Disabled: What’s in a Word? by Frances Leckie

One word that some campaigners would like to see disappearing is “disabled”. Sir Philip Craven, the president of the International Paralympic Committee, finds it completely unacceptable as applied to humans. He says that if a machine is disabled, it means that it is broken down, and describing a person as disabled, immediately establishes this negative association. Another of his objections is the way it is used as a collective noun: “the disabled” – as though a wheelchair user and a blind person are more logically connected with each other than with someone who has no impairment.

Read the full article here

‘Dear Mr Miliband’ – why you need LISTEN

UPDATE  – reply received from Margaret Curran Labour MP

and the following

margaret.curran.mp@parliament.uk,coopery@parliament.uk, eaglea@parliament.uk  denhamj@parliament.uk   jowellt@parliament.uk
caroline.flint.mp@parliament.uk  lewisi@parliament.uk hilary.benn.mp@parliament.uk    jimmurphymp@parliament.uk creaghm@parliament.uk  andy.burnham.mp@parliament.uk
meghilliermp@parliament.uk   healeyj@parliament.uk  woodwardsh@parliament.uk ann.mckechin.mp@parliament.uk
eaglem@parliament.uk  hainp@parliament.uk  timmss@parliament.uk 
stephen@stephentimms.org.uk   buckk@parliament.uk byrnel@parliament.uk

Dear Mr Ed Millband (and to each and everyone copied in above)

  The 10 million disabled people in this country plus their carers, relatives and friends are watching what your party do in relation to disability issues and wondering why you seem disinterested in trying to get their votes by opposing the savage attacks against disabled people being made by the Coalition government. During conference season we wish to remind you, the architects of Employment and Support Allowance to ‘never fall ill, never grow old, never become disabled, never become a carer’, for if you do, as we have found, not even Labour will speak up for you.

Not only am I a carer of my autistic son, who has been treated very badly by our local authourity (Bracknell Forest) in what he is entitled to receive, (education up until the age of 25) that I have had to engage a specialist solictor on legal aid. Legal aid which has also been cut very savagely. But because of his severe condition (he cannot interact with people face to face) so he had been taught behind his bedroom door for 6 1/2 years (very successfully passing many GCSE’s, receiving a distinction and a merit grade in 2 of them) at home by 2 home and hospital tutors. He had his SEN statement ended at 19 last summer, and I have been struggling a whole year to try to reistate his education, so far without success.

My son although autistic deserves and has a right to continue with his education in the best and only way he can cope with at the moment (behind his bedroom door).

 I am also a carer to my elderly mother of 86 too who lives alone. I am 60 myself (an older carer) and my own health is deteriorating very fast, with very little regard from anyone for that, I am also disabled with arthritis, epilepsy, severe depression, high blood pressure and Post Traumatic Stress Disorder. No help or support for my son’s own mental health, despite me attending countless meetings in the past, where ‘professionals’ had considered it ‘OK’ to lie to me, to my face but in writing too. Offical complaints I made were literally completely ignored.

Desipte reassurances that assessments undertaken by ‘medical personnel’ at ATOS medicals or Job Centre Plus assessment interviews would understand Autism in all its different presentations, time and again it has been shown not to be the case. So I cannot bear for my son to be put under so much pressure and stress to attend a ESA assessment, so he can’t apply for the ESA benefit he/we so need.

There are so many carers up and down the country in similiar situations watching your conference, and please may I suggest you listen and read the words stated in this link below.

  http://www.youtube.com/watch?v=BvsX03LOMhI 

  Yours sincerely

  Ms Rosalind Brewer

Mother died after daughter’s death

 

A BED-RIDDEN 94-year-old woman is believed to have died after her daughter and only carer had a seizure and died.

The bodies of Emily Kinsey and her daughter Prudence Kinsey – who lived alone in Littlemore – were only discovered by police officers when neighbours raised the alarm.

The pair were not using social services and friends told the Oxford Mail that Miss Kinsey, 68, had been determined to look after her mother herself.

It is understood that Mrs Kinsey died of natural causes some time after her daughter had a seizure and died.

click link below for full article

Mother died after daughter’s death (From The Oxford Times)

Proposal to replace Disability Living Allowance with Personal Independence Payment (16th September 2011)

 

3.1 Carers UK is surprised and disappointed at the lack of adequate assessment of the impact of the PIP proposals on carers:

· There was no mention of carers in the initial Impact Assessment of the DLA reforms, published with the Bill; or in the Equality Impact Assessments published during the Committee stage. The Government’s response to the DLA reform consultation, published in April, simply states that the Government is considering the implications for Carer’s Allowance of DLA reform.

