YOUR DISABILITY RIGHTS MAGAZINE
An incredible mind, an indominable scientist, a dreamer, a prankster and a hero to many disabled people
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YOUR DISABILITY RIGHTS MAGAZINE
CONTRIBUTORS JAMIE HALE @jamierhale
Writer, poet, commentator and activist. Jamie has experience with unpaid carers, care agencies, self-employed carers and direct employment, and care through funding from Social Services and Continuing Healthcare.
CLIVE GILBERT @CliveGilbert
Clive is a freelance writer and researcher with a particular interest in social policy, disability and technology. He works with government and charities to improve services for disabled people.
LYNLEY GREGORY @TopladyTalks
Lynley runs a weekly blog ‘TopladyTalks’ to raise awareness of challenges affecting disabled people. She is an ex-secondary school teacher and became a wheelchair user three years ago following a spinal fracture.
THE TEAM EDITOR: Rosalind Tulloch STAFF WRITERS: Colette Carr and Katie Campbell COLUMNISTS: Mik Scarlet and Sarah Brisdion DESIGNER: Stephen Flanagan MARKETING: Sophie Scott SALES: Louise Anderson
DISCLAIMER UNITE Magazine is published by UNITE Media. The views expressed in UNITE are not necessarily the views of the editor or the publisher. Reproduction in part or in whole is strictly prohibited without the explicit written consent of the publisher. Copyright 2018 © UNITE Media. All Rights Reserved.
WHO WE ARE
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ISSUE 2 • APRIL 2018
WELCOME TO YOUR NEW DISABILITY RIGHTS MAGAZINE
A tribute to the late scientist and disabled icon Stephen Hawking
DO I QUALIFY FOR SOCIAL CARE?
Jamie Hale guides you through this confusing world
AUTISM, LIES AND MMR
This issue introduces our Know Your Rights section that will offer advice and information from legal experts on different situations, we also have a guide to social care, a look at the government’s pledge to increase the employment of disabled people and we look at the underfunded state of NHS Wheelchair Services.
We look back on the MMR scandal that shocked the world
THE EMPLOYMENT PLEDGE
Are the government living up to their disability employment pledge?
Our next issues will be covering areas of mental health, learning difficulties, accessibility and issues that affect disabled children. If you have a story or campaign you would like to share with UNITE please email firstname.lastname@example.org. /UNITEMag
WOULD YOU SIT ON THE LOO IN PUBLIC? Sometimes, Sarah Brisdion’s fight for equality takes her to strange places
– NHS WHEELCHAIR SERVICES
Clive Gilbert examines the failures of the NHS’s wheelchair service
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MIK SEES RED
Mik discusses the language we should be using
t seemed appropriate this issue to bid farewell to Stephen Hawking, one of the brightest minds of our time and an incredible disabled icon. You will find a tribute to him on page 12, where we also acknowledge the ridiculous ableist farewells that filtered through social media.
We bring you the latest stories affecting disabled people
KNOW YOUR RIGHTS
Mik Scarlet explains how to get the law on your side
AND ANOTHER THING
Each issue we invite a reader to vent their frustrations
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SCOTTISH UNIS ARE BEHIND
Scottish universities called out for their exclusion of disabled students
DARK TIMES ARE AHEAD
Spring budget leaves disabled people at mercy of austerity again
STUCK ON A PLANE
Heathrow leave BBC journalist stranded on plane after losing wheelchair
THE LATEST NEWS FROM THE DISABLED COMMUNITY D I S C R I M I N AT I O N
COMPLETE DUMMIES MADAME TUSSAUDS ASK MAN TO PROVE HE’S DISABLED
feel worthless, hurt adame Tussauds and shocked. I in thought she (the staff Blackpool has been member) was joking. criticised for asking “Then I saw that Liam Maxwell, who there was a lift that has cerebral palsy and was wide enough for scoliosis, to “prove” he my wheelchair. As was disabled. we moved towards Liam was asked to prove his disability The famed wax it, a member of staff museum informed Maxwell that tapped Wendy on the shoulder and he would not be able to explore asked what we were doing. further than the ground floor as “That was when we decided it was inaccessible to wheelchair to leave.” users, despite having been there Returning to complain the before. Maxwell asked for a following day, Maxwell and Plant discounted ticket to reflect this and was then asked by staff to prove he were informed they were now allowed to visit the second floor was disabled. but were still deeply hurt by the Wendy Plant, his assistant, asked incident. why his wheelchair wasn’t proof Madame Tussauds claim a member enough when staff told her they had to produce a blue badge. They of staff misconstrued what was said by Maxwell but have apologised eventually relented when showed and committed to retraining staff Maxwell’s disability rail card. He told the BBC: “It made me in terms of accessibility.
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DARK TIMES ARE AHEAD DISABLED PEOPLE TO BEAR BRUNT OF AUSTERITY UNDER FRESH SET OF TORY CUTS IN UPCOMING BUDGET
number of disability the positive outlook portrayed groups and charities by the chancellor we remain have spoken out concerned that disabled people against Chancellor are being left behind. of the Exchequer Phillip “His emphasis on ‘talent and Hammond’s spring statement, hard work’ is blunted by the saying that he has refused to reality of disabled people’s address the current funding experience of finding and crisis in areas such as social care. keeping jobs. The budget will not be adjusted “Once again, the opportunity to to increase funding for adult pick up the challenges in health social care or any other public and social care services, which services, but Hammond are seriously impacting on the suggested these lives of disabled might come in the people, remains DESPITE autumn budget ignored. THE POSITIVE and insisted that OUTLOOK “In the meantime, “spending on the PORTRAYED forthcoming disabled” increased BY THE changes to the yearly. CHANCELLOR benefits system will Speaking to WE REMAIN hit disabled people Disability News CONCERNED Service, Sue THAT DISABLED hardest – we need a system which Bott, deputy PEOPLE ARE BEING LEFT doesn’t drive more chief executive of BEHIND. Disability Rights disabled people into UK, said: “Despite poverty.” Chancellor of The Exchequer, Phillip Hammond is set to stick to his austerity guns in the budget
SPOT THE DIFFERENCE GOVERNMENT WASTE £50K ON POINTLESS LOGO REDESIGN FOR PARLIAMENT The Houses of Parliament have spent almost £50,000 of the taxpayer’s money on a logo redesign that looks exactly the same as their previous logo. Consultancy SomeOne, who were hired for the rebranding, claim the logo is now less “confusing and inconsistent,” but all that appears to have actually happened is the removal of 24 dots from the famous crown and portcullis. The colours of the logo have also
been switched, with the design now appearing white on a royal purple background instead of the traditional black-on-white design, and the name “Houses of Parliament” has been changed to “UK Parliament.” A Parliamentary Spokesperson said: “The visual identity of the UK Parliament has been reviewed and updated by the administrations of both houses because the current version does not work successfully on digital
channels. “The new version works with mobile responsive websites and is more accessible and readable.” While UNITE are pleased that the government is taking steps to make their logo more accessible and easily read, we can’t help feel that the same effect could have been achieved without the massive price tag, as the money could have gone to far better use.
