Check out my latest guest blog 'London Calling at Christmas' on the Rough Guide to Accessible Britain:
http://www.accessibleguide.co.uk/daysoutblog/#
Complete with very festive photo of me, Archie and Ben as well as some top tips on visiting London, including don't forget to register your car for exemption from paying the congestion charge if you are a Blue Badge holder, it would surely knock out your Christmas stuffing if you were fined instead...
Wednesday, December 12, 2012
Monday, November 19, 2012
CEA cinema card / VHPs - Very Helpful People
Every now and then I come across a VHP - Very Helpful Person.
Take this weekend when I went to to cinema with a friend. I casually asked the nice young man behind the desk if there was any sort of discount for disabled people and he asked whether I had a CEA card?
I'd never heard of it but it basically entitles a disabled person in receipt of DLA or AA, or a blind person, to a free ticket for the person accompanying them to the cinema.
In spite of not having the card he gave me the discount anyway, how about that for customer service.
Now back at home I've printed off my application form for the card which is valid in all of the cinemas I've used in my local area. See here for details:
http://www.ceacard.co.uk/
What I like about this story is not only that I will soon have a very useful card but also how helpful the man was, there are some damn good people out there.
Take this weekend when I went to to cinema with a friend. I casually asked the nice young man behind the desk if there was any sort of discount for disabled people and he asked whether I had a CEA card?
I'd never heard of it but it basically entitles a disabled person in receipt of DLA or AA, or a blind person, to a free ticket for the person accompanying them to the cinema.
In spite of not having the card he gave me the discount anyway, how about that for customer service.
Now back at home I've printed off my application form for the card which is valid in all of the cinemas I've used in my local area. See here for details:
http://www.ceacard.co.uk/
What I like about this story is not only that I will soon have a very useful card but also how helpful the man was, there are some damn good people out there.
Saturday, November 10, 2012
"I do" - making 2012 a year to remember
There's no doubt that the Olympics and Paralympics left me on a feel good high and I managed to prevent any sort of 'October will be the month I come back down to earth with a bump' feeling by deciding that 2012 should also be the year that Mike and I get married.
Then I spotted that 20th October was a Saturday and all of a sudden it just felt like THE date to get married - as we met in October 20 years ago. The timing was tight - we gave notice to marry with one day spare and the whole thing was organised in 3 1/2 weeks!
A friend recommended the hotel - the perfect Hotel Endsleigh, I already had a nice dress from Monsoon which I hadn't worn yet, the boys had bizarrely pointed out some suits in Next that they really wanted [but at the time we had no Big Event for them to wear them at!], Mike bought his own suit, I booked hair appointments, charged cameras, got the car cleaned and the dog groomed in preparation. By sheer luck Mike and I had a weekend in London late September which gave us the opportunity to go to Hatton Garden in London to choose my wedding necklace [as I don't wear rings]. Sorted.
At the last minute we invited 2 friends to be witnesses and another friend to come along too, a total of 5 adults and 5 children.
The day was faultless. The sun shone as we drove across Dartmoor to the hotel and it just continued all day. The ceremony was simple and perfect, the boys read The Owl and The Pussy Cat and it was a real highlight for me as they pulled out all the stops to read it brilliantly. I didn't cry because I was just so happy and a friend commented after how happy Mike looked in the photos and he did too.
After, we sipped champagne in the sun, ate a fabulous lunch, had surprise wedding cup cakes organised by our witnesses, the meal was rounded off with impromtu speeches before having a wander in the grounds followed by an evening in front of the fire, more food and drinks. Everyone pitched in taking photos which are a wonderful reminder of a wonderful day.
It doesn't feel very different being married but if I'm honest I do feel very happy about the fact we have done it and an increased sense of security which means I feel more relaxed and calm. The boys are also delighted because as they put it I am now 'one of the family', not sure what I was before but heh I like being one of the family too.
