Insert Coin to Continue

It took about 20 minutes and lots of cursing, but it came to life, Dad had just tuned the television into an arcade machine with a borrowed games console and the screen lit up with the word ‘Pong’ and from this day onward I would become a self-confessed addict to video games. It must have been 1978 when this machine turned up in our living room and as quick as it was here it was gone again, I had no idea where Dad got this technology but it was above our standard of living, I mean we were having to put 50 pence pieces into the back of the television to get it to work, there was no extra money in this house for a games machine.

We had one weekend with this machine from outer space and then it was returned to its owner, but it had left a lasting impression on me that would never leave. A simple game of bat and ball but in sprites on the family television, first to 21 points, it was as simple as that and now I’m going to take you on a potted history of my video game addiction, right up to today…

Shortly after that initial slither of home entertainment arcades were opening in the UK and game technology was moving fast, as was I, doing all I could to earn and gather 10 pence pieces for the arcade at the back of my local video shop. Ironically, I was 12 years old and started my paper round for the local newspaper and my local newsagents to fund my habit and the game of choice on a Friday pay day was ‘Paperboy’, launching newspapers at the coloured house and avoiding non-subscribers, their dogs and drain gates, hoping and trying my best to get to the end of ‘Easy Street’ as many others watched over my shoulder, waiting for failure and hoping for my demise, coins in hand, kids wouldn’t think twice to trample all over you to be next to grab those handlebars.

I was off school with tonsillitis one day and went to the shops with my Mum and persuaded her to let me go and have a look around the arcade behind the video shop whilst she shopped for food across the road. I walked in and two blokes were removing the Paperboy cabinet and replacing it with a new game, and I was first to see it, all alone as all the other kids were in school. I was beaming waiting for it to be plugged in and when it was the screen lit up ‘Bubble Bobble’ it said and one of the blokes put a 50 pence piece in it, 5 credits… “Go on then son, away you go!” FREE CREDITS! I got in trouble that day as mum had to ask the local policeman to help find me because she didn’t even know the arcade existed at the back of the video shop and therefore didn’t look in it to find me and 5 credits will get you a long way with a 100-level game like Bubble Bobble and this was my first experience of being a video game ‘completionist’, an obsessive who wouldn’t give up until I had beaten the machine, blasting bubbles at the enemies, hoping to burst them before they got out and chased me. The other thing about Bubble Bobble was that it had a soundtrack, something that would become so important to gaming, like the game it was repetitive and addictive but brought on huge anxiety as it sped up if you were running out of time on the level. Next to Bubble Bobble was R-type, my next love affair, encouraged to blast off and ‘Strike the Evil Bydo Empire’, a small space craft with a detachable gun taking on huge end of level bosses, one of my greatest achievements in life is leaving that arcade on a rainy Saturday morning having completed R-type and my name ‘MAD’, being at the top of the leader board.

Autumn 1986, It’s a Saturday and there is a school trip to Alton Towers, not the most popular kid I decided to go alone, no family, no mates, just me. It was easier that way anyway, I could go where I wanted and go on what rides I wanted but I was side-tracked, I spent all my money and most of my day in the arcade playing the new kid on the block… Out Run! Out Run was my first love when it came to the racing genre which would become my game of choice over any other.

Get Ready!

The object of Out Run is to speed across the map in your Ferrari Testarossa Spider with your beautiful lady sat beside you as you listen to the Magical Sound Shower, it was dreamy, the sound and graphics were incredible but it was difficult and I always ended up seeing the request ‘Insert Coin to Continue’ which was now a 20 pence piece, times they were a changing’, so I did what I was asked and zoned out in awe of the game in front of me, day dreaming “They’ll never beat this, this is the ultimate game, there’s nowhere to go from here”, The End.

1987 was the year when the arcade truly came into the house, games consoles had made a huge leap and in 1987 the consumer had a choice of 8-bit systems, the Sega Master System, or the Nintendo Entertainment System. Luckily, my paper round had turned into a job in the newsagents during all holidays and weekends, so I was earning a wage at 14 years old and eventually got both the consoles mentioned above and my gaming stayed that way, always buying the latest, next generation system… Sega Master System, Nintendo, Sega Dreamcast, PlayStation 1, 2 and 3, Xbox, Xbox 360, Xbox One and now the Xbox Series X.

My first...

