This week the Daily Politics show discussed whether the 2015 election will be the year that internet campaigning comes into its own. Moreover, The Independent recently reported that Labour's 2015 campaign will put on emphasis on the internet, as all parties look to emulate Obama's success in 2008 which many credited to his utilisation of the internet.
If the internet really is the new election ground to be fought over, then the Conservative party's decision to delete all content prior to 2010 from both its website and the main internet library is even more authoritarian then first thought.
Rightly so, its been accused of deleting its pre-election promises so that the electorate are less able to hold it to account come 2015. The Guardian reported that the only way to access this information now is to visit the British Library and trawl through archived copies of the Tories' site. It may be possible for a national newspaper to find resource to do this but it is unlikely citizen journalists can manage such a colossal task.
If the internet is to be the medium that chooses the next Prime Minister suddenly it seems a master stroke by the Tories to reduce the information available to bloggers.
As an ex-PR man, Cameron is adept at manipulating the press. He's been accused of refusing live interviews with harder-hitting news sources in favour of pre-recorded pieces or 'easier' interviews on shows such as 'This Morning'. Ian Duncan Smith is a master at spin and has repeatedly misused statistics to promote his own ideology.
But its on twitter and Facebook that these tricks are called out by citizens who take the time to spread the real truth behind sensational, inaccurate or plainly wrong headlines. And it works because citizen journalists are diligent at linking to their sources.
Indeed one of my most read blogs was a piece denouncing the Telegraph's coverage of the scrapping of Disability Living Allowance. I think it was particularly well read because it used the Government's own sources and statistics to refute the misinformation spread by Duncan Smith.
But if I now want to highlight how Cameron consistently misled the public about his intentions towards the NHS or the disabled community I've got to rely on second-hand sources to do so. And I may trust the Guardian but I know not everyone who reads my blog does. That's even more true when it comes to political parties. Labour can highlight all the promises the Tories have broken but it will be harder to drive the message home as we've all become fatigued by the leading parties constantly taking a swing at each other.
In Cameron's own words it is clear why he is trying to limit the information available to citizen journalists and therefore the influence social media can spread. He told the Google Zeitgeist Europe conference in 2006: "You have begun the process of democratising the world's information. By making
more information available to more people, you are giving them more
power."
Social media is still an unknown entity -
which political party will benefit most from it come 2015? That question has certainly got the Tories worried.
Friday, 22 November 2013
Wednesday, 13 November 2013
There but for the grace of my donor go I.....
Today Emma Jane Kingston should be celebrating her 21st birthday but she died earlier this summer from Cystic Fibrosis (CF). She needed a lung transplant but, like a staggering one in three CF people on the lung transplant waiting list, she didn't get one in time.
One of the frustrating elements of my illness, Cystic Fibrosis (CF), is that due to cross-infection risks I can never mix with people who also have CF. So as my health worsened last year and I started considering trying for a lung transplant I sought out people on twitter in the same scenario as me. And that’s where I met the indomitable Emma Jane Kingston or, in the world of twitter, @betseybunny.
We were both being assessed for a transplant simultaneously and we met for the first time at Harefield hospital's outpatient department - we both had our first assessment day on January 16th 2013. But whereas I could barely talk about it –hiding the deterioration of my health away from the majority of my friends for most of the six-month assessment process - she tweeted about it to all and sundry. I’d send her private messages on twitter saying I wasn’t ready to talk about it publicly and she’d berate me asking how could I cope with the stress in secret.
I’d say to my husband in private, sounding like every one of my 32 years, that young people talk about their life too openly on the internet. But I’ll concede that perhaps I was the one in the wrong. Using the web, Emma opened people’s eyes to the pain that people with invisible illnesses can suffer. She made people rethink their perceptions about what it is to be seriously ill, as despite her deteriorating lung function, she was outgoing, made the most of life, kissed boys, went to festivals, dyed her hair seemingly every month and did I mention she was absolutely stunning?
