I’d like to spend a moment or two remembering the Motability journey if you’ll pardon the pun. I remember the days of the infamous three-wheeled invalid carriage and the feeling of being treated like a second-class citizen regarding personal transport, travel and independence. Buses, trains and taxis were mostly inaccessible, and many severely disabled people relied on the goodwill of others to get around.
Since I last wrote, we’ve had the Manchester bombing, the London and Westminster Bridge killings, a general election and most recently the fatal attack on Muslims in Finsbury Park and the terrible fire at Grenfell Tower.
There has been much soul-searching over the murderous terrorist atrocities which killed and permanently disabled so many innocent people in London and Manchester. Were they preventable? Could more have been done to avert them? Sadly the conclusion seems to be that it is almost impossible to stop murderous individuals from blowing themselves up, running people over after hiring a truck or running amuck with knives. Nevertheless, the government will speedily invest millions of pounds in anti-terrorism measures and rapidly deploy new legislation to counter the perceived threat.
But what about the response to the tragedy of Grenfell Tower and the needless loss of so many innocent lives? It is beginning to look like this horror was largely preventable, and the warnings were ignored or dismissed as alarmist.
Grenfell Tower residents had repeatedly raised concerns regarding the safety of their building; the local authority chose to ignore the warnings. A refurbishment programme primarily designed to “beautify” the tower block to make it less of “an eyesore” for the wealthy homeowners living nearby used cheaper cladding which it now seems clear did not meet fire safety standards. A Coroners report based on a similar fire in a tower block in Southwark made a number of fire protection recommendations none of which have seen the light of day, despite repeated calls from an all-party parliamentary committee on fire safety. As if the devastating consequences of the fire itself weren’t enough Kensington and Chelsea’s response to the disaster was utterly shambolic and dismissive. Local people had to rally round and provide for each other, and days after the fire there was still a lack of leadership, coordination and organisation. Even the Prime Minister chose to meet exhausted fire crews rather than mingle with the devastated survivors of the fire.
One of the conclusions I draw from this terrible, preventable tragedy is that if you’re poor, or an immigrant, an ethnic minority, disabled or old, your life is worth less when compared to those who are not from those groups.
One commentator put it rather well; “The Shard is a tower block if it caught fire would there be such catastrophic consequences”. I think we know the answer to that question.
Another commentator remarked when discussing the Grenfell Tower fire that “housing for the poor will always be poor housing”. Buildings constructed for people who are more comfortably off tend not compromise on safety standards; whereas penny-pinching, shoddy maintenance, avoidance or enforcement of building regulations and delay are the name of the game for those dependent on social housing.
A fitting epitaph for all those who died would surely be that lessons are learned. The government should act swiftly to strengthen fire safety regulations just as they would have done if this had been an act of terrorism. The public enquiry needs to publish its findings as quickly as possible, and if required the government should bring forward new legislation without delay just as it would have done if this disaster had been caused by a terrorist act. The government should spend whatever is required to ensure that people are kept safe just as they do when we are threatened by terrorism. If these things come to pass then those who died will not have died in vain.
Those of you who know me reasonably well will know that I’m a bit of a petrol head. I simply love driving! I know that’s not terribly cool theses days given the effects on the planet, but I blame my obsession on the fact that I’m a wheelchair user and as a result, I love the freedom that driving gives me.
In my time I’ve driven some pretty incredible motors. My journey started way back in the 1960’s with the appropriately named Tippen Delta 2 a three-wheeled invalid carriage supplied by the then Ministry of Health which preceded the Motability Scheme. I managed to overturn my aptly named “Tippen” on several occasions. These vehicles were primitive, unreliable and eventually banned from Britain’s roads in 2003 as they were deemed to be too dangerous! Those of us who survived this unique driving experience used to wonder whether this was a secret initiative designed to reduce the population of disabled drivers!
After seven years of crashing around in invalid carriages, I bought my first “proper” car a used two-seater sports car the MG Midget; a Porsche-engined VW Beetle followed, then a Saab Aero. I ended this extravagant period of my life with a BMW 5 Series, a Mercedes E class estate and finally a Range Rover!
The invalid carriage was an ill-equipped, unreliable and dangerous vehicle but I loved it. I still remember the pleasure and excitement of being able to go out when I pleased; I could go where I wanted and most of all I had control and choice. The Range Rover provided all of the same benefits but with leather seats!