· This lack of upfront information not only makes adequate scrutiny of the proposals impossible – but it is also causing a huge amount of distress for families, including those affected by the most severe disability and terminal illness, who fear the loss of their disability and carers’ benefits because they do not know if they may be affected.

· Given that 73% of current Carer’s Allowance claimants are women, it is also concerning that the potential loss of independent income for a group predominantly made up of women was not a key part of the gender impact assessment for the Bill.

3.2 We believe that it is critical that a full evaluation of the impact on carers is conducted as a matter of urgency. This must include an estimate of the number of carers expected to lose Carer’s Allowance, a disability impact assessment and a carer equality impact assessment which looks at the impact on gender equality of the likely loss of Carer’s Allowance .

Proposal to replace Disability Living Allowance with Personal Independence Payment (16th September 2011)

An opportunity to raise YOUR voice to break the silence

This is a joint venture between CarerWatch, The Broken of Britain, Disabled people Against Cuts and ACTnow. 

Everyone is urged to support this.

To all our members and supporters;

The Labour party conference starts in Liverpool on Saturday. As we all know, Labour were the architects of Employment Support Allowance and the ‘not fit for purpose’ Work Capability Assessment which is so stressful and traumatic it was linked to the suicide of claimants whilst Labour were still in power. The Labour party are the official party of opposition, but they are not opposing the Welfare Reform Bill as they should be and seem to have forgotten that the 10 million sick and or disabled people plus carers, friends and family in the UK have the power to vote. It is time for us to remind Labour that they will not get any of our votes if they do not start to oppose the parts of the Welfare Reform Bill set to return sick people, disabled people and carers to a life of desperation, dependency, despair and charity.

We are asking you to help with a mass email to the Labour party to remind them of our voting power. Please include the following details in your email and send it to Ed Miliband, Margaret Curran (shadow minister for disability) and Liam Byrne (shadow minister for DWP). If you have time please also email it to any Labour MP and particularly any members of the shadow cabinet. We have provided a list of email contacts below.

Please aim to send your email at 11am tomorrow (Thursday the 22^nd September) If you can’t send the email at 11am, don’t worry, just please try to send it at any time between then and the end of Labour party conference on Wednesday 29^th September.

The email subject should read “Your Silence Is Deafening”

We suggest embedding a link to this youtube video “The Sound of Silence” To embed the video into your email just copy and paste the link below.

http://www.youtube.com/watch?v=BvsX03LOMhI  

Then please copy the following text into your email;

Dear (insert name here)

‘The 10 million disabled people in this country plus their carers, relatives and friends are watching what your party do in relation to disability issues and wondering why you seem disinterested in trying to get their votes by opposing the savage attacks against disabled people being made by the Coalition government. During conference season we wish to remind you, the architects of Employment and Support Allowance to ‘never fall ill, never grow old, never become disabled, never become a carer’, for if you do, as we have found, not even Labour will speak up for you.’

If you would like to add a short, personal message explaining to Labour how you feel about their lack of support for sick, disabled people and carers then please include it after the suggested text. You might also like to include a photo of yourself, or perhaps a photo of what disability, sickness or caring means to you. Don’t worry if you don’t want to personalise the email, sending the suggested text is fine.

Contact details below

Ed Miliband MP, Leader of the Labour Party

House of Commons, London, SW1A 0AA
Tel: 020 7219 4778
ed.miliband.mp@parliament.uk

 

Shadow Secretary of State for Work & Pensions

Liam Byrne

House of Commons, London, SW1A 0AA
Tel: 020 7219 6953
Fax: 020 7219 1431
byrnel@parliament.uk

 

House of Commons, London, SW1A 0AA
Tel: 020 7219 8102
Fax: 020 7219 6656
margaret.curran.mp@parliament.uk

 

Shadow Home Secretary and Minister for Women and Equalities

Rt Hon Yvette Cooper MP

coopery@parliament.uk

 

Shadow Chief Secretary

Angela Eagle

eaglea@parliament.uk

 

Shadow Secretary of State for Business, Innovation & Skills

John Denham

denhamj@parliament.uk

 

Cabinet Office and Minister for the Olympics

Tessa Jowell

jowellt@parliament.uk

 

Shadow Secretary of State for Communities and Local Government

Caroline Flint

House of Commons, London, SW1A 0AA
Tel: 020 7219 4407
Fax: 020 7219 1277
caroline.flint.mp@parliament.uk

 

Shadow Secretary of State for Culture, Media & Sport

Ivan Lewis

House of Commons, London, SW1A 0AA
Tel: 020 7219 2609
lewisi@parliament.uk

 

Shadow Leader of the House of Commons 

Hilary Benn

House of Commons, London, SW1A 0AA
Tel: 020 7219 5770
hilary.benn.mp@parliament.uk

