Personal Health Budgets

Hello, (as many of you know) I’m Vivek Gohil, 27 years old living with Duchenne Muscular Dystrophy and Haemophilia but I am still leading a full active life. This post is a quick overview of my past/current care package and how receiving Personal Health Budgets has improved my life. 

Throughout college and university, I received care via various care agencies to help me with personal and social care. This situation was adequately fulfilling my needs during that phase of life. Things really changed with my care after I ended up in hospital with Pneumonia, I needed a PEG feeding tube operation, so my carers required more medical skills training.

As of 2013, I received full care funding from the East Leicestershire & Rutland CCGs since my requirements were becoming more complex. Since 2014 my condition has progressed considerably, as I require CPAP ventilation throughout the night and 5 hours in the day. I need help with every task in the day, like setting up my computer with assistive technology so I can still stay connected to friends and involved with various charities. I am very passionate about understanding my disease, so I can be responsible for my health. Working together with charities like Muscular Dystrophy UK, DMD Pathfinders and Action Duchenne has given me the confidence and opportunity to voice my concerns about the care provided by the NHS.    

About 3 years ago I started to become frustrated with how care agencies provided my care. I was continually training new carers which was making me and my Mum tired. My life revolved around the times the care agency was able to provide my care. This organization of my care needs didn’t work for me any longer as I didn’t feel in control of my daily life. 

Mariyam Sidik suggested that I would be a good candidate to apply for Personal Health Budgets, which would allow me to be in control of my own care so more personalised to my lifestyle. I was successful and received the Personal Health Budget, however I was a little nervous with finding my own carers and becoming an employer. I decided to use Mosaic to look after the funding, payroll, recruiting and training of my Personal Assistants (PAs). 

During the 3 years there have been many tricky situations to overcome but those experiences have taught me important lessons about confidence and moving forward positively. It has been a steep learning curve but a good one as now I can articulate my needs effectively which has made me more independent and assertive. This has enabled me to finally take control of my life. 

Recently I took my PAs to attend conferences in London and Birmingham staying in a hotel over 2 nights. Personal Health Budgets has given me the freedom to live my life without worrying about care. I’m very grateful for the ongoing support and encouragement I received from Mariyam Sidik, as I now lead a fulfilling and busy life supporting others with a Muscle-wasting condition. I am very passionate about understanding my disease, so I can be responsible for my health. Working together with various charities like Muscular Dystrophy UK, DMD Pathfinders and Action Duchenne has given me the confidence and opportunity to voice my concerns about the care provided by the NHS.    

I don’t want to say that Personal Health Budgets is the perfect solution to receiving care or plain sailing as you must manage everything however PHBs ideally works for me and I would not look back. 

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Press Start on Gaming Accessibility

The gaming industry has finally realising that making gaming accessible to every type of gamer is a vital component of any hardware or game. This is good news for disabled gamers however, as accessibility is in its infancy there is huge scope for improvement. The most important part of making a difference is changing industry thinking so dialogue between disabled gamers and the industry can ultimately improve the game experience for everybody. Just answer this question: Do you really want to lose $$$ and alienate gamers due to inaccessibility?

The XboxOne has the Co-pilot feature, which combines the input from 2 controllers to become 1 input so that 2 people can play as one. Co-pilot would really help me during gaming, as I always have a carer around so it would make it easier for me to direct them rather them having to reposition my arm after a button is pressed.

Microsoft seem to have more commitment to accessible gaming (compared to Sony) as they recently announced at #G4E Gaming & Disability Community Leads Tara Voelker (@LadieAuPair) & Brannon Zahand (@BrannonZ).

Gaming accessibility features that are innovative and Inclusive like co-pilot shouldn’t be console exclusive but a standard accessibility option across the board. In monetary terms, I am sure you’ll earn more $$$ from gamers with disabilities or parents who want to introduce their young child to gaming.

To see what is happening in the gaming industry regarding gaming accessibility The Develop Conference in Brighton on the 11-13 July is the right place. The heavyweights in the gaming industry Bryce Johnson (Xbox), Henry Hoffman (Fiddlesticks), Ian Hamilton (Accessibility Specialist) & Mark Friend (Sony) are on the panel speaking about current accessibility and discuss future practices from developer level though to broader industry initiatives.


Press Start!

How many Questions? 20 Questions

Okay today I’m (finally) answering Carrie’s 20 Questions! Click here to visit her wonderful website Life On The Slow Lane!

1. Morning or evening person?
I’m a morning person, I’ve always liked to start my day early as I have the most energy.

2. Night in or night out?
Night in or night out depending on which friend I’m with.

3. Lots of friends or a few close friends?
A few close friends, I like meaningful friendships with longevity. Besides, it’s time consuming! Haha.

4. Time to yourself or time spent with others?
I enjoy time to myself, as a child I’ve always been able to entertain myself. I relax by reading comic books or gaming so I like the quiet. However, I do enjoy spending time talking to people & having fun.

5. Holiday at home or abroad?
I’m more of a day-out person so I prefer organising activities.

6. Countryside, seaside or city?
Countryside! I know this sounds childish but I love driving past farmland

7. Hot climate or cold climate?
Neither, they both have their downfalls for me.

8. Books or films?
I’m a big reader, I always have a novel or comic on the go. I do watch series like Game of Thrones but I’m very picky on what to watch as it is a huge time commitment. That’s why I watch 22 minute cartoons like Samurai Jack or Star Wars Rebels.