Then I spotted that 20th October was a Saturday and all of a sudden it just felt like THE date to get married - as we met in October 20 years ago. The timing was tight - we gave notice to marry with one day spare and the whole thing was organised in 3 1/2 weeks!
A friend recommended the hotel - the perfect Hotel Endsleigh, I already had a nice dress from Monsoon which I hadn't worn yet, the boys had bizarrely pointed out some suits in Next that they really wanted [but at the time we had no Big Event for them to wear them at!], Mike bought his own suit, I booked hair appointments, charged cameras, got the car cleaned and the dog groomed in preparation. By sheer luck Mike and I had a weekend in London late September which gave us the opportunity to go to Hatton Garden in London to choose my wedding necklace [as I don't wear rings]. Sorted.
At the last minute we invited 2 friends to be witnesses and another friend to come along too, a total of 5 adults and 5 children.
The day was faultless. The sun shone as we drove across Dartmoor to the hotel and it just continued all day. The ceremony was simple and perfect, the boys read The Owl and The Pussy Cat and it was a real highlight for me as they pulled out all the stops to read it brilliantly. I didn't cry because I was just so happy and a friend commented after how happy Mike looked in the photos and he did too.
After, we sipped champagne in the sun, ate a fabulous lunch, had surprise wedding cup cakes organised by our witnesses, the meal was rounded off with impromtu speeches before having a wander in the grounds followed by an evening in front of the fire, more food and drinks. Everyone pitched in taking photos which are a wonderful reminder of a wonderful day.
It doesn't feel very different being married but if I'm honest I do feel very happy about the fact we have done it and an increased sense of security which means I feel more relaxed and calm. The boys are also delighted because as they put it I am now 'one of the family', not sure what I was before but heh I like being one of the family too.
Sunday, September 9, 2012
Riding the Paralympic Wave. What next?
I have to be honest I never thought I'd get into the Paralympics. It was hard to see that they would provide the sort of thrill that Mo Farah, Jessica Ennis, Bradley Wiggins, Usain Bolt and so many others did at the Olympic Games. But I was wrong.
We've had 11 days of sporting excellence of the Paralympic kind, with Ellie Simmons, Jonnie Peacock, David Weir and Sarah Storey among many others putting us on the edge of our seats and reigniting Great Britain once more. For the last 11 days disabled people have been the darlings of the British population.
The media coverage has been enthused, positive and prolific.
What a contrast to the coverage that disabled people were getting before the Paralympics by certain media outlets who were largely demonising disabled people as work shy, benefit scroungers. An image that the Government seems happy to perpetuate as it makes stripping disabled people of as many benefits as it possible can, through their current welfare reforms, a much easier job.
Dare we hope that the Paralympics will inspire a more accurate coverage of disabled people's issues?
I hope that at the very least the Paralympics highlighted an important point - that disability can happen to anyone.
C4's excellent coverage saw some of the Paralympians telling their stories - some told stories of how they became disabled through illness, accident or war. I always find it ironic that people are happy to vilify disabled people and label them as work shy or scroungers as a justification for taking away their benefits when the fact is that anyone can become disabled.
So if you are someone who thinks the Government's welfare reforms are perfectly acceptable even though they have the potential to push many disabled people into povery and dependence on the state, would you be quite so accepting if that disabled person was you?
Positivity about disability is currently riding high on the crest of the Paralympic wave - could this really be the dawn of a new era in terms of media coverage of disability issues? We'll just have to watch and see.
We've had 11 days of sporting excellence of the Paralympic kind, with Ellie Simmons, Jonnie Peacock, David Weir and Sarah Storey among many others putting us on the edge of our seats and reigniting Great Britain once more. For the last 11 days disabled people have been the darlings of the British population.
The media coverage has been enthused, positive and prolific.
What a contrast to the coverage that disabled people were getting before the Paralympics by certain media outlets who were largely demonising disabled people as work shy, benefit scroungers. An image that the Government seems happy to perpetuate as it makes stripping disabled people of as many benefits as it possible can, through their current welfare reforms, a much easier job.
