henry Hoare, the eldest son of Sir Frederick and Lady Mary Hoare, and people from all walks of life.

 

I have met with Valerie Jones on several occasions, and a firm friendship has ensued which has allowed me to have a better understanding, of just how poorly my Mum was during the time leading up to my birth.

 

Sadly the global financial crisis, which some predicted would be over by the end of 2009, is still very evident.  And of course there have been dramatic changes in the world of politics and the media.

 

Humanity appears to revolve on an axis.  As a psychology graduate, I believe things are balanced one against the other – Ying and Yang.  But try as I have, I can’t actually find any really significant changes on the world stage, over the last two years to create that Ying and Yang balance.

 

As the world economy struggles to get back on its feet, I fear that the most vulnerable people in society, including disabled people, are still being hardest hit (socially and economically) in the face of our changing world.  When I recently logged onto my social media account, I was appalled to hear of a disabled friend who had been subjected to verbal abuse whilst out and about in her home town.  Having experienced that kind of discrimination when I was a teenager, I know how it feels.  However, as a promoter of Disability Rights, I find it hard believe that in our developed world, such deep-rooted bigotry still exists.  

 

I was also deeply saddened to read last week of a decision in the UK Supreme Court in the case of celebrated former ballerina Elaine MacDonald.  This gifted performer, described as “Britain’s best classical dancer” was appealing against a mandate from her local authority to deny the provision of over-night care.  Instead, this articulate lady is to be required to wear incontinence pads at night.  It is apparently common practice in the London Borough of Kensington and Chelsea to adopt such practices for people in similar situations to Miss MacDonald. 

 

What is interesting is that in 2007, Kensington and Chelsea was listed as the wealthiest borough in Britain.  The problem is that there is a great disparity between the “haves” of the fashionable areas, compared to the “have-nots” in the high-rise blocks in the northern most parts of this most “royal” of London boroughs. 

 

Why has someone in the corridors of power of the Town Hall not realised that if there is fundamental need for a basic Human Right, then where the divide between the “haves” and the “have-nots” is so great, there must be a sensible distribution of services to help those who are in most need.

 

The lone voice of Lady Hale (the dissenting voice of the judges who heard Elaine’s appeal) echoed the sentiments of disgust from many people the length of the United Kingdom.  As a lawyer whose foundations are firmly grounded in the field of family and social welfare, Lady Hale’s condemnation of the other judges sitting to hear this case was forceful.  I can only hope that common-sense will prevail in the interpretation of this judgement, and human dignity will not be sacrificed on the sword of budgetary constraints.  Somehow I doubt it.  And the consequence?  Older, vulnerable and disabled people will fear that their care package (if “care” is the correct terminology) will be reviewed with dire consequences.

 

I’m not entirely convinced that the next two years will see any major changes that will boost optimism in many areas of life.  Rising costs of living will not make things easy by any stretch of the imagination.  The future resolution of the phone hacking scandal will be of little comfort to those who have been affected by this most awful of journalistic actions, and the horrendous effects of war and poverty will continue to be keenly felt.

 

As I conclude this Blog, can I leave you with this thought …

 

This summer, maybe those who are in positions of real power and authority – politicians and policymakers – should forego their luxury vacations, and spend their holiday amongst the people who live in the most deprived areas of the world; make time to interact with people who live in unending isolation due to age or disability and then take time to see just how hard it really is for service personnel, their families and other disabled people, to adjust to a life destroyed by injuries inflicted through war, or more generally though accident, illness or old age.

 

At the end of the summer, these findings could then be taken back – not to some Select or Congressional Committee, but to where real action can be taken to make genuine changes. 

 

Then, when in a further two years, I hopefully celebrate four years of blogging; there will be changes that we can really enjoy.

FOUR FINGERS AND THIRTEEN TOES – SOLVING STAFFING PROBLEMS

March 3, 2011

Over the last two weeks our news channels have been awash with stories about unemployment and the seemingly endless rise in people finding themselves jobless, in an ever more miserable economy.  I would hazard a guess and say that for the vast majority of the 2.49 million who are recorded as being out of work, they would jump at the chance of doing a worthwhile job.