As I’ve got older and my physical abilities have waned I’ve moved from walking on crutches to using manual wheelchairs and now to powered wheelchairs. This physical deterioration has had a profound effect on what vehicles I am now able to drive. The observant among you will quickly realise that you can’t fit a large powered wheelchair into most saloon cars. My solution has been to use wheelchair accessible vehicles (WAV) supplied via the Motability Scheme. So the wheel has turned full circle!
The Motability Scheme is a far cry from the old invalid carriage days and has provided complete driving solutions to hundreds of thousands of severely disabled people for years; incidentally, they celebrate their fortieth anniversary in May. I’ve variously leased through the Scheme a Chrysler Voyager, a VW Transporter and currently a VW Caddy. All accomplished, reliable vehicles but not quite BMWs although the costs including adaptations are not that different.
For many severely disabled people, their only real option for independent travel is the Motability Scheme, but the government’s recent changes to the benefits system are having a profound negative effect. Since 2013 51,000 people have had to return their Motability vehicles because they failed to satisfy the new criteria used to qualify for higher rate personal independent payments (PIP). It is estimated that the final figure will be closer to 150,000 returned vehicles. What lies behind these numbers are individual human stories. Disabled people are potentially losing their jobs because they can’t get to work, being prevented from seeing family and friends, stopped from going on holiday, reliant on others for medical appointments, shopping and leisure pursuits.
The Motability Scheme plays a vital role in ensuring that disabled people can live independently. For many of those who use the Scheme, it is the only way they can afford to lease an appropriate vehicle for their level of impairment. The draconian measures being used to reduce the benefits bill are having a devastating and disproportionate impact on the lives of many disabled people, for those who rely on PIP in order to fund their personal transport, the future looks very bleak indeed.
It’s one thing to have less money to spend, most of us have been through that, it’s quite another to also lose your ability to live independently.
Is it just me or is something untoward going on concerning disability and social inclusion? Let me explain.
The Minister for Disabled People Penny Mordaunt recently appointed 11 sector champions who are supposed to promote the importance of disability inclusion across the retail, music, leisure, tourism, hotels, media, advertising, airports, buses, banking and gaming sectors.
The aim of this initiative is to drive improvements in the accessibility and quality of services and facilities in each area, helping to highlight best practice and demonstrate to other businesses the merit of making disabled customers a priority.
So what’s wrong with that I hear you say? A couple of things.
The Minister asked the DWP and the Office for Disability Issues (ODI) to find suitably qualified or experienced people. The ‘advertisement’ said that they were looking for “champions who are ambitious, passionate and dynamic, with strong networks and the ability to reach out to a wide range of organisations and create momentum for change”. Anything missing? Well Yes! No mention of the word disability let alone disability-related experience. Presumably disabled people aren’t “ambitious, passionate or dynamic”. To make matters worse there is no mention of the appointed sector champions having any ‘power’, or resources so we must assume that as with so many previous initiatives this one will also disappear. Who remembers John Major’s Citizen’s Charter, Anne McGuire’s Equality 2025 Committee and most recently David Cameron’s Big Society?
Disabled people have campaigned for years to be included but on their own terms. The idea that non-disabled people should champion our cause smacks of the old days when patronisation and charity were commonplace. Does no one in the Minister’s office or the ODI remember the slogans ‘Nothing about us without us’ and “Rights, not Charity”? The fact that some of the appointed champions are disabled people is more by accident than design?
I’m sure the Minister is well intentioned but why is the DWP involved in a customer focussed initiative? Where is the Department for Business, Innovation and Skills (BIZ)? They are responsible for “making sure consumer law is fair for both consumers and businesses, and that consumers know their rights and can use them effectively.”
Disabled customers already have some protection through legislation which is designed to protect them from disability discrimination. I would urge the Minister to consult with the Equality and Human Rights Commission, BIZ and the ODI to explore ways of supporting and encouraging disabled people to assert their legal rights as consumers.
Finally, if the Minister wants to make a real difference, she will ensure that Disabled People’s User Led Organisations have the necessary resources to expose poor practice and discrimination and where necessary take appropriate action against the perpetrators.
Here are some other disability-related stories which might be of interest.
