Vivek Entering the Matrix

Hello readers. I’m inviting you on a journey into the uncanny mind of Vivek, do you really want to uncover what lurks there?

Human beings are inherently social creatures so our society has a mass consciousness, with increased connectivity global media can tap into the current zeitgeist. Certain themes are represented in recent movies, TV, video games, literary media such as: zombies, magic, superheroes, post apocalyptic, time travel, technology or artificial intelligence (AI).

Watching The Matrix trilogy again through adult eyes, has further opened my mind to questions about complex philosophical subjects like reality, society, technology, robots, nature + life. I’ve always been an existential thinker; maybe that has been one of my coping mechanisms along with humour. Why do humans exist? Freedom? Peace? War? Death? Love? Just to exist? Personally, I think that there are only 2 choices available to us, either to live happily (the blue pill) or bitterly (the red pill). I’m not one of those ridiculous people who think that positivity is easy; as a child I found it difficult to live happily with my DMD, sometimes I still do.


“Why keep fighting… Is it freedom? Or truth? Perhaps peace? Could it be for love? Illusions… Temporary constructs of a feeble human intellect trying desperately to justify an existence that is without meaning or purpose… It’s pointless to keep fighting. Why do you persist?” – Agent Smith “Because I choose to.” – Neo

Reality, is it real? Is it a construction in our minds? The Matrix proposes that reality is basically a computer program. The Matrix can be used to understand disability, having issues with my self esteem & confidence has created a false world blinding me to reach my fullest potential so to live happier I release my fear or shame. “The Matrix is the world that has been pulled over your eyes to blind you from the truth.” I’m not going to suggest that if you change your mindset then your physical world will change but if you consider certain problems you face as challenges then you can be pragmatic and try to find solutions. At the core The Matrix is about life, understanding what makes us human and how best to cope with our human limitations. Living with DMD has pushed me towards being adaptive, creative and organized, it’s vital for me to use available technology to function at my fullest potential.

“I know that you’re afraid of change. I don’t know the future… I came here… to show these people what you don’t want them to see. I’m going to show them a world without rules and controls, without borders or boundaries.” – Neo

main_vr_imageNew technology such as Virtual Reality (VR) or Augmented Reality (AR), is blurring the lines between the real or a manufactured reality, personally I feel it is suggesting that maybe “normal” reality is becoming somewhat boring to us. Take the Pokemon Go phenomena, millions of people decided to actually venture outside to catch a fake creature but those people may not bother to search outside again to find a real animal like (lets say) a squirrel. Some of the funny news stories where people fell into a lake whilst playing Pokemon Go clearly demonstrates how quickly AR can alter our perceptions of reality. At that time which reality is considered the real one, the one on your screen or the one outside it

Technology, robotics and computers are made to aid or improve our lives, electric wheelchairs; artificial limbs and ventilators have really improved the lives of disabled people. However, the idea of driverless cars seems like we could become lazy, stupid or stagnant. The ironic aspect is that even with constantly upgraded technology has a lack of significant choices available for example Apple & Android phones have basically the same functions.


In the real world humanity has done terrible things to nature; many animal species are going extinct from poaching or like the Chinese river dolphin from China’s industrial expansion. We need to work with nature, BBC’s Planet Earth II showcases nature in all its glory. Nature and animals help us to survive so the important role humanity plays is in protecting the planet for the future.

Science fiction about alien life allows us to question our creator about why we exist (Prometheus) and the fear of being replaced by something superior (Aliens), which stems from our innate biological instinct. Secondly our worry of being invaded in “our” territory makes us react arrogantly with war (Independence Day: Resurgence) rather then co-existing with something different. However there have been movies about how to communicate with new life (ET, Arrival) or live with them (District 9). Earth doesn’t belong to humans we only live here.


Artificial intelligence is another major theme in the media, with similar issues raised by the alien subject about humanity, how can we co-exist or trust AI? For example, look at C4’s Humans, Mr Robot, the movies Ex Machina or Avengers: Age of Ultron. Our fear is due to the lack of emotional connections you can make with AI because emotions help us interact with each other by allowing us to gather unspoken information.

The current trend in movies and videogames is nature reclaiming itself (The Last of Us), nature fighting back against man (War for the Planet of the Apes, Kong: Skull Island, Godzilla) or post-apocalyptic Earth (Mad Max: Fury Road, The 100). The new PS4 game Horizon: Zero Dawn based on a post-apocalyptic Earth, where humans are back to tribal civilization and robots have become animalistic. This synergy between robots merging with nature is the perfect end-point but we need to still keep our individuality. This post-apocalyptic trend parallels with the current global climate, with wars that could end in nuclear winter (Fallout 4), Donald Trump’s trajectory of America or Brexit.


Science fiction is beneficial in suggesting imaginary technological future advances take Star Trek for example using supposedly future technology iPad like devices, which are now real! The Matrix & The Terminator films illustrate how humanity relied too heavily on robots and lost awareness of their skills, so they slowly turned robotic too. The futurologists hypothesise that with the dawn of true AI will bring about a singularity where humanity becomes more non-biological and begin to transcend our limitations (Deus Ex: Mankind Divided). Transcendence, Her & Ex Machina are recent movies that attempt to present “plausible” near-future scenarios that are intended to strike the audience as not just possible, but highly probable.