QUOTE OF THE MONTH
“We know that disabled people continue to face barriers getting into work in the first place, in staying in work and progressing in employment – so really unable to fill their potential in roles they want to be doing.” JAMES TAYLOR, HEAD OF POLICY AND PUBLIC AFFAIRS FOR DISABILITY CHARITY SCOPE
T R AV E L
RA AEL S O The DWP spent £5.2million on taxis & nearly £333,000 on business class flights between April 2013 & March 2017. They also splashed out £33,500 on 1st class rail travel. In other news, the Tories have forced 75,000 disabled people to give up their adapted Mobility cars. LE LA LLE Fellow commuters please don’t hog the aisles with your bags use your lap if your sitting down, be considerate to other passengers. And food for thought not every disability is visible, thanks have a nice day! @TfL
AIRBNB ADD DISABLED FILTERS Airbnb has added new filters to its website which will allow disabled travellers to find accommodation with greater ease. Travellers can now search for step-free entry to rooms, wide entryways, lifts, wheelchairaccessible showers, and ramps. After finding that previous filters – namely a simple filter for
TRAVELLERS CAN NOW SEARCH FOR S E REE ENTRY TO ROOMS, WIDE ENTRYWAYS, LIFTS, EEL A R ACCESSIBLE SHOWERS, AND RAMPS.
O S Emojis were incorporated @unicode standard in 2010. As of July 2017, there were 2,666 emojis. Pleased that @Apple has proposed 13 with #Disability, but I think the 15% global population with #Disability could probably do with a few more
wheelchair accessible listings – “did not always meet travellers’ individual needs,” they added the above filters to increase accessibility for travellers. Airbnb will be monitoring how users with accessibility needs use the new filters, but their addition is a massive step forward in ensuring Airbnbs can be used by everyone.
L EA RES I was a full time carer for my Mum with Alzheimers’ for four years on £53 pound a week carer’s allowance. The lady “Carer” got a lot more than I did for 8 hrs a day. I was on 24 hrs a day, 52 wks a year all year. Where were my rights to equal pay?
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STUCK ON A PLANE BBC JOURNALIST STRANDED ON PLANE
WONDER WOMAN TWEET BLUNDER BACKLASH AT WONDER WOMAN’S “ABLEIST” TWEET REGARDING STEPHEN HAWKING
onder Woman star Gal Gadot has come Commenter Adam Zimmerman (@ABZImm) under fire for her “ableist” reaction responded: “I think you’re fantastic Gal but to the death of Professor this tweet is very ableist. His physical Stephen Hawking, which pushed the constraints didn’t stop him from REST IN idea that his death has “freed” him from PEACE DR. changing the world. People with HAWKING. NOW his disability. disabilities don’t wish for death to be free Gadot’s tweet, which read “Rest in peace YOU’RE FREE OF of their challenges. We wish to be valued ANY PHYSICAL Dr. Hawking. Now you’re free of any CONSTRAINTS.. for what we CAN do, not pitied for what physical constraints.. Your brilliance and YOUR we can’t.” wisdom will be cherished forever” was BRILLIANCE Not everyone agreed with his stance, heavily criticised by fans, who called her AND WISDOM however, calling it “overly politically tweet “cruel” and “offensive” to disabled WILL BE correct” and noting that Gadot’s tribute CHERISHED people, emphasising that Dr Hawking FOREVER...” was a “beautiful statement.” was frequently quoted as saying that his GAL GADOT’S TWEET UNITE would like to point out that ALS did not restrict his freedom to do ABOUT STEPHEN HAWKING something beautiful can still be ableist. the science that he loved.
BBC journalist Frank Gardner was left stranded on a plane for nearly two hours after landing at Heathrow Airport because they had “lost” his wheelchair. It had been taken to the terminal rather than brought to the plane. Gardner tweeted throughout the ordeal expressing his frustration at this happening yet again: “Odd that I can travel round the Middle East and elsewhere without a hitch. Yet time and again @HeathrowAirport loses my wheelchair on arrival. Now been on an empty plane 1.5 hours after landing. Believe me, I’m as bored of writing this as you are of reading it.” He was swiftly invited in by Heathrow airport to discuss tackling the problems that face disabled passengers when travelling though airports.
MAKE YOUR VOICE HEARD YOUR OPINION MATTERS TO US SO PLEASE FILL OUT OUR FEEDBACK FORM AND HAVE YOUR VOICE HEARD.
E D U C AT I O N
SCOTTISH UNIS BEHIND SCOTTISH UNIS “LEAVE DISABLED PEOPLE BEHIND” 14 of Scotland’s 18 universities of Scotland’s population having are being challenged on their a mental or physical impairment, inclusivity of disabled people by recent admission reports show charity One in Five. that only 11.5% of full-time In the letter sent to students undertaking ONE IN FIVE the higher education their first degree have NOTE THAT, DESPITE 20% institutes, which a disability. OF SCOTLAND’S include Scotland’s The charity are asking POPULATION HAVING A MENTAL three oldest and universities to consider OF PHYSICAL most well-regarded disability as part of IMPAIRMENT, RECENT universities, the the admissions process ADMISSION University of in the same way REPORTS SHOW THAT ONLY 11.5% Glasgow, University depravation is, which O LL E STUDENTS of Edinburgh and helps students from UNDERTAKING University of St poorer backgrounds THEIR FIRST Andrews, One in Five DEGREE HAVE A move forward in DISABILITY. note that, despite 20% higher education.
