We seek him here, we seek him there,
Those Frenchies seek him everywhere!
Is he in heaven? Is he in hell?
Where is that damned elusive Pimpernel!
Many of you will recall these famous lines from the play and novel “The Scarlet Pimpernel”. You may remember the Scarlet Pimpernel worked in the dark; his identity was only known to a few loyal supporters under a cloak of secrecy. I’m struck by the similarities between the Pimpernel’s behaviour and the response of today’s senior business leaders towards disability. Business leaders who are themselves disabled keep quiet and this often leads to a feeling that it’s a taboo subject. Disability lurks in the shadows and those employees who have non-visible impairments only tell trusted colleagues or friends. Very Pimpernelesque!
A recent report Disability Confidence: The Business Leadership Imperative’ supported by EY (formerly Ernst & Young) has found that business leaders with disabilities are twice as likely to be underrepresented in companies globally: though 1 in 7 of the world’s population live with a disability, fewer than half this figure (1 in 14 or 7%) of board-level executives consider themselves to have a disability. Of these, 1 in 5 does not feel comfortable revealing their disability to colleagues – highlighting that disability continues to be a taboo subject for many of the world’s leading businesses.
Another report this time published by the Thomas Pocklington Trust found that disabled people are being marginalised, 26% of British people admitted that they avoided conversations with disabled people, just over half felt that they did not have much in common with disabled people and 30% were concerned about causing offence and 17% didn’t know what to talk about. Evidence perhaps that reinforces the notion that it is better to keep quiet about having a disability.
A worldwide call to action for business to recognise the value of disabled people found disability is still woefully absent from the majority of board-level discussions globally – with the majority (56%) of global senior executives rarely or never discussing disability on their leadership agendas.
Despite all this gloom and despond, the question of disability employment was for the first time part of the agenda for business leaders attending the recent World Economic Forum (WEF) in Davos. Thought leaders from the world of disability were rightly excited. An enthusiastic panel of disability experts appeared on the platform and shared their thoughts and ideas about how global businesses could take advantage of the disabled talent that is just waiting to be unleashed. Sadly very few business leaders attended so the panel’s pearls of wisdom fell on empty seats. If we are to take any comfort from this sorry state of affairs it is that at least the subject was on the agenda.
There are other signs that some things might be changing.
A CEO of a large corporate experienced a severe mental illness and as a result, had to take time away from work to receive treatment. In my experience what usually happens next in these situations is a generous severance package is put together and the search begins for a replacement. Not in this case. The individual concerned made a full recovery and was supported back into their role. What makes this story even more unusual was that the CEO then talked openly and publicly about what had happened.
By so doing they offered reassurance to those in a similar position that it is possible to continue working in the most demanding roles after experiencing a serious mental health challenge. In this particular company, at least, mental illness is now openly discussed. Programmes are being developed to assist and there appears to be a steady change in the corporate culture which now encourages people with non-visible impairments to share their stories.
At last the Pimpernel has been brought into the light.
The other day as I was shaving I remembered my mother, this often happens. I’m not sure why the act of shaving invokes these memories, but it usually does. My mother died back in 2001; it was a good death. She was lying in bed and asked her devoted carer, Chrissie, for a cup of tea, and when Chrissie returned with it, she had departed this life.
I recall that whenever I visited my mother particularly towards the end of her life, the first half-an-hour of our conversation was spent in cataloguing and discussing her ailments, aches, pains, and other trials and tribulations. She would sit in her velour covered armchair in her flannelette nightie with her nasal cannula in place and hold court. It was impossible to move her off health topics until she had exhausted every possible nook and cranny.
These memories were in part awakened because of a recent weekend I spent in rural Yorkshire with some good friends all of whom are now in their 60s and 70s. We all arrived at our host’s lovely old house and after the usual hugs and cuddles and comments like “you’re looking well” and “you look just the same” “you haven’t aged a bit” we all settled around the large kitchen table with cups of Yorkshire tea and a variety of other infusions.
It wasn’t long before the conversation turned to the various health conditions that several of us are currently managing. Five out of the eight of us were wearing hearing aids, three had had a hip replacement or were waiting for one, and we discovered that just about all of us now take handfuls of pills to keep body and soul ticking over. It didn’t matter how hard we tried over the rest of the weekend we kept returning to the subject and if we weren’t talking about the health issues we were talking about the gadgets and appliances we are using to fight off the ageing process. Automatic bottle and tin openers, Amazon’s Alexa, grab rails in showers and subtitling on television programmes all got a mention.
How does this happen? I don’t recall banging on endlessly about my health when I was in my forties. Is there some kind of switch that gets activated when we retire or reach our sixth/seventh decade?
I think in my mother’s case the process was gradual, but I think she became preoccupied with her health because her world gradually contracted as she aged. She rarely got dressed, hardly ever went out except to the hospital or the local doctor. She had few visitors, and the TV was her only window on the world. I recall that on one occasion my brother took her shopping in Croydon. They strapped her oxygen cylinders to her wheelchair and spent the afternoon travelling on the trams and visiting the shops in the shopping mall. When we next visited her general description of her latest health challenges took second place to the magic of Croydon. She had something else of interest to talk about!