So, I don’t think I was alone in being more than a little shocked when the media reported that our Deputy Prime Minister had an apparent episode of amnesia over his duties to the country, whilst our PM was in Egypt.    Forgetting your lunch box is one thing, but forgetting that you’ve been put in charge of the country whilst the boss is away is quite another.  So, it was against this background that I mulled over my success or otherwise in the field of employing Personal Assistants.

Anyone who has read my book, or knows a little about me, will know that I employ two Personal Assistants to help me live the full and independent life that I am privileged to enjoy.  In fact, anyone who has the slightest impairment will rely, to a greater or lesser extent, on other people to help do things that are sometimes difficult to manage on your own.

Coming to the conclusion that you need help to live independently is a strange crossroads to navigate.  On the one hand you have a desire for complete independence, but on the other, there is a recognition that a little bit of help can go a long way to making life easier.

I came to that crossroads about 23 years ago, just before I got married, and on the whole reckon I have just about managed to get it right since then. 

When I first started to engage help there was no such thing as Direct Payments, Person Centred Care Plans or user led Independent Living Schemes.  You just had to be content with a home help “carer” who came in and helped you as best they could – Ever mindful that time was pushing and they had another 10 “clients” (as we were called in those days) to get out of bed, do lunch and try and make life as comfortable as possible for the recipients of the service. 

I did manage to get Cardiff City Council Social Services, to agree to me having some control over my care package however.  Thus, the “Helper for Rosie” scheme was set up.  For the first time (in Cardiff anyway) a disabled person (me) sat in on the interviews of the “Helper for Rosie” applicants, and held the final vote in who those ‘lucky’ people were, to become my helpers!

Generally though, this was not the case for the majority of disabled people.  With the introduction of Direct Payments however, all that changed.  This was an opportunity for me to engage Personal Assistants who could help me when I needed help, and not when the timetable allowed.

Becoming an employer is a daunting prospect.  The plethora of forms and procedures that had to be learnt and complied with was phenomenal.  The recruitment process was not for the faint-hearted and   establishing a system of time-keeping was essential.

I was fortunate to have help and support from a number of avenues.  Not least was the Cardiff and Vale Coalition of Disabled People who, through their direct payment advisers, were always on hand with friendly advice, to make the whole thing seem far less arduous.  Also, having been involved in recruiting staff for most of his professional life, Steve had a wealth of knowledge on what to look out for … excellent tea making skills, good telephone manner, and of course to be discreet. 

Now, at first sight, this seems a good basis from which to start.  However, when Steve once employed a receptionist who had a slight hearing impairment – long before the days of disability discrimination legislation, and despite arranging for the amplification on the office telephone system to be increased – he still got messages left on his desk reading “Please could you telephone Mr. Higgins an alien from Porthcawl.” I began to wonder whether his judgement and advice on employing staff could safely be relied upon. 

It would be amiss of me not to explain that Mr. Higgins was not an “alien” at all … but rather a Lion (as in a member of Porthcawl Lions Club) and a good friend.  In fairness to the employee in question, and with a bit of lateral thinking and a large amount of imagination you can see how the mistake was made.  However, I should add, that the young lady to whom I refer did decide a future as a receptionist was not quite for her – I gather she was last seen on the set of the latest Alien movie –“PAUL”.

Back to me – I remember my first month as a PA employer very well.  It was August 1997 and is marked in my memory by the fact that on the very first Sunday I had a weekend PA to help me; it was the day that Diana Princess of Wales died.  Not a great deal was done that day, other than my getting up, and we spent most of the time looking in disbelief at the scenes unfolding on the Television.

After that, I quickly learned that the TV should never be left on when you have a PA working with you. 

I have employed a variety of people over the last 23 years.  Old and young, gay and straight, tall and thin.  Each PA has brought their own unique qualities to the job – some better than others. 

