Disabilities Don't Define You - by Paisley Hansen

Disabilities Don’t Define You

Facing life with a disability can be a challenge. Uneducated or dismissive people may discount you as a member of society, or you may feel infantilized or marginalized by well-meaning family or friends. However, you do not have to allow your disability to define you. You are a person with a disability, not a disabled person. While you may never be able to change how some people view you, you can change how you view yourself. Here are some positive ideals you should embrace to keep your disability in a healthy perspective.

Focus on Strengths

Albert Einstein once said that a fish will go its entire life thinking it is stupid if you judge it on its ability to climb a tree. This is true of people, as well. You cannot go through life focusing on areas of weakness. Find your strengths and use them to your advantage. If you are living with a visual impairment, you may decide to pursue music. For those with speech issues, writing may be a good fit. Focus on what you can do, not what is difficult.

Overcome Obstacles

Confidence is built by overcoming challenges, so challenge yourself! If you have always wanted to perform on stage, finish a 5k, or travel to a foreign country, find a way to make it happen. You can break your goal down into smaller, easier-to-obtain goals to boost your confidence. Once you meet some of your goals, no matter how small, you will be able to overcome larger and larger obstacles as your confidence and belief in yourself soars.

- Photo taken from Flickr

Demand Independence

For some people with disabilities, receiving help from a caregiver or family member is essential. However, this does not mean you should allow yourself to be treated like a child. You can and should gently demand that your boundaries be respected if anyone attempts to provide help you don't want or need. This will help you feel independent and empowered, despite your disability. For example, if you are hearing impaired, there is no reason for well-meaning family and friends to take notes for you at a college lecture. You can rely on hearing aids, sign language, your professor's outline or speech-to-text software to handle your studies independently. If you are in a wheelchair and still want to drive, get a wheelchair van. There are many ways you can keep your independence.

Find Your Inspiration

Inspiration can come from many different sources, such as religion or celebrities. Many famous people have overcome disabilities to achieve their goals and make their dreams come true. For example, over a dozen previous presidents of the United States have had disabilities, including hearing impairments, learning disabilities, epilepsy and post-polio syndrome. None of these men let their challenges get in their way. If you are looking for a motivational quote to tape to your mirror, the following by deafblind author and activist Helen Keller is quite apt: "Although the world is full of suffering, it is full also of the overcoming of it."

Love Yourself

It is often said that you cannot love someone else until you love yourself. However, some people with disabilities may have trouble finding worth and value inside themselves. The media loves to portray anyone who is less than 'perfect' as the butt of jokes and unloveable. In reality, everyone is worthy of love. Make a list of your best qualities and read it every day. Cultivate your relationship with yourself and show yourself love by affirming your own worth and value every day.

Living with a disability cannot stop you from overcoming obstacles, being independent and achieving your goals. You are not your disability, and there is no reason to allow it to define you as a person. Changing your outlook on life with a disability is imperative to setting aside bitterness and forging forward with a renewed sense of purpose and accomplishment.

Written by Paisley Hansen

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Emily Yates: Q+A - Part 2

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

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Emily Yates: 'Journey of a Lifetime' - Part 1

- 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!

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#iiwk12 - Day 2

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:

Invisible Illness Week: Your Blogs for the Cause

Amy - www.lifeislikeamusementpark.blogspot.co.uk

Witty Gritty Invisible Girl - www.therevertedbutterfly.blogspot.co.uk

Seeking Equilibrium - www.rosemaryl.blogspot.co.uk

Merry - www.hopeismyanchor.com

www.allergictolifemybattle.wordpress.com

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"

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#iiwk12 - Day 1

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!

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News On Wheels

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! 

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Over Abled - Paralympics

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.

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May is Ehlers Danlos Awareness Month!

May is Ehlers Danlos Syndrome awareness Month! This is an invisible condition that I suffer with and little is known about it around the world not only amongst the public but also professionals. Below is more information about EDS taken from the EDNF website.

What is EDS?

Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that “runs true” in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.

What are the symptoms of EDS?

Clinical manifestations of EDS are most often joint and skin related and may include:

Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.

Skin: soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.

What are the types of EDS?

There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that “runs true” in a family. An individual with Vascular Type EDS will not have a child with Classical Type EDS.

How is EDS diagnosed?

The categorization of the Ehlers-Danlos syndromes began in the late 1960s and was formalized in the Berlin nosology. Over time, it became apparent that the diagnostic criteria established and published in 1988 did not discriminate adequately between the different types of the Ehlers-Danlos syndrome or between the Ehlers-Danlos syndrome and other phenotypically related conditions. In 1997, a revised nosology was written in Villefranche that redefined the types of EDS. 

How prevalent is EDS?

At this time, research statistics of EDS show the prevalence as 1 in 2,500 to 1 in 5,000. It is known to affect both males and females of all racial and ethnic backgrounds.

How is EDS inherited?

The two known inheritance patterns for EDS include autosomal dominant and autosomal recessive. Specifics regarding genetic inheritance may be found by following the link below. Regardless of the inheritance pattern, we have no choice in which genes we pass on to our children. 

What is the prognosis of someone with EDS?

The prognosis of EDS depends on the specific type. Life expectancy can be shortened with the Vascular Type of EDS due to the possibility of organ and vessel rupture. Life expectancy is usually not affected in the other types.

What can I do now?

The defining trait of those affected by EDS is the search for information. The rise in Internet usage has delivered a significant benefit to families affected by EDS. EDNF members are sharing information on-line and learning from each other in ways that were impossible not very long ago. 

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