Tuesday, 7 May 2013
Saturday, 4 May 2013
Belated BADD Post - What's Your Excuse?
In any week I'll see at least one picture of a disabled person doing 'something', often exercising, emblazoned with the caption "What's your excuse?" or something similar. Here are some examples;
I hate, hate, hate these memes and I think you should have a problem with them too. "Why?" I hear you cry! "These pictures celebrate the achievement of overcoming disability/adversity! They are a force for good!". Well I don't agree, and because this is my blog and I'm writing this post I'm going to tell you exactly why I don't agree.
They assume people reading are non-disabled.
These messages all seem aimed at non disabled people which is an issue in itself. It shows that on some level they are "othering" disabled people. Here disabled people are inspiration, not audience. If you want to build a world where disabled people are treated as equals then that's not the way to do it.
If, on the other-hand, it's not assuming that it's audience is non-disabled then that's also a issue. These things are really insulting to disabled people who for one reason or another can't just pop out and climb a mountain and they place undue pressure on disabled people to conform to some heroic ideal. I'm going to talk more about these things in the rest of the post.
They forget there are many vaild reasons people can't do those things.
Money. All of us have to grapple with the cost of getting to venues, paying entrance fees/membership and buying equipment which is often prohibitively expensive. If you are disabled then extra costs like adapted prosthetics mobility equipment care also cost a lot of money. A decent all terrain electric wheelchair is at least £15,000, then you need a specialist car or a trailer to move it in... It all adds up to quite a lot before you factor in the costs of powerful, safe to use grappling hooks and strong rope so you can try your hand at mountain climbing.
Time. Turns out disabled people work and have social commitments, go figure. Finding the time to train to a high level isn't easy.
Location. I'm telling you now that even from a UK perspective a disabled person in London has a better chance of finding a local accessible gym than a disabled person living in the rural Scottish highlands.
Opportunity. It's great that some people know the right people or get lucky with charity support, but they are the exception to the rule.
Disability, yeah I went there. An amputee with running blades may well be able to run 200m. I, as a non-amputee with chronic pain who cannot walk 30m without being sick simply cannot run 200m, and as it stands will not be able to run 200m in the foreseeable future. I could do it in my wheelchair but that's not the message. The message is that just using a wheelchair isn't good enough, you need to go beyond that to be "normal" and to fully overcome disability.
These pictures often forget that disability is a social not medical construct.
Most of us, the UN included subscribe to the social model of disability or a variant of that. The social model states that disability is the result of having an impairment in an inaccessible society. In simpler terms it says being an amputee isn't what disables a person, it's not being able to access good prosthetics, wheelchairs, aids, adaptations, education, employment and health care. It's living in a society that on a institutional level thinks disabled people aren't as capable, moral, 'normal' as the rest of us. These pictures forget that to be in the position the young boy is, running on a good track, with expensive running blades one has to have a certain amount of social privilege. As this article explains, blade running isn't the reality for most amputees.
Disabled people are not there to inspire you.
It may surprise you but when I personally go down to the gym, swimming pool or even supermarket I'm not doing it to inspire non-disabled onlookers and to send a message that disabled people who aren't doing the same just aren't trying. I'm just living my life and doing what I want to. The same way you taking a trip to the shops isn't a statement other than "Hey, I need some milk so I'm going to buy some."
These just feed the "super-crip" stereotype.
The "super-crip" stereotype is fairly well known in disability circles, but if you don't know it I'll quickly explain. When disabled people are not being held up as objects of pity (see messages like "this poor girl suffers hourly with her impairment, sending £5 will help us do what we can to put a smile back on her face") they are often held up as "hero's" who strive to overcome their disability. Those that "overcome" their disability by doing something that disabled people aren't supposed to do - like sport, high level exercise, having a high powered job, smiling daily, sometimes just going outside and talking to people - are lauded as super-beings. Of course disability isn't that simple. It's not a case that we are all hero's nor are we all objects of pity. We can be both or neither or, frequently, a huge mix of everything in between. Just like non-disabled people. Yes we have access issues, yes sometimes our lives have more challenges than non-disabled peoples but that doesn't make us hero's for just getting on with our lives. In fact by assuming it does it either suggests that you buy into the myth disability is miserable or that disabled people just aren't as good as non-disabled people. Which brings me onto my final point...
