The SuperCrip Trap

The SuperCrip disability stereotype has recently appeared again in the game The Surge so I thought I should dissect the issue.

The Surge takes place in a future wrecked by climate change, a company called CREO is working to improve the atmosphere and meld humans with machines. The protagonist Warren is a wheelchair user and is recruited into CREO eager to walk again through CREO’s exo-suit device.

That is the only mention of Warren’s disability in the story, suggesting it was a plot device to quickly elicit emotional investment using incorrect disabled stereotypes. Also, not every disabled person is looking for a ‘fix’ or ‘cure’, it is surprising but we can actually live happy lives.

So, now Warren is the epitome of a SuperCrip, a superhuman with an extra super, better than the average person but still different. If you remove the disability part of The Surge’s story then you have a similar plot to Neill Blomkamp’s movie Elysium, only with a much better reason to warrant an exo-suit.

There are games such as Deus Ex that also fall into the SuperCrip trap however the theme is primarily focused on Transhumanism. The belief that the human race (Adam Jensen) can evolve beyond its current physical and mental limitations through technology.

The movie Mad Max: Fury Road presented a nuanced disabled character Furiosa (Charlize Theron); she has a prosthetic left forearm but it never phased her. Furiosa flipped the damsel-in-distress trope, protecting herself and as she seemed more integral to the plot than Max. For example, Furiosa hits Max with her stump & later on uses Max’s shoulder to stabilize her gun barrel, as an alternative to using two hands!

We need to create meaningful disability characters, no disability ‘fixing’ in the narrative, active members in combat, wheelchairs used & disability as part of a nuanced character.

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Evolving the ‘Disabled’ Character

Since the Netflix or Amazon Prime world domination, we now have an endless stream of watchable content available to us. The era of the box set is upon us, as there’s more time to build deeper storylines & form multi-dimensional characters that is difficult to accomplish in a short movie timeframe.

Television has an important influence on society so where are the disabled characters with meaningful roles rather than the tired old stereotypes? Even in a fictional universe, disabled people seem marginalized.

Disabled characters are usually portrayed as:

  • Comic Relief – Sheldon (The Big Bang Theory) or Stevie (Malcolm In The Middle)
  • Evil – Norman Bates (Bates Motel) or Dexter
  • Needing Protection or Boring – Felicity Smoak (Arrow) or Artie (Glee)

These stereotypes hinder awareness by creating incorrect myths regarding regular disabled people and how ‘we’ live. The solution is quite simple we need more opportunities for disabled directors, producers, scriptwriters or actors to create Christopher Nolan levels of gritty, realism.

The TV shows I’ve mentioned above all have cast non-disabled actors to play disabled characters; I wouldn’t mind this occurring if there was progress towards hiring more actors with disabilities. It would give the TV/Movie world a new inclusive perspective, to reinvigorate us from the current reboot, sequel, prequel, spin-off and franchise story stagnation.

However, Breaking Bad was the first show I’ve seen that actually hired an actor with Cerebral Palsy (RJ Mitte) to play a character with Cerebral Palsy who still lived life like his able-bodied peers. Thank you, Vince Gilligan!

To create a multi-dimensional disabled character, show the human side we all share. We all have ups and downs and disability doesn’t mean that your life is terrible 24/7. Craft a rounded character, with memories, motives, interests and skills that are unique. A characters’ disability should not be their only focus but a part of them. I envision a ‘New Girl’ type series with a Jess who happens to be in a wheelchair and lives a regular life

Finally, we need characters portraying a wide range of physical or mental disabilities instead of the usual paralysis. Not all disability is due to a tragic world-changing accident or in need of showing pre-disability life just for emotional responses from viewers.

I will be exploring this topic in the future so To Be Continued…

MARVEL vs. Diversity

I’ve always been a fan of comic books; my teenage years were spent absorbing X-men, Spiderman, Hulk, Star Wars or (DC) Batman. I used them to escape thinking about my Duchenne and find a happier sanctuary.