 

Shadow Secretary of State for Defence

Jim Murphy

House of Commons, London, SW1A 0AA
Tel: 020 7219 4615
Fax: 020 7219 5657
jimmurphymp@parliament.uk

 

Shadow Secretary of State for Environment, Food and Rural Affairs

Mary Creagh

House of Commons, London, SW1A 0AA
Tel: 020 7219 6984/020 7219 8766
Fax: 020 7219 4257
creaghm@parliament.uk

 

Shadow Secretary of State for Education and Election Coordinator

Andy Burnham

House of Commons, London, SW1A 0AA
Tel: 020 7219 8250
andy.burnham.mp@parliament.uk

 

Shadow Lord Chancellor, Secretary of State for Justice

Sadiq Khan

House of Commons, London, SW1A 0AA
Tel: 020 7219 6967
Fax: 020 7219 6477
sadiqkhanmp@parliament.uk

 

Shadow Secretary of State for Energy and Climate Change

Meg Hillier

House of Commons, London, SW1A 0AA
Tel: 020 7219 5325
Fax: 020 7219 8768
meghilliermp@parliament.uk

 

Shadow Secretary of State for Health

John Healey

 

House of Commons, London, SW1A 0AA
Tel: 020 7219 6359
Fax: 020 7219 2451
healeyj@parliament.uk

 

Shadow Secretary of State for Northern Ireland

Shaun Woodward

 

House of Commons, London, SW1A 0AA
Tel: 020 7219 2680
woodwardsh@parliament.uk

 

Shadow Secretary of State for Scotland

Ann McKechin

House of Commons, London, SW1A 0AA
Tel: 020 7219 8239
Fax: 020 7219 1770
ann.mckechin.mp@parliament.uk

Constituency

 

Shadow Secretary of State for Transport

Maria Eagle

House of Commons, London, SW1A 0AA
Tel: 020 7219 4019
Fax: 020 7219 1157
eaglem@parliament.uk

 

Shadow Secretary of State for Wales

Peter Hain

House of Commons, London, SW1A 0AA
Tel: 020 7219 3925
Fax: 020 7219 3816
hainp@parliament.uk

 

 

Steven Timms MP

timmss@parliament.uk
stephen@stephentimms.org.uk

Karen Buck MP

buckk@parliament.uk

Council cuts could leave 750 vulnerable people in Lincolnshire without care cash

 

COST-CUTTING proposals could leave more than 750 vulnerable people without cash for their care.

Lincolnshire County Council is planning to make people with "moderate needs" ineligible for care funding in a bid to save £4.6 million a year.

Officials say 3,096 people are classed as moderate, which is where they cannot care for themselves properly without help or specialist equipment.

Of these 1,509 will have to be reassessed, with predictions suggesting half of these people will lose their cash.

The other half are expected to be upgraded from moderate to substantial – the second highest level behind critical.

Council cuts could leave 750 vulnerable people in Lincolnshire without care cash | This is Lincolnshire

Devon father angry at disability benefit questions

 

A father has criticised a government questionnaire which asked if his severely disabled son could return to work.

The letter was sent as part of the government’s reassessment of those claiming Incapacity Benefit.

Kelvin Halloran, from Torquay, said the Department for Work and Pensions should have been able to access information from the Department for Health.

BBC News – Devon father angry at disability benefit questions

The Disability Diamond Theory – Martyn Sibley

This is a guest post from Martyn Sibley

Thank you for the privilege of allowing me to guest blog on this site. As a fellow campaigner, it is great we can stick together, and share each others projects for disabled people.

For over 2 years I have been running my blog  . I enjoy writing articles, tweeting, sharing videos and pictures on my life: some would say a life less ordinary, while others would not feel the need to clarify. Having a disability; always striving for new challenges and living life to the full; my articles often highlight the lighter/social side to life. Having gained a masters degree, travelled to Australia, learnt to drive a car with my hands and now living independently in London; I have crammed a lot in to my 28 years. My website mantra is inspire, inform and change.

I have always said how grateful I am for those who fought for and won independence for disabled people 20+ years ago. Moreover, I remain ever grateful to those campaigning on prevalent issues today. I have also dipped my toe in the political writing arena , attended political marches, see here .

For the past 2 months I have been self-employed (having worked for Scope in various capacities for 5 years) and I’m now running my own online projects for disabled people. Beyond my blog I co-launched the disability magazine Disability Horizons, created a series of ‘webinars’ (online seminars)  and have other ‘new media’ plans.