C U LT U R E
LONE PARENTS £11K OUT OF POCKET
SHENTON SIGNS OSCARS SPEECH
LONE PARENTS FACE UP TO £11,000 IN BENEFITS CUTS
EX HOLLYOAKS STAR FULFILLS PROMISE TO LEAD ACTRESS
A report by the Equality and Human Rights Commission has reported that governmental reforms will hit disabled lone parents with a “disproportionately negative impact.” These negative impacts will be “particularly large” for households with more than one disabled member, and even larger if they have high support needs. The report states that by the time the reports are fully implemented in 2021-22, lone parents with at least one disabled child will see net losses of just under 30% of their income, which adds up to £10,000 per year. If the disabled person has high support needs, the losses will likely be over £11,000, and households with a disabled adult will see losses of £6,500, more than 13% a year.
After winning the Oscar for best live-action short film for The Silent Child, actress and scriptwriter Rachel Shenton fulfilled a promise to lead actress Maisie Sly, who asked if she would sign her acceptance speech. Shenton, who is a qualified BSL translator, accepted the award for her movie in which a young girl, Libby – played by Sly – struggles to communicate until her social worker (Shenton) teaches her how to sign. Sly is deaf and was in the audience to see Shenton deliver the speech. In her speech, she said: “Deafness is a silent disability. You can’t see it and it’s not life-threatening, so I want to say the biggest of thank-yous to the academy for allowing us to put this in front of a mainstream audience.”
DISABLED POVERTY ON RISE IN WALES EXPERTS ARE CONCERNED ABOUT THE RISE OF DISABILITY POVERTY IN WALES In a startling report by Disability News Service, the Joseph Rowntree Foundation has shown that the number of workingage disabled people in Wales who are living in poverty has skyrocketed from 27% to 39% in just over five years, falling in line with the timeline of the Conservative-led coalition government coming into power in 2010. But Miranda Evens of Disability Wales said: “The sharp increase in disability
THE SHARP INCREASE IN DISABILITY POVERTY IS VERY CONCERNING INDEED. MANY WOULD PUT THIS DOWN TO WELFARE REFORM AND THE CUTS TO DISABILITY BENEFITS.
poverty is very concerning indeed. Many would put this down to welfare reform and the cuts to disability benefits. “However, because JRF does not take into account ‘disability costs benefits’ like PIP in calculating the rates of disability poverty, this tells us that this increase is not solely down to welfare reform.” UNITEMAGAZINE.CO.UK 9
Mik is a well-known face in the world of media and is a passionate advocate for the rights of disabled people. Not shy of a debate or a controversial topic, Mik will be bringing us his take on life every issue. Follow @MikScarlet
MIK SEES RED This month, contributor Mik Scarlet, addresses the issue of language.
COLUMNIST: MIK SCARLET
elcome to the first of my new column here in UNITE, where I finally get the chance to let off steam about things that grind my gears. Each issue I will be venting about a subject that makes me see red. Please excuse the awful pun on my name, but it had to be done. In my first rant I want to explore a subject close to my heart, language. As a broadcaster and journalist, and a songwriter before that, words have always been my bread and butter. I know the power of words and language to inform and educate, but also to change public perception and build stereotypes. In my lifetime the word ‘disabled’ has gone from conjuring concepts of pity and tragedy, which were bad enough, to visions of faking scroungers who are expensive drains on our society, as well as being pitiful and tragic! Words have been used to create these images in the minds of society. This is why I get so cross when people say “They’re only words. Call me what you like, just give me a chance”. I totally understand that attitude, as it’s one I held as a youth, but with age came wisdom and so I thought I’d try to explain why words really do matter. Let’s start with the obvious words, insults. We all know that if we’re called ‘spaz’, ‘mong’ or ‘cripple’ (among many others too long to list here), then those words are being used to hurt. I come from a generation that tried to reclaim these insults, and to this day I still find myself using cripple. I know that many people find this difficult to accept so I tend to only use it in the company of old fogies like myself. The problem is that as disabled people we also use language that injures members of our own community. How often have you used ‘idiot’, ‘stupid’, ‘foolish’ or any of the other words that have a root in describing people with learning impairments or mental health issues? We all need to stick together and begin using different terms when trying to explain situations or people that seem ridiculous to us. After the insults, we need to consider disempowering words. ‘Suffering from’ or ‘victim of’ are commonly used to describe our medical issues. I live with, the correct term by the way, chronic pain and a spinal cord injury, and I survived cancer. I totally understand why for some people suffering and victim of seems to fit. When I have a pain spike and I’m lying on the bed screaming, I do feel like I’m suffering with or am a victim of my pain, but by changing my language to ‘live with’ when describing my life with pain or swapping ‘victim of’ to ‘survivor of cancer’, something happens. I become empowered. Even when
my pain is at its worst, I am in control. I am also not ‘confined to a wheelchair’ or ‘wheelchair bound’ either. I use my wheelchair as a tool, it gets me around. I am a wheelchair user. Even if it carried equipment that kept me alive and I rarely transferred out of it, I would still ‘use’ my wheelchair. The term ‘wheelchair user’ again creates a subtle image of control, where as ‘wheelchair bound’ makes you think of victimhood again. The only time any wheelchair user might be ‘wheelchair bound’ is if they act out a scene from Fifty Shades of Grey! Now, let’s get to the biggie. Is it disabled people or people with disabilities? To be honest, this is the one that gets me most angry. If you read my previous article in the first issue of UNITE, explaining the Social Model of Disability and why it has led to all of the moves towards equality that our community has benefited from, you will know how passionate I am about this way of understanding what it means to be disabled. You’ll also understand that the Social Model explains that disability is not what we cannot physically or mentally do, it’s how society isn’t adapted to allow us to achieve whatever is possible within our abilities. It is society that disables us. So, if that is the case, the way to describe us is… disabled people. “What?” you cry, “I want to be a person first!” Well you’re misunderstanding what the disabled in disabled people is. It’s not a noun, it’s an adjective. It’s not a thing we have, it’s something placed on us. Using ‘disabled people’ is exactly the same as using ‘red apple’ or ‘front door’. Placing the apple or door before the adjective just makes the sentence longer, but they are not more ‘appley’
or ‘doory’. A disabled person isn’t any less a person, but this term explains how they are acted upon. A person with a disability has a thing, it is theirs. By using ‘person first’ language you’ve gone back to the Medical Model of Disability, and that isn’t much use if you are fighting for disability rights. OK, ‘people with disabilities’ is used all over the world, but this is changing. Globally, as more and more disabled people become politically aware, they are campaigning to follow the UK’s lead and want to be called disabled people. Here in the UK we must be proud of the way we use language as a tool to fight for equality. If you truly want to follow the Social Model and hope to see a more equal future then you should really be using ‘disabled people’. OK Mik, now breathe. I have to say while I’m obviously a Social Model fanboy, I do loathe the term “impairment”, which it uses to describe what most people understand disability to mean. It’s ugly and clumsy, and is less empowering than using disability. What’s important to remember is language is fluid, so we as a community can come up with a new word to replace impairment. I’m not at all keen on dif-ability or disAbility or any other word play because they come off as ill informed and just reinforce medical model thinking but there has to be a new way, confident way of describing our physical, mental or learning differences. Maybe that’s a competition we could run here at UNITE? Well that’s it, my first Mik Scarlet Sees Red. Language will be a common thread in future I’m sure. I mean if you really want to make me blow a gasket, call me inspirational! UNITEMAGAZINE.CO.UK 11
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SCIENCE: FAREWELL STEPHEN HAWKING
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An incredible mind, an indominable scientist, a dreamer, a prankster and a hero to many disabled people
T W E E T S BRIAN COX @ProfBrianCox His contributions to science will be used as long as there are scientists, and there are many more scientists because of him.