In the preceding 23 years my Psychology degree has come in very handy.  If you took the mailbag of Bel Mooney, Claire Rayner, Victoria Ironside and Marge Proops, to name but a few – you get my drift.  I’ve listened to, and helped sort (I think) a variety of problems. 

If the walls of my bathroom could talk, what a tale they would tell … drink, teenage pregnancies, serious and life threatening illness, failing marriages and family rifts – I’ve heard them all.  I’ve even been able to tell Steve a few things about Coronation Street weeks before the events have unfolded.  Who needs TV Listings Magazines, when you have PA’s who seem to devour the gossip in TV Magazines like the world will end tomorrow!

In general, my PA’s (past and present) have been loyal, caring and have become, in an odd way, an extended member of the family.  But, there are times when I get very frustrated – especially when I think I am being taken advantage of.  One of my biggest bugbears is when my staff sometimes forget the importance of why they are there to help, and decide to take a ‘sickie’ day off for something as simple as a cough or cold.  As far as I’m concerned, no-one ever died of a cold, and a runny nose is not an excuse for failing to turn up for work.  On occasions like that, I have to remind them that one much respected former PA, chose to continue to work during a gruelling course of chemotherapy, and even in the depths of such serious illness, never forgot that the help she gave to me enabled me to lead a fulfilling and independent life.

The job of a PA is an important one, and I always try to emphasis the uniqueness and value of the work they do.  Sometimes it works, and sometimes it doesn’t.  When it doesn’t, and if all else fails I fall back on the contract of employment that is the benchmark under which my staff work for me.  For example, I have a number of ‘golden rules’ which I expect my PA’s to adhere to.  These are built into the job description and contract of employment.  They are as follows:-

  • Must be Reliable, Trustworthy & Honest – The P.A. is providing me with the support I need to be independent. I need someone I can rely on to turn up and do the job when needed
  • Must be Punctual
  • Have good Communication Skills
  • Must be Discreet & Sensitive
  • Must have a Flexible approach to hours worked and times needed
  • Be able to accept Responsibility but ask if instructions are not clear
  • Be Clean and have no Unhygienic habits
  • Respect my family and our home
  • Must have a ‘good sense of humour’

Whilst I am friendly with my PA’s, ultimately I am their employer, and the employer/employee lines of demarcation have to be observed.  That way, we all know where we are.

When I reflect on being a PA employer, there are a couple of things I think I have learned.  Firstly, you have to have the patience of a saint.  Secondly, don’t put too many “nice” biscuits in the biscuit tin (!!), and thirdly, the shelf life of a good PA is about four years.  After that, interest starts to wane and there is much truth in the saying “Familiarity breeds contempt”.

If I take that last principle, then I think in the not too distant future, I may be looking to a recruit some new PA’s.  When that happens, I shall start to trawl through the CV’s that come with the letters of application.  I’m not averse to considering applications from all gender and religious orientations.  After all I, above all people, who make my living from promoting equality issues, am happy to be an equal opportunities employer … Heaven knows I’ve had enough experience!

There may even be a CV from one Nick Clegg … Previous experience: Deputy Prime Minister … Attributes: Articulate; Personable and with good administrative skills; Reliable and punctual. (I’ll have to footnote this in the reference request to his former employer).

It might be worth calling this candidate for an interview, but then, if he gets through the first hurdle, I just wonder how he will persuade me of his reliability.  After all, if he thinks I’m going to sit in the bathroom waiting for him to hop on a plane back from Klosters, because he’s forgotten it’s a work day, then he has another think coming!

Perhaps after all, I’m better off sticking with idle chit-chat about soaps and family dramas, rather than fiscal policies and the balance of payments. 

I might even be persuaded to open the “fancy” biscuits for the next successful candidate, when I look them straight in the eye over the dining room table and wildly flap one of my four fingers vaguely in their direction, and announce with aplomb that “You’re Hired – Welcome to the mad-house … I’ll see you in the bathroom at 8am sharp.”

Then I’ll just hope, that unlike our Deputy Prime Minister, they don’t forget to turn up for work, and leave me knitting buttons!