My last, my everything

Along the way I had some massive highlights like Tony Hawk Pro Skater (1999), Call of Duty 3, Eder Dam being my first ever truly immersive online experience (2006) and then there were the games that had those outstanding soundtracks that I touched on earlier. Fifa 10 (2009) rocked out The Enemy, Be Somebody, GTA V (2013) Damien Marley, Welcome to Jamrock was perfectly fitting, to me, music is a special part of the whole gaming experience.

I’ll try to conclude here but I really could go on forever writing about something I’m extremely passionate about like this. A recent blockbuster for me and many others was Rockstar’s fantastic prequel; Red Dead Redemption 2 (RDR2), a fictional recreation of the American Old West in 1899, RDR2 focuses on the life of Arthur Morgan and his position in the notorious Van Der Linde gang. The game follows the gang’s decline as they are pursued by lawmen, fellow gangs, and Pinkerton agents. This was the closest to being in an actual motion picture as it would get, an emotional roller-coaster of a game that blew me away.

Arthur Morgan - RDR2

5^th November 2021 00:01, 200mph in the Mercedes-AMG Project ONE as I launch the latest release from Playground Games; Forza Horizon 5 (FH5), now this game is incredible! Based in Mexico the latest instalment of the series is breath-taking, in my opinion this is the first true experience of next generation gaming, sure the Series X was released in the UK on 10^th November 2020, but I think it was waiting in the darkness until this moment. The scenery is mouth-watering, and the car selection is hugely extensive, the play list comes with a recommendation from me – ‘Midnight Kids, Everything You Are’ and the missions, well the missions are a plenty! In fact, to begin with, there’s too much to do, it’s slightly overwhelming in that respect. One thing I haven’t mentioned until now is what video games truly mean to me, why are they so important to me, well they mean the world, they are a leveller, my disability is non-existent in the gaming world, I am equal. With that said FH5 is the most accessible game ever made. Accessibility features include American Sign Language (ASL) and British Sign Language (BSL) support for cinematics; a game speed modification setting that allows gamers to play at a reduced rate; customisable subtitle options; High Contrast mode, Colour Blindness mode, personalised button configurations and more. It seems that the developers made inclusivity a priority and I love it!

I am 47 years old, and I am stunned by this game… “They’ll never beat this, this is the ultimate game, there’s nowhere to go from here”, The End.

The Champion of the World!

To Be Someone Must Be a Wonderful Thing

The title here has been taken from a song originally by The Jam and then covered by Noel Gallagher. I was recently listening to this in the car on holiday with my family in South Devon and it sparked an internal conversation with myself; it was thought-provoking.

Essentially, the song alludes to fame, success and inclusion and finding acceptance only because of the fame and success. In reflection of recent events it made me feel that I would just like to be included, and that abled-bodied people were the ‘Someone’ that I wanted to be; I just want to be treated the same way as the rest of society, accepted at all costs rather than being frowned upon because I was a burden or an inconvenience. It’s unacceptable not to be accepted.

Imagine you’re with your children on holiday, by the beach and treats and sweets are small pleasures we take at this time of year; everyone loves an ice cream on the esplanade or promenade, right? They offer 90 different flavours. I love a mint-choc-chip myself.

But there’s a problem, a physical barrier in the way; I can’t get into the shop in my wheelchair.

This scene is played out perfectly in the fantastic new Paralympian film on Channel 4 (Super Human - seen here) where we see rugby player Kylie Grimes denied access into Larry’s Café because of the step outside. She turns and retires, swearing under her breath. That was me, is me and will now be me going forward, forever... unless things change.

Some things are changing though, quite literally. Changing Places toilets are now popping up all over the UK, and this is a big deal and needs to be shouted about like my colleague Kerry Thompson (Changing Places Support Officer) shouts with so much enthusiasm. It is a very taboo subject but one that needs to be brought to the forefront. I hold my hands up when I’m slow on the uptake of a campaign and Kerry is streets ahead of me, and I commend her for all her hard work and campaigning for others. The Changing Places consortium is a group of organisations working to support the rights of people with profound and multiple learning disabilities and/or other physical disabilities. Established in 2005, the consortium campaigns for Changing Places to be installed in all big public places so people can access their community.

So we’re now, slowly but surely, finding it easier to spend a penny. But what about going back to spending our pounds? Why am I not able to buy my girls an ice cream on holiday? Why is my money less acceptable than other people’s money?

