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

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.