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Comics taught me about humanity, that being a superhero doesn’t mean, swinging on webs, throwing a shield or making the “snikt” sound but its the willpower to be altruistic even when you should give up or if you are part of a persecuted minority.

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Those MARVEL stories helped shape my personality, morals & imagination. However, most of the comic characters created were Caucasian heterosexual males and sales were relating to that same demographic.

The past few years MARVEL have created more diversity with these new characters:

  • HULK “Amadeus Cho” Korean-American
  • Female THOR “Jane Foster”
  • CAPTAIN MARVEL “Carol Danvers” written by Kelly Deconnick
  • CAPTAIN AMERICA “Sam Wilson” African-American
  • MS MARVEL “Kamala Khan” Muslim
  • SPIDERMAN “Miles Morales” Mixed Race
  • ICEMAN “Bobby Drake” Gay

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Introducing new characters was a great step for diversity inclusivity for MARVEL however many fans disliked the changes to Core characters MARVEL have made. Marvel’s upcoming initiative Generations is a way to set people’s minds at ease that the core characters will continue. Nevertheless, this has coincided with MARVEL’s drop in sales.

Recently MARVEL’s Senior Sales and Marketing Manager David Gabriel told industry website ICv2 that readers are “turning their noses up” at diversity and don’t “want female characters”. This statement is quite shocking, especially when the current climate is about inclusion and diversity. However, according to David MARVEL is all “about telling stories about the world. We are looking to tell stories that matter in this time. That’s the most important thing.”

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Should diversity be a higher priority then storytelling? No, I like reading interesting stories and nuanced characterisation with just a natural amount of diversity that is not forced or patronising. Nevertheless, blaming the decreased sales figure solely on “too much” diversity is ridiculous. Event fatigue is a big factor, constantly changing characters, forcing people to buy different comics to get the full story.

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I want to finish by highlighting the complete lack of representation of disability in either MARVEL now that Charles Xavier is dead (other than Daredevil) or DC universes. It would have been amazing growing up to see disability on the page of a favourite comic book where amazing things can happen. It would be like a confirmation from a superhero.

The Comic industry needs to realise how powerful the written word and artwork is to the younger generation.

“With great power comes great responsibility”.

Exploration: Holiday (Part 1)

The holiday season is now upon us. The next step is to pick a destination, but where? Living with a disability like Duchenne does make this choice more difficult, so you need to be either creative or realistic. It’s Holiday week for DMD Pathfinders so please share your holiday experiences or future plans with us here.

My last holiday was 12 years ago to Portugal it was a fantastic trip. I travelled via Monarch airlines, it was the first time I had to take my electric wheelchair & couldn’t stand to either swivel or transfer to a seat. It was a difficult process with a few issues, which are common themes with many disabled travellers:

  • I was the last person to be boarded so other passengers were watching me through the whole awkward transfer process.
  • I had to be handled with extra care as I have Haemophilia so I couldn’t be twisted roughly. There was also no room for my Mum to stand in order to lift/slide me.
  • The seats reserved for disabled passengers did not have movable armrests so transferring to the window seat was impossible, however regular seats did.
  • Passengers behind me had to swap seats, which was embarrassing & stressful.
  • When receiving my wheelchair at Portugal, I discovered that my important leg & chest supports had been loosened during storage.

 

The villa I stayed at was very disabled friendly, big rooms and a mobile hoist. The landlord was great because he had the right tools to fix my loosened supports & made me a birthday cake.

The trip was an amazing experience as I got to swim with Dolphins for over an hour & had a special tour of the Marine Park. Having to put on a wet suit whilst sitting in a wheelchair was interestingly difficult. Thanks to my wheelchair recline function!

This experience did completely put me off flying anywhere, especially now that I have respiratory issues, require a ventilator or can’t sit unsupported. Since then I never considered travelling, it all seemed daunting to find & plan wheelchair accessible holidays alone without prior knowledge.

After working with the organisation Limitless Travel, I started to feel more confident that there are holiday options still open to me. Limitless Travel aim to remove the stress of disability travel by organizing everything from your Accommodations, Transport, Attractions, Tours, Package or Bespoke Holidays in the UK or Europe.