So what of my friends and me in Yorkshire? We are all busy, we all travel and have a wide variety of interests. We all routinely access the internet, we all have grown up children plus grandchildren our worlds could hardly be described as contracting.
Maybe the problem is that if you have a peer group who are all in their sixties and seventies you have a shared history and you are all anxious about the same things like the gradual loss of your physical and mental faculties.
Perhaps part of the answer is to hang out with forty-year-olds? When I see my grown-up children, our conversations are all about what’s going on for them. I listen to their hopes, fears and dreams which are often wrapped up in things like mortgages, buying a bigger house, work, holidays, their children’s education and so on. These are all things that I have been through so can contribute my ideas and suggestions. Fortunately or unfortunately they aren’t going through what I’m now going through so they have no particular interest or suggestions to make. They care, but the topics are alien to them. The terrifying realisation is that I’m slowly but surely becoming my mother and my children are indulging me. How very depressing! Now, where did I leave my reading glasses and what should I be doing next?
How many of you reading this think about the cutlery you might use when you go out for a meal? The chances are you’ll be much more interested in the menu, the prices, the people you’re eating with and the restaurant’s ambience.
A similar situation arises when considering going to the seaside on a gloriously hot summer’s afternoon. If you’re fastidious, you’ll check your car tyres, the oil, you’ll fill up the windscreen washer bottle, and you’ll make a list of things to take that will make the trip more enjoyable. I doubt that you’ll think to check on the availability of toilet facilities at motorway services on route or at your destination!
For many disabled people, particularly those with severe or complex mobility impairments, the exact opposite applies. The availability of appropriate toilet facilities will be uppermost in their minds, and the lack of certainty about whether the necessary facilities are available may be enough to prevent the trip to the restaurant or the seaside.
What’s ironic is that accessible facilities have not kept pace with the increasing availability of personal transport through programmes like the Motability Scheme. The motor industry and, in particular, mobility vehicle adapters have continued to design and develop all manner of gizmos that enable even the most severely disabled person to either own and drive an accessible vehicle or to be safely and comfortably carried in one as a passenger. The variety of electronic devices now available is mind-boggling. Vehicle tail lifts make it possible for extremely heavy powered wheelchairs to be lifted and secured; seat transfer systems assist people to move from their wheelchairs into the driving seat, electronic hand controls take the strain out of steering, braking and changing gear. All these innovations, of course, come at a price but what is the point of spending thousands of pounds on an accessible vehicle if you can’t enjoy an accessible environment on the route to and at your journeys end?
It’s not all bad news. Wheelchair users have seen significant improvements in the provision of accessible toilets. The National Key Scheme better known as the Radar key began in 1981. Since then, more than 400 local authorities and thousands of businesses have joined the Scheme. Some 9,000 toilets are now listed as being accessible via the Radar key, but the figure is probably much higher. Wheelchair accessible restrooms are far more common, most motorway services, mainline railway stations, shopping malls and theme parks have had these facilities for a very long time.
A study in 2009 by the University of Dundee found there were 250,000 people in the UK for whom a standard accessible toilet does not meet their needs. Accessible restrooms are great for those who can get themselves out of a wheelchair unaided. However, lots of people can’t do this, such as people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, and some older people. John Lewis, the famous high street retailer, recently made headlines for all the wrong reasons when a mother complained that she had been forced to change her severely disabled child on the toilet floor. John Lewis defended itself by arguing that it didn’t have enough space to provide bigger toilets but promised to review this when it refurbishes or builds new stores.
The Changing Places campaign (http://bit.ly/2E9Dc8X) begun back in 2003 seeks to ensure that the most severely disabled person has access to appropriate toilet facilities thereby enabling them to do what most of us do without even thinking about. As a result of the Campaign’s activities, there are now well over one thousand Changing Places toilets across the UK. These toilets provide not only, as you might expect, a w.c. and wash basin but also offer a hoist, a sizeable drop-down table for changing purposes and plenty of space to enable carers or support workers to assist the person where necessary. It is becoming increasingly possible to plan a trip using the Campaign’s route planner to identify suitable toilet facilities on your journey. As an example, I plotted a route from Hertford in Hertfordshire to the Brighton Marina in Sussex and found at least seven facilities that meet the Changing Places criteria.
A more recent exciting innovation which began in 2014 is the development of the Mobiloo. (http://bit.ly/2H1JfQk) The concept is very similar to the Changing Places facilities, but with a significant difference. The toilet equipment is fitted inside a small van or lorry which means it can be located at just about any outdoor event, space permitting of course. Mobiloo is a social enterprise that now has a fleet of seven vehicles across the UK. The vehicles are for hire and come with a volunteer driver who shows people how to use the equipment onboard. The Mobiloo opens up all manner of fascinating travel possibilities; gymkhanas, craft fairs, sports events, music festivals, Glyndebourne and Glastonbury here we come!
We’ve come a long way since the days of institutional care for the most severely disabled people in our society. Independent living, autonomy, accessible housing, personal transport are not just pipe dreams; they are becoming the norm. We will know we’ve cracked it when those with the most complex disabilities can travel around the country without worrying about whether they can find and use the loo!
( This article 1st appeared on www.cartwrightconversions.co.uk website)
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.