NEIL DEGRASSE TYSON @neiltyson His passing has left an intellectual vacuumâ€¦But it's not empty. Think of it as a kind of vacuum energy permeating the fabric of spacetime that
BILL NYE @BillNye While here on Earth, Dr. Hawking made pondering the cosmos and our place within it commonplace. Although his time was brief, his work changed the world.
MICHIO KAKU @michiokaku He will be sorely missed by anyone who has ever been overwhelmed by the mystery and majesty of the night sky.
SCIENCE: FAREWELL STEPHEN HAWKING
SUPERNOVA Stephen Hawking was not only known to the world for his work on black holes, cosmology and quantum gravity, but as a disabled icon.
he would live for only two more years. He defied hen Stephen doctors, and throughout Hawking his life would use a died in his number of wheelchairs and Cambridge home on speech synthesisers over the 14 March 2018, a light course of his life, with his in the universe went out. Few before him, famous American accented and certainly no other voice (which Hawking contemporary scientist, was adamant didn’t have has had quite the effect on an American accent) the world that Hawking becoming synonymous had; his research in the with him throughout the fields of mathematics, years. general relativity and He was frequent to note quantum gravity were that his wheelchair and groundbreaking, and his speech synthesiser provided ability to think outwith him freedom: his mind the constraints of size, was free, and to him that FAREWELL: Stephen Hawking was known for his incredible intellect and his sense of humour time and space produced was the most important incredible results in the thing. In the face of frequent ableism in fields of physics, theoretical mathematics his life – and in his death, where people and cosmology. remarked that he was “finally free” Hawking was far from the stereotype from his “broken” body to wander the of a lofty intellectual. He took tremendous joy in educating the world universe – he persevered, participating in of science, much like Carl Sagan and fundraising, lecturing, and going as far Richard Feynman before him. Like as to take part in a lawsuit to sue Jeremy them, he brought an unrivalled sense Hunt for his systematic destruction of of joy to science; it was a thing which Hawking’s beloved NHS. could not only be taught and learned, Hawking’s death leaves a hole in the in spite of his condition, he informed but be fun and humorous, while also universe which no other will truly be the interviewer that ASL only affects having incredible practical applications. able to fill. He was a gifted educator, voluntary muscles. Hawking said one Hawking’s sense of humour was noted dedicating parts of his life to teaching in of his few regrets was that he wasn’t able by many and apparent in talks and esteemed universities like Cambridge, to drive over Margaret Thatcher’s feet, interviews. MIT and Caltech; he was an icon of pop something he would frequently do to His humour was a gift to us all. culture; and more importantly, he was a people he didn’t like. His deadpan character led to hilarious disabled icon. If it is true that we are all Unlike Sagan and Feynman, Hawking parodies in The Simpsons, among other made from star stuff as Sagan said, then was a prominent disabled figure, and shows. Despite his incredible intellect, Hawking came from the brightest and a proponent of disability rights. His he often said that people who boasted most brilliant of stars, and his legacy will diagnosis of amyotrophic lateral sclerosis about the IQ were losers, and when came in the early 60s, when he was told be felt eternally. asked how he fathered his three children W o r d s : K AT I E C a m p b e l l
“He was frequent to note that his wheelchair and speech synthesiser provided him freedom: his mind was free...”
Jamie Hale is a disabled writer and poet based in London. He has experience with unpaid carers, care agencies, self-employed carers and direct employment, and care through funding from Social Services and Continuing Healthcare.
DO I QUALIFY FOR SOCIAL CARE? Many disabled people have difficulties with activities of daily living - washing and dressing themselves, cooking, eating, cleaning, taking medication and going out. If you need help with these things, you might qualify for social care.
HOW DO I GET IT? If you (or a relative) are struggling with these areas, you can contact your local authority and ask for a needs assessment. This is free, and is done by social services. WHAT HAPPENS IN AN ASSESSMENT? Usually a social worker or occupational therapist will come to your house and ask you questions about how you manage in daily life. They will be considering what you need support with, what you can do yourself, and what you might be able to learn to do independently. WHAT HAPPENS IF I DO QUALIFY FOR SOCIAL CARE? If they decide you qualify, then they look at what you need. This might include intermediate or reablement care (designed to teach you skills to live independently), equipment, community services such as a day centre or meals on wheels, regular care at home, or care in a care home. They work with you to put together a care or support plan, which details what help you need and how you will get this help. HOW MUCH DOES IT COST? Unlike healthcare, social care in the UK isn’t free (unless it is paid for by the NHS, when it is called Continuing Healthcare), and social care can be very expensive. If your needs are around managing a medical condition, you might qualify for NHS funded care, but the criteria are strict. If you get social care, then the amount you pay varies from area to area. In England (different in Wales, Scotland, and Northern Ireland), if your assets and savings are less than £23,250 your local authority will probably contribute to the cost of your care. If you live in your own home, then they don’t take its value into account, but if you move into a care home they might take money from its sale. If your savings are less than £14,250 then they shouldn’t take any of these. They shouldn’t take income from employment into account, but can take income from benefits or pensions. The minimum income guarantee is calculated nationally and varies based on age, income sources, housing situation and responsibilities. They cannot leave you with less money than this.
