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Showing posts with label journalism. Show all posts
Showing posts with label journalism. Show all posts

Saturday, 19 July 2014

People with invisible conditions are often told things that are meant well but are actually a bit annoying. I don't mean this to sound ungrateful as I know people don't mean to offend and do wish others well but sometimes it wouldn't do any harm to think before they speak. So here is our top 5 list of phrases that we think people should think about before saying.


1. "But you don't look sick"

Too many of us hear this phrase too often, it's common to hear this from people when your disability is invisible. Just because visibly some people appear physically 'fine', whatever fine is, doesn't mean that they aren't disabled. Many people that suffer with invisible conditions have symptoms such as fatigue and chronic pain which is often overlooked by others simply because they can't see it.


2. "I found a cure online..."

There is always that one friend or relative that, whilst is very thoughtful and means well, often smothers you and is quite overwhelming. Whilst we appreciate that people take an interest and try to help out, far too often we hear of online rumours of cures and treatments. Although every now and again it may be an interesting read when you are bombarded with what is often false hope it can get a bit much.


3. "But you were fine yesterday"

People often say this as they don't understand that your abilities and symptoms may fluctuate day to day. Whilst yesterday you may have been a bit better (not necessarily 'fine') today might be one of your really bad days and so you have to cancel your plans. Unfortunately, some friends find this difficult to understand, especially when a bad day coincides with your coffee shop catch up.


4. "I feel so sorry for you"

Please don't. The last thing that people coping with illnesses or disabilities want is anyone's pity. All they want is to be treated 'normally'. I understand that is sometimes difficult to know what to say to someone when they're having a bad time, but instead of offering pity just talk to them normally and they'll open up to you if they want.


5. "I'm sure you'll be fine"

Again. This seems to be a reoccurring theme but what actually is 'fine'? Likewise, we also hope to feel a bit better tomorrow or in the upcoming days and we appreciate that you wish us well but I think being simply 'fine' is a bit too wishful, but one can hope.

Friday, 31 January 2014



In 4 weeks time on February 28th 2014 it is international rare disease day organised by Eurodis. In the run up to this day various events and promotional campaigns are taking place to help raise awareness about invisible conditions. To find out more about the day and to see the all the easy and simple ways that you can get involved just read the rest of this blog post and then visit their website.
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So what is Rare Disease Day?

"Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with over 70 countries participating in 2013. We hope many more will join in 2014. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide." - Rare Disease Day Website 


Below is  a message from the Rare Disease Day Ambassador - Sean Hepburn Ferrer. 




Interested in getting involved? Check out this video explaining the information pack available for download from the Rare Disease Day website.


On 28th Feb we shall feature a special blog post about the success of the day and hopefully share some of your stories about how you got involved. So please get in touch and let us know how you're planning to raise awareness!

Friday, 17 January 2014

This week's blog post features HandiNews International a useful website for people with all kinds of disabilities. We asked them a few questions about what HandiNews is all about so that we can share them with you!
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The Disabilities Meeting Place to Share and Help Each Other

What is HandiNews International?
HandiNews International is an online resource (website and social media) for ALL who are interested in disabilities, to share information and help each other.

How can HandiNews International help me and other disabled people?
HandiNews is a practical way for you to share your stories on our website and help each other - what you've accomplished, what you've learned, what resources you need, what services you might offer, and comment on what others have done. Everyday our Twitter platform brings you news about current disability issues, successes, and a lot more. Our tweets also tell you what's going on in our website - our viewers' latest stories, our featured news, our calendar of conferences, and links to useful resources.

What is HandiNews' aim?
HandiNews International's aim is to help us better our lives and the lives of each other, through sharing and caring, and to teach others to include and welcome us.

How can people like myself get involved with HandiNews International?
It's easy to get involved with HandiNews International. Just "follow" @HandiNews on Twitter, "friend" HandiNews International on Facebook, and bookmark our website. Then share your stories, information, resources, services, thoughts, comments and questions. We're inviting you! Help others, and help yourself!