Dare we hope that the Paralympics will inspire a more accurate coverage of disabled people's issues?
I hope that at the very least the Paralympics highlighted an important point - that disability can happen to anyone.
C4's excellent coverage saw some of the Paralympians telling their stories - some told stories of how they became disabled through illness, accident or war. I always find it ironic that people are happy to vilify disabled people and label them as work shy or scroungers as a justification for taking away their benefits when the fact is that anyone can become disabled.
So if you are someone who thinks the Government's welfare reforms are perfectly acceptable even though they have the potential to push many disabled people into povery and dependence on the state, would you be quite so accepting if that disabled person was you?
Positivity about disability is currently riding high on the crest of the Paralympic wave - could this really be the dawn of a new era in terms of media coverage of disability issues? We'll just have to watch and see.
Monday, September 3, 2012
The Paralympics - portrayal pros and cons
The Paralympics is a tricky thing in terms of its portrayal of disabled people.
It's possible that confusion might kick in when viewers start to think 'well if that wheelchair/amputee/blind person can do that why can't they all?' But it should be obvious that in the same way that not all non disabled people can become Olympic contenders neither can all disabled people become Paralympians.
The Paralympics features an elite sector of the disabled population who have trained extremely hard to be the best at their sport. Simple as that really.
There is an interesting mix of responses to these athletes - incredularity, admiration, pity, recognition of the competitive spirit, 'what's wrong with him/her', use of words like 'suffer' or 'superhuman'.
The thing about all these responses is that they are actually pretty understandble given that on a day to day basis the vast majority of the public don't have any contact with disabled people and they don't get any real insight via the TV, radio, in magazines or papers because disabled people just don't feature that much in the media.
However, I'd like to think that people's perceptions may start to positively change as a result of this mass Paralympic coverage - gosh there must have been more disabled people on TV these last few days than there has been in the last few decades!
So at the very least this coverage means the public are seeing disabled people - both athletes and spectators - who are getting on with their lives, doing things for themselves, being positive about their impairments, looking fabulous and being fit. A lot of that would fly in the face of many people's perceptions of disability.
What the coverage obviously won't show is what it is like to be a disabled person on a day to day basis, living in the real world - facing attitudinal, physical, financial and bureaucratic barriers at every turn.
Whether this 'reality' coverage will come after interest in disability has been piqued as a result of the Paralympics we'll have to wait and see. I really hope that will be the case then maybe we can finally start to shift the inaccurate view of disability once and for all.
It's possible that confusion might kick in when viewers start to think 'well if that wheelchair/amputee/blind person can do that why can't they all?' But it should be obvious that in the same way that not all non disabled people can become Olympic contenders neither can all disabled people become Paralympians.
The Paralympics features an elite sector of the disabled population who have trained extremely hard to be the best at their sport. Simple as that really.
There is an interesting mix of responses to these athletes - incredularity, admiration, pity, recognition of the competitive spirit, 'what's wrong with him/her', use of words like 'suffer' or 'superhuman'.
The thing about all these responses is that they are actually pretty understandble given that on a day to day basis the vast majority of the public don't have any contact with disabled people and they don't get any real insight via the TV, radio, in magazines or papers because disabled people just don't feature that much in the media.
However, I'd like to think that people's perceptions may start to positively change as a result of this mass Paralympic coverage - gosh there must have been more disabled people on TV these last few days than there has been in the last few decades!
So at the very least this coverage means the public are seeing disabled people - both athletes and spectators - who are getting on with their lives, doing things for themselves, being positive about their impairments, looking fabulous and being fit. A lot of that would fly in the face of many people's perceptions of disability.
What the coverage obviously won't show is what it is like to be a disabled person on a day to day basis, living in the real world - facing attitudinal, physical, financial and bureaucratic barriers at every turn.