They assume non-disabled people are better than disabled people.
The basic message is "If a disabled person can do it then anyone (and I mean anyone) can!". Do you see people putting up pictures of Usain Bolt saying if one non-disabled person can win an Olympic gold then any non-disabled person can? No. Why? Because it would be a stupid statement to make. Clearly, given all the people who fail to win an Olympic gold every year it's not that easy. We, as an audience, allow Bolt to have personal skill, talent and dedication to his sport above and beyond the levels the majority of us have and we celebrate him for that. We don't feel the need to use him as inspiration porn in the same manner we do disabled athletes. Why? Because it's hard to believe we could be better than Usain Bolt if we tried. Whilst apparently it's not hard to imagine we could be better than a disabled athlete, because at the end of the day, on some level we simply don't think disabled people are as good as non-disabled people.
That is why I don't like these things. They are insulting, ignorant and they prop up damaging myths about disability.
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| A picture of a quadruple amputee lifting weights with the caption "No excuses" |
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| A before and after becoming a body builder picture of an amputee with the caption "Excuses. Let's hear yours again" |
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| Young boy, a double above the knee amputee with running blades, running with the caption "Your excuse is invalid" |
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| This one has been doing the rounds again recently on facebook. A picture of a double just below the knee amputee using prosthetics rock-climbing. Normally shared with the caption "What's your excuse?" |
They assume people reading are non-disabled.
These messages all seem aimed at non disabled people which is an issue in itself. It shows that on some level they are "othering" disabled people. Here disabled people are inspiration, not audience. If you want to build a world where disabled people are treated as equals then that's not the way to do it.
If, on the other-hand, it's not assuming that it's audience is non-disabled then that's also a issue. These things are really insulting to disabled people who for one reason or another can't just pop out and climb a mountain and they place undue pressure on disabled people to conform to some heroic ideal. I'm going to talk more about these things in the rest of the post.
They forget there are many vaild reasons people can't do those things.
Money. All of us have to grapple with the cost of getting to venues, paying entrance fees/membership and buying equipment which is often prohibitively expensive. If you are disabled then extra costs like adapted prosthetics mobility equipment care also cost a lot of money. A decent all terrain electric wheelchair is at least £15,000, then you need a specialist car or a trailer to move it in... It all adds up to quite a lot before you factor in the costs of powerful, safe to use grappling hooks and strong rope so you can try your hand at mountain climbing.
Time. Turns out disabled people work and have social commitments, go figure. Finding the time to train to a high level isn't easy.
Location. I'm telling you now that even from a UK perspective a disabled person in London has a better chance of finding a local accessible gym than a disabled person living in the rural Scottish highlands.
Opportunity. It's great that some people know the right people or get lucky with charity support, but they are the exception to the rule.
Disability, yeah I went there. An amputee with running blades may well be able to run 200m. I, as a non-amputee with chronic pain who cannot walk 30m without being sick simply cannot run 200m, and as it stands will not be able to run 200m in the foreseeable future. I could do it in my wheelchair but that's not the message. The message is that just using a wheelchair isn't good enough, you need to go beyond that to be "normal" and to fully overcome disability.
These pictures often forget that disability is a social not medical construct.
Most of us, the UN included subscribe to the social model of disability or a variant of that. The social model states that disability is the result of having an impairment in an inaccessible society. In simpler terms it says being an amputee isn't what disables a person, it's not being able to access good prosthetics, wheelchairs, aids, adaptations, education, employment and health care. It's living in a society that on a institutional level thinks disabled people aren't as capable, moral, 'normal' as the rest of us. These pictures forget that to be in the position the young boy is, running on a good track, with expensive running blades one has to have a certain amount of social privilege. As this article explains, blade running isn't the reality for most amputees.
Disabled people are not there to inspire you.
