Sep 042016

What I find worst about this is it’a a mainly Labour Party council. Shocking.

My beloved friends, most of you know that I have been battling my local council NOT to cut the essential care support I need to maintain my independence & social inclusion. Their drastic cuts will leave me virtually housebound: with just enough care to get me up in the morning & be put to bed at night & have a quick meal at midday and one short toilet break a day, as well as just enough care to go out once a week and 25 minutes a day for help with dish washing, household cleaning, laundry, shopping, etc., and absolutely none for help with showering & other personal care or for food prep & cooking, or anything else. They suggest I purchase ready made, microwavable meals via the internet instead – something I simply cannot afford and even if I could, due to my complex disabilities it would not meet my nutritional needs and would result in my condition deteriorating rapidly, as being made housebound would too.

Just to update you all on the current situation…. Following the council’s reassessment in November I had a follow up meeting with Social Services on the 9th of June 2016 at which this happened & this is how it left me feeling.

As with the attached post that I shared last year in June before the ILF was closed, letting you know the council was proposing I use incontinence pads fo up to 12 hours a day, instead of using the toilet when I needed it, my account following this last visit from Social Services is about the traumatising effects of it all and it is deeply personal and very exposing, but despite my normally being an extremely private person & wanting to guard my privacy & confidentiality as much as I possibly can, I felt compelled to share my story to stop the dehumanising cuts and statistics & figures allowing the devastating and deeply traumatising & damaging human impact of all the cumulative cuts, austerity measures and welfare reforms, including the ILF closure, to be overridden & ignored and hidden. Thus I plucked up the courage to read this extremely personal account out at the end of my talk at Glastonbury Festival (official) about the ‘Disability Rights Massacre’ which is occurring in the UK, after which I was urged me to speak about it once again at the festival and to also take my talk to other festivals too, in order to raise a lot more and very much needed additional awareness, which I duly did.

The closure of the ILF is affecting over 18,000 people; I am just one of them.

“Last month, the amazing Ellen Clifford from Inclusion London, sat beside me, as my advocate, when I met with my Social Worker, who had supposedly come to meet me in order to go over the re-assessment Social Services had conducted following his original, very flawed assessment, to address all my questions and concerns regarding it and to correct all the inaccuracies it contained, but he proceeded to tell me that a panel discussion had already taken place and that the panel’s suggestions were to be implemented in a month’s time: a cut of 46 hours a week, from the 9th of July!

The Panel’s suggestions it seems also included that once the new care hours commenced, that a team of people would attend and observe, over several days, maybe even a couple of weeks(!), my every action during the new care times they say I will have, and the actions of my personal assistants too, from my going to the toilet and having a shower, to eating and to getting in & out of my wheelchair and bed etc., so that they could check if the new levels of care being prescribed was actually going to meet my needs. And I must accept this incredible, humiliating, dehumanising invasion of my privacy & home, this stripping away of every last vestige of my dignity, as it is up to these people to decide if the care hours are sufficient, it is they who might save me, by reporting back if the new package of drastically reduced hours is insufficient: if they think I should be given more care hours, then it seems the Council will increase their funding & care provision accordingly.

I’m ashamed and afraid to admit I broke! I just broke! And I lost my composure, my dignity, my sanity, and my temper, with I and all of them being affronted, attacked and pushed beyond endurance simultaneously, by the council’s ‘person centred’ cuts and this man obliviously, calmly sitting there and telling me a team of people, strangers, including ‘support workers’, he tried to reassure me, would be coming into my space; violating the haven, sanctuary and privacy of my home, my toilet, my shower, my bedroom; observing me naked, defecating, urinating, wiping my bum; observing and reporting on my every move, word and action! Due to having been sexually, physically, mentally & emotionally abused as a child and as an adult, including being raped, in addition to my physical disabilities I not only suffer from depression and PTSD but I also have massive debilitating body, privacy and image issues, which have been heightened since becoming disabled & having to give up all claims to my privacy and dignity on every level: physically, financially, spatially, etc: Benefits and Council and Social Service agencies can decide to come into my home, look at my daily living and life choices, my finances and bank accounts and the contents & layout of my home, at my entire life, at me, at my body, at will and I have to accept it, and because I am on benefits and in need of care I must be beholden to them and accept all their intrusions and assaults and demands on my privacy and dignity and sanity.