Minister appoints Sector Champions http://bit.ly/2mhXCaq
EHRC puts 18 accessibility questions to Premier League Clubs http://bit.ly/2mi674Y
Peer pressure sees minister finally announce date for taxi access laws http://bit.ly/2midYj5
No chance of halving employment gap without tackling independent living, says DPO http://bit.ly/2mi3uQN
Over the past few weeks, I’ve become increasingly concerned about the struggles that some disabled people seem to have when using or accessing the most basic customer service.
Let me explain; the Guardian recently published a story about Anne Wafula Strike, a Paralympian wheelchair user who was forced to wet herself on a train because the accessible toilet was out of order. (http://bit.ly/2jw0Xzz) A few days later I came across the story that Frank Gardner, a wheelchair user and BBC journalist, had been left on a plane because the equipment needed to help him disembark was delayed. (http://bit.ly/2jvKYkV) Then Socitm which represents IT and digital professionals in the public sector, published research which revealed that one-third of website home pages used by local authorities are not accessible to many disabled people. (http://bit.ly/2jvY41G).
I guess these stories are just the tip of the iceberg and that many of you have personal horror stories about the lack of accessible services you’ve encountered.
What troubles me is that legislation was passed back in 1995 that was supposed prevent these difficulties from arising. So what is going on?
Clearly, financial stringencies have a part to play, but I’m not convinced that this is the main reason. I sense that for some service providers disabled consumers are just a nuisance. They think it is less expensive or less complicated to ignore us and hope that by placing more barriers in our way or by making life harder for us, we will go away. Hence the term “swervices not services.”
Am I being harsh or exaggerating the situation? I don’t think so! We have been complaining about the lack of appropriate customer service and access for years; we have eschewed the benefits of inclusive design for decades; we’ve protested, sued and lobbied and despite all this, our concerns continue to be disregarded.
Perhaps there is some light at the end of the tunnel. Doug Paulley’s recent victory in the Supreme Court concerning wheelchair spaces on buses is a pointer to customer service providers that they will have to do more or face serious consequences. (http://bbc.in/2jGj3Bx)
I thought I’d take a few moments of your time to share some thoughts with you before we head off for the Christmas holidays.
The first is the news that my youngest daughter Grace recently presented us with our fifth grandchild a lovely little boy who will be known as Austin James. We now have enough grandchildren to form a basketball team
although because they are all under seven, we might have to wait a while before they start winning any medals. The arrival of baby Austin got me thinking about the kind of world that he and our other grandchildren will inherit.
Will it be a world where people routinely begin all their sentences with the word “so” which drives me to distraction? Will they still have to cope with individuals who say “Pacific” instead of “specific”? Will radio stations that claim to play non-stop music still spend fifteen minutes in every hour pumping out endless poorly produced adverts that exhort people to buy stuff they don’t need? Will they still be told that 78% of 92 women agree that face cream X got rid of their crow’s feet? Will “Strictly” and “Bake Off” still be on the telly?
Will the world still talk endlessly about saving the planet but never agree about how it should be done? Will the conflicts that so beset our time be resolved or will the politicians still be talking but doing nothing?
Will they still live in a world where disabled people find acceptance difficult to come by? Will the unemployment gap for disabled people have been halved? Will they live in a world where equality, respect and tolerance are commonplace?
If we are to see real change, then we need to stop talking and start doing. The problem is that everywhere we look we are overwhelmed by the size and scale of the task, and we could be forgiven for feeling utterly powerless.
My good friend Dave Rees told me this story; you might have heard it.
Apparently, millions of starfish were left stranded on a beach after a violent storm. A small boy was walking along the seashore picking them up one by one and throwing them back into the sea. An older man out walking his dog along the beach stopped and asked the little boy, “What is the point of throwing them back into the sea there are millions of them? What difference will it make? The child picked up another starfish and threw it back into the water saying ” I made a difference to that one”.
My question is what are we all going to do in 2017 to make a small difference so that my fledgeling basketball team stand a real chance of inheriting a very different world?
Have a lovely Christmas holiday and a very peaceful and fulfilling new year.
Hello, everyone, this is a first for me. I am posting something written by someone else! Lazy or what? Actually not! I read this article written by Sue Karstens and thought it amusing, educative and insightful so on that basis I thought I’d share it with all of you. I hope you enjoy it and if you’ve got something you’d like to share let me know.