Whether this 'reality' coverage will come after interest in disability has been piqued as a result of the Paralympics we'll have to wait and see. I really hope that will be the case then maybe we can finally start to shift the inaccurate view of disability once and for all.
Sunday, September 2, 2012
Guardian newspaper travel article featuring me
Just back from our summer holiday, went to Fitou in France and Castelldefels near Barcelona, Spain.
While I was away I was included in a Guardian travel feature 'Access all Areas' about accessible travel/holidays for disabled people.
Find my bit, complete with family pic, just over half way down under the title 'Accessible Brtain':
http://www.guardian.co.uk/travel/2012/aug/24/accessible-holidays-disabled-people
While I was away I was included in a Guardian travel feature 'Access all Areas' about accessible travel/holidays for disabled people.
Find my bit, complete with family pic, just over half way down under the title 'Accessible Brtain':
http://www.guardian.co.uk/travel/2012/aug/24/accessible-holidays-disabled-people
Thursday, August 16, 2012
Ian Brady - Time To Let Go? - Part 2
On the 2 July I wrote a post about Moors Murderer Ian Brady who wants to be allowed to die. I said:
"I can't help wondering whether he should be granted his wish provided he puts the mother of Keith Bennett, one of the children he murdered, out of her misery and tell her where he buried his body. At least that would bring her closure after all these years. Is there any part of Brady that is humane enough to do that for her if he does know/still remember?"
Apparently he has now revealed, to one of his long term visitors, the location of Keith Bennett's body:
http://www.bbc.co.uk/news/uk-england-19292164
Does that mean he does have an inkling of humanity?
[I have to say there is a part of me which is very curious about his long term visitor- who are they, why did they start visiting, was the purpose of visiting to extract this very information?]
"I can't help wondering whether he should be granted his wish provided he puts the mother of Keith Bennett, one of the children he murdered, out of her misery and tell her where he buried his body. At least that would bring her closure after all these years. Is there any part of Brady that is humane enough to do that for her if he does know/still remember?"
Apparently he has now revealed, to one of his long term visitors, the location of Keith Bennett's body:
http://www.bbc.co.uk/news/uk-england-19292164
Does that mean he does have an inkling of humanity?
[I have to say there is a part of me which is very curious about his long term visitor- who are they, why did they start visiting, was the purpose of visiting to extract this very information?]
Friday, August 10, 2012
Guest Tweeter for Accessible Guide today
I was Guest Tweeter for #AccessibleGuide [Motability Operations] today, so have gone from not having a clue about Twitter to guest tweeting in a matter of weeks!
Tweeted from the fabulous and very accessible Haldon Forest [I should really be doing their PR!] which is featured in the Rough Guide to Accessible Britain: accessibleguide.co.uk
Check out the great photos in the links below:
Tweeted from the fabulous and very accessible Haldon Forest [I should really be doing their PR!] which is featured in the Rough Guide to Accessible Britain: accessibleguide.co.uk
Check out the great photos in the links below:
Tweets
MotabilityOperations
Our #FF mention has to be for @FourFootTall - if you missed Emma's Guest Tweeting this morning take a look through our feed,some great pics!
Huge thanks to Emma Bowler (@FourFootTall) for Guest Tweeting for us from Haldon Forest Park today. Looks like you all had a great day out!
Back at the car. Total expedition
time nearly 3 hours. Everyone’s had a lovely walk and even the dog is
ready for a nap. We’ll be back.
Love this homeward bound walk through the forest,just loving the great outdoors feeling,we have it all to ourselves too http://pic.twitter.com/EHmRKPgD
Guest Tweeting from Haldon Forest Park (@FourFootTall) http://pic.twitter.com/Eoup7LsC
Passing under people whizzing overhead on zip wires, it looks like great fun but not sure I would dare do it? http://pic.twitter.com/zcdEaF0T
Have now joined the slightly more
challenging Raptor Trail, heading down quite a steep slope but the
Tramper just takes it in its stride.