FOUR FINGERS AND THIRTEEN TOES — “LET’S TALK”

March 27, 2010

Anyone reading this blog, who knows me personally, will know that I can talk, and talk, and talk… despite never having kissed the Blarney Stone!!

Some may say I talk a load of nonsense, some will say I talk a lot of sense, and there will even be some who say it is just nice to hear me talk.  But sadly not everyone is able to communicate, and I don’t simply mean the inability to communicate in a purely physical way.  We are all able to communicate – it may be different to how some people perceive communication but it is communication all the same.

So, I today I find myself thinking about communication, having recently read a feature in the Daily Mail – Female Magazine section about Sue Norton.  Sue was a typical forces wife, whose strong athletic husband was badly injured in action in Iraq.  In the article, Sue talked frankly about coping with the responsibility of “caring” for her badly injured husband and juggling the demands of raising a young family.

The upshot of the article was that Sue found herself unable to cope with the life changing situation, that she and her husband found themselves in.

But what intrigued me most, was the assumption of a different role by Sue, from that of wife, mother and lover, to “carer”.  Time and again, we read stories and hear media coverage of partners transforming themselves into ‘carers’ for their loved ones.  And, that is where I think the problem arises.  Accident, illness or simply old age can change the dynamics of a relationship overnight. Cracks will appear if there has been no real, meaningful and deep communication, between the partners concerned during their time together.

However, this is not a new situation.  In my book, Four Fingers and Thirteen Toes, I tell of when the children of the Thalidomide tragedy were born, there were families ripped apart, because of an inability to cope with such a dramatic change of circumstances.  My parents had been married for barely six months when I was born.  Were it not for their deep Catholic faith, and their ability to communicate with each other, I have no doubt that my life would be very different to what it is today.

Marriages floundered in the mire of this small portion of history – just as they do today.  Like today, the amount of support to help families through such a life changing experience was non-existent.  It is little wonder therefore, that 50% of Thalidomide children found themselves abandoned to homes and hospitals, because of a parental inability to cope with the events that unfolded.  Armed forces families, like the families of the Thalidomide generation, span the whole social spectrum.  It is ironic how tragedy and heartache have no bearing on your bank balance, social standing or where you live.  It is completely indiscriminate.

So, I have to pose the question, why do some relationships survive, whilst others do not?

The Psychologist in me says that the substance and longevity, or otherwise, of a relationship would, most likely, have been established from the start.  I believe that a healthy relationship is made up of mutual respect, trust, honesty, support, fairness/equality, separate identities, but above all good communication.  Consequently, there will be some couples who can rise to the challenge of tragedy in their lives, whilst others cannot, particularly if these elements do not exist within the relationship.

Human nature, being what it is, means that some of us are able to cope with a situation better than others.  It does not mean that we are any lesser person because of that, but simply our characteristics allow us to deal with situations in different ways.

Up and down the country there are countless partners helping their disabled spouses to live happy and empowered lives.  Whether they describe themselves as ‘carers’ depends on many things, such as age – older people tend to use the expression “carer” more readily than younger people; or attitude – the non-disabled partner may still love there now disabled partner, but sadly no longer see themselves as lovers and equals, but as ‘care giver’ and ‘care receiver’, hence “carer”; or occasionally I have come across couples who introduce themselves as “carers” with immense pride — for example, “we have been married 11 years but since his accident I am now his carer”.  The role or tag of “carer” seems to give them some purpose or kudos or power, that presumably they lacked before.

Personally, I find it all quite sad and depressing to think that couples think of each other as equals when they are fit and healthy, but their whole behaviour and attitude changes if their circumstances change, i.e. one of them becomes a disabled person.

In our house, Steve does a lot of the domestic aspects of running our household, and provides me with most of my personal support.  However, he would never dream of being called my ‘carer’.  He insists that he is my husband, and the elements of help or support that he gives me are part and parcel of being in a loving and meaningful relationship.

