Heroes of CP: Nath Fernandes – Part 3/4 (Happiness)

This is the third of four parts of our interview with Nath Fernandez. Nath has severe Quadriplegic Cerebral Palsy (affecting both arms, and both legs) and associated communication difficulties. In this video Nath talks about where he finds peace and happiness in his life.

Nath has built 2 businesses (and since this interview has gone onto developing his third). His most recent project is Dynamically Awesome, a business providing ‘accessible for all’ teambuilding birthday parties to children aged 6-12.

Dynamically Awesome: http://dynamically-awesome.co.uk/

My stand out moments

  • Nath’s need for space “it gives me time to myself which I need every day. Otherwise you go a bit mad if you have 24/7 care”. This was an aspect of care that had never occurred to me, when Nath said it, it was like a lightbulb moment, of course, everybody needs space and it’s harder to find if you have full time care.

 

The transcript of the interview is as follows:

“For me going out for a walk every day and having that time to myself, just to reflect or whatever, it kind of makes me feel more refreshed when I go back into the house. That makes me happy, and I do mindfulness as well, and that sort of clears my mind, and those are the days when I’m content.

Travelling the world is one of the big things for me, and when I do that I feel like I’m able to just be me.

Even when I’m not traveling somewhere, every day I go out for an hour, even if it’s just around the block. I feel that I need that space to be myself because it’s a different kind of vibe when I’m on my own.

I think because I am kind of friends with all my PA’s on a professional level, but it’s a different kind or relationship, and actually it gives me time to myself which I need every day. Otherwise you go a bit mad if you have 24/7 care.”

Heroes of CP: Nath Fernandes – Part 2/4 (Disability)

It is an absolute pleasure to introduce you to Nath Fernandez, what an inspirational guy! Whilst dealing with severe Quadriplegic Cerebral Palsy which affects both arms, and both legs along with associated communication difficulties, Nath has built 2 businesses (and since this interview has gone onto developing his third). His most recent project is Dynamically Awesome, a business providing ‘accessible for all’ team building birthday parties to children aged 6-12.

Dynamically Awesome: http://dynamically-awesome.co.uk/

My stand out moments

  • Nath’s positive attitude towards challengeif I want to do something I will find a way of doing it, even though that isn’t simple” Nath isn’t concerned with the possibility of failures whilst trying to achieve something, he has the mindset of no matter how hard it is or what setbacks happen, he will reach his goals.
  • Nath’s drive for independence. Nath has severe mobility and communication problems, to the point where he has 11 PA’s who assist him in his everyday living, however he said about visiting us in Sheffield “I really don’t want to rely on my PA to drive up, so the obvious way was to get the train”, “it took about three hours… but I don’t mind that.”

 

The transcript of the interview is as follows:

“I need assistance with everyday living, for example: washing, cooking and cleaning, which is where my 11 PA’s come in. I guess the other aspect of Cerebral Palsy which is a problem for me is my speech difficulty. I think it has been one of the main barriers for me because when you have a speech difficulty I think society automatically thinks that you are mentally incapable by just that. I think if I could talk normally people would have a different reaction.

I like to think about myself as an outgoing person who will get on with anyone and everyone. I don’t give up very easily, if I want to do something I will find a way of doing it, even though that isn’t simple, but oh well.

I like to prove people wrong. I think society is set up in a way that is generalised, when you meet someone like me people will think, ‘oh yeah he can’t do that thing’ so I say ‘yeah I can so shut up, I’ll do it’.

Like coming up here today, I can’t drive up, and I really don’t want to rely on my PA to drive up, so the obvious way was to get the train, although it took about three hours, and I have that to look forward to, but I don’t mind that.”

Heroes of CP: Nath Fernandes – Part 1/4 (Business)

It is an absolute pleasure to introduce you to Nath Fernandez, what an inspirational guy! Whilst dealing with severe Quadriplegic Cerebral Palsy which affects both arms, and both legs along with associated communication difficulties, Nath has built 2 businesses (and since this interview has gone onto developing his third). His most recent project is Dynamically Awesome, a business providing ‘accessible for all’ team building birthday parties to children aged 6-12.