It may surprise you but when I personally go down to the gym, swimming pool or even supermarket I'm not doing it to inspire non-disabled onlookers and to send a message that disabled people who aren't doing the same just aren't trying. I'm just living my life and doing what I want to. The same way you taking a trip to the shops isn't a statement other than "Hey, I need some milk so I'm going to buy some."
These just feed the "super-crip" stereotype.
The "super-crip" stereotype is fairly well known in disability circles, but if you don't know it I'll quickly explain. When disabled people are not being held up as objects of pity (see messages like "this poor girl suffers hourly with her impairment, sending £5 will help us do what we can to put a smile back on her face") they are often held up as "hero's" who strive to overcome their disability. Those that "overcome" their disability by doing something that disabled people aren't supposed to do - like sport, high level exercise, having a high powered job, smiling daily, sometimes just going outside and talking to people - are lauded as super-beings. Of course disability isn't that simple. It's not a case that we are all hero's nor are we all objects of pity. We can be both or neither or, frequently, a huge mix of everything in between. Just like non-disabled people. Yes we have access issues, yes sometimes our lives have more challenges than non-disabled peoples but that doesn't make us hero's for just getting on with our lives. In fact by assuming it does it either suggests that you buy into the myth disability is miserable or that disabled people just aren't as good as non-disabled people. Which brings me onto my final point...
They assume non-disabled people are better than disabled people.
The basic message is "If a disabled person can do it then anyone (and I mean anyone) can!". Do you see people putting up pictures of Usain Bolt saying if one non-disabled person can win an Olympic gold then any non-disabled person can? No. Why? Because it would be a stupid statement to make. Clearly, given all the people who fail to win an Olympic gold every year it's not that easy. We, as an audience, allow Bolt to have personal skill, talent and dedication to his sport above and beyond the levels the majority of us have and we celebrate him for that. We don't feel the need to use him as inspiration porn in the same manner we do disabled athletes. Why? Because it's hard to believe we could be better than Usain Bolt if we tried. Whilst apparently it's not hard to imagine we could be better than a disabled athlete, because at the end of the day, on some level we simply don't think disabled people are as good as non-disabled people.
That is why I don't like these things. They are insulting, ignorant and they prop up damaging myths about disability.
Friday, 3 May 2013
Thursday, 25 April 2013
The Dreaded Pink Form 2013
This week I received a copy of the "Dreaded Pink Form", also known as the ESA50 or Limited Capability for Work Questionnaire. I get one every 12 months and as it stands I will be getting one every 12 months until I'm claiming a pension or I'm dead. It's so the DWP can assess my fitness for work and decide if I should still get ESA. As my condition is only expected to degenerate this isn't something I personally feel is necessary. I could understand maybe once every 5 years if they want to keep checking but every 12 months? It's a waste of government money, my time and damaging to my mental health. Still, as all the major political parties think it is necessary I've got no choice but to acquiesce and protest about it.
The first time I filled in a ESA50 I was invited to attend a Work Capability Assessment (WCA) where health proffessionals working for a IT company called Atos assessed my fitness to work. Much to the surprise of everyone I knew, my doctors and the job centre they found me fit to work. They then used that decision to turn down my application for Disability Living Allowance (DLA). It took 18 months to get the decisions over turned. During that time my disability and the high cost of living with it didn't go away, I just wasn't entitled to any support to help me live with it. I fell into debt and depression. Fortunately for me the appeals tribunals were both less than 15mins from start to finish because of the abundance of evidence on my side. As a result of having to live through that nightmare I'm always very apprehensive about these forms because I know what could happen if something is misinterpreted.
It's not a one off either. Add to these questions the extra pressure added in by other changes to the process which include using imaginary wheelchairs and ignoring the overlap between cognitive/mental & physical health in this years ESA50's it all becomes extremely stressful.
The good thing to come ou of this pink form is it's reminded me that there is still a huge battle to be won with regards to ESA, and that where we may not win it all - at least not straight away - we can try to make some ground by trying to get the DWP to improve little bits of it's system. For example, changing it's questions so they are fairer and tally with the criteria being tested against.
I'm going to put my thinking cap on and try to work out how best to challenge the DWP on this score. Hopefully I'll be back with some ideas!