I believe that a great deal of the difficulty surrounding supporting a disabled partner can be alleviated by communication.  When a person becomes disabled, it is generally accepted as being rather like bereavement.  There is a mourning period for the life that the person once had, and for what has been lost, now that they have acquired an impairment.  In the same way that we have bereavement counsellors, maybe we should also have counsellors trained to help people with newly acquired impairments. This would help them and their families, appreciate that life does not simply stop when accident or illness strikes.  It is possible to have a fulfilling personal and professional life despite profound impairment, but it really does depend on communication.

A good relationship depends on each person being able to say what they feel, and not to feel threatened, simply because one partner is less able than the other.

On a lighter note, Steve reckons that our communication is good.  He says that at home we have singular differences of opinion, but in the end Rosie is always right!!  Seriously however, I confess to being lucky to have a stable and happy relationship and home life.  Every individual in our household has an opinion that is valued.

I hope that in time, partners who find themselves in that cycle of despair, like the one in which Sue Norton found herself, will see that communication can be a remedy for so many problems.  And, with that in mind, the first thing they should do, when a life changing situation arises, is to sit down and say “Let’s Talk.”

FOUR FINGERS AND THIRTEEN TOES – WE HAVE THE TECHNOLOGY

February 23, 2010

It is 15 years since I formed the RMS Disability Issues Consultancy and in an attempt to increase efficiency, I have looked at upgrades to our computer system to try and work towards a paperless office.

However, it is only when you take stock of how your business operates that you realise just how essential technology is to productivity and why there is such a pressing need to keep abreast of changes.

When I think back to my time in the Civil Service, its computer systems were DOS based.  There were no graphics to make the screen more interesting, just a black background with a flashing green cursor that gave way to lurid green letters. 

I left the Civil Service in 1993, and had lots of ideas as to how I could make my living, but the first thing I had to do was get a computer.  Until then, any written work done at home was usually done on an electric typewriter.  For disabled people, the electric typewriter was a milestone.  In the early years the way I typed came in a number of fashions – not least, the Possum system, that depended on you having enough breath to blow fifty trombones to produce a half decent piece of typing.  I then progressed to using two sticks to bash away on the keyboard!

Eventually the time had come to consign the typewriter to the loft, and so my search for technology took me to Genesis Computers.  The name of the Company should give you some indication as to the infancy of home based computers when I started my search.  For those readers who have forgotten their Sunday School days or Catechism teachings, Genesis is the first book of the bible, and starts with the phrase “In the beginning …” This first visit to Genesis was something akin to the coming of the Messiah.  It saw me take my first faltering steps into the world of “WYSIWYG” (“What you see is what you get”) and being embraced by Windows 3.1.  Within days, a room at the front of our house was turned into an office, with a desk and filing cabinet.  My new acquisition arrived, and was duly installed.  The monitor looked rather like the old portable black and white TV’s that were around the in the 1970’s, the hard drive was big and bulky, the printer cranked and groaned, but it all came in a tasteful beige colour that matched the telephone perfectly.

This revolutionary piece of technology saw me move closer to my master plan – and that was to write my autobiography.  However, before that, it managed to get my youngest sister through her Social Work degree, whilst allowing me to develop my business in Disability Equality Training and radio and television work, which were to become the backbone of my post Civil Service working life.

The beauty of the computer was that if you made a mistake, you just deleted the error, corrected the mistake and marched on to a printed masterpiece.  That was something you could only dream of, having run out of Tippex when using the electric typewriter.  Further, because I had to hold the Tippex lid between my teeth to be able to reach the paper to correct errors, the fumes would make me quite light headed!!

The next technological step was a fax machine.  Deadlines for written work seemed less daunting and it seemed rather grand to have a fax number added to your letterhead.

But this technology bandwagon is a rollercoaster that gives an adrenalin rush each time a new product comes on the market.  Windows 95 was looming.  By this time, Steve had introduced a new computer system into his office, four miles from home, and installed a computer of his own in my office.  He had the two linked by some wonderful invention called a modem, and this allowed him to access any computer in his office if he needed to work from home.  The reliability of the modem was questionable, but in 1995 it was a breakthrough in communication that we take completely for granted today.