But then when she died, and when other online friends of mine have died, how do you grieve? You can tell your friends but it somehow doesn’t seem as serious to them as Emma wasn’t a physical presence in my life, she never popped over for a cup of tea or glass of wine in the sunshine.
Her family will never know the hundreds of people in the UK and around the world that have mourned her death. She may have been only an online presence in my life, but her death has been felt deeply by all those that followed her blog, read her tweets, messaged her on Facebook. So on behalf of all the tweeters who mourned your loss: Emma, you were respected, you were admired, you were loved.
I finally received my double lung transplant on 30th August this year. When I think of Emma, I'm overwhelmed with the thought that there, but for the grace of my donor, go I . Emma spent her last few months trying to raise awareness of organ donation, so please consider signing the donor register: www.organdonation.nhs.uk
Emma Jane Kingston
One of the frustrating elements of my illness, Cystic Fibrosis (CF), is that due to cross-infection risks I can never mix with people who also have CF. So as my health worsened last year and I started considering trying for a lung transplant I sought out people on twitter in the same scenario as me. And that’s where I met the indomitable Emma Jane Kingston or, in the world of twitter, @betseybunny.
We were both being assessed for a transplant simultaneously and we met for the first time at Harefield hospital's outpatient department - we both had our first assessment day on January 16th 2013. But whereas I could barely talk about it –hiding the deterioration of my health away from the majority of my friends for most of the six-month assessment process - she tweeted about it to all and sundry. I’d send her private messages on twitter saying I wasn’t ready to talk about it publicly and she’d berate me asking how could I cope with the stress in secret.
I’d say to my husband in private, sounding like every one of my 32 years, that young people talk about their life too openly on the internet. But I’ll concede that perhaps I was the one in the wrong. Using the web, Emma opened people’s eyes to the pain that people with invisible illnesses can suffer. She made people rethink their perceptions about what it is to be seriously ill, as despite her deteriorating lung function, she was outgoing, made the most of life, kissed boys, went to festivals, dyed her hair seemingly every month and did I mention she was absolutely stunning?
But then when she died, and when other online friends of mine have died, how do you grieve? You can tell your friends but it somehow doesn’t seem as serious to them as Emma wasn’t a physical presence in my life, she never popped over for a cup of tea or glass of wine in the sunshine.
Her family will never know the hundreds of people in the UK and around the world that have mourned her death. She may have been only an online presence in my life, but her death has been felt deeply by all those that followed her blog, read her tweets, messaged her on Facebook. So on behalf of all the tweeters who mourned your loss: Emma, you were respected, you were admired, you were loved.
I finally received my double lung transplant on 30th August this year. When I think of Emma, I'm overwhelmed with the thought that there, but for the grace of my donor, go I . Emma spent her last few months trying to raise awareness of organ donation, so please consider signing the donor register: www.organdonation.nhs.uk
Friday, 8 November 2013
New rule will leave ESA appellants without ANY income indefinitely
I've been away for a long time - basically being very ill. I'll update you all on my personal travails another time but my first post in over a year will be dedicated to the extraordinary logical brain of Ian Duncan Smith.
He has been lambasted today for the horrendous mess that is Universal Credit - which is over budget, under target, poorly managed, and with no solution in sight on how to get it back on track. But while this central plank of IDS's welfare reform receives all the attention, other smaller, but arguably more costly changes are being introduced with little attention.
On October 28th his department of Work and Pensions introduced a change to the appeal process for Employment and Support allowance, the main disability benefit for those too ill to work. As of last month a claimant who wishes to appeal against a decision that they are not entitled to ESA must first ask the DWP to reconsider the decision before he or she can lodge an official appeal.
However the DWP has decided during this new 'mandatory reconsideration' stage the claimant will no longer receive ESA income and neither will a time limit be given as to how long this process will take. The reality is that this will leave people without any income whatsoever for an indefinite period of time - its a truly shocking decision given that nearly 40% of appeals are found in the claimant's favour. It is unsurprising that this rule is already the subject of a parliamentary early day motion.