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| Picture of the ESA50 form. You can click on it to enlarge. |
It may sound a bit paranoid to suggest that they would try to purposefully trip up claimants, but as I think I can show that is precisely what this form does. It makes it very difficult to describe your condition and/or disability in a way that tallies with the criteria.
Take question 1, it asks how far you can move around without difficulty. The possible answers are; 50m, 100m, 200m or more and "It varies". Can you see the problem with that? What do you tick if you can't move more than 20m with difficulty? What do you tick if you can't move more than 1m? Do you choose the 50m category and look like you can move further or do you choose it varies and then hope they don't use the fact you said it varies to suggest the issue isn't a permanent one?
It's especially telling as one of the criteria to enter the support group is not being able to move 50m. By making it so that people in that situation don't have an easy "less than 50m" box to tick then people will be forced to tick a box that doesn't describe their situation adequately and could contribute to a decision not to award appropriate support. I ticked the 50m box last year even though I can manage a maximum of 30m with severe pain and associated vomiting or 1-2m without. I explained that in the box below and included a letter form my GP which said precisely that. They didn't place me in the support group until I wrote an appeal because it wasn't "clear" from my form that I couldn't walk 50m without pain.
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| A picture of question 1 in the ESA50 form. You can click on it to enlarge. |
The good thing to come ou of this pink form is it's reminded me that there is still a huge battle to be won with regards to ESA, and that where we may not win it all - at least not straight away - we can try to make some ground by trying to get the DWP to improve little bits of it's system. For example, changing it's questions so they are fairer and tally with the criteria being tested against.
I'm going to put my thinking cap on and try to work out how best to challenge the DWP on this score. Hopefully I'll be back with some ideas!
Tuesday, 23 April 2013
Saturday, 20 April 2013
The Real Impact of PIP on Social Care
I've just finished reading about how PIP (Personal Independence Payments) will impact on social care services and it was really shocking. Simon Duffy from the Centre for Welfare Reform writes;
Currently getting social care from your local council, can be like trying to squeeze blood from a stone. The level of disability that you must reach high that many in genuine need are turned away for not being "disabled enough" or they are turned away because the receive benefits like DLA which the council believes they can use to pay for care themselves. Those that do meet the standard often only receive about 8 hours of paid care a week with extra costs for much needed care being met by the disabled person or their families. This money, when not coming from personal wealth, comes the Independent Living Fund (ILF) - which is being scrapped - and Disability Living Allowance (DLA) - which is now being replaced by PIP. With council social care budgets being reduced by 33% many more disabled people in need of care will no longer be able to access care via social services which will leave them reliant on other sources of funding.
With the ILF gone, and there being a very high incidence of poverty associated with disability I hope you can see why access to the money from DLA, now becoming PIP is already and will be even more crucial when it comes to purchasing much needed social care. The kicker is that the government are planning to use the transition to PIP to cut the numbers currently receiving DLA by between 20-28%. They believe that figure is representative of those who are receiving DLA fraudulently (by which I mean people who's conditions have improved but who haven't told the DWP about it) or are simply not disabled enough to need the extra income. This figure seems to have been pulled out of the air. Regardless of the flawed ideology behind the changes the end result will be less money from DLA/PIP for disabled people to spend on care which means they will have to rely on the local council. Dr Simon Duffy explains;
Realistically, without getting extra funding from central government to make up the deficit, councils will have to respond by raising the bar regarding eligibility criteria. This will make it far harder for many disabled people to access much needed care. Without access to social care disabled peoples independence is sorely curtailed. For many of us social care means we can go to work, take part in everyday activities and live in our own homes. Taking that away will be devastating to the lives of many.
I believe that the government would have a far harder time justifying these cuts had they done a cumulative impact assessment first. A cumulative impact assessment is when they look at knock on costs (both financial and ethical) as well as savings of the total impact of all the cuts to disability related benefits and services. We are trying to put pressure on the government to produce a cumulative impact assessment via a e-petition, you can sign it by clicking this link.
References:
[1] Kennedy S (2012) Personal Independence Payment: an introduction. London, House of Commons Library.