Got an idea for a future post? Make sure you follow us on Twitter @hideandseekid, like our Facebook Page or email us - hideandseekid@hotmail.co.uk. The next post will go live on the blog on Friday 31st Jan. See you then!

Sunday, 8 September 2013

After reading about Emily's incredible story so far we decided to ask her some questions about her involvement at London 2012 and what her plans are for the future. Here is our short Q+A session with her...





1. As a wheelchair user, how did you find the facilities and accessibility at The Games?
I thought it was incredible.  Not only were the facilities great, they were so great that I honestly did not have to put in any extra effort compared to an able-bodied person.  The lifts and toilets were conveniently placed; everything was lovely and flat, with vehicles to help you out if you struggled with distance.  Most of all, though, there was always someone willing to help you out if you needed it.  Such an inclusive, wonderful atmosphere.

2. Would you encourage a disabled person to apply to be a volunteer at The Games and why?
Absolutely, and why not?  Everything you could possibly need will be available to you.  You will make friends that you immediately have a bond with, as you are all volunteering for the same reasons: to have fun, and to make a difference to the success of the event and the enjoyment of the athletes.  I'd even say that I had an advantage working as a disabled volunteer at the Paralympics. I felt that, a lot of the time, I was able to communicate well with athletes who had similar disabilities, and they were equally confident that I would be able to help them out.  My wheelchair also fell apart during one of my shifts, and I couldn't have been in a better location for it to be mended by all the amazing technicians!

3. What is your favourite memory from working at London 2012?
There's so many! Of course, meeting Seb was incredible, as was being mentioned in his speech.  What I remember most, though, is the constant buzz that surrounded London.  Everyone was vibrant and happy; it made working at the Games an absolute joy.

4. What advice would you give to a disabled person that is considering applying for tickets to Rio?
Read the accessible guide I'm writing, which will hopefully tell you all you need to know about making the most of your time there!

5. Tell us a bit about your book 'An Accessible Guide to Rio' and when can we get our hands on a copy?

Right now, the guide is still in the very early stages. The aim, though, is to create a fully comprehensive guide that will help those with varying disabilities to get the most out of their time in Rio. It'll let you know where is good to visit, where you can rest your head after a busy day, and where you can go to party with ease!  Of course, there will be lots of information about accessible transport and tourist attractions, too.  And it won't just be suitable for those with disabilities either.  The elderly and families with children in pushchairs may also benefit from it, too.  If all goes to plan, we are hoping that the guide will be distributed free of charge through disability organisations and networks, so that the guide really does hit its target audience!

Emily's Twitter: @EmilyRYates




Sunday, 1 September 2013

- Emily and Seb at London 2012


- Emily and her friend Tom with 
The One Show's Alex Jones

Me and my twin sister, Lucy were born 10 weeks prematurely, and later diagnosed with Cerebral Palsy, after not being able to walk for quite a while when we were young.  My early memories are of constantly walking up and down the stairs at our local Children's Development Centre to try and strengthen my legs.  We had a lovely childhood, and loved school.  I don't remember our disability ever affecting us, how we made friends, or our outlook on life.

At 9 years old, I had an operation to improve my walking, as it was getting so bad that my knees started to knock together and my posture was worsening.  I had Derotational Osteotomy where my thigh bones were cut and pinned back together.  My hamstrings were also lengthened.  This huge procedure took quite a while to recover from, and I lost all the muscle tone in my legs, leading me to use a wheelchair.  I have no recollection of this change ever really bothering me; I was actually much more mobile with the wheelchair, and I started playing wheelchair basketball locally and at county level.  I remember my wheelchair even being quite cool when I started secondary school!  Again, apart from a few issues with school trips and risk assessments, my time at school was so enjoyable. I did well in my GCSEs, and decided to stay on at 6th form, with the hope of attending University.

