-- ...oh baby that's a fact. --
As part of my recent official induction into Directioner-land, I've been discussing all things One Direction with a long time friend. When we got chatting she happened to mention that the boys are what I define as huggers.
There are plenty of huggers in the music and entertainment industries, and there are just as many hand shakers and wavers. I've met my fair share of them all. But I'm a wheelchair kid, and people don't realise that something as simple as a high five can take two or three minutes for me to pull off.
When I was little my physiotherapy routine included as much activity in my arms as possible. For you, playing with Woody and Buzz was probably the easiest thing ever. I always needed an adult on hand to help me pose them whichever way I wanted. But it was good exercise. Fast forward 12 or so years and I've grown substantially - from 22lbs when I was 11 to 60-70kgs. With that weight comes strain on my muscles so I just can't move as well as I used to.
Although kids are able to hug me, I'm rarely able to hug back. The only time I can actually achieve that is when the kids actually pull my arm around them. I used to be able to bring one of my arms round the other person myself, but as I've grown big that has now become impossible. So I get hugs like these instead.
- Kian gives the best hugs!
I want you to look at the picture of me with my nephew and think - when was the last time you hugged someone in a wheelchair? Now, there are certain times when I can't have hugs off family, like when they feel slightly sick. The wrong infection can land me in hospital for months - but most of the time I'm free to hug.
A hug is warm, soulful, friendly, supportive and full of muscles. Most of us with severe muscle disease can't remember the last hug we gave to someone, and so often it's the only thing that'll help. There are two things which heal all my ails - hot tea with milk and two sugars, and hugs.
While my family are used to hugging me and not asking, most other people don't even seem to consider that an option. I've found a few exceptions though, and they are my gold medal winners.
One of my old carers has a young daughter. We often see her out and about, and you know she's coming when she squeals my name and flings her arms around me. Despite having never really had much contact with someone in a wheelchair, this was the first thing she did when she met me. She is a pure star - love always goes out to her!
I met Jo O'Mera of S Club 7 fame shortly after my spinal surgery in 2000 as an incredible present from Paul Ward. The 10 weeks I spent preparing for my rods to be put in was done to a soundtrack of S Club. We have a picture in the house of me with her and her arms wrapped around me. Top girl!
H from Steps - also known as Ian Watkins - is probably best described as a childhood crush, even with the curtains he rocked. I met H and the rest of the Steps gang when I was about 9 - before my spinal surgery and shortly before I was due to try an implanted hearing aid. He spent over 20 minutes with me during the meet and greet - during which time the rest of the guys had seen everyone and were already gone. He hugged me, kissed me, tickled me and more. H is honestly the most genuine person, and I will never forget how incredible he made my experience.
Top of the pack by a clean mile is the one and only Tyler Ward. If you haven't heard of him, popping his name into YouTube will show you the sheer popularity he has as an independent music artist, starting his career from his parents' basement. After suffering a major anaphylactic shock to an IV antibiotic I had been receiving for a number of years, I had the choice of a present. I got to meet Tyler, and I got my puppy. When the meet and greet rolled round I was still suffering headaches and tiredness from my anaphylaxis, but was ready for a string of concerts. I came round the curtain in Speakeasy and got a huge grin and what was definitely the biggest, most genuine hug I've ever had. I still haven't quite recovered. What was even more amazing is that Tyler was taking all the high fives and hugs he could get, whether or not I could give them back. Without a doubt an incredible artist, but an even more amazing human. Superhero!
- Tee-Tee the Very, Very Awesome
This is just a selection of the hugs I've had from incredible people. But I wanted you to see all sorts of huggers not be taken back by disability.
- Mandatory Credit: PNP/ WENN.com
Here is Nicki Minaj - American Idol judge and singer - hugging a man at a signing she had in New York City. Top stuff from someone I secretly wish wasn't on Idol.
- Adam Lambert!
We've all established that I love Adam Lambert. But when he's hugging someone with muscular dystrophy I can't help but love him even more. It's impossible to not like him now!!
- K-na and Clay
I think we all know I love Clay Aiken, but even more right here. My late friend K-na had an undiagnosed type of muscular dystrophy due to the Chernobyl incident. She met Clay three times - this being the first during the Independent Tour. She met him during Christmas in the Heartland too, and both times he has his arm around her and couldn't possibly get any closer unless he sat on her. Shortly before we lost her, Clay appeared in Spamalot on Broadway, where he remembered her and fixed her glasses. Below are two different angles of Clay talking to her at the stage door on March 15 2008.
...and a slightly better angle!
But there's one thing about Clay Aiken. If you have a disability, you will never get different treatment. He remembers and hugs many of his fans. It just so happens that he completely forgets about the disability and can only see the person. I sit and watch him perform in concerts, get excited that he's doing all sorts of things, from my computer. I have received my own gift from Clay thanks to magic fairy dust and Christmas magic where he signed a picture of me carrying the Olympic Flame.
- Receiving my gift!
I've truly been blessed by the best Claymate friends anyone could ask for. Clay has brought us together through music, and used his voice to tell us to use ours. He is what I wish everybody could be - open, accepting, loving, funny and honest.
The next time you see someone with a disability, don't just wave at them. Hug them tight. Follow Clay's lead - see the person in front of you, and honour them by treating them just like the non-disabled.
I'm currently teaching myself to hug using my WREX arms. I'll update you every time I'm able to hug someone. Slow progress is progress. If I ever meet One Direction my goal will simply be to not accidentally hit one of them if I get a hug! I've hit far too many people by accident already.
Please send me your pictures of you hugging people - and I'll put them all in a gallery for us to enjoy!
To wrap this up I want to share some pictures of incredible friends with SMA.
- Jacobson Family
Cory and her husband Ian just welcomed little Kinley into the world back in July. She's almost two weeks old and thriving on her mom and dads' love. We're all sending our congratulations as Kinley makes huge progress towards getting home!
- Zion and Zoe
Zion has SMA and uses a life support machine just like mine every time he sleeps. He's here with little sister Zoe and is one of our happy go lucky kids we all love to follow and support!
- The Gardner Family
Cashel Gardner runs his Facebook Page SMA It Forward from his bed using just one thumb. He and his sister Ali have the most severe form of SMA - Type 1. Support Cashel and go like his page!
To finish off please listen to Clay singing Don't Save It All for Christmas Day in Clearwater on his Christmas tour in 2012. Clearwater is one of the friendliest places on earth and I've never been treated as equal as I was there in May 2002.
And remember...
Hugs are warmer when you're in them!
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