The Government argues that the claimant can claim Job Seekers Allowance (JSA) during this appeal stage but in reality this will be at the discretion of the jobcentre. Today's statistics of sanctions against JSA claimants show that every month 12% of job seekers are referred for sanction. The New Policy Institute clarifies that these sanctions are given if there is a 'labour market doubt', or in their words, "Job Centre Plus may have felt they were not making themselves available for work". It is clear that disabled people will be an easy target for sanctions if they struggle to job hunt while coping with bad health problems. Labour MP, Sheila Gilmore, even documents a case in which her constituent Rose Burgess was told by the DWP she was too well to claim ESA, but told by the Job Centre she was too ill to claim JSA.
This new rule will push disabled people into poverty or into even worse ill health. It won't even save any money as basic rate ESA, currently payable at this assessment rate during an appeal process, is £71.70 and JSA is paid at £71.70. In addition, the concern is that mandatory reconsideration has created a Catch 22 situation - by applying for JSA the fear is that it will be taken as evidence in any ESA appeal that the individual has admitted a capacity to work.
So there we are - IDS's amazing logic shines again - a new rule that saves no money, unless, of course, the idea is to force people off benefit entirely. Instead it just heaps more misery, poverty and persecution on disabled people - anyone would think that's his aim...
He has been lambasted today for the horrendous mess that is Universal Credit - which is over budget, under target, poorly managed, and with no solution in sight on how to get it back on track. But while this central plank of IDS's welfare reform receives all the attention, other smaller, but arguably more costly changes are being introduced with little attention.
On October 28th his department of Work and Pensions introduced a change to the appeal process for Employment and Support allowance, the main disability benefit for those too ill to work. As of last month a claimant who wishes to appeal against a decision that they are not entitled to ESA must first ask the DWP to reconsider the decision before he or she can lodge an official appeal.
However the DWP has decided during this new 'mandatory reconsideration' stage the claimant will no longer receive ESA income and neither will a time limit be given as to how long this process will take. The reality is that this will leave people without any income whatsoever for an indefinite period of time - its a truly shocking decision given that nearly 40% of appeals are found in the claimant's favour. It is unsurprising that this rule is already the subject of a parliamentary early day motion.
The Government argues that the claimant can claim Job Seekers Allowance (JSA) during this appeal stage but in reality this will be at the discretion of the jobcentre. Today's statistics of sanctions against JSA claimants show that every month 12% of job seekers are referred for sanction. The New Policy Institute clarifies that these sanctions are given if there is a 'labour market doubt', or in their words, "Job Centre Plus may have felt they were not making themselves available for work". It is clear that disabled people will be an easy target for sanctions if they struggle to job hunt while coping with bad health problems. Labour MP, Sheila Gilmore, even documents a case in which her constituent Rose Burgess was told by the DWP she was too well to claim ESA, but told by the Job Centre she was too ill to claim JSA.
This new rule will push disabled people into poverty or into even worse ill health. It won't even save any money as basic rate ESA, currently payable at this assessment rate during an appeal process, is £71.70 and JSA is paid at £71.70. In addition, the concern is that mandatory reconsideration has created a Catch 22 situation - by applying for JSA the fear is that it will be taken as evidence in any ESA appeal that the individual has admitted a capacity to work.
So there we are - IDS's amazing logic shines again - a new rule that saves no money, unless, of course, the idea is to force people off benefit entirely. Instead it just heaps more misery, poverty and persecution on disabled people - anyone would think that's his aim...
Tuesday, 18 September 2012
ESA cancer concession signals popularity contest for disability benefits
The news that the Government is softening its harsh approach to cancer patients claiming sickness benefits is a welcome relief. Yesterday it announced that the one year time limit for recipients of Employment and Support allowance will only start counting down once the patient has finished all their medical treatments. It has also said that cancer patients can avoid the WCA medical test carried out by Atos as a GP's report will be acceptable proof for the benefits office.
