One Month Before Heartbreak
Apologies in advance to my ‘regular’ readers - this is not a fandom-based entry. This is an entry about disability, and about what being disabled means to and for me.
It’s taken a long time to write this entry, and it’s highly personal. Please respect that. The opinions I’ve stated here are my own, often informed by discussions on blogs and forums, but I do not pretend to speak for everyone, or even anyone other than myself.
Today is One Month Before Heartbreak, set up by the organisation The Broken of Britain to try to get across the message of thousands of disabled people across the country - people who are facing cuts that are arguably more vicious than any faced by anybody else.
Disability Living Allowance - DLA - is a non-means-tested benefit for disabled people to help them with the extra costs of those disabilities. These might be obvious: a wheelchair, or other mobility aids. They may not be: extra heating is essential for many, and you can get through a large amount of clothing if you fall over all the time (wear and tear gets a new meaning).
Disability Living Allowance is paid in two components:
- Mobility, higher and lower rates: for these you must have generally a physical disability, and for the higher rate be unable or virtually unable to walk, or walking must be so detrimental to your health that you are considered unable or virtually unable to walk.
- Care, higher, medium and lower rates: for these you must have care needs such as needing help to get out of bed or a chair, to dress or undress, to bathe or use a toilet, help communicating with others, be a danger to yourself or others if unattended, be at risk of falling or fainting, have blackouts or seizures, etc.
To gain any rate of DLA at all you must fill in a form that is over 50 pages long. Your GP must fill in a section. Physiotherapists, occupational therapists, consultants, surgeons, psychiatrists, anyone concerned with your case must be consulted and give you their support. A face-to-face medical is arranged. And benefits awards are usually for 1-3 years - some people with debilitating conditions are awarded components for life, but these are subject to periodic review at the Department of Work and Pensions’ discretion.
The current government - and I do not excuse the Labour government for their part in laying the groundwork for this - is setting out reforms to the welfare system (as well as elsewhere). Child benefit is ending for higher rate tax payers. Benefits are being rolled into one Universal Credit. Housing benefit is being capped at a lower rate.
But for some - people across the country with disabilities or long-term illnesses - the cuts are worse. Mobility component has been removed from all people in state-funded care homes. Independent Living Fund, which enables about 22,000 people to live independently who would otherwise be in care homes, is being closed. And DLA is being scrapped.
Yes, it is being replaced - with a new ‘Personal Independence Payment’, or PIP. So what’s the problem? The problem is the contents of the consultation paper on DLA/PIP, the lack of media attention, and the fact that the DWP has specifically stated that they aim to cut 20% of the DLA caseload.
Bear in mind that the DWP’s own figures show that 0.5% of DLA cases are fraudulent. 0.5%. That is a tiny percentage by anyone’s standards.
So where are these savings going to come from? Changing the goalposts. When PIP comes in, disability is going to mean something new.
So. Within this political situation, there is me.
I have ME - Myalgic Encephalopathy. It’s sometimes known as Chronic Fatigue Syndrome, although that tends to include chronic fatigue, which is often a different thing entirely. ME is a neurological condition that is primarily known for causing extreme fatigue. My list of symptoms includes fatigue, post-exercise malaise, extremely poor temperature control, joint pain, lack of concentration, poor short term memory and insomnia. I also have vasovagal syncope, which means at any given moment when standing or walking I am liable to drop to the ground (we call them drop attacks), conscious but unable to move for several moments.
Looks like a nice list, doesn’t it? But what these things mean for me is that I sleep from maybe 1.30am to about 12 midday, if I’m lucky. It takes me about an hour to wake up because it takes a long time for my brain to engage, and for me to feel physically up to getting out of bed. I never ever have the energy to shower or bath more than once every 3 days (and I shower sitting on a shower stool, because standing for more than a few minutes is too tiring). I will spend most of the day very, very cold: my hands and feet particularly are so cold that they’ve been described as ice blocks. I can’t sit still for long because my knees and hips start to ache, but I can’t move about too much because I’m too tired. I can’t concentrate on reading or writing for long - at the moment I’m lucky to get a ten minute stretch, and I can only repeat that two or three times a day.
