Saturday, 26 June 2010

We're stuck in a lift together!

"Everyone should be able to do one card trick, tell two jokes, and recite three poems, in case they are ever trapped in an elevator." A quote from Lemony Snicket (Horseradish: Bitter Truths You Can't Avoid)

If you’ve clicked onto my blog, then let’s just pretend we’re stuck in an elevator, because I find that kind of cosy and comforting. I like the thought that you made a definite decision to click on to read what I had to say. You didn’t just stumble upon me on a facebook group or happen to read a sentence or two, as you were passing - you clicked on the link. So thank you – we’re now (for a short while) stuck in a lift together!

You may wonder why I make the distinction that you made a conscious decision to click the link? Well it’s important to me, because so much has happened since ‘Shared Experiences was published on 23rd October 2009. I barely know where to start. But I want to share some of what’s happened and not all of it smells of apple pie.

The good stuff

First of all, I’ve learned enough about social networking to last me one and half lifetimes. As some of you know I joined facebook so that I could connect with parents outside the UK and let them know about ‘Shared Experiences’. To me - it seemed an absolutely certainty that a parent of a child with upper limb deficiencies in Birmingham Alabama would be going through the same thinking and emotions as a parent in Birmingham, England. I found this to true and lots of parents around the world are now benefiting from reading about how parents in the UK and Ireland dealt with the birth of their limb deficient child. A fantastic result and the equivalent of a card trick (see quote above).

Networking with parents and limb deficient people round the world has really opened
my eyes, as to how much can be done to help improve each others lives.
My in-box is growing as I’m contacted by parents and health professional who have read my book and wish to comment, say ‘hi’ or ask questions. It’s personally very rewarding and I’m glad to help.

The bad stuff

However, as good as the internet and facebook is at putting me in touch with parents it has also exposed me to a side of life I didn’t even know existed and that is the ‘secret world of a devotee’. I’ve found to my horror that there are men (and it’s mostly men) who are sexually attracted to women with missing limbs and will do anything to start up relationships with women with stumps.

Their fixation is so great that some resort to adopting fake profiles on facebook i.e. they pretend that they are also a woman with a limb deficiency. I was taken in by a few such people and discovered some of my photos had been uplifted and posted on dubious sites.

When I found out I wanted to close down my facebook account and take a hammer to my computer. It took me a good few weeks to accept that such people exist and understand more about how they choose to behave. I’ve now made my peace with the simple fact that whilst ‘Mr Main Stream’ might be a ‘tits or legs’ man that there is a minority of men who feel their pulses race at the site of a shapely stump. I’ll leave the topic of devotees at this point as I’m certainly not seeking to normalise their behaviours or give them a platform. I don’t like being pestered by devotees, but they’re out there and there is little that can be done about it.

My role as a writer, commentator, disability awareness campaigner etc.

"Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind."
~ Dr. Seuss

During the last year there have been a few difficult moments - mainly because my connection to the UK based charity Reach has not always been clear. So let me, be clear! I’m a volunteer fund raiser for Reach, but I don’t act in any official capacity. Any comments and observations I make relating to the treatment of people with disabilities and other issues relating to visible difference and limb deficiency are mine and are not to be confused with the official views of Reach.

Whilst I’m very happy to raise money for Reach I’m also happy with my independence from Reach. It’s important that my readers know that my opinions and views are not necessarily aligned with Reach.

I have strong opinions about many topics such as disability hate crime, bullying etc. and I don’t have to sit on the fence - I can express my thoughts. This is an important distinction as I want to be free to be who I am and say what I think.

I wrote Shared Experiences as a purely voluntary venture. It’s my charity work and it’s my way of making a difference. All profits from the sales go to Reach, which I’m truly delighted about. It’s my hope that my book raises thousands of pounds for Reach, so that limb deficient youngsters the UK can continue to benefit from life changing and confidence building activities. But more important to me is the ongoing need to raise awareness about issues relating to having children with limb deficiencies and issues surrounding childhood limb deficiency.