I think it’s time we spoke about the ‘Purple Pound’. The Purple Pound refers to the spending power of disabled households. A disabled household is a household in which at least one of the members of the family has a disability. Organisations are missing out on the business of disabled consumers due to poor accessibility (both physical and digitally) and not being disability-confident in their customer services approach.

I’ll give you just three statistics to think about:

Business lost in the UK because disability considerations have not been made or met:

· High Street shops lose £267 million per year

· Supermarkets lose £501 million per year

· Banks and Building societies lose £935 million per year

So you can see that the Purple Pound is very big and powerful. The annual spending power of disabled people and their households continues to increase (14% each year), and is currently estimated to be worth £274 billion per year to UK businesses.

Why do businesses not want the Purple Pound, and as a society why do we accept this?

When we think of diversity and inclusion nowadays, we know that many conversations are being had and that people are learning so much, so fast and this is fantastic. But why is it considered acceptable that disabled people are not included in so much? This attitude simply would not be accepted if different demographics in our society where treated this way, and rightly so.

In November 2010 the food hygiene rating scheme (FHRS), which operates in England, Wales and Northern Ireland, was formally launched. This is a system that tells the public how hygienic an establishment is before you walk through the door. Most places have stickers on the doors or windows, and all can be found online too.

What if we carried out similar tests in businesses to see how accessible they were? What if there was a ratings system for disabled consumers?

We’ve seen with the FHRS that 5 star establishments get the most custom, so the same would happen with disability, surely? Or will this never happen because so many businesses would come in at a one or two star rating? The FHRS rating is a badge of honour for a business, and its standard of disabled accessibility should be too. Or are we just paying lip service to inclusivity?

I am writing from a personal standpoint of utter frustration here, but I’m now going to actively campaign more as I have been massively inspired by my colleague Kerry Thompson, the Changing Places network, my friend Rich Copson (co-founder Access Rating App) - who has been talking about these subjects for a while now - and the wonderfully powerful Paralympics advert on Channel 4.

Super Human - Comfortable, In my accessible Dojo

Nearly every day something changes for me, I am always learning and I need to adapt and adjust. With my muscle-wasting condition things change quickly; one day I can lift my mug of tea to my mouth and the next I have to have a smaller cup and not a large mug. Sadly, many of us could easily be affected by disability; in the blink of an eye our lives can change. As always, I like to think of others; if my experiences are negative ones then it is always going to be the same or worse for others, and I don’t want that. One thing I’ve learnt quite quickly is to never take anything for granted, and I see that as a very positive thing. I feel lucky to think that way.

To be someone must be a wonderful thing. But I don’t want the guitar-shaped swimming pool in the song, I don’t want to be a famous footballer or to be rich and have a lot of fans, have a lot of girls to prove that I’m a man...

All I want is to be able to go to the toilet when I need to when I’m out and about. All I want is to enjoy that mint-choc-chip ice cream on the prom with my girls. All I want is to go for an all-day breakfast in a café like Kylie Grimes. All I want is a fairer and equal world for others.

All I want is some small changes that could make a huge difference.

#ChangingPlaces

#SuperHuman

#Paralympics

I Got the Job

At the age of 23 my life changed. In the time it took to deliver a diagnosis my world was shaken up like a snow globe. I’m going to ask you now to spend that same amount of time just to read this blog, and I hope it will go some way to changing the lives of many, many people.

Some people reading this will already know my story but for those that don't, here it is...

All my life I wanted to fix things and I loved motor vehicle engineering, motorsport and everything to do with cars. I was living my dream working on old fast Fords and other classic cars until one day I slipped in the workshop and I couldn't get back up. I had dislocated my knee and my leg was trapped under the car lift. After months of physio and hydrotherapy my doctor noticed that it wasn't healing like it should, I wasn't moving my legs as expected either and he referred me to a specialist at the John Radcliffe hospital, Oxford. During that visit to Oxford I discovered my life would never be the same again. At 23 years old I was diagnosed with a life-limiting, muscle-wasting condition called muscular dystrophy.

With my head spinning and in an emotional maelstrom, I went back to my own GP for the straight-talking truth. He said I would never be able to lift another wheel in order to earn a living, but also, that I wouldn’t need to. I could stop right there and then and receive social security forever. I was lost. I was sad, angry and scared. After eight years of doing what I loved I would have to give it all up; the dreams I had as a child were gone.