The webinars are being run for my social media audience, and also in partnership with Hackney council  and Scope (for their respective service users). Each series has 5 topics, which vary with each contract, and include: being a parent to a disabled child, a session for disabled teenagers, giving assistance with independent living (accessible housing, equipment, care and finance), accessing local leisure and world travel. In one hour the attendee can log on from home (or their nearest computer), absorb the 45 minute presentation I deliver and then ask specific questions in the 15 minute Q&A session. They see my screen and therefore can view powerpoint slides, websites, word documents and other useful/relevant materials. Meanwhile I explain all by talking into a microphone.

The benefits are seen by free attendance, useful information on a manner of disability related topics, personal goals to be taken away and my own theory which can be applied to all future concerns. To sign up and try one for yourself please click here

So, what is the theory I mentioned? It is called the Disability Diamond Theory. I created this theory because I could see the need for a disability model that focuses on an individuals’ impairment, needs, aspirations and life choices. It also encourages disabled people to aim higher, helps them along with some useful resources and explains my philosophy too. By my own admission it derives from personal experiences and is not an academic thesis. My experiences have, however, been influenced by many other disabled people and my only professional work was in the disability sector. A pretty solid foundation to write such a book I hope.

It is free to download here . My vision is that the Disability Diamond Theory will encourage disabled people (especially the next generation) to use the resources available (that were not around 20+ years ago) and excel in life.

I would love for you to read this ebook and feedback your views – good, bad or indifferent

Martyn Sibley 

Twitter – @martynsibley
Website – http://martynsibley.com/
Online magazine – http://disabilityhorizons.com/
Mobile – 07824 535720
Email – martyn@martynsibley.com
Managing Director – Sunnier Days Ltd

Discussions start on improving care and support

 

Experts have been enlisted to help the Government’s discussions on how to improve the care and support system in England.

It is estimated that within 20 years, the number of over 85s will double, and the number of people living with life-long disabilities is likely to grow too. People want to see higher quality care, with choice and control over the services they use. With the mixture of greater expectation and greater demand on services, we must act to improve the system.

Discussions start on improving care and support | Department of Health

Leaky bottoms and Bowel screening

Guest post by Pat Onions. Regular readers here will remember Pat is registered blind so you will understand the difficulties she outlines below.

David has a bit of a problem. One of many but this is something that many will not like to hear. He has a leaky bottom. It could be related to his spinal injuries or it may not. It could be his age or it may not.

Numerous visits to neurology, pain and incontinent consultants who have carried out assorted ‘procedures’ have shown nothing concrete. Ooooh that could be painful.

He was referred to the incontinence nurse who, whilst sympathetic, are really more concerned with other leaky orifices. They recommended him to wear a type of nappy. He does in spite of being conscious of the inconvenience. (Sorry about dreadful puns.)

Some years ago when I reached that magical 50 when bits start to wear out or drop off I was sent a bowel cancer testing kit. Many of similar age will understand what you have to do but for those younger it involves a minute wooden spatula, some even smaller instructions and you provide your own marigolds. I won’t explain the method…. suffice to say it is a delight for everyone to look forward too.

I peered into this tiny package and in very bold very large letters I was instructed DO NOT OPEN. Nope I wasn’t going to manage it so it was resigned to the bin.

Last week by now several years older I received another package just as tiny. This time i called the help line and asked if I could have mine in a larger format. Hoping the whole lot would be large enough for me to manage I was disappointed. Only the instructions had been enlarged. Once again I peered hopelessly at it. I would leave it a bit and ‘see’ what I could do.

A phone call from the District Nurse at our surgery sent my blood pressure rocketing. She wanted to visit David to check he is wearing his nappies correctly. You can’t make these things up.

‘Oh good’ – she can help me perform with my tiny spatula and I promise that I will wear the marigolds.

She arrived to see David armed with THE TICK BOX LIST. Don’t we just love them? Wanted to know which drugs he takes. Fair enough. Marital status? That’s relevant. How much he drank? For why? Type of accommodation we lived in. Interesting. I felt we were fast becoming a statistic. X% of men aged 60+ who live in old mining villages, take 14 different drugs a day, like a tipple or 3 and have a wife called Pat and have leaky bots…..

Anyway. Big dos and little dos and she finished. I spotted my chance to ask for her help with my ‘little’ package. She was so helpful and read out all the instructions for me. The same ones the ever so nice helpline had enlarged for me. She even showed me what to do. “But I can’t see the little windows” I lamented. Silence while she worked out what was coming next. “Give it a try” she answered heading for the door….”Any problems see your GP.”

Bowel screening is a vital test to catch that type of cancer early. It is treatable, successfully, if caught early enough and I want to do the test.

My brother died a short time ago from bowel cancer. He didn’t die because he didn’t wear the nappies correctly.

Pat Onions

If you have any further questions call the national bowel screening helpline on 0800 0121 833