I call for a pause to reflect on the process of changing DLA to PIP because I fear for my life and that of all disabled people who rely on this allowance to maintain a life, work, family, faith and some independence.
I am a disability activist, you know one of those people who will complain, when facing discrimination, challenge inequality wherever I find it and advocate for other disabled people.
Oh one of those you might say, YES! one of those who believes in the human rights of every single person, those ‘rights’ so many take for granted as they have not had them taken away yet.
I have fought, and every step of the way its been a hard grinding fight, for twenty years for disabled people to be believed about their experiences of discrimination, hostility, harassment, abuse, hate crime, and for an appropriate response from society.
Within all this I also fight for myself as a wheelchair user who needs care to live independently.
One of those who rely on welfare benefits to live, to carry on having a family life, to practise my faith, to be safe and contribute to society in the ways I know I can manage.
Oh I hear it already, I am ‘burden on society’, ‘work shy’, a ‘fraudster’ and should have been ‘killed at birth’ I have been told this when attacked on a local high street, a man felt it was his right to shout and swear in my face that I was to be killed right there and then because I was a burden on society. Well he and others read it every day in the media and hear the words of government so why should they not also feel that its ok to say, and do, the same to those of us out and about?
I would love to get paid for the volunteering I do, for the contribution I have made to this society, for caring for my four children and 23 foster kids, for advocating and counselling, advising and supporting other disabled people.
But hey I am part of the Big Society, one of those who do all this for free, you know like David Cameron wants you all to do now.
I am qualified up to my eyeballs, have attempted to get paid work many times often just a couple of hours here and there as that’s all I can commit due to my body not being as active as my mind.
Most employers don’t want those who are sick, disabled a burden, work shy and fraudsters to work for them you know?
Now I face cuts in my personal care, the Independent Living Fund which funds half my care package is to be scrapped and I will only get 3 more years of such support, that’s if I still qualify of course.
To qualify for ILF you must be on the high rate care component of DLA and need more then £200 plus worth of care from your local authority.
But DLA is to be scrapped too and changed to Personal Independent Payments, PIP, the local authority has no money and will be implementing increased charges for care and cuts in care as soon as possible.
I will be reassessed for the sickness benefit I get and probably have this taken away and be put on Job Seekers Allowance, after all I should be in paid work you know.
It does not matter about my health issues, regardless I must be in PAID WORK!
Yet if I lose my care I cannot function, get up, get dressed, shop, socialise, practice my faith, in fact do nothing let alone be in paid work in some sort of ideal world where priority is given to sick and disabled people to get into work first before all those others sacked, made redundant, not sick, more experienced employees out there seeking work too.
I may get a basic income but I will have to jump through hoops, attend interviews, training and more and if I don’t ? Well I will be punished of course; I will be made to attend compulsory work and if I cannot due to being ill and in too much pain the benefit will be stopped.
What then? Well I suppose I could consider suicide like many others, or beg on the streets, will that make everyone happy?
Yet if I have no care support I cannot get up, dressed, eat, go out, and attend interviews or training. If I cannot afford to keep my electrical equipment running I will not be able to do anything, not even the little I do now.
But that does not matter I should make more effort as I am ‘work shy’, a ‘fraudster’ and a ‘burden on the state’ and ‘unsustainable’ as government ministers keep telling me.
So how will I survive? I will not.
But that’s ok too as then there will be less disabled people and we will save the government some money and all these incentives will have been shown to work as I, and so many others, will not exist.
And if we do manage to ‘exist’ it will be in residential care, or in bedsits, living on the scraps of funding society can ‘afford’ or deem reasonable for us to live on, we will return to begging on the streets then everyone will be happier as we will not be a ‘burden’ or a ‘fraudster’.
Yet once upon a time I had a dream, to own a home, have a career, travel and enjoy my retirement when the kids grew up.
I was in paid work, as was my partner, we contributed to society by it’s current definition.
But oops! One day my body gave out, my back ripped apart and I entered the world of spinal injury, chronic pain, nerve damage, incontinence, discrimination, inequality, prejudice and a society that sets up so many barriers each day its like climbing Mount Everest.
Overnight I was unable to move from a bed, lost my work, my foster children, my partner and myself.
I did not choose this, it happened to me, as so many illnesses and accidents do.
One day you may find you or a member of your family becomes sick or injured, be born too early or face being different.
Now I face increased poverty, for no matter what you think disabled people on benefits are not rich we struggle every day to live, exist, be safe.
I face repeated medical tests by unqualified people who will decide whether I am too ill/disabled or not to be in paid work. The well known and disastrous ESA looms over me each day.
It makes no difference my Nuerologist, Neurosurgeon, Pain Consultant, Physiotherapist, Professor of Urogynaecolgy, Social Workers, Occupational Therapists all evidence I cannot sustain paid employment. This evidence will not even be read!
It’s all down to a 20 minute tick box test by people who have no understanding of my medical conditions and the impact they have on my life.
I face serious cuts in my care package, lose the five personal assistants I employ to help me and lose my wheelchair adapted car.
Now I face the loss of DLA
Losing DLA, any aspect of it, which was meant to help with some of the extra costs of being a disabled person would have a disastrous impact on my life.
Disability Living Allowance enables me to have a specially adapted wheelchair accessible vehicle so I can participate in life. My pain levels too high to manage on public transport which is still far too inaccessible to most disabled people. I can visit my elderly mum, my grandchildren, go shopping, you know all the things others take for granted.
I will also lose my entitlement to extra care support via the ILF and Local Authority, as half the care component of DLA goes in charges for care I get very little actually cash. This cash is absorbed by increased cost of fuel to heat my home and enable my electrical equipment to work, like my hospital bed, recliner chair, wheelchair, nebuliser, door opener, intercom system, internal wheelchair lift. Let alone the other extra cost I face of paying for the impact of carers in my home all day using my facilities and resources.
Once I fail the ESA medical, which most do, I will become one of the invisible disabled, those not on anyone’s radar. I will face sanctions for not complying with job seeking requirement’s and lose even more of the pittance I am meant to survive on.
I will lose myself again.
Not due to an injury that was no ones fault but due to a society that is allowing a government to implement the most discriminatory harshest attacks on disabled people this generation has faced.
A society that is allowing those who can fight least to be targeted as the scapegoats for the financial mess they and the succeeding governments got us into.
Yes you, and you and you, all of you who stand by and say nothing or encourage such vicious and undeserving attacks are just as responsible for what is happening.
Those who stand by are as guilty as this government is of these attacks on sick and disabled people.
Too harsh for you?
Its our lives we are fighting for, our very lives, some have already killed themselves due to what is happening, many more are considering it.
Will you stand by and allow this government to allow sick and disabled people to be the target of these most vicious attacks on our independence and human right to a life?
Or will you, those of you whose voice can be heard speak on our behalf, make a stand and say NO! NOT IN MY NAME
We will not stand idly by whilst the lives of sick and disabled people are so demeaned, be viewed so worthless, that many would rather die then continue fighting a continual state of oppression, and those that resist find they are made sicker, less able to contribute or be an active part of society because they are tortured, by the state, through repeated medical assessments again and again and again even when they have just won an appeal they will then be called for yet another assessment costing the state millions of pounds, wasting millions of pounds that instead could enable disabled people to remain part of society and have some quality of life.
For it feels like we are being oppressed, worth less and less, demeaned, vilified, the lowest of the low not worth supporting or enabling.
Will you support such oppression or will you make a stand?
Will you say loud and clear NOT IN MY NAME!
Anne Novis MBE