In this Gear, Gadgets and Gizmos episode from the Research Institute for Disabled Consumers (RIDC), I’m in conversation with Vivek Gohil who has managed to find ways to enjoying gaming by bending technology to his will.
Vivek is 29 and from Leicester, he lives with the muscle-wasting condition Duchenne Muscular Dystrophy, he uses a ventilator to help him breathe and is a powered wheelchair user.
He is a Blogger, Speaker, Accessibility & Assistive Tech Consultant and Freelance Writer for the gaming website Eurogamer.
Vivek primarily writes about disability representation in all forms of media, assistive technology, gaming, mental health and his lived experience.
He’s worked with Microsoft testing their Xbox adaptive controller, Logitech reviewing gaming mice and game developers to improve accessibility and disability inclusion.
Comics, Sci-Fi, Robotics, Superheroes, Space and Psychology interest him so if you’re not busy then he can talk your ear off about those topics.
Rate it! is a product review website by and for disabled people. It’s an online space for you to share views of products (specialist and mainstream), hacks, and tips to make life easier. If you’re a disabled or older person living in the UK, use your knowledge and experience to do consumer research – Join the RiDC research panel
I’ve known Simon Minty for many years in fact for a number of those years we were business partners, so I feel I know him pretty well. In this conversation, Simon talks about the things he finds invaluable in helping to maintain his level of independence and I must admit there were one or two surprises.
Simon has delivered training and consultancy in the field of equalities since 1997. He has personal experience of disability, being of short stature and of limited mobility.
Based in London, Simon works throughout the UK and internationally. Simon’s passion for equality, his innate and learned knowledge of disability, his ability to listen and address the issue in hand combined with an infectious sense of humour has enabled him to successfully work with clients from a small NGO to a multi-national investment bank.
He’s produced numerous videos and co-produced and performed in the sell-out Edinburgh Fringe comedy show Abnormally Funny People in 2005, returning again in 2015. He is a host of BBC Ouch podcast and the Phil & Simon Show
A keen traveller, he won the Travel X Travel Writer of the Year 1999 – Best Television Feature for his Channel 4 travel programme in China.
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.
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.
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