AREAS OF QUALIFICATION If you have a physical or mental health condition that affects your ability to carry out tasks in two of these areas, then you may qualify for social care.
1. MANAGING AND MAINTAINING NUTRITION Can you buy, make, and consume food and drink? 2. MAINTAINING PERSONAL HYGIENE Can you wash yourself and your clothes? 3. MEETING YOUR TOILET NEEDS Can you get to and use the toilet? WHAT NEXT? Once they’ve calculated how much the care you need costs, and your contribution to this, they work out a Personal Budget. This indicates how much money is available to cover the cost of your needs. If your needs change, then they can change your personal budget. WHAT CAN BE DONE WITH A PERSONAL BUDGET? Your personal budget can be used in lots of ways, for example, to pay for care at home from people you employ yourself, to pay a care agency, to pay for day centres, or to pay for a care home place. You should discuss with social services how you want to, and are permitted to use it, as this varies depending on area. Your local authority can manage the personal budget and organise your care, a third party organisation can manage your budget (for example, to pay for a care agency), or you can manage it yourself with the help of friends or family if needed. This is called a direct payment. HOW DO DIRECT PAYMENTS WORK? With direct payments, your local authority gives you your personal budget to pay for your own social care. This money cannot be used to pay for things like bills, food or rent, and can only be spent on costs agreed with your local authority. This might include equipment, care agencies or employing your own carers. HOW DOES EMPLOYING A CARER WORK?
If you want to employ your own carers (some people also call them Personal Assistants, or PAs), you should discuss it with your local authority. This allows you to interview, pay and employ your own carers. You will have all the legal obligations of an employer, including payroll, tax and worker’s rights. Your local authority may let you pay a payroll company to assist with wage calculations, taxes and holiday leave. This can be difficult, but can also be very rewarding as it gives you more choice over who you employ and how you use your care. WHAT IS NHS FUNDED CARE? If your needs are primarily around managing a medical condition and you need highly trained carers or nurses, you might qualify for care funded partially or fully by the NHS. You can ask your social worker to carry out a short screening assessment. If this indicates that you might qualify, they will do a full assessment. WHAT ABOUT PEOPLE WHO PROVIDE UNPAID CARE FOR FRIENDS AND FAMILY? If you provide unpaid care for a friend or family member, you are entitled to a free Carers Assessment from your local authority. This looks at whether you are entitled to support to help you continue to provide care. MORE FROM JAMIE HALE If you have a question about social care you can contact Jamie through Twitter @jamierhale or if you have a story you would like to share with UNITE please email email@example.com.
4. BEING APPROPRIATELY CLOTHED Can you dress yourself in clothes appropriate for your activities and the weather ? 5. SAFELY USING YOUR HOME Can you safely get everywhere you need to inside your home? 6. MAINTAINING A HABITABLE HOME Are you paying your rent and bills, is your home clean enough to be safe, is your home in decent repair? 7. PERSONAL RELATIONSHIPS Are you managing to keep in touch with family and friends or are you lonely and isolated? 8. WORK, TRAINING, AND VOLUNTEERING Are you getting the support you need to engage in these? 9. USING LOCAL FACILITIES Can you get around the community on public transport, go to shops etc? 10.CARRYING OUT ANY CARING RESPONSIBILITIES FOR A CHILD Are you getting the support you need to look after a child?
AUTISM: THE MMR AND AUTISM MYTH
AUTISM, LIES AND MMR Twenty years ago, a now damned report by Andrew Wakefield et al claimed they had discovered what “caused” autism. This lie caused untold damage that has taken almost twenty years to rectify. W o r d s : K AT I E C a m p b e l l
nothing. The two facts are simply coincidences that utistic when compared side by side, enterocolitis was look suspiciously similar. In the supposedly reality, they have nothing to unique pattern do with each other. of inflammation in the What then, is the MMR lower intestine that Andrew vaccine? It is administered Wakefield claimed to to school-age children to exist within children who immunise them against had “developed” autism measles, mumps and rubella, after receiving the MMR three viruses all of which are (measles, mumps, and extremely damaging to the rubella) vaccination, made human body and in some 20 years ago in the Lancet. cases, deadly. The vaccine He claimed that the MMR is a suspension containing vaccine caused intestinal three weakened versions of problems, which in turn live viruses; when injected created a protein which into the body, it will trigger caused autism. the immune system to begin This has been discredited. producing antibodies to VACCINATION: Andrew Wakefield et al’s study on MMR and autism caused untold damage Wakefield has been fight the three viruses. The disgraced, his medical licence body retains the knowledge of these three revoked. The others involved in the study antibodies, so that if it ever comes into removed their names, and eventually, after contact with any of them again, it can fight peeling off one by one, it was redacted. Brian them immediately. Deer won a British Press Award for his work The MMR vaccine is administered twice: in debunking Wakefield et al’s study. the first part is the vaccine proper, and the The study is available to read still, should second a booster. The vaccine can have side you wish to. It says explicitly in its conclusion effects, and they are usually extremely mild. that it cannot prove in any concrete way that The body may react badly to the vaccine and the MMR vaccine causes autism. And yet, the child can develop a non-infectious form from this, Wakefield began the crusade that of measles or mumps, often signified by the made him famous: if your child receives the existence of a small rash. This is simply the MMR vaccine, there is a chance they will body fighting the infection; some fight it “Correlation does not imply causation” develop autism. more slowly than others. is an important fact here: just because these The most important point to debunk In spite of the character assassination children had the MMR vaccine and would is that you cannot catch autism. It is not the MMR vaccine faced, in 2017 it was later exhibit signs of autism, it does not a virus like the cold; autism exists on a reported by the World Health Organisation mean that the MMR vaccine causes autism. genetic level. You are autistic from the day (WHO) that the UK was one of the 33 If you graph the divorce rates in Maine, you are born. Its visible signs may become European countries to have eliminated USA between 2000 and 2009 against the more explicit, but it has always been there. measles. That doesn’t mean that measles has per capita consumption of margarine in the Autistic tendencies come to the surface been completely eradicated, but means that, USA in the same period, the graphs have a around the age of five. This, incidentally, is thanks to the large number of the population 99% correlation rate. This does not mean when children receive the MMR vaccine. who have been immunised against it, it can eating loads of margarine causes divorce Correlation does not imply causation. no longer spread widely. The UK was rates in Maine to go up or down. It means
“The most important point to debunk is that you cannot catch autism. It is not a virus like the cold; autism exists on a genetic level.”