“I never thought that it would be possible for me to travel but now with relevant information and support from Limitless Travel, it can be.” – Vivek’s testimonial

I’m now booking a family holiday to Barcelona in July (20-24th); I’ll begin my travels using the Eurostar from St Pancras station to Paris Gare de Nord to Paris Gare du Lyon & finally to Barcelona.

I’ll keep a diary of the wonderful process…

DMD Pathfinders Accessible Gaming Webinar

On Saturday 25th February, DMD Pathfinders launched their first webinar series on accessible gaming; this is the story about perfect teamwork, facing challenges together & learning new skills.

DMD Pathfinders (created by Dr Jon Hastie & Mark Chapman) are making monumental steps in highlighting issues relevant to adults living with DMD, as it is user-led. Finally, it’s also the right medium to spread awareness through action by sharing future possibilities to the next DMD generation.

We created the webinar using the software Webinarjam, none of us had knowledge of the software so Nick Catlin from Decipha showed us the ropes. The technology looked promising allowing viewer interactivity as well as informative for us through chat, polls & offers.Our accessible gaming video content was brilliant, everybody had useful input: Me, Jon & Saul Catlin made videos focusing on different areas in gaming. Saul made a great piece showcasing the young DMD talent with ambitions in game development, studying a software development BTEC at college & providing useful tips in starting down the road of game design. Saul was such an inspiration showcasing how positive the future will be for DMD Pathfinders with people like Saul.

Jon & I collaborated using my old Blog post on accessible Gaming as the presentation I designed on accessible gaming however I’m not a PC Gamer like Jon so he added PC gaming information. We both created videos explaining our varying experiences with gaming and solutions we found. It was also a chance to spread awareness that there is help out there from charities like ReMap, Special Effect & AbleGamers if you are facing restrictions on gaming due to mobility issues. DMD Pathfinders is set up for this exact reason to share useful information, which at times seems hidden, gaming accessibility should be widely known as a majority of gamers have a disability.screenshot_2017-02-27-16-48-26_bibmgt

I won’t lie to you that having to film a section was daunting for me, I was worried about my breathing difficulties after speaking for long stretches or running out of useful things to say. However, I somehow managed t0 speak for 15mins, mind you with long pauses between breaths due to speaking wearing my ventilator.

Jon edited  & split the videos into smaller chunks. He did a brilliant job in such short notice. Daniel Baker was our lovely tech director, the important guy in background, battling with the technical quirks. The Webinarjam test on Friday was stressful as we had various of tech issues, mostly audio/webcam issues, crashes & login problems. (I think I unknowingly logged into Daniel’s Webinarjam account). The software seemed unintuitive, fiddly when needing to alter settings and had an unreliable video connection.screenshot_2017-02-27-16-56-53_q5kmj1

The Saturday LIVE webinar started brilliantly with no technical probs, it was running smoothly but halfway my audio failed, I couldn’t hear Jon so I was talking over him/repeating myself. Luckily, the viewers didn’t hear me only the team did because a scheduled video was playing. The viewers in the chat were great, we loved the support & appreciated the questions asked in the Live Q&A session afterwards. Funnily, because I couldn’t hear Jon, we both answered the question about if the Xbox Kinect could recognize facial movements. Mark was our moral support & webinar chat director.

We are going to contact Webinarjam’s technical support to see if they can address the issues we faced with video content stopping during our presentation (making pre-loaded webinars unreliable) otherwise we may have to ask for a refund.

In conclusion, DMD Pathfinders had an amazing Accessible Gaming Webinarjam pilot and our first real chance to see how we work together as a team on such a big project & we proved we had excellent teamwork. DMD Pathfinders have great leaders in Jon & Mark, thank you guys for your leadership.

ONWARDS and UPWARDS!

Backstage Pass: Duchenne Blogger

Welcome to a behind-the-scenes look at the difficulties of blogging or vlogging when you have Duchenne. Thanks to DMD Pathfinders, Muscle Owl & Limitless Travel for pushing me to reach my potential and more.