Some years ago I worked in the accounts department of my local leisure centre.
I had always loved sport in general, and one of my passions at that time was running. Having participated in four London Marathons, I was looking for a new challenge. It came in the form of a knock at my door, and the arrival of one of the gym instructors.
“You have run the London Marathon, haven’t you?”
“How would you feel about running as a guide for a blind runner?”
She explained that she had a client in the gym who had been referred to her by his GP. It was an unusual story; Ray had gone to work on a building site, where he had fallen and banged his head. He seemed to be okay but collapsed at the station on his way home, and when he woke up, he couldn’t see. No warning, no history of illness. He went from sighted to blind in a heartbeat. He lost confidence and became clinically depressed. The exercise programme was to aid in his recovery.
It was Suzy’s responsibility to design a fitness schedule. She told Ray to set himself a goal. He said that he wanted to run the London Marathon. She smiled and suggested a realistic goal, but Ray was adamant; he was not a man to accept half measures!
Our first meeting took place on the running track during my lunch break. My training partner Helen had joined us because even at this early stage I realised that I was going to need backup. If I became ill or injured at any point, I didn’t want to impede Ray’s progress.
We were all terrified. I was afraid that I wouldn’t be up to the task; the only thing that worried Ray was that he would trip and take one of us down with him. We got our heads together and decided that we should worry about getting the training right, having a laugh, and accepting whatever may happen along the way. With that in mind, we ran a couple of laps on the track, just to see how we would get on.
The first issue that came up was staying in contact with each other. We began by holding hands, but it became apparent very early on that this would not work. Sweaty hands and one-armed running would be unsustainable over twenty-six miles. We tried a length of rope, but it was just too flexible. Helen came up with the idea of using a dog pull – the rubber bow-tie shaped toy. It was rigid when we needed it to be but would bend when the distance between us closed up. Perfect!
After a couple of training sessions on the track, we progressed to the road. What an eye opener that was (if you pardon the expression!) I felt like a cross between a sports commentator and a contestant on the Golden Shot (for those of you old enough to remember the show). I spent my whole time going “Left a bit, Right a bit, Puddle! Kerb coming up in three, two, one, down, three two, one up… … I had to be aware of every step, pothole, grating, pile of wet leaves, stray Jack Russell that crossed our path. Ray trusted us completely, which overwhelmed me. We progressed without mishap – other than the odd stitch from laughing too much!
Our next move was to participate in an actual road race. We chose a 10k, and duly rolled up to the start. We started at the back, just to give us space to get into our stride, but it wasn’t too long before we began overtaking runners. This highlighted another issue. When running in a crowd, you can’t always see the ground in front of you. This meant that both our instincts and reactions had to be quick to avoid any last-minute hazards. Water stations were an issue too, but with two guides, one of us could stay with Ray while the other grabbed drinks for us all. There were other practical difficulties too. With two female guides, we were very grateful to our fellow male runners who were happy to assist with bathroom breaks and locker rooms visits.
All too soon the day itself dawned, and we assembled, bright and early in Greenwich Park. Helen began by trying to describe the scene, but gave up when Ray and I fell about laughing; it wasn’t so much her “schoolteacher” manner, but the fact that she was pointing to landmarks as she described them. We had discussed such things in the bar after training on many occasions – how common expressions suddenly seem tactless. “I see what you mean, or “look before you leap.” Ray always wanted to avoid the Fawlty Towers “don’t mention the war” scenario, where everyone tried not to mention the fact that he was blind. It was a fact, not a judgement of him.
Early on Helen had been mortified having spent half an hour being teased by Ray because she had spent large sections of our run stopping to salute lone magpies. She turned to him and said, “so what do you do when you see one magpie?” There was a pregnant pause before he grinned answered: “Say Hallelujah I suspect!”
The start was always going to be problematic; Thirty-five thousand people milling around, kit bags to get onto lorries, finding the portaloos, collecting bottles of water, and all the general pre-race rituals. We positioned ourselves early and allowed the assembled masses to gather around us. Tannoy announcements kept us up to date with the progress of the race. An ironic cheer went up when it was announced that the elite runners had gone past the three-mile mark when many of us had yet to take our first steps.