In the summer of 2008, at the age of 16, I as given an amazing opportunity which would change my life forever. I was nominated by my school to go to southern Africa (Namibia, Lesotho and South Africa) with the JoLt Charity, an incredible organisation that takes disabled or disadvantaged young people on a literal 'Journey of a Lifetime'.  Here, I met people with similar life experiences and similar ambitions.  Together, we did things that we'd never imagined would have been possible.  We rode elephants, went cage diving with sharks, and climbed some of the highest sand dunes there are! I immediately got the travel bug, along with 30 life-long friends.

After JoLt, I was determined to travel some more. After my A Levels, I went to the Sinai Desert with the Yorkshire Schools Exploring Society, and was the first wheelchair user they'd ever taken on a trip.  I was also the first wheelchair user to ever cross the desert on camel! Whilst in the area, we also completed our PADI Open Water Scuba Diving course - a real challenge for me - but it was so worth it.

After Sinai, I moved to London after being accepted to study English at Queen Mary, University of London.  I totally fell in love with London, and all the opportunities it has to offer, and I adored student life!  It was half-way through this fresher year that I was accepted to move to Melbourne, Australia for a year studying abroad.  Going to the other side of the world was quite a scary thought, but I was ready for the challenge. In Australia, I snorkelled at the Great Barrier Reef, volunteered at a juvenile prison, and met another wheelchair user, Alex, who was to become my travelling partner for the year.  Of course, I managed to fit a little study time in, too...  Urging myself to grab such a once-in-a-lifetime opportunity like moving to Australia is something that I'm so proud of.  It would have been so much easier to sit back and stay in my comfort zone, but taking that risk was the best thing I've ever done.

I returned to London in July 2012, after heading from Australia to America to intern at the United Nations in New York.  It was at this time that I received a call from the London 2012 team, saying that my application to be a Games Maker at the Paralympic Games had been successful.  The day before my first shift, I got another call, asking me if I would talk at a press conference the following morning.  I said yes, thinking nothing else of it.  But, lo and behold, I arrived that morning to be greeted by Lord Sebastian Coe - we'd be doing the conference together in front of loads of journalists!  I told them all how amazing the Games had been for those with disabilities, 'lifting the cloud of limitation' on everything that they thought was previously possible.

I then worked at the Excel arena, working as a Games Maker in the warm-up team for Wheelchair Fencing.  I absolutely loved it.  We got the chance to take athletes out onto the field of play, and then take photos with them and their medals!

Seb then went on to use my 'cloud' quote in his closing ceremony speech of the Paralympics.  My phone was going mad with calls and texts - I couldn't believe it!  My friend Tom and I had previously spoken about how great it would be to write an accessible travel guide for the next set of Games at Rio 2016, and this was suddenly our opportunity.  I quickly got in touch with Seb and the team at the British Paralympic Association, both of whom have supported my ambition to create the guide right from the start.  I am now writing the guide in association with Dorling Kindersley and Rough Guides.  We are currently trying to raise sponsorship so that we can distribute the guide free of charge to those who will benefit the most from it. I'm also about to start a Master’s degree in Disability Studies at the University of Leeds, and I'm hoping that my dream to help others with disabilities to embrace the idea of travelling the world really makes a difference!
I am so fortunate to have been given so many wonderful opportunities, and each one has led to another one.  To anyone reading this, the only advice I can give is to urge you to say 'yes' to any exciting offer that is made to you; you never, ever know where it might lead!


 - Twitter: @EmilyRYates

Next week's blog post will feature a short Q+A with Emily about her experiences at London 2012 and her plans for the future - so stay tuned!



Saturday, 12 January 2013


Hello everyone! First of all, i'd like to apologise for the significant lack of posts in recent months, the reasoning behind this shall all be explained in an upcoming blog post. However, we're back now with weekly content being uploaded!

That's right...
 a new blog post will be uploaded every friday 1pm UK time! 

I'm looking for your suggestions and contributions to be uploaded. Whether its a personal story about coping with the hectic Christmas period, some useful info you've recently come across or some inspiring and encouraging messages we'd love to hear from you!

Get in touch via email: hideandseekid@hotmail.co.uk or tweet us: @hideandseekid!

This is your chance to help us to reach out and raise awareness about invisible disabilities. 