Due to my complex physical and mental disabilities, I already have to have someone with me 24 hours a day. I have no space to hide, not even inside of my own head, as they (Social Services and the Government) pick & question and ask and push & demand & prescribe & demean & break me!

He has no idea how violated I feel by all of this process and his words and suggestions. He has no idea how far beyond endurance he has pushed me that I, who normally am covered from head to foot, stripped off my clothes and exposed myself in front of him & all present; he has no idea how physically suffocating, nauseating and & traumatising it feels to feel so assaulted by his words and the thought of being observed like a piece of flesh and nothing else, or how shameful & exposed, dependent & vulnerable I feel, and am: like a goldfish in a bowl, lacking privacy, freedom, spontaneity, rights, dignity; dreading when the plug is going to be pulled by people who think it’s okay to leave one without the funds and care & mobility support which keep me afloat; that they have the power to leave me totally unable to cope, to feel like the government through them are pulling the rug from under my feet and willing me to die, so that they can save a little bit more money. Is that how little our lives matter? He had no idea of the cruelty of his words and actions; he thinks he is ‘just doing his job’!

I just keep breaking down & crying & rocking like a baby trying to comfort myself & hold onto my sanity & not really succeeding. I trust the personal assistants I have around me, they have been supporting me for years, it has taken years to feel truly safe with them, for them to know how to support & help me, with not just my physical problems, but with my mental, emotional & spiritual health and needs too.

If the Council cuts my care I will lose them, as they will need to take on other jobs. Losing them, means losing all the paid, as well as all the unpaid hours of care & support which they also provide too. I get funded currently for 12 hours of care a day, but I have someone with me virtually 24 hours a day, thanks mainly to all the unpaid care that they, my personal assistants, provide me with: unfunded care that they will no longer be able to provide if they have to take on other jobs.

The thought of being left without funding and care and without my current, trusted team of personal assistants is terrifying and this terror is compounded by the terror of having to recruit and train & learn to trust a whole new set of people – if I were to lose the support of my current PAs as a result of my care being cut. The thought is unbearable & truly terrifying!

The thought of going back to being virtually housebound due to the lack of care & support is petrifying!

And the thought of having to go to the toilet, shower, dress, undress, etc., observed by a team of ‘people’ has me in floods of tears again & again & again. I am trying to hold on to my sanity & I’m finding it almost impossible, and I am one of the lucky ones: I have friends and a fantastic support network, my heart breaks when I think of all those who are fighting this on their own! For example, I have a friend who uses a wheelchair and lives in a flat on the first floor, without a lift, or the care support she needs to even get out of her flat! It’s absolutely heart-breaking!

Please, my friends, help me, help them, and help all those who are being pushed so far that they are dying before their time. We need you to stand with us against this assault, and to demand an end to it.

Thank you.”

I also urged everyone to join DPAC’s week of Action in September:
“This September, DPAC will be using the interest surrounding the 2016 Paralympic Games in Rio to draw attention to the cumulative impact of the cuts on Disabled People that are taking disabled people’s rights back decades with attacks in every area of our lives from education to independent living to employment to income.”

Thanks to Disabled People Against Cuts (DPAC)‘s fundraiser I have a wonderful solicitor who is supporting me and has written to the Council to challenge them. So please keep your fingers crossed and please add your support for DPAC’s fundraiser.
<3 Thank you. <3

<3 Other things you can do to help. <3

Join & Be Part of and spread the word about DPAC’s Week of Action, in September Rights not Games
<3 Week of Action – 4th to 10th September 2016 <3
Contact DPAC to find out more & how you can get involved and share supporting events that you can organise.…/september-2016-week-of-action-septemb…/

Join and add your support for DPAC Disabled People Against Cuts (DPAC)

Lobby your MPs to end this inhumanity & abuse. TheyWorkForYou

Our ignorance is bliss for those who use it to divide & control and use it against us, especially to abuse those least able to defend themselves; our knowledge is our power to end the abuse & change the world around us for the better. Don’t be part of the problem when you can stand up & speak out & be a powerful part of the solution. Actively learn & share more & offer your support to all those around you who are suffering as a result of the cuts especially those who are being hit the hardest: people of all ages who are sick, infirm, disabled and struggling to manage with all the cuts to their benefits, services, mobility, social inclusion, human rights, independence and care.

Our news media is being heavily censored and used for propaganda purposes so we all need to become the daily sharers of the truth and the real news. <3












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