Finally, we think, the Government is being reasonable. It is trusting NHS doctors again to verify the health of their patients and at last recognises that forcing cancer patients to attend DWP job interviews will only slow down their recovery.
Yet perversely this common sense approach to benefits locks the Government into ever more irrational behaviour. As these changes will only apply to cancer patients, other people with just as serious illnesses will still be locked into an unfair system in which they will lose benefit payments after one year even if they are not well enough to return to work - remember the Government's own estimates show that 94% of people who received time limited ESA will not be better after 12 months. The work-focused ESA also forces sick people to seek jobs, attended job centre interviews and even do unlimited work experience while they are still too sick to work.
So yes this change is great news for cancer patients but it stinks to me of a Government running scared that the public is waking up to how punitative and harsh its sickness benefits system is, and is desperate to avoid appalling headlines like this one. Cancer receives widespread media coverage as it can happen to anyone at any time, so come the election such Government negligence could have become a real door-step issue. But ultimately if the Government recognises changes are needed for ESA and the WCA it has a duty to ensure that they are rolled out universally not just for a particular group of people for whom there is greater public sympathy or understanding.
Just as worryingly this shift in policy sets a precedent that those illnesses that have popular support from the public will get a fairer hearing in the huge welfare upheaval than those who suffer from rare or unpopular illnesses (think what a rougher ride those with depression receive from the tabloid press).
Earlier this year Ian Duncan Smith announced that under Personal Independence Payments (the controversial benefit replacing Disability Living Allowance) amputees will be unlikely to receive the top level of mobility support that they currently do under DLA, and warned the public that this would also apply to soldiers.Yet Cameron intervened saying that amputee war veterans will be exempt from the harsh restrictions planned for the mobility component of PIP.
How can Cameron argue that a civilian with a below the knee amputation caused by a road traffic accident is any less disabled than a soldier with the same amputation caused by an IED?
I can see the way the wind is blowing on this issue and I for one don't want a society in which people with illnesses are pitted against each other in some bizarre X-Factor-style media popularity contest as the rest of us judge who is and isn't deserving of fair treatment.
Finally, we think, the Government is being reasonable. It is trusting NHS doctors again to verify the health of their patients and at last recognises that forcing cancer patients to attend DWP job interviews will only slow down their recovery.
Yet perversely this common sense approach to benefits locks the Government into ever more irrational behaviour. As these changes will only apply to cancer patients, other people with just as serious illnesses will still be locked into an unfair system in which they will lose benefit payments after one year even if they are not well enough to return to work - remember the Government's own estimates show that 94% of people who received time limited ESA will not be better after 12 months. The work-focused ESA also forces sick people to seek jobs, attended job centre interviews and even do unlimited work experience while they are still too sick to work.
So yes this change is great news for cancer patients but it stinks to me of a Government running scared that the public is waking up to how punitative and harsh its sickness benefits system is, and is desperate to avoid appalling headlines like this one. Cancer receives widespread media coverage as it can happen to anyone at any time, so come the election such Government negligence could have become a real door-step issue. But ultimately if the Government recognises changes are needed for ESA and the WCA it has a duty to ensure that they are rolled out universally not just for a particular group of people for whom there is greater public sympathy or understanding.
Just as worryingly this shift in policy sets a precedent that those illnesses that have popular support from the public will get a fairer hearing in the huge welfare upheaval than those who suffer from rare or unpopular illnesses (think what a rougher ride those with depression receive from the tabloid press).
Earlier this year Ian Duncan Smith announced that under Personal Independence Payments (the controversial benefit replacing Disability Living Allowance) amputees will be unlikely to receive the top level of mobility support that they currently do under DLA, and warned the public that this would also apply to soldiers.Yet Cameron intervened saying that amputee war veterans will be exempt from the harsh restrictions planned for the mobility component of PIP.
How can Cameron argue that a civilian with a below the knee amputation caused by a road traffic accident is any less disabled than a soldier with the same amputation caused by an IED?