Dynamically Awesome: http://dynamically-awesome.co.uk/

 

My stand out moments

  • Nath’s approach to challenge and response to his condition, Nath clearly struggles with communication, and yet set up a successful business delivering workshops and talks. This would be a barrier to most people, but for Nath it doesn’t seem to register as a concern, instead all he sees is the impact he is having on the recipients of his work.
  • Nath’s drive for independence even though “I couldn’t get a job like my friends”.

 

The transcript of the interview is as follows:

“My name is Nath Fernandez, I’m 24 and I live in Bristol. I have a first class degree from the Uni in business enterprise and I’ve used that to propel myself into running two businesses, one of which is running disability awareness workshops up and down the country. I do this within schools and also give lectures.

The reason why I decided to go into business in general is because when I was a teenager I couldn’t get a job like my friends, so I was thinking of a way to make money without relying on the bank of mum and dad.

Whilst I was at uni in Bristol, one of my carers at the time was like, why don’t you use your disability as an advantage, and maybe do workshops and talks. So it was there I began, it took a lot of late nights and hard work, but we launched at the end of 2011 and since then I have travelled, doing workshops and lectures to thousands of people.

I did a workshop in Bridgend, at the end, I don’t know if it’s anything to do with the welsh culture, but then some girls from year 8 and 9 just came up and started hugging me for some reason, and that’s a prime example for me to say yay, I have made an impact on their lives.

You can follow me on twitter @VUEcan, or visit our website at veucan.co.uk, and on there you can read my life story, and about what we are trying to achieve with the business and what it is.”

An update from Nath about his new business:

Nath Fernandes (who has severe Cerebral Palsy) has since gone onto developing his third business, Dynamically Awesome providing teambuilding birthday parties to children aged 6-12. During these parties, children must work as a team to complete challenges including The Cube and The Labyrinth obtaining keys to unlock a treasure chest full of goodies! The concept stemmed from Nath’s daily experience working with his 12 PAs and the important role that teamwork plays in order to achieve his goals. When Nath was growing up, finding a suitable venue or activity became a challenge in itself; most of the time it was either bowling or the cinema followed by a meal. As a result, one of the aims that Nath set for Dynamically Awesome is to adapt these parties to be ‘accessible for all’ thus this summer he is working closely with a charity to trial some adapted challenges to ensure that participants have the most awesome time ever, after all, that’s what birthday parties are for!

Heroes of CP: Ellie Simpson – Part 3/3 (CP Teens UK)

This is the third and final installment of the interview we did with Ellie Simpson for our Heroes of CP video series. In this part of the interview Ellie focuses on what motivated her to set up CP Teens UK, how people have engaged and can engage with the organization, and how big the CP Teens UK community has become.

Click here for part 1 of Ellie’s interview ‘Road to RaceRunning’

Click here for part 2 of Ellie’s interview ‘Life, CP, and University’

My stand out moments

  • Ellie’s positive response to social isolation, setting up an organization that would solve her problem, and the problem of “thousands of teenagers up and down the UK”
  • Ellie’s proactive desire to reach more people, through tiny tots and “expanding our social events”
  • Ellie’s clear vision and direction for the future of CP Teens UK
  • The high value placed on community by CP Teens UK members “it’s a great great night, it’s a great social opportunity

Ellie is a duel CPISRA World Games gold medalist, and the founder of CP Teens UK, an increasingly successful non-profit organization helping teenagers & young people with Cerebral Palsy and similar disabilities.

CP Teens UK: http://www.cpteensuk.org/

2015 CPISRA World Games: http://www.cpsport.org/news/cpisra-world-games/

The transcript of Ellie’s interview is below

I run CP Teens UK, which is a charity for people, like myself, with cerebral palsy, or similar brain injuries. I set it up in my gap year when I left school because I felt really socially isolated. I left school and my friends just didn’t want to know me. So I thought well surely it’s not only me who feels like this, and it wasn’t. It was thousands of teenagers up and down the UK, and today CP Teens is massive. It’s just about to become a company and a charity.