If I have to go out, I am taken out by my mother or my carer - and I don’t go out often. There’s all sorts of things to consider that able-bodied people take for granted, not just the sheer energy involved in walking about: noise and light stimuli, being unable to sit comfortably, being unable to control my temperature, having to interact with people who don’t know that if I trail off in the middle of a sentence it’s because I’m too tired to form the words. And of course there’s the drop attacks, which are dangerous for me - if it happens when I’m crossing a road, for example, or if I hit my head - but also make me the centre of attention, something that’s extremely uncomfortable. I do now have a wheelchair, and I use it for longer trips that are absolutely necessary - such as hospital visits where I know there’s endless corridors to navigate. I cannot propel myself, so I can never use the wheelchair to go out independently.
The most I can do in terms of cooking is heating up something: again, it’s too much energy, and too dangerous for me to be standing by the oven or the stove. It’s often a choice between heating up a soup or eating it - because even the motion of lifting a spoon to my mouth repeatedly is, on occasion, simply too much for me.
For me, ME is not only an illness it is a disability. I am disabled. I spend the majority of my life confined to my bed or to the only chair I can get comfortable in, an armchair. I do not look disabled - in fact unless I have a drop attack, the only people to whom I even look ill are my closest friends and family. My mother is able to look at me and know that I’ve overdone it - she says I have a grey, ghost-like look. But a stranger on the street? A doctor I don’t know? No. And of course when I am feeling a little better, that’s when people see me - on the days when I feel well enough to attempt the short walk to the post box at the end of the road, perhaps the rare occasion when my mother or my carer takes me to the cinema, or if someone pops in for a cup of tea and I brighten up. Of course I do - I’m seeing someone other than my mother or carer! They don’t see what happens afterwards: the way I literally cannot speak, cannot stand because my legs are too wobbly, the hours I spend curled up unable to communicate with the world.
Back to DLA. As I said, it’s a non-means-tested benefit to help with the additional costs of being disabled. Many, many people are enabled to work through having this benefit - it can, for example, be used to buy or lease a Motability vehicle, be that car, electric wheelchair or scooter, which for many people is the only way they can get out of the house. I can’t work, and have never been able to work apart from occasional, casual babysitting - I started getting ill when I was 11, and I’m now nearly 24. I can’t live independently either, so I’m very lucky to have a supportive mother. If I hadn’t been able to remain at home (and I do give at least half of my benefit to my mother to cover my living costs), I have no doubt that I would have ended up hospitalised several times over.
I get DLA. I get the higher rate of mobility because there are more days than not where I am unable to walk more than a few metres without experiencing severe fatigue, and because whenever I do walk I am at risk of falling/fainting. I get the medium rate of care because I cannot cook or prepare myself a main meal, need help to communicate with others (including doctors, etc), sometimes need help to get to the bathroom (either for toilet or bathing needs). For medium rate I am judged to need some care during the night (for higher rate it needs to be constant care): for me this means that I need someone occasionally during the night to make sure I don’t injure myself when going to the bathroom.
I don’t need to account for what I spend the DLA on, but these are some of the additional costs that I incur as a disabled person, for which DLA is not only invaluable it is absolutely essential:
- extra heating costs - as I explained, I spend far too much of the time freezing cold even with the heating on a high enough temperature for everyone else in the house to be shedding layers!
- extra electricity - running fans in the summer, extra loads of laundry because I have sweating episodes, an additional freezer so my mother can cook and freeze portions of food for me to heat up for lunch.
- clothing - I get through trousers quickly because I fall and my knees get a beating, I wear a lot of thermal clothing, multiple pairs of warm clothing like hats, scarves, fingerless gloves and dressing gowns so there’s always something at hand whether in my bedroom or downstairs
- internet and computer costs - my laptop and internet connection is quite literally the way I communicate with the world. Without them I am completely cut off. It means I can talk to friends (typing is never as tiring as speaking, although I never guarantee that I’m making sense!). It also means I am able to study part-time and very, very slowly with the Open University, in the hopes that one day when I am (hopefully) better I will at least have a qualification.
- extra phone costs - despite what common sense might suggest, all benefits lines are expensive 0845 numbers which cost a fortune and take forever to get through on.
- taxis for when going out is unavoidable but neither my mother nor my carer can take me.
There are others, and other people have different costs. There are some things I attribute to my disability costs that others might not, or might object to - I indulge in a Lovefilm subscription, for example, because I love watching films but can rarely get to the cinema. I struggle to concentrate on films, particularly ones I’ve not seen before, but when I can, it gives me great pleasure.