I’ve previously written  (Click Here) about the various accessibility tools I use when using my computer: a combination of an on-screen keyboard and dictation software help me type.

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Okay this will sound ridiculously obvious but a brain is essential when writing interesting blogs, however using it is closely linked to my energy levels & respiratory function. This means that I have limited time (between 12-5PM) to be 100% productive for writing or research, as I get easily tired.

I recognise that my best ideas and coherent thinking occur when I use my CPAP ventilator, getting rid of the carbon dioxide in my bloodstream completely refreshes my mind. Reason #2 why my ventilator is useful is when I start dictating because speaking for a long time is fatiguing. I could not live without dictation software but I find it difficult speaking extensively however the ventilator solves that problem. Previous versions of dictation software never could recognise my voice when I wore my ventilator because I sounded like two different people.

A strange problem occasionally occurs when I try to type my ideas down physically type sometimes I completely forget what point I was making. I think it is due to the energy expended specifically to move my fingers taking precedence over short-term memory. Or it could be that I’m getting older?

My recent Vlog was an interesting experiment as I thought I’d never be able to speak for about five minutes. I realised that I’ve only been out of practice; I just need to relax, speak slowly & learn when to take breaths.

Accessing my iPhone whilst using my computer used to be impossible until I bought the switch control and phone holder. Being able to access them at the same time it enables me to still feel connected to society. I use my iPhone as an Email, Messenger, WhatsApp alert that I answer through apps on the computer, which is a real time saver.

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You may be wondering why I sound more intelligent in the written word but I find it difficult to correctly articulate the (amazing? terrible?) ideas in my mind verbally. In the future, I’ll be able to conquer this difficulty.

This process goes into writing my blogs:


  • Research on the topic

  • Pick out relevant information from research to make a point
  • Bullet point similar ideas
  • Create a paragraph framework
  • Write every paragraph
  • Check reading Flow & Edit
  • Proof read
  • Edit & Add images
  • Finish

I’m going to end by sharing my blogging secret: Make sure your blog has Flow.

The only Constant in life is Change

DISCLAIMER: All views expressed are entirely my own & separate from DMD Pathfinders

Change. Could we call it the chance for ‘outside the box’ thinking, an experiment on growth or only chaos?

Change is constant; the only difference is in whether we judge it as positive or negative. I agree that current worldwide society trends may negatively affect the future. Disabled people are struggling to live full independent lives or even not having access to a disabled spot on a bus. Negative events are conducive to change by bringing the world together, challenging tyrants or corruption wherever it falls. We all need to voice our concerns and simply support each other, however cliché it sounds.

That is why pioneering user-led charities like DMD Pathfinders are conducive to changing attitudes around disability. Showcasing the valuable first-hand knowledge adults with DMD have in order to spread awareness that will improve lives for the next generation of adults with DMD.

Okay, enough with society as a whole. Let me highlight Jon Hastie’s Vlog chronicling his epic ‘mile a day’ fundraising effort for DMD Pathfinders a user-led charity run by some impressive adults with Duchenne. During his Day 5 journey video, he mentioned having to change his current (but now discontinued) ventilator mask to a new supposedly ‘better’ mask.

riddelldvbpI’m not speaking about Darth Vader masks!

Ventilator masks take a few months of adjustment time until you get used to it or move on. Little details are very important, mask straps causing pressure sores, limited sightline, needing a tight seal around nose and importantly do your glasses fit on comfortably. So having to change masks is never better but a few months of hell until you’ve adjusted. Standardised masks do not fit every head shape, size or skin type so it usually needs adapting with extra straps made of stretchy cotton.

fullsizeoutput_fdbUnforeseeable change occurs in every day life but the way you deal with it is important. In my opinion, I’ve learnt this lesson much faster because of Duchenne. Duchenne is inherently all about perceivably negative physical changes but that doesn’t limit positive mental changes.

Onwards & Upwards!