The race unfolded slowly. We walked much of the first mile, as the sheer volume of runners made it impossible to pick up speed. Eventually, gaps opened up, and we were able to settle into a comfortable pace.
To say that the terrain was variable would be an understatement. Between carpets and cobblestones, we all had to keep our wits about us. Water stations were a nightmare, with plastic bottles strewn across the course for several hundred yards. One wrong step and any one of us could have sprained an ankle. Due to a little luck and a lot of preparation, we survived without incident. Helen still insisted on keeping up the commentary (without the pointing), and Ray thought she was getting her own back when she described the rhinoceros running beside him. It wasn’t until we got him to stretch his hand out to the side and edged him over that he came into contact with our thick-skinned companion. The smile that spread across his face was a delight to witness. We were now officially surrounded by lunatics!
Our fellow runners were incredibly supportive. Helen had obtained some high viz vests. Ray’s clearly stated “blind runner”, and Helen’s “guide”. I wanted to run in a Scooby Doo costume and put “dog” on mine, but sadly they were only available in size 7-8 years, so I had to settle for “guide” on mine too. It just gave those running around us an opportunity to provide us with a little more space, and more importantly not to try to run between us.
We made it. We crossed the finish line arm in arm in slightly over 5 hours;
Not my fastest time, but far and away my proudest moment. Ray kept thanking us, but in actual fact, it was his drive and enthusiasm that kept us going through those dark February mornings in the pouring rain when we were heading out for those long, long training runs. He never once faltered, never once complained. Every challenge was met with joy and devilment. We carried on running for a long while afterwards; anything from ten-mile road races to cross country – complete with styles, ploughed fields, and loose horses. The highlight had to be a ridiculous event, aptly named “Only Fools, Not Horses.” It is run over the cross country section of the three-day event course at Blenheim Palace – complete with jumps. Fortunately one of the burlier male runners joined our team; we would never have got over the jumps without his help. It was my turn to trust Ray as he braced himself at the top of the bigger jumps and reached down to help me over. The water jumps were extraordinary, but Ray handled it all like a well -trained thoroughbred. Princess Anne would have been proud of him!
We didn’t do it to prove a point. We just did it for the pure hell of it, and I have photos of us laughing so hard that we can’t stand up straight. Don’t get me wrong, I am not trying to belittle the enormity of the impact that losing his sight had on my wonderful friend; but without it I would never have met him, and would have lost the opportunity to understand the pitfalls that face so many visually impaired people have to negotiate on a regular basis. They say you should walk a mile in someone else’s shoes. We managed twenty-six, and for all but Ray it was a real eye opener!
Sue Karstens 2016
I’ve just returned from a short city break to the beautiful Italian city of Florence.
What made this trip so special was the fact that we’d managed to find an accessible apartment, right in the city centre, whose history went back to the 14th century. Most wheelchairs users don’t get much choice when it comes to accessible holiday accommodation, although this is slowly changing. Normally I have to stay in square box modern hotels with as much character as a drawing pin.
The accommodation we rented in Florence began life as an open market in the 14th century and was later converted into housing, and then more recently into seven apartments, our accommodation was on the ground floor and wheelchair accessible. Many of the period features have been
retained, most noticeably the vaulted ceiling and exposed brickwork. To gain access from the street, we had to use the supplied split fold ramp but once up the only step, the accommodation was all on the level. We spent a very enjoyable and comfortable four nights in this historic apartment and would recommend it to anyone. Here’s the link http://www.palazzobelfiore.it/
If you’ve ever been to Florence, you will know that there are some things about the place that make it unique. The first is that it’s stuffed full of the most extraordinary art, sculptures and historic buildings. Second, it has some charming restaurants, and other eateries and third the
pavements and the roads, particularly in the pedestrianised centre of the city, are an absolute nightmare if you are on wheels. Fortunately, I took a manual wheelchair with a Batec bike attachment fitted to the front. Here’s the link http://www.cyclonemobility.com/batec. With the bike attached
the small front wheel casters are lifted off the ground, and this meant that I was able to negotiate uneven and potholed pavements relatively safely and easily. If you are thinking of going to Florence, I would certainly recommend you use a wheelchair or scooter with big wheels.
