Rough Guide to Accessible Britain - new blog entry

Have a look at my blog entry written for the Rough Guide to Accessible Britain, complete with photo of me with Archie and Ben on a day out to the Horniman Museum in London recently.

The Rough Guide to Accessible Britain highlights accessible places to go for a great day out; every year they add more and more attractions so it's building up to be a great resource.

If you know someone who might find it useful - including families with children still in pushchairs, older people with mobility issues as well as disabled people - please do spread the word about it.

http://www.accessibleguide.co.uk/daysoutblog/

Channel 4's Secret Millionaire with Matthew Newbury

Did you see the Secret Millionaire with Matthew Newbury?  For me it illustrated the huge difference between the lives of those who get compensation and those that don't.  

If you didn't see it the story goes that Matthew lost a leg in a traffic accident and got £3million compensation. 

In the programme he went to Manchester to see what disabled people were doing there and met Alex a young man who had become a wheelchair user through meningitis.  Alex was on oral morphine 4 x a day because of the pains in his leg, he was having to crawl upstairs, his family were worrying about finding the money to put down as a deposit for the car they needed so Alex could get around, they had already spent £45,000 on an extension to their house which was no longer suitable for Alex's needs. 

At the end of the programme Matthew gave Alex and his family £3,000 to fund the car deposit and £30,000 to make good and finish the extension - as Alex's mum said this would give Alex 'some dignity back'. 

When it comes to compensation the fundamental issue is that if you become disabled in an accident or where there is someone/something else to blame you get compensation - this is money to cover the extra costs of being disabled.  

If you are born disabled or become disabled through something like cancer or meningitis you have to rely on the state to cover those very same costs.  However, the state gives everything with great reluctance, indeed at the moment it is hell bent on taking as much away as it can. 

So you are left with a situation where one person gets £3million and another needs just £33,000 to revolutionise and 'normalise' their life.  Whether Alex would ever get this money from the state in the form of benefits who knows [and it definitely wouldn't be without a very long, hard fight] but the difference in these two individuals circumstances was very very stark.

The sad question is - just how many Alexs are there out there? 

I've written recently about the issue of compensation for Disability Now so to read more see:  

http://www.disabilitynow.org.uk/have-your-say/guest-column/lifes-lottery-and-the-claim-game-1

Olympic Torch Fever!

You'd have to have a heart of stone not to feel a little tiny bit of excitement about the Olympics coming to London now the Torch is winding its way through the country. 

We saw Torch Bearer Colin Edwards carry the torch in our local area on Sunday.  The atmosphere was fabulous.

Here's me with Colin - he's a leg amputee who is currently running the 630 mile South Devon Coast Path to raise money for limb charity Port-er.  

Actually, there are some great stories of disabled people who are carrying the torch and given that we are still very underepresented in the media generally I hope this is an opportunity for people to see us in a positive light, as people who are getting on with and enjoying life.

The point of blogs

I know my blog is a drop in an almost infinite ocean and I often wonder whether it's more of a public self indulgence than anything else and then I get an e mail from someone who's found it and more importantly found it useful because they have Kniest or their child or even new born baby has Kniest.

Then it really hits home and I remember the original reason I started writing about my own experiences - when I was growing up I knew next to nothing about Kniest, just a few fairly useless medical bits of information, and absolutely nothing about the experiences of other people living with the condition.

As far as living with a rare disability it was a very isolated sometimes scary existence.  It also mean I was very disempowered and was reliant on doctors/consultants, who in hindsight knew as little as I did.

Nowadays, thanks to the internet, blogging, groups, facebook and twitter people with very rare conditions like Kniest are able to touch base with each other and it's amazingly empowering to find out real answers and experiences from the horses mouth.

I hope that means younger people [now that makes me sound very old...], and their parents, will have a much easier time of living with a rare disability.  As an adult it's great to know there are other people, like me, out there and I'm not the only one anymore.

New 'Rough Guide to Accessible Britain'

Check out the new 'Rough Guide to Accessible Britain' published today with my foreword and photo on page 6.

The Guide reviews places all over Britain which have good disabled access as well as great entertainment value.

I reviewed quite a few places mainly in the the South West including At Bristol, the Exmoor Scenic Drive, Haldon, National Marine Aquarium [which includes a photo of us all on pg69] and I also did the new Exeter city review.

http://gb.zinio.com/reader.jsp?issue=416213940&o=ext&WT.mc_id=PUB_WWW_Free_USA_32712_Rough_Guide_To_Accessible_Britain_2012

It takes a few seconds to upload, but it's worth a look.