Been to Haldon several times but arrived at the Bird of Prey viewpoint for the first time. Can’t see any,so eating cake http://pic.twitter.com/mt1L4gMB
Just bumped into a group on Segways - 2 wheeled, self-balancing, electric vehicles. Mike suggests I give it a go… errr? http://pic.twitter.com/fHKnL8HD
All of the @AccessibleGuide Tweets this morning are coming courtesy of Guest Tweeter Emma Bowler (@FourFootTall)
Ben’s hitched a ride with Archie; apparently they are playing ‘Batman and Harry’!? http://pic.twitter.com/1YYHhsXV
We’re on the easy, very accessible Discovery Trail...
If you are in the South West and fancy hiring a Tramper have a look on http://www.countrysidemobility.org/ for locations.
Tramper feels very sturdy. You have to twist the handlebar to keep it going so I feel like a biker. Albeit a slow one! http://pic.twitter.com/Ndsqhxou
We’re here!Child1 on foot,check.Child2 with mobility scooter,check.Dog,check. Partner,check.Now I just need my Tramper http://pic.twitter.com/Uc2rtiBU
Just joined CountrysideMobilitySW
scheme which hires Trampers - all terrain scooters.Off to
HaldonForestPark near Exeter today @FourFeetTall
From here we are handing over to our Guest Tweeter for the day, Emma Bowler @FourFeetTall. Over to you Emma...
Stay tuned today for our Guest Tweeter, Emma Bolwer @FourFootTall, who will be Tweeting her family day out in Haldon Forest Park
Exciting stuff! We have Emma Bowler @FourFootTall guest tweeting for us tomorrow. Emma will be Tweeting from a summer family day out
Wednesday, July 25, 2012
Living with the fear factor - Disability Now article
Hot off the press is my article about the fears disabled parents and parents of disabled
children have about 'welfare reform' [see below for link].
Unfortunately disabled people seem to be very high up on that list. As one contributor to the article said to me '"it's a very bad time to be disabled right now" and once these welfare reforms AKA benefit cuts properly kick in it's looking likely that things will get a whole lot worse.
There's a photo of David Cameron being passed around on Facebook at the moment, the headline is: 'Don't Panic' then under the photo of him it says 'If we haven't fu*ked you over yet... you are all on my list'.
Unfortunately disabled people seem to be very high up on that list. As one contributor to the article said to me '"it's a very bad time to be disabled right now" and once these welfare reforms AKA benefit cuts properly kick in it's looking likely that things will get a whole lot worse.
Friday, July 13, 2012
The return of institutionalisation for disabled people?
Baroness Jane Campbell has just alerted me to a very worrying proposal being considered by Worcestershire County Council and if she's worried about it we all should be.
Basically Worcestershire CC want to put a cap on the amount of money they spend on disabled people living independently in the community. The cap would be the amount of money it would cost for that same person to live in a care home.
So, if your care costs more than the cost of a care home you either have to cover the extra costs yourself [at a time when the government is looking to strip away as many benefits as they can], source help from friends/family/neighbours/charities or compromise on the care package you need. Otherwise you move into a care home.
It may come as a surprise to some but there are many disabled people who live independently, quite happily in the community but the level of support they receive could well cost more than a care home and therefore under these proposals they could well end up being shunted into a care home because they have no alternative.
Doesn't this all sound vaguely like doing the opposite of what we've been aiming to do over the past few decades, 'care in the community' and all that?
It just feels like this government is trying to strip away and strip away whatever we have - money, independence, dignity. Are we really going to go back to the whole 'out of sight out of mind' thing?
Is this really happening in 2012?
To read more:
http://wearespartacus.org.uk/past-caring-report/
http://www.worcestershire.gov.uk/cms/pdf/04-MEP-Consultation-EasyRead.pdf
Basically Worcestershire CC want to put a cap on the amount of money they spend on disabled people living independently in the community. The cap would be the amount of money it would cost for that same person to live in a care home.