AUTISM: THE MMR AND AUTISM MYTH
on the verge of achieving the elimination of measles in the 90s, but Wakefield’s study led to an increase of parents refusing to allow their child to have the MMR vaccine administered, which was followed by a large outbreak of measles. The claims Wakefield makes in the study that he “feels” there is a connection between MMR and autism were fraudulent at best and at worst, one of the most damaging medical claims ever published. Brian Deer’s expose on the study showed that in 1996 Wakefield had been paid by a group of lawyers who planned to sue the producers of the MMR vaccine to do a study on the connection between the vaccine and autism. In 1997, he filed a patent on a vaccine which would have competed against the MMR vaccine. The patients he claimed were picked at random were not; they were selected by the same lawyers who funded the clinical trial, the point of which was always to determine that the MMR vaccine had miraculously caused autism to appear. In 2011, when the hospital’s medical records were released pertaining to the trial, it transpired that some of the children didn’t even have gastric inflammation, and that Wakefield had changed dates in order to “prove” what he had been paid to do. In fact, some of the children were reported as being autistic before
“Wakefield’s assessment that the MMR vaccine caused autism was one of pure financial gain, but he is not exclusively the cause of the massive shift in public perception...” their gastrointestinal problems arose. Wakefield’s assessment that the MMR vaccine caused autism was one of pure financial gain, but he is not exclusively the cause of the massive shift in public perception that autism can be induced by vaccination. The media took the report and ran with it as far as they could. The tabloids – both in the UK and USA – ignored the content of the study, which concludes: “We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described. Virological studies are underway that may help to resolve this issue.” They found nothing. The study has been replicated many times, and each study reaches the same conclusion: there is no association. They cannot prove the
association because it does not exist. But Wakefield, not content with this, said: “Again, this was very contentious and you would not get consensus from all members of the group on this, but that is my feeling, that the, the risk of this particular syndrome developing is related to the combined vaccine, the MMR, rather than the single vaccines.” The media went with this conclusion; it is more sensationalist, it makes for a better story, and more importantly, it gives people something to blame. Instead of acknowledging that autism is very likely a genetic impairment, it is easier to blame environmental factors like vaccinations which just so happen to be given at the same time as the characteristics of autism arise. We do not know what causes autism to manifest, but scientists are continually working to find out. It’s not refrigerator mothers, there’s no comprehensive evidence from the scientific community that mercury plays a part, and it definitely has nothing to do with the size of a child’s head. We know however for a fact that the MMR vaccination is almost completely safe – the only real risk is an allergic reaction – and that Wakefield’s lies were some of the most damaging comments made by a member of the scientific community for decades.
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THE EMPLOYMENT PLEDGE Can it still be on track if we don’t have the figures?
n 2017 the government committed to a pledge to get 1 million more disabled people into work by 2027. They have since published a paper called Improving Lives: the future of work, health and disability, which sets out their plans to transform employment prospects for disabled people and those with long term health conditions over the next 10 years. A great pledge and a great target to work towards, however, how can the government keep track of the progress of this pledge when the figures relating to disabled people in employment will soon be a year out of date? The Office for National Statistics (ONS) has failed to publish figures on the employment of disabled people for the last two quarters of 2017 and have attributed this to an apparent “discontinuity” between the figures of the second to third quarter of 2017. This means that the last accurate findings were published in August last year. It is now April 2018 and we are still waiting for an accurate depiction of the number of disabled people who have moved in and out of employment over the last few months. Without this information, how can the government ensure it is on track to fulfil its pledge? We spoke to James Taylor, head of policy and public affairs for disability charity Scope, about this
WHAT THE LAST FIGURES SHOWED, AND WE DID SOME ANALYSIS AFTER THEY WERE PUBLISHED IN SEPTEMBER, WAS THAT DISABLED PEOPLE WERE FALLING OUT OF WORK FASTER THAN THEY ARE MOVING INTO IT. JAMES TAYLOR, HEAD OF POLICY AND PUBLIC AFFAIRS FOR DISABILITY CHARITY SCOPE
matter and the wider subject of getting more disabled people into work. “I think for us the concern is that without accurate data the government’s ambition to get 1 million more disabled people into work over the next 10 years is harder to achieve. The last statistics we have from August, in a few months time, will be a year out of date.” Those statistics released in early 2017 showed that more than 75,000 disabled people had actually moved out of work, but James explained that Scope did some research into this trend. “What the last figures showed, and we did some analysis after they were published in September, was that disabled people were falling out of work faster than they are moving into it. So what that means for the government’s pledge to get 1 million more disabled people into work, is that potentially you are going to end up in a situation where you might have got a million people into work but actually you have lost more than that number of people because they have fallen out of the workplace at the same time.” This is a major concern going forward and further stresses the need for up-to-date figures to be published by the ONS to highlight this disparity to the government to ensure this issue is tackled. With invaluable government schemes like Access to Work, the Work with Me campaign created by Scope
and Virgin Media, and many other campaigns and debates highlighting the disability employment gap over the last few years, why is it that the employment gap has remained at a static 30 percentage points for the last 10 years? “We know that disabled people continue to face barriers getting into work in the first place, in staying in work and progressing in employment – so really unable to fill their potential in roles they want to be doing. I think what we are increasingly seeing is that whilst there are some very good employers, disabled people tell us that many employers, their attitudes haven’t shifted and they haven’t quite begun to think properly about how you can support disabled people to stay in work. That might be things like reasonable adjustments in the workplace, it might be things like allowing and enabling disabled people who might have a fluctuating condition to work more flexibly, it might be things about ensuring better awareness training for all of your staff and equipping line managers and people who manage people to really understand disability and know how to support colleagues. It’s also something about culture and really enabling disabled people to feel able to be comfortable disclosing and discussing their condition with their line manager and know that they are going to be supported and treated fairly. “Some research we published to launch our campaign with Virgin Media Work With Me found
WE KNOW THAT DISABLED PEOPLE CONTINUE TO FACE BARRIERS GETTING INTO WORK IN THE FIRST PLACE, IN STAYING IN WORK AND PROGRESSING IN EMPLOYMENT – SO REALLY UNABLE TO FILL THEIR POTENTIAL IN ROLES THEY WANT TO BE DOING. JAMES TAYLOR, HEAD OF POLICY AND PUBLIC AFFAIRS FOR DISABILITY CHARITY SCOPE
that more than a third of disabled people who don’t feel confident about getting a job believe employers won’t hire them due to their impairment or condition. So there is an employer attitude piece that we need to address.” So how do we go about addressing that? James acknowledges that this is a problem for both government and employers. Research conducted by Scope and Virgin Media last year showed that disabled people are applying for far more jobs than non disabled people but are being invited in for interviews far less often. This disparity shows that there is still a long way to go to addressing attitudes and understanding of disability. People are looking to employers more and more nowadays to promote that they are an inclusive employer and to actively show that they are looking for a diverse workforce – understandable when you consider that Scope and Virgin Media’s research showed that 37% of disabled people who applied for a position believe that they were not hired because of their impairment or condition. James added: “I think what’s really clear is that the government needs to keep its eye on the prize and really move forward now on getting its policy recommendations in place to enable a million disabled people to get into work and I think importantly stay in work as well. And that requires not just action from government but from employers too.” UNITEMAGAZINE.CO.UK 21
Sarah Brisdion is a mother of seven-year-old twins, Hadley and Erica. Hadley has cerebral palsy and is a full time wheelchair user. Sarah is an outspoken campaigner, who you will find mainly ranting about the lack of Changing Places toilets, amongst other issues faced by families like hers.