In short, DLA enables me to cover the costs of my disability - as it is meant to do. However I, and many many others in receipt of DLA are absolutely terrified by what the government is proposing. To cut 20% of the caseload of a benefit with an 0.5% fraud rate can only mean that they are changing the goalposts on what it means to be disabled, and for someone like me, whose disability is a long-term health condition (and ME, as you may know, is currently diagnosed by exclusion - there’s no test I can point to and say ‘there, I have it, I have proof’), that prospect is a terrifying one.
The DWP says that DLA is a barrier to work for some people: many disabled people can only work because of DLA. The DWP says that people on DLA have lower work expectations than people not on it: of course we have lower work expectations. Many disabled people are quite simply too disabled or ill to work; many others are unable to work because of prejudice and a lack of opportunity. The government is cutting the Access to Work scheme, which helped employers pay for adjustments such as building access, wheelchairs, ergonomic desk and chair set-ups - adjustments which have been crucial to enabling disabled people to work. No matter what the government says, the truth is that people with disabilities or long-term health conditions have much more trouble finding a job than people without those ‘barriers’.
Unlike students, disabled people can’t protest; even if we could, many of us (myself included) are afraid to. What if, I think, I ask my carer to take me to a local protest, in a wheelchair, and someone sees me and decides to report me as fraudulent? The media seems eager to label all benefits recipients as cheats and scroungers, something which the government has encouraged (see Iain Duncan Smith’s comments in The Sun where he stated that people on Incapacity Benefit caused the deficit). And this, I suspect, is exactly what the government is counting on: that disabled people are too scared to protest, or unable to do so. Even if I weren’t worried about being told that if I can protest, I’m not disabled, there is the factor of my very disability - I simply don’t have the energy to go and march the way students can. And being in a kettle would, for me, end up with me in hospital.
But we are not silent. Today is about making our stories known, making it clear that there isno economic reason to ‘reform’ or cut DLA. It is a benefit that is fit for purpose, it is a benefit that has transformed lives, and we may not be able to protest the traditional way, but we won’t go down without a fight.
There are things you can do to help, if you wish. The Broken of Britain have a number of links, including a petition you can sign.
They also have links to template letters to send to Maria Miller, Minister for Disabled People, and your MP.
Google ‘DLA reform’ for other links and information.
The consultation document is available here - it’s a long read, but for anybody who is disabled or knows /cares for someone who is disabled, it’s essential.
I am disabled. But I am not a scrounger; I will not be swept under the carpet; I am a person, every bit as valuable as any other person.
It’s taken a long time to write this entry, and it’s highly personal. Please respect that. The opinions I’ve stated here are my own, often informed by discussions on blogs and forums, but I do not pretend to speak for everyone, or even anyone other than myself.
Today is One Month Before Heartbreak, set up by the organisation The Broken of Britain to try to get across the message of thousands of disabled people across the country - people who are facing cuts that are arguably more vicious than any faced by anybody else.
Disability Living Allowance - DLA - is a non-means-tested benefit for disabled people to help them with the extra costs of those disabilities. These might be obvious: a wheelchair, or other mobility aids. They may not be: extra heating is essential for many, and you can get through a large amount of clothing if you fall over all the time (wear and tear gets a new meaning).
Disability Living Allowance is paid in two components:
- Mobility, higher and lower rates: for these you must have generally a physical disability, and for the higher rate be unable or virtually unable to walk, or walking must be so detrimental to your health that you are considered unable or virtually unable to walk.
- Care, higher, medium and lower rates: for these you must have care needs such as needing help to get out of bed or a chair, to dress or undress, to bathe or use a toilet, help communicating with others, be a danger to yourself or others if unattended, be at risk of falling or fainting, have blackouts or seizures, etc.
To gain any rate of DLA at all you must fill in a form that is over 50 pages long. Your GP must fill in a section. Physiotherapists, occupational therapists, consultants, surgeons, psychiatrists, anyone concerned with your case must be consulted and give you their support. A face-to-face medical is arranged. And benefits awards are usually for 1-3 years - some people with debilitating conditions are awarded components for life, but these are subject to periodic review at the Department of Work and Pensions’ discretion.
The current government - and I do not excuse the Labour government for their part in laying the groundwork for this - is setting out reforms to the welfare system (as well as elsewhere). Child benefit is ending for higher rate tax payers. Benefits are being rolled into one Universal Credit. Housing benefit is being capped at a lower rate.
But for some - people across the country with disabilities or long-term illnesses - the cuts are worse. Mobility component has been removed from all people in state-funded care homes. Independent Living Fund, which enables about 22,000 people to live independently who would otherwise be in care homes, is being closed. And DLA is being scrapped.