9. Rice or pasta?
Pasta.

10. Tea or coffee or..?
Coffee, I need a cup every morning!

11. Cook, takeaway or eat out?
Option 4: None as I don’t eat meals!

12. Formal or casual?
Smart-Casual.

13. Dogs or cats?
Dogs.

14. Play it safe or be daring?
I am an adventurous person but I do understand my limits, it’s all about balance for me. Everybody is daring in some capacity.

15. Idealist or realist?
Realist, but idealism is such a great personal motivator. Without idealism Martin Luther King or Nelson Mandela would not have had the power to change the ‘real’ world. Idealism is from the heart and Realism is from your mind, we need to join the two.

16. Lead or follow?
I have never really been a follower but I used to find it difficult to direct people. However through maturity I’ve learnt that being confidence in yourself and your needs makes it easier to create the life that you want.

17. Work or play?
Play.

18. Lennon or McCartney?
Lennon only due to the song Imagine.

19. Love or money?
Love, no doubt. Money is ultimately a man-made creation but love is priceless. Money is useful though, without it I wouldn’t have a wheelchair so thank you man-made creation!

20. Share your problems or keep them to yourself?

As a child I have always shared my problems with my Mum but I’m now slowly opening up to a few friends. Throughout my life Ive had long periods of being stuck in bed for months so I had plenty of time to work out my anger issues. That’s the reason I may appear a calm person.


I hope you enjoyed this post. Let me know what you think.

The Future is ThisAbility

Yesterday, I (virtually) attended the first meeting of ThisAbility network in the creative industry, which was held at the D&AD studio in London.

ThisAbility (@ThisAbilityClub) is the invention of my good friend Sulaiman Khan @Kinectricity. Its purpose is to support #creatives who happen to have a disability, foster collaborations between influential people & importantly celebrate creative thinking.

It was great having the CEO of D&AD Tim Lindsay opening the session whilst supporting ThisAbility filling that niche of untapped potential in the Creative industry.

We had a large attendance of people like Michael McGrath (@MichaelMc_Grath) Founder of @MuscleWarrior, Caroline Pay & Mike Alhadeff from Grey, Laura Jordan-Bambach from Mr President and many other creative individuals that hopefully brings collaboration. A special thank you to Nadya Powell from Innovation Social (@NadsBads) for organising the virtual meeting without a hitch.

We discussed what the mission statement of ThisAbility should be:

  • Inclusivity rather than diversity
  • Change thinking practices as a community
  • Persistence in the future

Clarity of purpose is important to ThisAbility, Michael McGrath succinctly put it “Let’s not boil the ocean”. Membership should not exclude any disability so it needs to be pan-disability.

When visiting Sulaiman last week, he mentioning Neuroplasticity: The brain’s ability to reorganise itself by forming new neural connections throughout life. That caused me to think of ThisAbility as a macro-neurone organizing the Creative Sector to form new connections with talented disabled creatives.

#Creativity #Inclusivity #Innovation is the #Future – ThisAbility is the #Route

E3 2017 – Disability Inclusion

PLEASE NOTE: I did not attend E3 2017 & all opinions are my own

The gaming industry recently had one of its biggest conferences: E3 2017. This year was full of positive surprises, new VR technology, disappointments & mind-blowing unveilings.

super-mario-odyssey

Nintendo unveiled the fantastic Mario Odyssey on the new console Nintendo Switch. Nintendo brought back the innovation it is known for whilst valuing the nostalgia of older gamers. Inclusivity is at the heart of Mario, as it allows free-form play, hidden secrets, interesting gameplay mechanics. The new character Cappy (Mario’s hat) enables you to transform into nearly anything in the game world by throwing him at it, thus subverting the idea of fighting enemies that we all grew up jumping on.

spiderman-screen-02-ps4-eu-14jun16

PlayStation presented incredible gameplay of Insomniac’s new Spiderman game. It has brought back the freedom of swinging around New York as a superhero webbing up the bad guys. The game has an original story so thankfully it will have a huge storytelling scope as it is not tied to MARVEL’s Spiderman: Homecoming.

the-lost-legacy-feat

Uncharted: the Lost Legacy was disappointing even though Naughty Dog chose diverse female protagonists Chloe Frazer and Nadine Wood. Yes, the story will be interesting as Chloe is after the mythological Tusk of Ganesh however; the gameplay lacks innovation. I love the Uncharted series but it is time to say goodbye.

I have campaigned for better disability representation in video games, especially in regards to playable disabled characters. I was expecting that this would occur in a narrative game, something like Life is Strange: Before the Storm or A Way Out or a VR game.

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Unbelievably the new game Wolfenstein 2: the New Colossus a First-person shooter (FPS) in which you usually play as a Superhuman shrugging off bullets. However, in the first level the protagonist injured in the previous game B.J Blazkowicz needs to use a wheelchair to escape. He moves slowly, it takes him longer to put up his gun on his lap, uses conveyer belts to navigate obstacles or stairs.

Of course B.J Blazkowicz ultimately gains an exoskeleton, which inevitably gives him the ability to walk & become superhuman, this fits the negative SuperCrip stereotype of disability. However starting a level through the perspective of a disabled person in a wheelchair makes disability less of a plot device so through gameplay the player forms a deeper connection to disability.

As a disabled gamer I welcome more inclusivity and diversity in every part of the gaming industry!

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.

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…