WOULD YOU SIT ON THE LOO, PANTS DOWN, IN PUBLIC?
o? I don’t blame you. Using the toilet is something we prefer to do in private, not share with strangers. But not me! Oh no! I’m going to bare and share! On 11 May, I will sit on the loo in full view in a shop window for the entire day. Why? Because the cause that I fight for doesn’t get huge amounts of press coverage. It isn’t supported by big businesses or a host of film stars. It’s not on trend or easy to promote. It sadly requires extreme awareness raising tactics to get the attention it deserves. So what do I campaign for? Changing Places toilets, with benches and hoists. Without them, disabled people like my son, who need more than a grab rail in an accessible loo, have to lie on urine-soaked toilet floors to have their continence or sanitary items changed or to enable them to access the loo. I hope it will cause a great stir, achieve lots of coverage and get people talking about toileting. I believe if we can break down the taboo around pee, poo and periods, it will really help stop the needs of hundreds of thousands of disabled people being brushed further under the carpet. We all have to pee. Some just need a little more help than others. But does such an extreme stunt come at a cost? Are my children going to be embarrassed to see me on TV doing this? What if I accidently expose a little more than I want to? What if one of my clients feels this is inappropriate and no longer wants to work with
I BELIEVE IF WE CAN BREAK DOWN THE TABOO AROUND PEE, POO AND PERIODS, IT WILL REALLY HELP STOP THE NEEDS OF HUNDREDS OF THOUSANDS OF DISABLED PEOPLE BEING BRUSHED FURTHER UNDER THE CARPET.
me? Is this really good for my mental health and my children’s? I’m constantly questioning myself. Should I really be going to such lengths for the sake of toilets? I think so, yes. Not least for my son’s future. Every time I have to lie him on a toilet floor it breaks my heart and I swear a little bit of his confidence and happiness is stolen. I don’t want him to be my age and have to fight for his right to pee. And this is happening all over the country to hundreds of thousands of others. That’s the bigger picture here. I hope my kids can forgive the time I spend on these activities that is not spent snuggled on the sofa with them or taking them somewhere fun for the day (parent guilt is horrible). The government needs to change building regulations to ensure these facilities are mandatory. Huge multi-billion pound businesses need to stop ignoring continuous requests and fulfill their responsibilities under the Equality Act 2010. Until then, I’ll keep being as extreme as I can. Because nobody should have to lie on a toilet floor. That’s way more extreme! COME HEAR ME TALK I’ll be live at the Bathstore, 95-97 Baker St, Marylebone, London W1U 6RN, on 11 May 2018, along with special guests.
Clive is a freelance writer and researcher with a particular interest in social policy, disability and technology. An expert on a range of policy areas that affect the lives of disabled people, Clive works with government and charities to improve services while chronicling the latest developments through his writing.
THE LONG DELAY NHS WHEELCHAIR SERVICES
n July 2015 Baroness Tanni Grey-Thompson spearheaded the launch of a new charter to improve NHS Wheelchair Services: “For too long wheelchair services have been inadequate and it is time that wheelchair users are listened to and provided a proper service, rather than being marginalised. The huge variation in quality of services across the UK is astounding and means a huge proportion of wheelchair users are left immobilised, frustrated and ignored.’ Around 1.2 million people – 2% of the UK population – are thought to use a wheelchair, half of whom rely on the NHS Wheelchair Service to meet their mobility needs. “NHS Wheelchair Services are hideously underfunded,” says Alex Rankin, Director of Services at spinal injuries charity Aspire. “The lack of funding causes long delays in accepting referrals and carrying out assessments, which means that wheelchair users are waiting unacceptably long periods before getting their chairs.” Wheelchair Services in England are overseen by local clinical commissioning groups, GP-led bodies that shape and allocate funding to health services in their areas. The NHS Constitution guarantees access to a wheelchair within 18 weeks but NHS figures show that 30% are
FOR TOO LONG WHEELCHAIR SERVICES HAVE BEEN INADEQUATE AND IT IS TIME THAT WHEELCHAIR USERS ARE LISTENED TO AND PROVIDED A PROPER SERVICE, RATHER THAN BEING MARGINALISED. BARONESS TANNI GRE P
waiting more than six months and many struggle on for even longer. The NHS has pledged to halve the number of children waiting more than 18 weeks by April this year and eliminate overly long waits for everyone in 2019. However, a spate of reports suggest that the service is making little progress on these goals and may be deteriorating. An analysis published in the Health Service Journal last year found that 7,200 people between October and December 2016 had to wait 19 or more weeks. The delays were lengthening, with those with the greatest needs experiencing the most protracted waits. When the wheelchair is finally delivered, many find that it does not meet their needs. According to a survey of first time wheelchair users commissioned by the Back Up Trust, 24% of wheelchair service clients bought a second wheelchair because their first one was uncomfortable. A further 50% said they had purchased a replacement after their needs had changed. The Trust notes that services sometimes waste time and money by overlooking assessments conducted by specialist clinicians and often supply wheelchairs that only meet people’s basic mobility needs, ignoring how the equipment they are providing influences