Analysing robotics, hacking or computers you notice parallels with nature, Watch Dogs 2 about hacking culture demonstrates how the fear of the unknown like viruses and the need of our privacy can trigger our innate fight or flight tendencies even in the digital world. It brings up questions on how VR creates biological responses making our perceptions easily fooled. Could a Matrix like reality be a future technological possibility?


Finally I want to end with zombies, superheroes and time travel. Zombies could be a symbol of brainless commercialism or capitalism and also the fear of the fragility of human society. The reason that superheroes are popular is because they offer an escape into an altruistic moral universe, where the public can take charge of there own protection rather than relying upon corrupt police, greedy politicians or huge corporations. I feel that time travel (Quantum Break, 12 Monkeys) is related to regret, wanting to reverse some kind of damage, maybe prevention of a future where humans are at war with robots (the Terminator, Mass Effect) or lack of environmental resources (The 100, The Expanse, Wall-E).

Thank you for joining me on the journey!


The Action Duchenne Conference 2016

This was my first year attending the Action Duchenne Conference 2016 at the London Hilton Metropole Hotel, which was held in conjunction with the user-led charity DMD Pathfinders founded by Jon Hastie and Mark Chapman.

The Action Duchenne Conference was a empowering experience, Duchenne is such a rare disease but with 20 people with the condition in the room I felt part of a huge family with a collective interest. Through DMD Pathfinders it also managed to bridge the large divide between the parents of newly diagnosed, teenagers and adults living with DMD. Adults living with DMD are typically overlooked due to the prominence of genetic or drug research to find a cure or medication. This concern is particularly important now that medical advances have increased our lifespans, however our quality-of-life has to match up.


Angela Stringer organized all hotel rooms, hoist rentals, electric bed rentals for everybody. The medium sized rooms in the Hilton were accessible along with the bathrooms, usually hotels don’t provide enough plug sockets but this room did. The gala dinner on Friday night was fantastic especially meeting the new Action Duchenne patron Harry Hill (although it was difficult to take him seriously).


In my opinion, Jon Hastie & Mark Chapman are the leaders of Duchenne, they have so much knowledge about living fulfilled lives and have shared their experiences to encourage younger generations to fulfill their dreams or goals. I was speaking to Jon Hastie about how meeting Mark Chapman inspired him to live independently, the funny part is that Jon inspired me to stop limiting myself and take back control of my future.

DMD Pathfinders’ workshops explored how ventilation and nutrition is a vital but an unexplored part of DMD care, when swallowing becomes difficult how do you maintain a balanced nutritious diet. Both ventilation and nutrition work together to provide us with the energy to live our lives. Jon Hastie emphasised how necessary it is to take responsibility of your DMD, to understand your body and realise that you are the true professional. The workshop about employing carers that are not your parents was useful, it made me realise that carers are essential to give my Mum a break and create a backup plan for all future possibilities. What I liked was that Jon said that you don’t need to do it all at once as they are big decisions to make.

img_0419This conference gave me a chance to meet my friend Peter Duffy from the Muscle Owl and the CEO of Limitless Travel Angus Drummond and his wife Lucy. Limitless Travel aims to remove the hassle and stress for disabled people when planning a holiday. Joining them has motivated me to improve my skills on social media and to regularly blog. In February, I’m hopefully on a apprenticeship for where I can educate myself on the business side of the company. Limitless Travel has shown me that holidays are possible without having to plan everything. I tried my best to network for them so hopefully I managed to spread enough awareness. One new friend Ronak was speaking to Angus about attending Gamescom 2017 in Cologne, Germany, which I’d definitely join him on!


Leaving the conference has left me a profound feeling that Jon and Mark have removed the limitations I placed on myself, creating those future opportunities I never imagined were possible like employment or relationships. This is truly why DMD Pathfinders was formed to provide peer support and empowerment. Thank you DMD Pathfinders & Action Duchenne.

Vivek’s Favourite Accessibility Tools for Mac

In the 21st century having access to a computer enables you to learn such a fundamental life skill but degenerative conditions like DMD increasingly restrict usage.

It was very frustrating when I discovered that I could not use a mouse or keyboard as efficiently as I previously could. I have limited hand/finger movement so moving or swiping on a Trackpad is problematic especially when also typing on a keyboard.

Since using an Apple MacBook I’ve unearthed a few useful apps or inbuilt features to make life easier. Below are the 3 accessibility tools for Mac that I couldn’t live without!

  • BetterTouchTool:

BTT allowed me to adapt Trackpad or Keyboard gestures to work around my limited finger movements of 2 finger swipes or taps. It also comes with advanced multiple window-snapping, alternate window dragging functions & remote control via the BTT Remote app. Since downloading BTT I’ve realized that many of the limitations I thought were due to DMD were actually accessibility related.

  • On-Screen Keyboard:

Over the years as typing becomes increasingly challenging adapting to changes is crucial. I now type using the inbuilt MacOS On-Screen Keyboard and a modified chopstick (stolen from Wagamamas) to reach certain keys. The only small drawback is that it blocks screen space.

  • Mac Dictation:

Dictation enables my fingers to keep up with the speed of my thought processes; I usually forget my idea after expending energy just typing a few words. It has improved my blogging capabilities & social media communication so now I don’t have to deliberately limit my word count. I’ve previously used Dragon Dictate but it could not recognize my voice when I wear my ventilator, which is vital to allow me to speak for a long time. The inbuilt MacDictation function is far superior, more user-friendly and the microphone picks up every word.

Accessibility features on computers & mobile phones have significantly evolved so the cyber future will definitely improve for disabled people.