[2] DWP (2012) Personal Independence Payment - Reassessment and Impacts. London, DWP
Notes on PIP's Impact on Social Care by Simon Duffy, Centre for Welfare Reform
Local councils spend a lot on social care for children and adults, in fact over 50% of their budgets are spent on it. Sadly, because it is where the most money is spent by already cash-strapped councils it is an area that is being hit hard by cuts. By 2015 local government is having it's budgets cut by around 40%, with an average of 33% of that falling on social care."The replacement of DLA with PIP will damage local communities by reducing the incomes of people in poverty, reducing charging income for social care and increasing the numbers entitled to social care. An average area will lose £7.5 million, but could add further costs of up to £11.25 million."
Currently getting social care from your local council, can be like trying to squeeze blood from a stone. The level of disability that you must reach high that many in genuine need are turned away for not being "disabled enough" or they are turned away because the receive benefits like DLA which the council believes they can use to pay for care themselves. Those that do meet the standard often only receive about 8 hours of paid care a week with extra costs for much needed care being met by the disabled person or their families. This money, when not coming from personal wealth, comes the Independent Living Fund (ILF) - which is being scrapped - and Disability Living Allowance (DLA) - which is now being replaced by PIP. With council social care budgets being reduced by 33% many more disabled people in need of care will no longer be able to access care via social services which will leave them reliant on other sources of funding.
With the ILF gone, and there being a very high incidence of poverty associated with disability I hope you can see why access to the money from DLA, now becoming PIP is already and will be even more crucial when it comes to purchasing much needed social care. The kicker is that the government are planning to use the transition to PIP to cut the numbers currently receiving DLA by between 20-28%. They believe that figure is representative of those who are receiving DLA fraudulently (by which I mean people who's conditions have improved but who haven't told the DWP about it) or are simply not disabled enough to need the extra income. This figure seems to have been pulled out of the air. Regardless of the flawed ideology behind the changes the end result will be less money from DLA/PIP for disabled people to spend on care which means they will have to rely on the local council. Dr Simon Duffy explains;
As I mentioned earlier, many are told they can't have social care because they get DLA. If only 5% of those who will be loosing DLA when it becomes PIP become eligible for social care then there will be a additional cost of £1.1m. If 25% become eligible then there will be an extra £5.6m cost and if 50% become eligible there will be an additional £11.25m cost. This means that councils could be loosing between £8.6m - £18.75m at a time when council budgets social care budgets are already stretched to breaking point."The government intends to reduce spending on DLA by PIP [1]. This changes will be phased in by 2018, by which time it will cut the incomes of disabled people by £1.5 billion [2]. This means that an average local authority, with a population of 300,000, will lose income that has been targeted at disabled adults of over £7.5 million. This will be a further blow to local economies. In addition it will inevitably have a further knock-on effect for the social care system."
Realistically, without getting extra funding from central government to make up the deficit, councils will have to respond by raising the bar regarding eligibility criteria. This will make it far harder for many disabled people to access much needed care. Without access to social care disabled peoples independence is sorely curtailed. For many of us social care means we can go to work, take part in everyday activities and live in our own homes. Taking that away will be devastating to the lives of many.
I believe that the government would have a far harder time justifying these cuts had they done a cumulative impact assessment first. A cumulative impact assessment is when they look at knock on costs (both financial and ethical) as well as savings of the total impact of all the cuts to disability related benefits and services. We are trying to put pressure on the government to produce a cumulative impact assessment via a e-petition, you can sign it by clicking this link.
References:
[1] Kennedy S (2012) Personal Independence Payment: an introduction. London, House of Commons Library.
[2] DWP (2012) Personal Independence Payment - Reassessment and Impacts. London, DWP
Notes on PIP's Impact on Social Care by Simon Duffy, Centre for Welfare Reform
Thursday, 4 April 2013
BBC Ouch Podcast
I took part in a BBC Ouch podcast along with the lovely Hannah Ensor of Stickman Crip's fame (who has a great taste in blog themes by the way). We chatted about welfare and social media and if you'd like to have a listen you can find it here: http://www.bbc.co.uk/blogs/ouch/2013/04/ouch_disability_talk_show_96_s.html
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