As a person, and as a Dad, I’ve always felt my behaviour is infectious. I felt like giving up, and it would be easy to claim benefits for the rest of my life. If I quit working and gave up, then so would those around me, but if I fought to carry on then I could inspire those same people instead. I had to be the best Dad I could be, and my girls had to see that you shouldn’t be defined by the horrible things you encounter in life, you should be defined by how you react to them.

My anger burnt out and slowly turned to focus and determination. I transformed from feeling beaten to feeling a hunger. I felt a desperate need to help myself and others, to try to find a treatment or cure for my own condition, which was already having a physical effect. I knew I needed to change my whole career and this was daunting, I faced a profound crossroads where my life would change from workshop to office, with all the language, cultural and behavioural change that entailed.

I closed my eyes and dived into the deep end. I took all my motor vehicle engineering experience and applied for a job at Volkswagen UK in the fleet car sales department, picking up sales experience and a whole new level of communication skills. I then used this experience to gain a job purchasing components at an IT company, and after a few years pushed on once more to work in a pharmaceutical company working on clinical trials.

My journey had taken me to a position where I could see progress of medicines and results of many clinical trials including trials for stroke, cancer, epilepsy and indeed muscular dystrophy, right in front of my own eyes. I felt that maybe I couldn’t control my own destiny, but I could still affect change, not for me but for younger people with my condition who hadn’t had the same chance to enjoy life like I had.

It was in this period that my wife started to see stories on social media of children receiving diagnoses of different strains of muscular dystrophy, and we looked at our three fantastic girls and felt so grateful that they were so happy and healthy. But that wasn’t enough, we couldn't feel content solely with our own lives, unless we did something and tried to help others.

Our new lives as dedicated fundraisers started by walking one solitary mile. My plan was to push myself and my muscles further than we thought possible, because I was slowly losing the ability to walk altogether. We raised £1000 by walking to my local pub, supported by family and friends. It felt liberating, inspiring and invigorating, but also absolutely exhausting. But then someone at Muscular Dystrophy UK told us the difference our £1000 would make to the community; it would fund a whole 22 hours of expert research. Imagine what progress could be made in that time? It resonated with me because when I was first diagnosed, I was told there was no treatment or cure. No magic pill could be taken to make things better. Yet we had given ourselves and others hope by walking one solitary mile, and seeing a tangible benefit from it would be the catalyst for so much more!

Fundraising had well and truly begun in the Hywood household and many other households, because my infectious positivity became an influence to others, just like I hoped it would. One mile led to many others. We walked individual miles to many famous events like the F1 at Silverstone, the tennis at Wimbledon, the FA Cup final at Wembley, we even recreated the most famous mile ever; Roger Bannister's at Iffley Road, Oxford and so much more. By now I had become a very proud ambassador for the 'Move a Mile for Muscles' campaign at Muscular Dystrophy UK, and our fundraising team – “Hywood’s Heroes” - was getting bigger, as were our events.

Being selfless and infectious felt fantastic and rewarding in a pure and natural way. This was never more evident than when I pulled off one of our biggest events by organising a group climb up Mount Snowdon, Wales in 2017. Initially the idea was that a few friends would help me climb to the summit, but in the end I persuaded over 40 friends and members of our family to do it. This was a physical and mental challenge for a lot of them, but seeing people extend their limits and achieve demanding personal goals, because of me, was emotional and incredibly stimulating. You cannot describe that feeling of inspiring people to cast aside their doubts, fears and anxieties and just go for it. Personally I was exhausted, but I couldn't sleep for days, I couldn't believe that we just did that. Euphoria.

Snowdon - The only way is up!

With the help of these people and many others, we have since raised £185,000 (4111 hours of research) and set up our own family fund; Hywood’s Heroes for Muscular Dystrophy UK.

Our house sale in January 2020 presented our family with an opportunity; to take a break, press reset and for me to finally look for a dream job to replace the one I had to give up all those years ago. My wife said I should be fundraising full-time and the goal was set; to find a fundraising job either helping a children's charity or a mental health charity. Psychologically I was ready to give this my all, because realistically I would only be working for another 10 years due to the deterioration of my muscles. With a massive desire and hunger to help others, I set about updating my CV, which looked a lot like what you're reading now!