So, if your care costs more than the cost of a care home you either have to cover the extra costs yourself [at a time when the government is looking to strip away as many benefits as they can], source help from friends/family/neighbours/charities or compromise on the care package you need. Otherwise you move into a care home.
It may come as a surprise to some but there are many disabled people who live independently, quite happily in the community but the level of support they receive could well cost more than a care home and therefore under these proposals they could well end up being shunted into a care home because they have no alternative.
Doesn't this all sound vaguely like doing the opposite of what we've been aiming to do over the past few decades, 'care in the community' and all that?
It just feels like this government is trying to strip away and strip away whatever we have - money, independence, dignity. Are we really going to go back to the whole 'out of sight out of mind' thing?
Is this really happening in 2012?
To read more:
http://wearespartacus.org.uk/past-caring-report/
http://www.worcestershire.gov.uk/cms/pdf/04-MEP-Consultation-EasyRead.pdf
Tuesday, July 3, 2012
Ian Brady - time to let go?
The case of Myra Hindley and Ian Brady has lingered in the public domain for decades. Their hideous crimes, murdering five children in the 60s, are hard to forget and impossible to forgive.
Myra Hindley died in jail in 2002 when she was 60.
Brady, now 74, was jailed in 1966 and detained at Ashworth Hospital, a high security psychiatric hospital, since 1985. He has been on successive hunger strikes since 1999 in attempt to kill himself and has been tube fed for the last 12 years as he refuses food. He now wants to be transferred to prison and be allowed to die.
Having just had a seizure it's possible that Brady is 'on his way out' but if he recovers from his current health predicament should he be transferred and be allowed to die? Has he served his time or is there no such thing as serving your time when you have done such appalling crimes? How much is our feeling about this case complicated by the intensity of its media profile and does that affect our judgement of it in a way that it doesn't with cases that have received less attention?
What's always fascinated me is the balance between 'mad', 'bad' and 'dangerous' - where does Brady fall within this balance and does this affect anything? Probably.
I can't help wondering whether he should be granted his wish provided he puts the mother of Keith Bennett, one of the children he murdered, out of her misery and tell her where he buried his body. At least that would bring her closure after all these years. Is there any part of Brady that is humane enough to do that for her if he does know/still remember?
Myra Hindley died in jail in 2002 when she was 60.
Brady, now 74, was jailed in 1966 and detained at Ashworth Hospital, a high security psychiatric hospital, since 1985. He has been on successive hunger strikes since 1999 in attempt to kill himself and has been tube fed for the last 12 years as he refuses food. He now wants to be transferred to prison and be allowed to die.
Having just had a seizure it's possible that Brady is 'on his way out' but if he recovers from his current health predicament should he be transferred and be allowed to die? Has he served his time or is there no such thing as serving your time when you have done such appalling crimes? How much is our feeling about this case complicated by the intensity of its media profile and does that affect our judgement of it in a way that it doesn't with cases that have received less attention?
What's always fascinated me is the balance between 'mad', 'bad' and 'dangerous' - where does Brady fall within this balance and does this affect anything? Probably.
I can't help wondering whether he should be granted his wish provided he puts the mother of Keith Bennett, one of the children he murdered, out of her misery and tell her where he buried his body. At least that would bring her closure after all these years. Is there any part of Brady that is humane enough to do that for her if he does know/still remember?
Friday, June 1, 2012
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/
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/
Wednesday, May 23, 2012
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
Tuesday, May 22, 2012
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.
We saw Torch Bearer Colin Edwards carry the torch in our local area on Sunday. The atmosphere was fabulous.
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.
Friday, May 11, 2012
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.
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.
Tuesday, April 3, 2012
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.
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.
Tuesday, March 27, 2012
Twitter - I've finally gone and signed up
I've finally bowed to the pressure of keeping up with the world of media and signed up to Twitter as 'FourFootTall' no idea if this is a good name or not but I couldn't bring myself to be EmmaBowler2... 2 no thanks!