Also, i'll be changing the layout of the blog so do let me know what you think!

Please share this blog post with your friends and family to let everyone know that we're back up and running, raising awareness about invisible disabilities.


Thank you.

Next Blog: "Why so quiet?" will be up on Friday 18th Jan!

Friday, 26 October 2012



We are very sorry for the lack of posts and content recently but there will be a big update coming soon explaining our absence!

We will relaunch the blog in January and will post every Wednesday of each week!


In no way has his blog or this cause been forgotten!

Stay tuned for future updates.

Tuesday, 11 September 2012

Social Sites

Today's post will be about the various social platforms that you can check out to help raise awareness for Invisible Illness Week. As mentioned yesterday you can check out their twitter and Facebook page, but what can you say?

Well here you can draw up some inspiration from some of the many blogs featuring posts about the Invisible Illness Campaign:


Witty Gritty Invisible Girl - www.therevertedbutterfly.blogspot.co.uk
Seeking Equilibrium - www.rosemaryl.blogspot.co.uk

These are just a few of the great blogs where you can gain inspiration and knowledge about all kinds of invisible conditions, so make sure you check out the Invisible Illness website and see some others!

And ofcourse make sure you download a blogger badge!



So yesterday I told you to tweet..but what can you tweet about?

Well here are some of the 'Things to Retweet' suggested by the Invisible Illness Website. You can find more facts and statistics on the website!

"Facts to Tweet About Invisible Illness


RT @invisibleillwk #iiwk12 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw"

Monday, 10 September 2012

Sorry for the lack of posts recently.. but like many of you we have been engrossed with the success of the paralympics! Just before we get on to the main topic of today, we'd like to echo all of those comments and congratulate all of the Paralympian athletes that took part in the game, they were a true inspiration to all! 




Some of you may know that to show our support for Invisible Illness Awareness week (which is this week!) we are uploading a new blog post every day! So today's blog post is..

An Introduction

Many of you may have come across Invisible Illness Awareness Week (#iiwk12) but for those that haven't here is a quick recap. It is a week dedicated to raising awareness about invisible conditions. This week there is loads of stuff going on online which you can get involved with to help raise awareness!

Including...

1) Tweet @invisibleillwk with the hashtag #iiwk12 and help get Invisible Illnesses the recognition they deserve! 

2) Tune in to the virtual conferences on the Invisible Illness Week website!

3) Blog about the week and link it to their website where you can read other entries!

4) Like their Facebook page - http://www.facebook.com/InvisibleIllnessWeek

5) Share this image:


There are many more ways in which you can get involved so make sure you check out their website and tune in here everyday this week from 10.00am BST to read our latest blog post about #iiwk12!

Friday, 31 August 2012

Before I explain more about 'News On Wheels'.. here is a quick social network update from HideAndSeek.




Make sure you follow us on twitter: @hideandseekID
Like our Facebook Page: HideAndSeek Disabilities
Drop us an Email: hideandseekid@hotmail.co.uk 


News On Wheels...

News On Wheels is an iniativie set up by Blake Leitch who is trying to encourage 'disability journalism'. This would involve disabled people writing content about current issues or offering advice to others in a similar position to themselves. You can find out more about Blake's initiative by checking out his website: News On Wheels and we'll feature more about our involvement with Blake's project soon! 


Tuesday, 28 August 2012


Paralympic 4 - Channel 4 HQ, broadcasters of the Paralympics Games.


Although everyone is a bit blue about the Olympics finishing we still have the paralympics to look forward to, which starts tomorrow!



I've been sporting my 'over abled' t-shirt courtesy of Channel 4 and the Paralympic Games.

I'll definitely be supporting Team GB in the Paralympic Games and I'm certain that London will host a brilliant show. Soon there will be a new blog post up thanks to Becki who is taking part in the Opening Ceremony tomorrow, she'll share her emotions of being involved and her own personal story - good luck for tomorrow Becki! 



British Field & Track Olympic Medallists running a lap of honour at the Birmingham Grand Prix.