Yes, it is being replaced - with a new ‘Personal Independence Payment’, or PIP. So what’s the problem? The problem is the contents of the consultation paper on DLA/PIP, the lack of media attention, and the fact that the DWP has specifically stated that they aim to cut 20% of the DLA caseload.
Bear in mind that the DWP’s own figures show that 0.5% of DLA cases are fraudulent. 0.5%. That is a tiny percentage by anyone’s standards.
So where are these savings going to come from? Changing the goalposts. When PIP comes in, disability is going to mean something new.
So. Within this political situation, there is me.
I have ME - Myalgic Encephalopathy. It’s sometimes known as Chronic Fatigue Syndrome, although that tends to include chronic fatigue, which is often a different thing entirely. ME is a neurological condition that is primarily known for causing extreme fatigue. My list of symptoms includes fatigue, post-exercise malaise, extremely poor temperature control, joint pain, lack of concentration, poor short term memory and insomnia. I also have vasovagal syncope, which means at any given moment when standing or walking I am liable to drop to the ground (we call them drop attacks), conscious but unable to move for several moments.
Looks like a nice list, doesn’t it? But what these things mean for me is that I sleep from maybe 1.30am to about 12 midday, if I’m lucky. It takes me about an hour to wake up because it takes a long time for my brain to engage, and for me to feel physically up to getting out of bed. I never ever have the energy to shower or bath more than once every 3 days (and I shower sitting on a shower stool, because standing for more than a few minutes is too tiring). I will spend most of the day very, very cold: my hands and feet particularly are so cold that they’ve been described as ice blocks. I can’t sit still for long because my knees and hips start to ache, but I can’t move about too much because I’m too tired. I can’t concentrate on reading or writing for long - at the moment I’m lucky to get a ten minute stretch, and I can only repeat that two or three times a day.
If I have to go out, I am taken out by my mother or my carer - and I don’t go out often. There’s all sorts of things to consider that able-bodied people take for granted, not just the sheer energy involved in walking about: noise and light stimuli, being unable to sit comfortably, being unable to control my temperature, having to interact with people who don’t know that if I trail off in the middle of a sentence it’s because I’m too tired to form the words. And of course there’s the drop attacks, which are dangerous for me - if it happens when I’m crossing a road, for example, or if I hit my head - but also make me the centre of attention, something that’s extremely uncomfortable. I do now have a wheelchair, and I use it for longer trips that are absolutely necessary - such as hospital visits where I know there’s endless corridors to navigate. I cannot propel myself, so I can never use the wheelchair to go out independently.
The most I can do in terms of cooking is heating up something: again, it’s too much energy, and too dangerous for me to be standing by the oven or the stove. It’s often a choice between heating up a soup or eating it - because even the motion of lifting a spoon to my mouth repeatedly is, on occasion, simply too much for me.
For me, ME is not only an illness it is a disability. I am disabled. I spend the majority of my life confined to my bed or to the only chair I can get comfortable in, an armchair. I do not look disabled - in fact unless I have a drop attack, the only people to whom I even look ill are my closest friends and family. My mother is able to look at me and know that I’ve overdone it - she says I have a grey, ghost-like look. But a stranger on the street? A doctor I don’t know? No. And of course when I am feeling a little better, that’s when people see me - on the days when I feel well enough to attempt the short walk to the post box at the end of the road, perhaps the rare occasion when my mother or my carer takes me to the cinema, or if someone pops in for a cup of tea and I brighten up. Of course I do - I’m seeing someone other than my mother or carer! They don’t see what happens afterwards: the way I literally cannot speak, cannot stand because my legs are too wobbly, the hours I spend curled up unable to communicate with the world.
Back to DLA. As I said, it’s a non-means-tested benefit to help with the additional costs of being disabled. Many, many people are enabled to work through having this benefit - it can, for example, be used to buy or lease a Motability vehicle, be that car, electric wheelchair or scooter, which for many people is the only way they can get out of the house. I can’t work, and have never been able to work apart from occasional, casual babysitting - I started getting ill when I was 11, and I’m now nearly 24. I can’t live independently either, so I’m very lucky to have a supportive mother. If I hadn’t been able to remain at home (and I do give at least half of my benefit to my mother to cover my living costs), I have no doubt that I would have ended up hospitalised several times over.