I can see the way the wind is blowing on this issue and I for one don't want a society in which people with illnesses are pitted against each other in some bizarre X-Factor-style media popularity contest as the rest of us judge who is and isn't deserving of fair treatment.
Monday, 10 September 2012
The myth of ‘overcoming’ will damage the legacy of the paralympics
Thanks to the Paralympics disability may suddenly have become mainstream, but while wider society may be openly talking about those who are disabled I still fear it is not listening to what we have to say.
The papers have veered from castigating disabled people as state scroungers to elevating them as a source of inspiration of how to live life properly. It is great that we can use this spotlight on disability to highlight the unfair cuts to benefits that disabled people are currently facing but this focus on welfare shows just how far society has to go until disabled people are seen as part of everyday life. Inevitably the discussion around disability remains centres around issues of economic value because society struggles to understand the value that disabled people contribute elsewhere.
Disabled people, whom these days I count myself amongst after my degenerative illness Cystic Fibrosis has scarred my lungs to such an extent that I now find it very difficult to walk, don’t actually want to be venerated or viewed with suspicion - we just want to be seen as the normal people that we are. Yes we have extra needs that we need help with but we want to contribute to and impact on mainstream culture in the same way that other numerical minorities such as gay people and black people do.
At the opening ceremony, David Cameron said the fact that competing Paralympic athletes “overcome disadvantages” would help “change people’s minds” about disability, but the games alone cannot be expected to widen perceptions, given that they focus on only a tiny niche of those with a disability. Instead I fear it will just impose a different set of able-bodied expectations onto the disabled community.
The discourse around the Paralympics from scrounger to hero unfortunately shifts stereotypes from one of being a drain on taxpayers (always forgetting that many disabled people are also taxpayers) to one in which the disabled must “overcome” their disability to earn respect from society. Yet locked into this very logic of ‘overcoming’ is the assumption that to be able-bodied it better than to be disabled. Edwina Currie’s unfortunate tweet during the opening ceremony that the Italian team were “gorgeous even in wheelchairs” epitomises the concept that disability is something to be looked past, not something that in itself could be attractive.
But ask disabled people if they would prefer to be able-bodied and you won’t get the answer that you expect. Cystic Fibrosis is slowly overwhelming me, yet I can’t say I would rather not have it because everything I have achieved, everyone I love, everything I am, is bound up with my identity as someone who has Cystic Fibrosis. I can find creative ways to accept and navigate my limitations, I can find happiness in doing so, but I can’t ‘overcome’ my illness - it is incurable.
If we want perceptions to change, then society needs to learn from our acceptance of our disabilities: it needs to learn to accept them, too and embrace the added diversity we can bring to communities because of our disabilities not in spite of them.
In a society in which our differences were appreciated and valued, we would be more welcomed by employers, find more thought given to accessible transport, and generate more outrage at benefit cuts that threaten the independence of disabled people. The fantastic Channel 4 Paralympic advert features a lyric by Public Enemy which resonates with me: “Thank you for letting us be ourselves”. The Paralympics may have got the debate started but we have a long way to go until society’s perceptions will truly allow this.
The papers have veered from castigating disabled people as state scroungers to elevating them as a source of inspiration of how to live life properly. It is great that we can use this spotlight on disability to highlight the unfair cuts to benefits that disabled people are currently facing but this focus on welfare shows just how far society has to go until disabled people are seen as part of everyday life. Inevitably the discussion around disability remains centres around issues of economic value because society struggles to understand the value that disabled people contribute elsewhere.
Disabled people, whom these days I count myself amongst after my degenerative illness Cystic Fibrosis has scarred my lungs to such an extent that I now find it very difficult to walk, don’t actually want to be venerated or viewed with suspicion - we just want to be seen as the normal people that we are. Yes we have extra needs that we need help with but we want to contribute to and impact on mainstream culture in the same way that other numerical minorities such as gay people and black people do.