Finally, and perhaps most importantly, every gallery and exhibition we visited in the old city were wheelchair accessible and free, so my wife and I were able to enjoy just about all that Florence has to offer without breaking the bank. Another thing that impressed me was the fact that in a number of galleries there were tactile replicas of some of the paintings, which enabled sight impaired people to get a sense of the works of art on display, it would be good to see more of this in the UK.
Be warned Florence is an overwhelming experience so you will need to pace yourself. Fortunately, there are plenty of places to sit and relax, and the food and wine make relaxing an even more pleasurable pastime.
Have a good week and here’s some news which might be of interest to you. Supplied by John Pring Disability News Service
At long last, the summer has arrived! Time to take off my fleece!
What an extraordinary few weeks it has been. First, we had all the drama of the Brexit vote and then all the carnage that followed. A new non-elected Prime Minister and Philip Hammond appointed as Chancellor of the Exchequer, Boris Johnson inflicted on the rest of the world as our Foreign Secretary with Nigel F and Michael Gove nowhere to be seen. I don’t have the time or the space to update you regarding the state of Her Majestys Opposition! Alongside all of this mainland Europe and the USA, witnessed multiple shootings and stabbings, some clearly connected to terrorism others attributed to mental health issues.
More recently in Japan 19 learning disabled people were murdered, and 25 others were seriously injured by Satoshi Uematsu, a 26-year-old care worker who gained access to the residential setting where they lived. It came to light shortly after these murderous attacks that Uematsu had a history of mental health difficulties. Uematsu declared
his hatred for the 800 million people with disabilities across the world, saying they should be exterminated, and the cost of caring for them should be spent on other things. It is alleged that he supported Adolf Hitler’s views on eugenics and had written to Japanese officials volunteering to kill disabled people as they were a drain on society.
These horrific incidents have done nothing to enhance the way the public views disabled people, particularly those who rely on the state for their support or those who are trying to manage a complex mental health condition. Now more than ever we need to reinforce the fact that most people with mental health conditions are not violent and that disabled people, in general, can and do make significant and valuable contributions to our society.
Finally just an update; as most of you know, I’ve reunited with my old chum Simon Minty and together we are having a lot of fun putting together a regular podcast. If you’d like to take a listen please visit us at Phil and Simon Show
And after, all that here are some news stories that might interest you. As always these are provided by John Pring www.disabilitynewsservice.com
Earlier this month I made my annual pilgrimage to the Mobility Roadshow, this year held at the home of British motorsport, Silverstone. On arrival, I bumped into a couple of old friends, one of the reasons I go. They recounted horror stories about parking a long way from the exhibition halls and having to wait for over an hour for wheelchair accessible courtesy buses.
Note to organisers; if you organise a major event where vast numbers of wheelchair users are likely to attend then locate parking close to the venue, preferably not on grass, if this isn’t possible then find another site!
After spending an hour familiarising myself with the layout of the Show, I began the search for the new kit. You know the sort of thing, wheelchairs that will climb bridlepath styles, powered wheelchair batteries that last a year and weigh less than a kilo, solar powered accessible vans, scooters that elevate so you can reach the top shelves in the supermarket. Sadly none of this was in evidence. More of the same old stuff, being demonstrated by less than enthusiastic sales teams who had an air of “I wish I were somewhere else” about them.
There was one headline grabbing piece of kit, called the Genny. As manual wheelchair users, we know how easy it is to get our small wheels stuck in pavement cracks or tramlines, the joy of dog poo on our hands, getting soaked because we can’t wheel around and carry a brolly.
The Genny is designed to eliminate these problems. It is a two wheeled powered device, based on the Segway, it’s full of gyroscopes and smart tech which enables the user to turn on a sixpence (remember those!). It climbs kerbs, goes across fields, you can carry an umbrella while holding hands with a loved one, and, most importantly, you look cool while you’re doing it. There is only one tiny little drawback the Genny cost around £13,000!
All in all, I found the Show somewhat disappointing, it felt jaded and lacked pizzazz and excitement. If the organisers want to ensure we’ll all come back next year, they must find ways of encouraging inventiveness and innovation. They could make a start by reducing the costs for smaller companies so that they can afford to rent stands to showcase their products.
Now where can I lay my hands on £13,000?
Almost forgot, here are the links to some interesting disability stories.