As part of the signing up process I earmarked 12 people to 'Follow'. I read a few of their Tweets and quickly realised that writing them must be more of an art than it first appears. Certainly some of the Tweets make no sense whatsoever whilst others did look interesting because they had something worthwhile to say.
I'm still contemplating what on earth I'm going to say but perhaps it will all fall into place at some point, I'm still a novice after all.
What's very bizarre is that even though I haven't submitted a Tweet yet or completed my profile I have a follower, how does that work? Perhaps it is all in a name.
As part of the signing up process I earmarked 12 people to 'Follow'. I read a few of their Tweets and quickly realised that writing them must be more of an art than it first appears. Certainly some of the Tweets make no sense whatsoever whilst others did look interesting because they had something worthwhile to say.
I'm still contemplating what on earth I'm going to say but perhaps it will all fall into place at some point, I'm still a novice after all.
What's very bizarre is that even though I haven't submitted a Tweet yet or completed my profile I have a follower, how does that work? Perhaps it is all in a name.
Monday, March 12, 2012
Hospital appointments - a small rant
I really hate sorting out hospital appointments. Archie's been sent two recently, both are in the term time and I don't want him to miss school for hospital appointments that aren't urgent, I'd rather push them into the school holidays. But changing them is never straightforward.
Apparently the first, an ENT appointment, has been graded A which means the appointment booking person can't change it by more than a week. She suggests calling the Consultant's secretary, which I did. She was very pleasant but has no idea why it is a grade A appointment, can't help me change it and suggests calling the appointment booking people. So I'm back where I started.
The second appointment is to see a consultant in Bristol where Archie attends a bone dysplasia clinic.
When I call to change it the booking person points out that Archie usually attends a bone dysplasia clinic and the appointment I have been sent is for a normal clinic. She looks up the first bone dysplasia clinic but that's still in term time. The next one is late August , lord knows what we will be doing then but I book that one.
What's annoying about a lot of hospital appointments is that you wait a long time for them, spend ages waiting around on the day, go in and then it turns out to feel like a bit of a waste of time as nothing really happens. Perhaps 'nothing really happening' is a result in many people's eyes but having had a whole childhood of appointments where 'nothing ever happened' I've had enough of them.
As well as the inconvenient timing of the appointment the other issue with this one is that it is for a different consultant to the one Archie usually sees. There's a real issue when you have a rare disability, like Kniest Syndrome, when there is a lack of consultant continuity. The advantage of the consultant that Archie usually sees in Bristol is that he knows something about Kniest which is a pretty key criteria, it could be this other consultant does too but I don't know that for sure - if he doesn't then we're back into 'real waste of time appointment' territory. I don't want to go there.
In the old days I would have just rolled over and accepted it but nowadays I think it's really worthwhile asking why there has been a change of consultant and if there is no valid reason to insist on seeing the one you've got to know and who's got to know you. It's easy to feel slightly in awe of the medical system but to get the best out of it sometimes you have to assert yourself, it's been a long time coming and I never did it for myself but at least I can try and do it for Archie.
Apparently the first, an ENT appointment, has been graded A which means the appointment booking person can't change it by more than a week. She suggests calling the Consultant's secretary, which I did. She was very pleasant but has no idea why it is a grade A appointment, can't help me change it and suggests calling the appointment booking people. So I'm back where I started.
The second appointment is to see a consultant in Bristol where Archie attends a bone dysplasia clinic.
When I call to change it the booking person points out that Archie usually attends a bone dysplasia clinic and the appointment I have been sent is for a normal clinic. She looks up the first bone dysplasia clinic but that's still in term time. The next one is late August , lord knows what we will be doing then but I book that one.
What's annoying about a lot of hospital appointments is that you wait a long time for them, spend ages waiting around on the day, go in and then it turns out to feel like a bit of a waste of time as nothing really happens. Perhaps 'nothing really happening' is a result in many people's eyes but having had a whole childhood of appointments where 'nothing ever happened' I've had enough of them.