Having upgraded to Windows 95 and acquired a colour monitor, the marvel of the internet and its endless possibilities became part of my life.  Shortly after that email became the “must have” piece of computer wizardry.  Soon I was conversing with people the length of the country and overseas at the touch of a button. 

Almost simultaneously I dabbled with the early versions of voice activated software.  Literally you can control a computer through voice activation, you can dictate and, as if by magic, the words appear on the screen.  On the one hand this new invention was nothing short of miraculous technology in that it alleviated the huge effort of having to type with two sticks.  However, on the other hand you needed the patience of a saint to keep correcting the errors and training the software to understand your voice!  Even in this day and age you have to be patient and work with the software to make sure that you get the best out of your system.

 In 1998, I ventured into the world of Windows 98 and Office 97.  These new applications allowed me to develop my Disability Equality presentations and work with PowerPoint.  The use of database applications also became necessary in order to keep the business accounts up to date, and the systems that I introduced then, are still being used today – albeit in a more advanced form. 

The end of the 90’s and into the noughties, saw my experimenting with different types of laptop that I use for presentations and work away from the office, but I confess there is something comforting about a desktop.  It sits in front of you every morning ready to categorise your emails into SPAM and allows you to Tweet without having to worry about whether you charged the laptop overnight.

And so, back to where I started, our current systems are as up to date as they can be, but have advancements in technology made me any more efficient?

Will RMS ever be a completely paperless enterprise?  Sadly I doubt it.

My biggest downfall is that I am a hoarder; I hate throwing things away and procrastinate when having to do so.   Also, I still yearn for the shuffling of paper (once a Civil Servant always a Civil Servant!), even though almost every part of my working life is now downloaded to my desktop.  It may be just flicking through the pages of the Disability Now magazine to see what raucous film or stage production Mat Fraser is currently involved in; or to find out whether Eddie Freeman has overstepped the mark with his witty cartoon humour.  Nothing beats the ceremonial opening of the daily post, and I think most people would agree with that sentiment.  It’s somehow rather nice to be able to categorise your post and to decide what junk mail is capable of recycling.  For just a couple of minutes each day, it is good to be able to determine one’s own destiny without it being totally controlled by a chip, micro-chip or some enormous megabyte waiting to absorb your command from the voice activated software.

By the same token, it is also quite satisfying at the end of the day to log onto Facebook and have a peek at what other people have been doing during the day, before I send Steve an email and tell him I fancy one of his yummy Thai curries for dinner.

And then the final exhilarating  daily action, my desktop faithfully asks me whether I should save my changes?  “YES” I will save the changes …“Microphone Off” !!

Four Fingers and Thirteen Toes – WAR AND DISABILITY

October 7, 2009

Over the past few months there has been a heightened profile of disability in all forms of the media – newspapers have been carrying front page stories about disabled people, TV channels have been running programmes during primetime viewing about disability and its impact on those who have become disabled.  Particularly about those who have been injured in the conflict in Iraq and Afghanistan. 

The reason for the heightened profile on disability is quite simply – war.  War and disability are inextricably linked.  The war that our country is currently engaged in (whatever the rights and wrongs) has created a new generation of disabled people.  During any conflict, this has been the case.  For my generation, the first real insight into the horror of war came with Vietnam.  Images of badly injured American soldiers being flown back home from Vietnam filled our living rooms during the early 1970’s.  Then in 1981 we in the UK, lived through the Falklands conflict and experienced the terrible impact that burns injuries and limb loss had on people from the baby boom era of the 1960’s.

Modern history provides an interesting link to the connection between disability and war.  With injured soldiers returning from the battlefields, it was necessary to treat them in the best way possible.  Following World War One, major advances were made in plastic surgery.  The problems of limb loss during the Second World War were dramatically portrayed in the film “Reach for the Sky” telling the story of Group Captain Sir Douglas Bader and his return to active war service following the loss of his legs in a flying accident.