I get DLA. I get the higher rate of mobility because there are more days than not where I am unable to walk more than a few metres without experiencing severe fatigue, and because whenever I do walk I am at risk of falling/fainting. I get the medium rate of care because I cannot cook or prepare myself a main meal, need help to communicate with others (including doctors, etc), sometimes need help to get to the bathroom (either for toilet or bathing needs). For medium rate I am judged to need some care during the night (for higher rate it needs to be constant care): for me this means that I need someone occasionally during the night to make sure I don’t injure myself when going to the bathroom.
I don’t need to account for what I spend the DLA on, but these are some of the additional costs that I incur as a disabled person, for which DLA is not only invaluable it is absolutely essential:
- extra heating costs - as I explained, I spend far too much of the time freezing cold even with the heating on a high enough temperature for everyone else in the house to be shedding layers!
- extra electricity - running fans in the summer, extra loads of laundry because I have sweating episodes, an additional freezer so my mother can cook and freeze portions of food for me to heat up for lunch.
- clothing - I get through trousers quickly because I fall and my knees get a beating, I wear a lot of thermal clothing, multiple pairs of warm clothing like hats, scarves, fingerless gloves and dressing gowns so there’s always something at hand whether in my bedroom or downstairs
- internet and computer costs - my laptop and internet connection is quite literally the way I communicate with the world. Without them I am completely cut off. It means I can talk to friends (typing is never as tiring as speaking, although I never guarantee that I’m making sense!). It also means I am able to study part-time and very, very slowly with the Open University, in the hopes that one day when I am (hopefully) better I will at least have a qualification.
- extra phone costs - despite what common sense might suggest, all benefits lines are expensive 0845 numbers which cost a fortune and take forever to get through on.
- taxis for when going out is unavoidable but neither my mother nor my carer can take me.
There are others, and other people have different costs. There are some things I attribute to my disability costs that others might not, or might object to - I indulge in a Lovefilm subscription, for example, because I love watching films but can rarely get to the cinema. I struggle to concentrate on films, particularly ones I’ve not seen before, but when I can, it gives me great pleasure.
In short, DLA enables me to cover the costs of my disability - as it is meant to do. However I, and many many others in receipt of DLA are absolutely terrified by what the government is proposing. To cut 20% of the caseload of a benefit with an 0.5% fraud rate can only mean that they are changing the goalposts on what it means to be disabled, and for someone like me, whose disability is a long-term health condition (and ME, as you may know, is currently diagnosed by exclusion - there’s no test I can point to and say ‘there, I have it, I have proof’), that prospect is a terrifying one.
The DWP says that DLA is a barrier to work for some people: many disabled people can only work because of DLA. The DWP says that people on DLA have lower work expectations than people not on it: of course we have lower work expectations. Many disabled people are quite simply too disabled or ill to work; many others are unable to work because of prejudice and a lack of opportunity. The government is cutting the Access to Work scheme, which helped employers pay for adjustments such as building access, wheelchairs, ergonomic desk and chair set-ups - adjustments which have been crucial to enabling disabled people to work. No matter what the government says, the truth is that people with disabilities or long-term health conditions have much more trouble finding a job than people without those ‘barriers’.
Unlike students, disabled people can’t protest; even if we could, many of us (myself included) are afraid to. What if, I think, I ask my carer to take me to a local protest, in a wheelchair, and someone sees me and decides to report me as fraudulent? The media seems eager to label all benefits recipients as cheats and scroungers, something which the government has encouraged (see Iain Duncan Smith’s comments in The Sun where he stated that people on Incapacity Benefit caused the deficit). And this, I suspect, is exactly what the government is counting on: that disabled people are too scared to protest, or unable to do so. Even if I weren’t worried about being told that if I can protest, I’m not disabled, there is the factor of my very disability - I simply don’t have the energy to go and march the way students can. And being in a kettle would, for me, end up with me in hospital.
But we are not silent. Today is about making our stories known, making it clear that there isno economic reason to ‘reform’ or cut DLA. It is a benefit that is fit for purpose, it is a benefit that has transformed lives, and we may not be able to protest the traditional way, but we won’t go down without a fight.
There are things you can do to help, if you wish. The Broken of Britain have a number of links, including a petition you can sign.
They also have links to template letters to send to Maria Miller, Minister for Disabled People, and your MP.
Google ‘DLA reform’ for other links and information.
The consultation document is available here - it’s a long read, but for anybody who is disabled or knows /cares for someone who is disabled, it’s essential.
I am disabled. But I am not a scrounger; I will not be swept under the carpet; I am a person, every bit as valuable as any other person.