Who are you most trying to reach at CP Teens?

Young people definitely. But it’s for anyone of any age really; who’s just feeling a bit out of it, a bit left out, not sure what to do, needs some guidance…

It’s for people with physical disabilities, but obviously the focus is on cerebral palsy, because that’s what I have and that’s where the idea came from.

If they go onto www.cpteensuk.org they’ll find lots of information, including contact information on how to get involved and we have loads of things in Sheffield going on like the RaceRunning club which is great fun.

We have a tiny tots club in Chesterfield on a Tuesday night and we are expanding our social events around the area.

We have a charity ball every year and we have a celebrity guest every year and it’s a great great night, it’s a great social opportunity, and it raises lots of money for the charity.

What was the last celebrity you had?

We had Sophie Christiansen, OBE and Paralympic Champion.

 

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If you would like to take part in a Heroes of CP interview and be featured on our blog, get in touch with us at hello@exyo.co.uk or in the comments section below.

Heroes of CP: Ellie Simpson – Part 2/3 (Life, CP, and University)

In this, the second part of our Heroes of CP interview with Ellie Simpson, (follow this link for the first part http://bit.ly/2aFj8gy)  Ellie talks about the way in which cerebral palsy affects her life, her fears leaving home and going to university, and how she approaches the challenges in her life.

What stood out to me about this part of the interview was:

  • Ellie’s ability to ask for help when she needs it
  • The strength and the confidence she draws from her community
  • Ellie’s willingness to try new things that are daunting, accepting failure as a reality of trying
  • Ellie’s grit and strength of character to continue trying until she finds a way

Ellie is a duel CPISRA World Games gold medalist, and the founder of CP Teens UK, an increasingly successful non-profit organization helping teenagers & young people with Cerebral Palsy and similar disabilities.

CP Teens UK: http://www.cpteensuk.org/

2015 CPISRA World Games: http://www.cpsport.org/news/cpisra-world-games/

The transcript of Ellie’s interview is below

How does cerebral palsy affect your life?

It affects my walking and my co-ordination, so I can’t do things like, pour drinks, or cut up food, or handle money. Things like that, like, everyday things really.

How do you overcome those things?

I ask other people to help me out a bit where needed.

I think if you have support around you, you’re more likely to go out and do different things, and have the confidence to do different things.

I applied for a sport degree at University and I would have never done that before I had that network around me

I wasn’t going to go, I was terrified of going, even up until the night before, I was like, I’m not going, I’m not going, and my mum dropped me off on my first day, and she was like, just go on, you don’t have to go back tomorrow. I was terrified, but I gave it a go, and it’s the best thing I have ever done.

I think I was scared of doing a sports degree, I thought people would think, why is she doing a sports degree? And I was scared about making friends, being in a new environment, and yeah it was quite a daunting process

How did you address each of those fears?

Well first of all I told myself I was being stupid, and I just went and decided to give it a shot, and it all kind of fell in to place.

I would say… I don’t know how to put it… Always step out of your comfort zone, because that’s where your life begins really.

Is there any way your life is richer because of cerebral palsy?

Yes, definitely, I think I would have just gone on in life having things my own way all the time, and actually not realizing that everything can’t go your own way all the time.

I think it’s made me, I don’t know how to say it really, I think as a teenager, teenagers are self-centered and it’s all about them, but I think it’s made me realize that it’s not all about me, and that there are other ways to do things, even if you can’t do it in the way it’s meant to be done.

Even the small things are more like, yay.

 

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If you would like to take part in a Heroes of CP interview and be featured on our blog, get in touch with us at hello@exyo.co.uk or in the comments section below.

Sport – the second greatest medicine.