As well as the inconvenient timing of the appointment the other issue with this one is that it is for a different consultant to the one Archie usually sees. There's a real issue when you have a rare disability, like Kniest Syndrome, when there is a lack of consultant continuity. The advantage of the consultant that Archie usually sees in Bristol is that he knows something about Kniest which is a pretty key criteria, it could be this other consultant does too but I don't know that for sure - if he doesn't then we're back into 'real waste of time appointment' territory. I don't want to go there.
In the old days I would have just rolled over and accepted it but nowadays I think it's really worthwhile asking why there has been a change of consultant and if there is no valid reason to insist on seeing the one you've got to know and who's got to know you. It's easy to feel slightly in awe of the medical system but to get the best out of it sometimes you have to assert yourself, it's been a long time coming and I never did it for myself but at least I can try and do it for Archie.
Thursday, January 26, 2012
Article about Young Disabled Campaigners in Disability Now
Have a look at the article I wrote for Feb 2012 Disability Now magazine about young campaigners, as mentioned in my previous post.
They are a fabulous bunch of young disabled people:
http://www.disabilitynow.org.uk/living/features/meet-the-future-young-campaigners-on-show/
If you get the chance the article looks even better in the printed version....
They are a fabulous bunch of young disabled people:
http://www.disabilitynow.org.uk/living/features/meet-the-future-young-campaigners-on-show/
If you get the chance the article looks even better in the printed version....
Monday, January 23, 2012
New Year New Motivation
I love the beginning of the year as I'm all motivated. In fact I've been so busy my New Years Resolution of making sure I write one blog entry a month [surely I can do that?] nearly fell by the wayside...
Already this year I've written a great article about young disabled campaigners for Disability Now, it great because it features some fab young people who have already done a huge amount to try and improve the lot of disabled people, the youngest started campaigning at 10 years old. How's that for inspiration.
The only shame of the article is that it won't reach a wider audience as it's the sort of thing I'd love to see the Guardian going for, showing the wider public how positive and brilliant young disabled people can be. They are as far from loitering around street corners, moaning, scrounging benefits [as the Daily Mail would have you believe] as you can get.
I've also been doing a massive clear out, there's not a drawer, cupboard or box in my house that I don't know the contents of now. What I love about doing this is not just the recycling and decluttering element but finding things I'd forgotten I had. The whole process has made me feel very positive and sorted in more ways than one.
This feeling also ties in with the fact that I have after over 7 years of primarily looking after children embarked on a course, just for me! It's a Certificate In Counselling course, the idea is to see whether I like studying again and if I like the subject of counselling, then if I do I could potentially take it further.
Even after just a few weeks of the course I'm really enjoying doing something new, and that together with reading a book about being more assertive could possibly mean I end up a whole new woman by the end of 2012, watch this space.
Already this year I've written a great article about young disabled campaigners for Disability Now, it great because it features some fab young people who have already done a huge amount to try and improve the lot of disabled people, the youngest started campaigning at 10 years old. How's that for inspiration.
The only shame of the article is that it won't reach a wider audience as it's the sort of thing I'd love to see the Guardian going for, showing the wider public how positive and brilliant young disabled people can be. They are as far from loitering around street corners, moaning, scrounging benefits [as the Daily Mail would have you believe] as you can get.
I've also been doing a massive clear out, there's not a drawer, cupboard or box in my house that I don't know the contents of now. What I love about doing this is not just the recycling and decluttering element but finding things I'd forgotten I had. The whole process has made me feel very positive and sorted in more ways than one.
This feeling also ties in with the fact that I have after over 7 years of primarily looking after children embarked on a course, just for me! It's a Certificate In Counselling course, the idea is to see whether I like studying again and if I like the subject of counselling, then if I do I could potentially take it further.
Even after just a few weeks of the course I'm really enjoying doing something new, and that together with reading a book about being more assertive could possibly mean I end up a whole new woman by the end of 2012, watch this space.
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