Here is a copy of a mesage we just received from Baroness Campbell. I'm too tired to tweak and make this shiny, so if you can just leave your opinions in the comments thread, it would be much appreciated :
"As you will see from yesterday we talked about the importance of language. So I'm thinking of challenging the title PIP. I think it should remain Disability Living Allowance, after all that's what it's about, disabled People's extra cost of living. It shouldn't not based on independence (defined by professionals) conditionality.
The condition that one should become "personally independent", which is likely to be defined in a medical model way, will not result in the independence disabled People have demanded over the years (i.e. independent living is about having choice and control over your life like that of non disabled people.
It includes all things in your life like work, education, raising your family, leisure, personal mobility etc) If the government want to continue encouraging us take responsibility over our lives, then they must give us the right to make our own decisions as to how DLA money should be spent.
It must not be measured by able-bodied people's assumptions as to what it is to be independent. Could you ask your networks what they think. I believe disabled people want to keep disability living allowance as a universal allowance.
We want to continue the principle that once you become eligible it is left up to you (personal responsibility) as to how you spend it to minimising the extra costs of being a disabled person, therefore we shouldn't be constantly reassessed as to how our so called independence is going. I'm thinking of demanding we keep the language that means disability living. And as we know, living must be defined by the person whose life it is. (Disabled people are the experts in their own situation)
I could put this down as an amendment, but I need support from the outside world, to make it important and powerful.
"As you will see from yesterday we talked about the importance of language. So I'm thinking of challenging the title PIP. I think it should remain Disability Living Allowance, after all that's what it's about, disabled People's extra cost of living. It shouldn't not based on independence (defined by professionals) conditionality.
The condition that one should become "personally independent", which is likely to be defined in a medical model way, will not result in the independence disabled People have demanded over the years (i.e. independent living is about having choice and control over your life like that of non disabled people.
It includes all things in your life like work, education, raising your family, leisure, personal mobility etc) If the government want to continue encouraging us take responsibility over our lives, then they must give us the right to make our own decisions as to how DLA money should be spent.
It must not be measured by able-bodied people's assumptions as to what it is to be independent. Could you ask your networks what they think. I believe disabled people want to keep disability living allowance as a universal allowance.
We want to continue the principle that once you become eligible it is left up to you (personal responsibility) as to how you spend it to minimising the extra costs of being a disabled person, therefore we shouldn't be constantly reassessed as to how our so called independence is going. I'm thinking of demanding we keep the language that means disability living. And as we know, living must be defined by the person whose life it is. (Disabled people are the experts in their own situation)
I could put this down as an amendment, but I need support from the outside world, to make it important and powerful.
Actually, thinking about it, I personally don't like the term PIP. I am uncomfortable in the Govt. attempting to reframe the experience of disability when they have shown a blatant disregard of the views, opinions & needs of their disabled constituents. As shown by the Papworth Trust's survey, DLA is used in order to live & the reality is that it's needed for food, fuel & transport. The amount of DLA that is awarded, for instance, for someone who needs care during the night is a saving for society, it is not enough to purchase the care that it was replacing when the emphasis shifted to living in the community. Further cuts that are to be implemented in a rebranding and restructuring of disability benefits with a rhetoric that ignores the interdependence and value of all members of the community - will damage the lives of many, place carers under intolerable stress & increase anxiety, which will make people ill. This is more costly, dehumanizing and does not take into account the cuts in services, housing and care that people are already having to fight against.
ReplyDeleteI really prefer the DLA name to PIP. I use my DLA (Higher Rate Mobility) to fund my taxis. I used to have a Motability car but had to give it up when my medication meant I felt unsafe driving. I don't use all my money each week for taxis. When I don't use all my money on taxis it gets put into my general pool of stuff I need to pay for because I'm disabled. Things like maintaining my mobility scooter, paying for a rollator, buying a step to get into the bath, buying a stool to sit on while taking a shower ad infinitum. The costs of being disabled are never easy to quantify on a regular basis. Sometimes you have a massive hefty bill to pay, like when your scooter blows up on you. Other times you can't go out because you are feeling rubbish so the money doesn't get spent on taxis that week. It all sort of balances out and it would be hard to specify where a fixed amount should go at any one time.
ReplyDeleteQuick comment - more later, I need to pop out on an errand, but 'Personal Independence Payments' might as well be named Personal _D_ependence Payments; given the attitudes predominating within government and DWP over the past couple of parliaments.
ReplyDeleteI fully agree. Those people who have no sense of empathy about what it means to be independent or not as a disabled person need to spend time with real disabled people and try and see the world and its challenges from their perspective. Doctors and carers and the disabled people themselves are the ones best able to say what their needs are if the intent of this bill is to really help people instead of actually denying that help and that independence needed. I think it should remain as the DLA too as the name being proposed is politically loaded
ReplyDeleteI use my Dla to keep my car on the rd, with out my car I would not be able to go out and be independent as Much as I can be with Cfs,fibromyalgia,asthma, if that you call being independent as I would not be able to go any where if I did not have my car,with fibromyalgia you have good days and bad days,but even in a good day you have to be very careful that you do not do to much as if you do to much that is you in bed for the next four days or so as that is you having a flare up,and with cfs it is not normal tiredness it is fatigue no energy at all,you see things needing done but you have no energy at all, I would not call that independent, so days you are so fatigued and sore you are not able to lift your head of the pillow never mind able to go out in my car even if I wanted to do,I would love to see prime minister cope with a month of having fibromyalgia or cfs or both,then he would see how independent he would feel as these disabilities come with a few other things ie migraines,ibs,tender points,depression,insomnia,flu like symptoms,blurred vision,tennis elbow, sore muscles etc, so no I am not independent I can not just click my fingers and decide just to go and do something shopping,dancing,go for a walk,have a shower etc I have to wait and see what type of day I am have to wait when I waken in the morning that is that I have managed to get to sleep with the pain or insomnia, I can not make plans that I can say I will be at a certain place in a week time or even the next day,
ReplyDeleteI think the Baroness is right. Personal Independence Payment is a bad name for a benefit that is replacing Disability Living Allowance. Sorry can't say more - as not up to thinking clearly this morning! :-( But I would definitely support the Baroness' suggestion.
ReplyDeletedefinitely DLA
ReplyDeleteAnd I'd also add that cutting benefits because you've already bought a wheelchair/scooter/whatever - that miraculously never wears out or needs repair and which, even more miraculously, takes you on buses and up stairs while taking no more room than a person standing up - should only be considered in a novel.
As a person with Mental Health issues my DLA is mainly the care component and I am very worried about losing this money as I need it for daily living such as having to get my shopping delivered as I find it difficult going into supermarkets because I get so stressed that I get attacks of distrssing IBS. I am very rarely able to cook properly so spend more money having more expensive ready meals, also I am becoming unsafe on my bike as I get confused about traffic lights and have problems with buses so use taxis. But will anyone understand this as I look OK?
ReplyDeleteI said 'more later', I didn't mean a week later, but I hadn't planned on coming down with some bug ::(
ReplyDeleteI'm drawn to the view that the Tories want to change Disability Living Allowance to Personal Independence Payment because it takes away the emphasis on disability, and it's much easier to slander a benefit claimant as an undeserving scrounger if you don't have to mention their disability. If they change DLA to PIP, then we'll have to fight that much harder next time to get the public to understand that these are cuts to a benefit disabled people depend on, not one that allows us some sort of luxurious independence. And when I think about it that way, I suddenly understand why Incapacity Benefit became ESA...