However, fate had one more bad hand to deal, but this time it didn’t just affect me, it put the whole world on hold. On the 23rd March 2020 the UK went into lockdown due to the pandemic. I had no idea what the next 12 months would bring as I was petrified of COVID-19. My immune system is already under lots of pressure, it is working overtime to help my body and having to fight this indiscriminate and totally unknown new virus filled me with fear and made me feel exposed and vulnerable. With the jobs market thrown into chaos by furloughs and redundancies, my plans had been scuppered. Shielding and anxious, I started to apply for any jobs I could find, but everything was up in the air. I didn’t know what the future held, but I also knew my immediate future involved facing up to a stark reality I could no longer push to the back of my mind. 

With a muscle-wasting disease, if you don't use your muscles then you lose your muscles, and during the first stages of the pandemic when I was holed up inside, I discovered this myself with sadness and resignation. During 2020 I finally lost the ability to walk. My legs were exhausted and they irreversibly conceded defeat, saying 'so sorry, we've had enough pal'. And it's fine, we've been on some amazing adventures together with some beautiful family and friends. But at the same time I felt like I was fading away, stuck permanently indoors wrestling with nagging feelings that I was letting my family down, I was the person I never wanted to be, I felt hopeless and yet blameless.

One thing the last year has taught me, however, is that friendship and solidarity is critical for us all to function and survive. Luckily, during this period of solitude, uncertainty and overwhelming physical change, I was comforted by so many messages of support from all over the place. We even received a couple of food hampers from people when we missed shopping delivery slots. So many people, often strangers, wanted to help because they realised that charities were experiencing sudden and unforeseen funding gaps, and the humanity and generosity we have seen and experienced over this period has been incredible.

We had to cancel a star-studded comedy night; our biggest and most high profile fundraising event yet, but we tried to escape the isolation and helplessness of COVID by virtually fundraising. I even ended up on SKY ONE with Jon Richardson and Russell Howard explaining what lockdown was like from a disabled person’s perspective and once again, as a team, we went on to raise over £25,000 doing lots of increasingly daft physical challenges without leaving the house.

In 2021 I carried on with the job hunt, but in February I got an end-of-the-month report from a job site stating I had applied for 76 jobs and made no progress with any of my applications; none whatsoever. It was utterly soul-destroying; the futility of it all laid out in black and white. Furthermore, I looked at some statistics which showed that disabled people are 29% less likely to be in employment than non-disabled people. That was a statistic I didn't want to be part of. Also, disabled people have to apply for 60% more jobs than non-disabled people before finding one. I was very much at the sharp end of experiencing this level of hopelessness and being shunned by society. I was one of these statistics.

After a whole year of insecurity, anxiety, dead-ends and despair, on Friday 5th March 2021 I woke up to the usual barrage of emails from job sites with their latest jobs to apply for. But this time there was one on the Charity Jobs website - Regional Corporate New Business Officer at Muscular Dystrophy UK - that really caught my eye and I swear, the clouds parted and the sun came out right there and then. I immediately applied and got an interview for the position on the 24th March. I had plenty of time to prepare but I was nervous, this was the perfect position for me. Maybe I’d been kidding myself in some of those fruitless 76 applications previously, but this time it really was the perfect job.

You’ve probably guessed by the title of this article but...   I GOT THE JOB!!! I’m back in the game, back in control and back making a difference.

So remember when I asked you to spare me the time to start changing lives like mine did? I want to thank you for that, but I don’t want to stop there. If this journey I’ve been on has taught me anything, it’s that, together, we can move impossible miles, climb mountains and give hope to those who have none. I’ve learnt that many people making a small contribution can deliver real change and that out of the time it took me to receive a diagnosis and you to read this, we can make a real difference in the battle to deliver a more positive outlook for those facing the diagnosis in the future. That action delivers hope if you set about making a difference.

All my life I wanted to fix things. And now I have the potential to find a treatment or cure for my very own condition, and if that's not trying to help yourself in life then I don't know what is!

Now I need your action to join me in helping others. Could MDUK be your company’s charity of the year, would you like to form a wonderful partnership? Do you have a corporate social responsibility manager and/or a Human Resources manager that I could meet and have a coffee with? Or are you indeed that person reading this right now?

You can join me and everyone else in making a world of difference to many people like myself, because our muscles matter. Get in touch and we can discuss everything from walking miles to moving mountains, but importantly we can talk about giving people hope.

Please do not hesitate to get in touch for an initial informal chat or email, my details are m.hywood@musculardystrophyuk.org and mobile 07899917868

#MusclesMatter