However, advancements in the development of prosthetics following the First and Second World Wars weren’t great.  Artificial limbs were, and remained for many years, no more than tubes of metal, hinged at the knee or elbow providing a crude way of replacing lost limbs. 

When my generation of Thalidomide children were born, we found ourselves in an archaic system that failed to recognise that as children, we needed limbs which worked for kids and not by using rehashed limb designs for (as they were called in those days) limbless ex-servicemen. 

The limbs that were provided for Thalidomide impaired children were often ill-fitting and uncomfortable, unsightly and unreliable and wholly inadequate for the needs of a generation of children who had specific impairments that did not “fit the norm”. 

In my case, and in an attempt to make me look normal, I was encased in a metal jacket, given heavy and unwieldy limbs, a gas cylinder was strapped to my back, and just for good measure I was given a crash helmet to wear on my head!!  I’m sure you’ll agree that this was hardly the stuff that makes a three year old look “normal”, and if you are interested, there are some photographs of me in this “genre” in Four Fingers and Thirteen Toes.

This scenario was repeated the length of the country as the limb service struggled to cope, and continued until many of us rebelled against the use of our prosthetics, in favour of making the best use of the small limbs that we had.

The visibility and impact of limb loss could not be hidden after Thalidomide.  Whilst some children were left in hospitals and institutions many of us were embraced by our families and enjoyed a full family life – going to school, having non-disabled friends and playing an active part in our local communities.

Disability was now no longer a “taboo” subject.  Consequently, when the Falklands war maimed and injured so many, those returning soldiers were embraced by their communities.  Simon Weston (with whom I have shared speaking platforms) was a typical South Wales “valley boy”.  However, when the Sir Galahad was bombed Simon’s life changed forever.  It is hard to forget the documentaries that charted Simon’s recovery from some of the most horrific burns that war has ever produced.  Not only did life change in a very physical sense for Simon, it also led him on a journey of discovery, ultimately making him into the motivational speaker that he is today.

Now we are witnessing another generation of disabled people maimed by war, coming to terms with their impairments.  Perhaps the real difference for this generation is the major advancement in medicine and rehabilitation. 

Quality of life will be enhanced for these honourable soldiers, and the Government has made it clear that it will continue to provide the highest standard of limbs, in line with those which are presently available to servicemen, even when they retire.

Currently, returning soldiers are provided with differing limbs dependant upon usage – computerised limbs for walking, limbs for swimming and limbs for exercising.  The cost of even a basic artificial limb runs into thousand of pounds and so it is quite reasonable to assume that the cost of limb provision for our returning soldiers will amount to tens of thousand of pounds.  One therefore has to wonder whether the NHS can sustain this commitment without affecting the level of service for other limb users.

No-one should begrudge this provision, but it does beg the question as to whether a two-tier system of limb provision is beginning to emerge.  The way impairment is acquired may be different, but decency and fairness requires that the treatment afforded to amputees should be the same irrespective of the cause of impairment.

Disability arises in various ways – through accident, illness or old age.  The basis of Aneurin Bevan’s National Health Service was the provision of help at the point of need.  Sadly, for those who have already gone through the NHS limb fitting service, its failings are well known.  It all comes down to a question of resources.  The resources currently made available for limb provision are wholly inadequate, even without the extra pressure of caring for those young men who have been so terribly injured in the name of international peace.

In saluting their bravery and determination, I hope that when these young service personnel return to a world outside the regime of the armed forces, they will benefit from the campaigning and commitment of people such as the parents of Thalidomide impaired children and other disability groups, who have done so much to make life more inclusive, and more meaningful for disabled people generally. 

Out of the horrors of war, positive changes can come to the way disabled people are treated and portrayed.  Firstly by Government realising that extra resources are needed to make life easier and more equal for all disabled people.  This will then be followed by an acknowledgement by the whole of society that respect and courtesy, and not pity and sympathy, are what disabled people seek.  Ultimately then, the long and sometimes tortuous road to disability equality will have been worthwhile.