At the opening ceremony, David Cameron said the fact that competing Paralympic athletes “overcome disadvantages” would help “change people’s minds” about disability, but the games alone cannot be expected to widen perceptions, given that they focus on only a tiny niche of those with a disability. Instead I fear it will just impose a different set of able-bodied expectations onto the disabled community.
The discourse around the Paralympics from scrounger to hero unfortunately shifts stereotypes from one of being a drain on taxpayers (always forgetting that many disabled people are also taxpayers) to one in which the disabled must “overcome” their disability to earn respect from society. Yet locked into this very logic of ‘overcoming’ is the assumption that to be able-bodied it better than to be disabled. Edwina Currie’s unfortunate tweet during the opening ceremony that the Italian team were “gorgeous even in wheelchairs” epitomises the concept that disability is something to be looked past, not something that in itself could be attractive.
But ask disabled people if they would prefer to be able-bodied and you won’t get the answer that you expect. Cystic Fibrosis is slowly overwhelming me, yet I can’t say I would rather not have it because everything I have achieved, everyone I love, everything I am, is bound up with my identity as someone who has Cystic Fibrosis. I can find creative ways to accept and navigate my limitations, I can find happiness in doing so, but I can’t ‘overcome’ my illness - it is incurable.
If we want perceptions to change, then society needs to learn from our acceptance of our disabilities: it needs to learn to accept them, too and embrace the added diversity we can bring to communities because of our disabilities not in spite of them.
In a society in which our differences were appreciated and valued, we would be more welcomed by employers, find more thought given to accessible transport, and generate more outrage at benefit cuts that threaten the independence of disabled people. The fantastic Channel 4 Paralympic advert features a lyric by Public Enemy which resonates with me: “Thank you for letting us be ourselves”. The Paralympics may have got the debate started but we have a long way to go until society’s perceptions will truly allow this.
Monday, 3 September 2012
In praise of an accessible paralympics (and amazing volunteers!)
I was lucky enough to go to the London paralympics yesterday (and see the wonderful win by David Weir in the 5000m wheelchair race) and had an amazing time, very much in part because of the thoughtful attitude shown towards those not as able to get around as most.
The paralympics has received criticism from some disabled people due to an inability for some wheelchair users to sit with all their family at events and for the need to use a premium rate phone line to book accessible tickets. These problems aren't minor and should have been considered and overcome in the seven years of preparation for the 2012 paralympics, but on this occasion I wanted to take the time to congratulate the organisers for also making available some excellent facilities for disabled people.
I have Cystic Fibrosis (CF) and my lungs are now rubbish enough that I struggle to walk any distance at all. The olympic park is the size of 350 football pitches and I'd been worrying for weeks in advance as to how I was to negotiate such impossible distances without my car. But the facilities available made what would have been a very stressful, exhausting and likely impossible day, AMAZING!!
Amazing accessibility
The moment we walked off the tube at Stratford there was a sign pointing towards a side exit very close by that had minivans available for those with mobility problems to take them into the park itself. Both my husband and Mum were welcomed to accompany me on board even though they don't have any health problems. The vans also accommodated all types of wheelchairs enabling them to be safely secured and for the chair user to also have a seatbelt.
Once we arrived at the park, there were volunteers with wheelchairs to take people the short walk to the Games mobility centre where you could borrow a wheelchair or mobility scooter free of charge (just bring photo ID). With this scooter I experienced the freedom I haven't had for years in that we could go all the way to the end of the park (at least a 30 minute walk one way) without feeling like I was killing myself with the effort - to be honest without it I know we would have just stayed by the stadium as my breathing was pretty bad yesterday.
There was a parking bay for the scooters near our designated entrance to the stadium and a volunteer available to show us to our seats. It was at this point we discovered our seats were very near the top of the arena and that there were no lifts! I really panicked as to make it up all those stairs would have been unbelievably hard for me, if not impossible, but the volunteer showed us to the ticket resolution desk, explained our problem and had our tickets exchanged for seats on the ground floor. To be honest the view was so much better - the first time I've ever experienced a CF upgrade!