I love sport. I cannot actually get enough of it. Playing it, watching it, more recently coaching it and of course, bbcsporting it. And right now we’re in the middle of wall to wall sport with the olympics & paralympics in Rio! Oooh lovely stuff! I struggle to imagine a world without it. The great philosopher of our time (well,… Read more →

Heroes of CP: Ellie Simpson – Part 1/3 (Road to RaceRunning)

We were extremely excited to kick off our Heroes of CP interview series with Ellie Simpson. She is such an inspiring person. Not only did she manage to win two gold medals at the CPISRA World Games, but she is also the founder of CP Teens UK, an increasingly successful non-profit organization helping teenagers & young people with Cerebral Palsy and similar disabilities.

CP Teens UK: http://www.cpteensuk.org/

2015 CPISRA World Games: http://www.cpsport.org/news/cpisra-world-games/

Whilst conducting this part of the interview, the things that I was particularly struck by about Ellie’s message were;

  • the importance of community for motivation and successfully achieving her goals,
  • the potentially damaging misconceptions that she has been exposed to and how she rose above them,
  • and her enduring memories from the moments after she won her gold medals.

Ellie says it best herself though, so watch the video above.

The transcript is below.

I’m Ellie Simpson, I’m 21 years old, and I go to Sheffield Hallam. I am a race runner for England

I race run because I really like the feel of it. I can’t run normally, and I can’t race with wheelchairs because my hands don’t work properly, so race running gives me opportunity to run on the track.

A few years ago I didn’t do any exercise at all, and when I discovered the Paralympics I thought it would be a good thing to get into.

I thought there would be a social side to it because I saw on the TV at the Paralympics that team GB all seemed to really support one another and get on with one another, and I thought, I want a bit of that action.

At the World Games last year I was part of team England, and there was a massive team spirit, and I managed to win gold in two of my races. When I was coming up the home straight I could hear the rest of team England just going wild.

Like the noise in the stadium definitely spurred me on, because the other runner was just behind me, and I think without the crowd, I wouldn’t have powered on to win.

All through my childhood, it was like; you can’t do sport, sport’s not for you, you can do things elsewhere. I just accepted that, and then I watched the Paralympics, and I thought, hang on a minute, that’s not right. I told my Mum and Dad when they had some friends round that I would go and give it a go, and my Mum and Dad’s friends were like haha… no way, and I was like, no I’m gonna do it.

I think last year when I went to the World Games, it was the closing ceremony, and I’d won two golds, and three years before I was watching the Paralympics thinking, aah maybe one day. But I never thought it would actually happen, and I was sat in the closing ceremony with all my friends, and I was like, yeah… I did it.

 

If you would like to stay updated with our progress, please sign up to our mailing list in the sign-up form below

 

If you would like to take part in a Heroes of CP interview and be featured on our blog, get in touch with us at hello@exyo.co.uk or in the comments section below.

Get Involved! – with RaceRunning @ EIS Sheffield

“ It’s freeing… … amazing… “ it’s so beautiful on the track, fresh air…”, “you can switch off that part of your brain”, “ the experience of what walking must be like without cerebral palsy– using motor patterns which come naturally and easily”, “I’ve never been able to go really fast before!”, “I got hot!”, “It was his first experience… Read more →

Everybody and their mums has heard of Bailey Matthews

And with good reason! Bailey, who happens to have cerebral palsy, completed his first triathlon last year, throwing away his walking frame to complete the last 20 yards of the final running event on his own. HARDCORE 1 And There’s more: Last month, he created and ran this own, “Be More Bailey Triathlon” alongside Jenson Button’s event at Markeaton Park… Read more →

Cerebral Palsy Africa

There are so very many children with CP in Africa. They are unseen and mostly they and their families are isolated because of stigma, but when services are available they flock to receive them.

CPA’s training programmes enable whole communities to be enriched by their capacity to help the most marginalised children in their midst, to achieve their potential.
For more information about CPA: www.cerebralpalsyafrica.org/Malawi.htm
To donate to CPA: www.cerebralpalsyafrica.org/Charitable_D­onations.htm

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