So what else have I been up to? Well loads!!
I have been very busy in early 2010 helping others to raise money for Reach. So if you’ve enjoyed this blog and wish to lighten your pockets then please donate to either or I have also given inspirational talks to group such as Rotary, written articles and hosted a fab ‘Out of Africa’ party. I am delighted with the amounts of funds these activities have raised.

What’s next on my agenda
• I have another book in the pipe-line - if I manage to find an agent willing to run with my idea and sign me up.
• I’m trying to find a sponsor to host a one day event in London (or the south east) called ‘One Amazing Day.’ The concept is that I will bring together six inspirational speakers to address 150 -200 young people with visible differences or disabilities. It’s important that all my speakers have some sort of disability.
• I’m hoping to interview Michael Caines the famous one armed chef and others with inspirational stories to tell.

Well you’ve still in the lift with me and I’ve not told any jokes. There are some good ones on it’s where I found the following;
A Perfect Match
A woman frustrated by a string of lousy relationships placed a personal advertisement:
"SWF, 35, seeks man who will not beat me or chase skirts for LTR. Must be good in bed!"
After several days with no response, the doorbell rang. She answered the door to find a handsome wheelchair user with no arms or legs on her porch.
"Hello," said he, "I saw your personal advertisement. As you can see, I have no arms, so I won't beat you. I have no legs, so I won't chase after other young ladies."
"But," said she, "Are you good in bed?"
"How do you think I rang the doorbell?"

Thank you to those of you, who have bought copies of ‘Shared Experiences’. Please don’t forget to review it so that more health professionals are inclined to buy a copy. If you wish to review it or read previous reviews please click on;

Thank you staying trapped in the lift with me - sorry I didn’t get round to reciting a poem. I’ll save that for next time…


Tuesday, 5 January 2010

Dear 'Shared Experiences' supporter,

I wish I knew where the last few months have gone because so much has happened. I'm delighted to tell you that 'Shared Experiences' was officially launched in Dublin at the Reach AGM, at the end of October 2009.

We sold over a hundred copies on the day which was great because most were bought by parents of children with upper limb deficiencies, including many of the contributors, so I was able to catch up with lots of people and make new friends.

Sales have continued to come in directly to Reach and it's also available via SO PLEASE BUY A COPY! An please buy a copy for any midwife, teach, doctor, occupational therapist you know!

Just before Christmas sales hit £4460 and that all goes to Reach. Sales are going well and particularly outside of the UK because facebook has helped me promote the contents of the book to groups all over the world and I'm in touch with many parents.

I received quite a number of emails from mums and dads - some sharing their stories but many asking for advice or simple help. For example one mum asked if I could explain how I tie my shoe-laces. That proved impossible to write down so my husband made a video of me demonstrating how to I wrap the lace around my stump etc.! I have posted that on facebook and it's available to genuine enquirers.

You might be wondering 'who is a genuine enquirer'? Well it's a person who has a genuine personal or human interest in limb deficiency. Unfortunately there are a group of people on the internet who have an unhealthy interest in limb deficiency and target people with limb deficiencies to satisfy sexual preferences they have for people with stumps. I could go on and I was very tempted to write an article about what they do and how they do it, but several friends suggested that in explaining their actions that I wold be in some way normalizing it! So for the moment I'm sitting on the fence with it all until I decide how best to deal with all the info I have.

Luckily I'm in contact with another charity who have also been targeted and we're sharing info on these people so as to warn other unsuspecting limb deficient people.

Back to 'Shared Experiences' .......well I feel very honoured to have been given an an award sponsored by C.H.I.L.D ( ) an Australian charity which supports children with limb deficiencies. The award is for the person who has done the most to raise awareness about limb deficiency in the community. I also feel humbled because many of those who voted for me did so because they have read 'Shared Experiences' and it was useful to them.

So the best way of saying thank you to those who have supported me is to keep on raising awareness about the issues surrounding childhood deficiencies whether they be everyday concerns over 'how will my child tie their laces' or 'should my child have a toe to hand transfer'

Thank you for reading my blog. I won't leave the next update so long. All the best to you all in 2010.