Welcoming and wonderful attitudes
Unlike the current trend in the wider society that demands almost complete helplessness before help is given, the facilities offered showed a nuanced understanding of disability. It recognised that some of us have adapted and curtailed our everyday lives to cope with our disability but need extra help outside of our home or when we can't use a car.
But the best bit of the whole day was everyone's attitude to my health. The 'games makers' volunteers were unbelievably helpful and respectful. Without them I wouldn't have had the day out I had. I have CF so its a hidden illness, I look ok on the outside, I'm slim, I don't need oxygen, I have all my limbs and I don't seem too out of breath if I don't move much. But no one questioned whether I was ill, there was not even an eyebrow raised or a look of distrust in anyone's eyes. They accepted I needed help, didn't ask why, and gave it to me openly and with a smile and desire that my family should have as good a day out as everyone else.
I wish, wish, wish I'd ask the name of the young black girl, with the coolest hair cut, who swapped our tickets so I could say a public thank you. But she was a wonder! Then there was a soldier who was manning the body scanners, similar to those at airports, at the park entrance who assured me I'd get the scooter through as "long as you're a good enough driver", and the couple who asked me to beep my horn on my scooter so they could run behind me to get through the crowd. These light-hearted attitudes were so precious to me, as yesterday was the very first time I've had to use a mobility scooter to help with my walking. It could have been a very sad day for me, a marker of how poor my health is at the moment, but it wasn't. No one stared, judged, questioned. I didn't feel left out, in fact I felt more a part of everything as I could go where everyone else could go. I loved my scooter!
This is how society should be - that disabled people can ask for help when needed and that that help is offered by people who want you to be a part of the celebrations.
So there are good lessons to be learnt from the paralympics as well as bad ones and I just wanted to say thank you, thank you, thank you to everyone who made yesterday a wonderful experience.
Our view of the start of the 200m T44 race - Oscar Pistorius vs Alan Oliveira
The paralympics has received criticism from some disabled people due to an inability for some wheelchair users to sit with all their family at events and for the need to use a premium rate phone line to book accessible tickets. These problems aren't minor and should have been considered and overcome in the seven years of preparation for the 2012 paralympics, but on this occasion I wanted to take the time to congratulate the organisers for also making available some excellent facilities for disabled people.
I have Cystic Fibrosis (CF) and my lungs are now rubbish enough that I struggle to walk any distance at all. The olympic park is the size of 350 football pitches and I'd been worrying for weeks in advance as to how I was to negotiate such impossible distances without my car. But the facilities available made what would have been a very stressful, exhausting and likely impossible day, AMAZING!!
Amazing accessibility
The moment we walked off the tube at Stratford there was a sign pointing towards a side exit very close by that had minivans available for those with mobility problems to take them into the park itself. Both my husband and Mum were welcomed to accompany me on board even though they don't have any health problems. The vans also accommodated all types of wheelchairs enabling them to be safely secured and for the chair user to also have a seatbelt.
Once we arrived at the park, there were volunteers with wheelchairs to take people the short walk to the Games mobility centre where you could borrow a wheelchair or mobility scooter free of charge (just bring photo ID). With this scooter I experienced the freedom I haven't had for years in that we could go all the way to the end of the park (at least a 30 minute walk one way) without feeling like I was killing myself with the effort - to be honest without it I know we would have just stayed by the stadium as my breathing was pretty bad yesterday.
There was a parking bay for the scooters near our designated entrance to the stadium and a volunteer available to show us to our seats. It was at this point we discovered our seats were very near the top of the arena and that there were no lifts! I really panicked as to make it up all those stairs would have been unbelievably hard for me, if not impossible, but the volunteer showed us to the ticket resolution desk, explained our problem and had our tickets exchanged for seats on the ground floor. To be honest the view was so much better - the first time I've ever experienced a CF upgrade!
Welcoming and wonderful attitudes
Unlike the current trend in the wider society that demands almost complete helplessness before help is given, the facilities offered showed a nuanced understanding of disability. It recognised that some of us have adapted and curtailed our everyday lives to cope with our disability but need extra help outside of our home or when we can't use a car.
But the best bit of the whole day was everyone's attitude to my health. The 'games makers' volunteers were unbelievably helpful and respectful. Without them I wouldn't have had the day out I had. I have CF so its a hidden illness, I look ok on the outside, I'm slim, I don't need oxygen, I have all my limbs and I don't seem too out of breath if I don't move much. But no one questioned whether I was ill, there was not even an eyebrow raised or a look of distrust in anyone's eyes. They accepted I needed help, didn't ask why, and gave it to me openly and with a smile and desire that my family should have as good a day out as everyone else.
I wish, wish, wish I'd ask the name of the young black girl, with the coolest hair cut, who swapped our tickets so I could say a public thank you. But she was a wonder! Then there was a soldier who was manning the body scanners, similar to those at airports, at the park entrance who assured me I'd get the scooter through as "long as you're a good enough driver", and the couple who asked me to beep my horn on my scooter so they could run behind me to get through the crowd. These light-hearted attitudes were so precious to me, as yesterday was the very first time I've had to use a mobility scooter to help with my walking. It could have been a very sad day for me, a marker of how poor my health is at the moment, but it wasn't. No one stared, judged, questioned. I didn't feel left out, in fact I felt more a part of everything as I could go where everyone else could go. I loved my scooter!
This is how society should be - that disabled people can ask for help when needed and that that help is offered by people who want you to be a part of the celebrations.
So there are good lessons to be learnt from the paralympics as well as bad ones and I just wanted to say thank you, thank you, thank you to everyone who made yesterday a wonderful experience.
Our view of the start of the 200m T44 race - Oscar Pistorius vs Alan Oliveira
Tuesday, 31 July 2012
To rant or not to rant?
I had a really interesting mini debate today with a fellow on twitter who thought my article for the Guardian today was like a 'sleeping pill' and 'lacked real passion'. I think the only way you improve your work is to seek constructive criticism good or bad so I asked him to expand on his point.
He argued that: "If you were writing about your family would you be passionate? Well, we are all family" To start with what a fantastic sentiment - we should write as if every issue we write about affected a family members and our writing would subsequently have strength, passion and conviction.
Except I choose to rant to my husband about the injustices in the world and rein in that fervour when I write on disability issues as I believe that a moderate, balanced tone, backed up with stats and facts, is more likely to get people to question their own convictions.
It is easy to preach to the converted but if we want the Government to change its attitude to the disabled we need the wider public to get on board with the horrendous cuts and negative rhetoric disabled people are facing these days. I think the best way to do that is to come across as the voice of reason, leaving the Government to embarrass themselves with their discriminatory attitudes.
But what do you all think: is it best to rant or not to rant? I'd love to hear from other people who write on these issues.
p.s. Here is an article I wrote for the Independent which is a bit more rant -like - compared to the Guardian piece does this one hit home harder?
He argued that: "If you were writing about your family would you be passionate? Well, we are all family" To start with what a fantastic sentiment - we should write as if every issue we write about affected a family members and our writing would subsequently have strength, passion and conviction.
Except I choose to rant to my husband about the injustices in the world and rein in that fervour when I write on disability issues as I believe that a moderate, balanced tone, backed up with stats and facts, is more likely to get people to question their own convictions.
It is easy to preach to the converted but if we want the Government to change its attitude to the disabled we need the wider public to get on board with the horrendous cuts and negative rhetoric disabled people are facing these days. I think the best way to do that is to come across as the voice of reason, leaving the Government to embarrass themselves with their discriminatory attitudes.
But what do you all think: is it best to rant or not to rant? I'd love to hear from other people who write on these issues.
p.s. Here is an article I wrote for the Independent which is a bit more rant -like - compared to the Guardian piece does this one hit home harder?
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