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MOBILITY: WHEELCHAIR SERVICES other aspects of the person’s identity. Poor wheelchair provision can have profound consequences for the lives of disabled people. It is SHODDY SERVICES RISK LEAVING estimated that up to half of all wheelchair users will PEOPLE STRANDED, BOTH develop a pressure ulcer at some point during their life PHYSICALLY AND FIGURATIVELY AS caused by an unsuitable chair. For those with mobility THEY BECOME STUCK IN THEIR OWN HOMES WITH FEW PLACES TO TURN TO impairments, a wheelchair can be a passport to social FOR ALTERNATIVE SUPPORT. inclusion, enabling them to participate in family life, pursue an education, socialise with friends and forge a career. Shoddy services risk leaving people stranded, both physically and figuratively as they become stuck in their own homes with few places to turn to for alternative support. Some people are forced to resort to purchasing a wheelchair with their own money. However, with the cost of many models ranging from between £2,000 to £25,000 – plus any maintenance fees that might need to be paid during the lifetime of the chair – this is not always a realistic option. A growing number of people are turning to crowdfunding websites to raise the necessary cash. An investigation by The Guardian newspaper revealed that JustGiving saw a fourfold increase from £365,000 to £1.8 million between 2015 and 2016 for amounts raised for wheelchairs. This phenomenon was highlighted at the British Medical Association’s annual meeting last year when Junior Doctor Hannah Barham-Brown spoke about her struggles with the Wheelchair Service as a medical student. Doctor Barham-Brown, who has a rare genetic condition, was forced to wait six months for the NHS to provide her with a wheelchair that was unsuitable before raising funds online. These inadequacies are not new. A paper trail of the Wheelchair Service’s problems independent life. stretches back at least two decades when in However, there have also been further setbacks. A 2000 the government’s Audit Commission decision to transfer responsibility for funding specialist reported on ‘unexplained variations in all wheelchair services for people with the most complex aspects of service provision’ which bore little THE COST OF WHEELCHAIRS needs from the national to local level has resulted relation to the needs of local people. Since THAT SOME USERS HAVE BEEN in fragmentation and placed the service in direct FORCED TO PAY FOR OUT THEIR then, a stream of reports commissioned by OWN POCKETS competition with other health care spending priorities. public bodies and charities has called on This has worsened the postcode lottery as local clinical government to reduce waiting times, improve commissioning groups spend varying amounts on the assessments by making sure that they engage provision of wheelchairs. with people’s social as well as clinical needs Calls for national standards which might level and offer people more choice. out some of the uneven provision across the country There are signs that policymakers are THE ESTIMATED POTENTIAL continues to go unheeded. starting to afford Wheelchair Service the ECONOMIC CONTRIBUTION OF WHEELCHAIR USERS WHO ARE The underfunding of wheelchair services has been attention they desperately need. Baroness CURRENTLY OUT OF WORK shown to be counterproductive. For every 182 wheelchair Grey-Thompson’s involvement in recent years users out of work, the government benefits bill can inflate has lent a high-profile voice to a cause that has to up to £1 million, whereas their economic contribution often been sidelined. In 2015/16 the NHS when in work can be up to £4.7 million. belatedly started to collect and publish data Expect little to change until the NHS learns to do its on the performance of Wheelchair Services sums right. in a bid to promote greater transparency OF WHEELCHAIR SERVICE CLIENTS and better results for wheelchair users. BOUGHT A SECOND WHEELCHAIR BECAUSE THEIR FIRST ONE WAS Personal wheelchair budgets have been MORE FROM CLIVE GILBERT UNCOMFORTABLE Clive is the editor of dispATches assistive technology introduced to give people more control over newsletter, you can read this at designability.org. the purse strings, allowing them to select the uk/read-assistive-technology-news wheelchair that will most help them to lead an
KNOW YOUR RIGHTS: LEGAL JARGON
WORDS: MIK SCARLET
RIGHTS Welcome to our first instalment in a series of articles about knowing your rights as a disabled person and knowing what steps to take when you feel you have been discriminated against. ïƒ†
KNOW YOUR RIGHTS: LEGAL JARGON
et’s face it, as disabled people we’ve all faced discrimination. It becomes so much of your day to day experience that finding the strength to fight back can be unachievable. Instead, we find ourselves letting things go and hoping they won’t happen again. I know I am so used to finding myself unable to live my life as I wish due to barriers that should really have been fixed by now, 23 years after the Disability Discrimination Act came in to force, that I shrug my shoulders and move on. Sadly it has become all too apparent that things won’t change if we don’t begin to raise our voices. The problem is the Equality Act, and the DDA before it, places the responsibility on taking action when we face discrimination on disabled people themselves, so here at UNITE we thought we needed to start giving advice on what the law says our rights are as disabled people and how to enforce them. With this in mind we have been gathering a team of disabled experts, our very own Ex-Men, who are going to guide us through on our journey to know our rights. In this issue we’re not going to focus on specifics, but instead explore how to make the first move when you feel you’ve been discriminated against. In future issues we’ll explore specific topics and situations, with advice from our growing team of experts to set you on the right path. So what do you do when you feel you have been unfairly treated just because you are disabled?
I spoke to the first expert to join UNITE, Helen Dolphin, a para-legal at Fry Law. Helen is also well known as an expert on motoring for disabled people. She advises that the first step is to write a letter of complaint. You have up to six months, minus one day strangely, to allege you have been discriminated against but you should try to get your letter to the correct people as soon as possible. If you’ve faced discrimination from a small business, then go directly to the company address, but for bigger companies send your letter to both the address where you faced
IF YOU’VE FACED DISCRIMINATION FROM A SMALL BUSINESS, THEN GO DIRECTLY TO THE COMPANY ADDRESS, BUT FOR BIGGER COMPANIES SEND YOU LETTER TO BOTH THE ADDRESS WHERE YOU FACED DISCRIMINATION AND TO THE COMPANY HEAD OFFICE. HELEN DOLPHIN, PARA-LEGAL AT FRY LAW
discrimination and to the company head office. The letter should contain an explanation of your impairment or condition, a description of the discrimination you faced and the effect it had on you. You should explain what you believe the service provider should have done to prevent the discrimination, such as the removal of a step to allow access for a wheelchair user, how this provision had not been met and how by not providing this adjustment it was either impossible or unreasonably difficult for you to use the service. You should include a request that the service provider should acknowledge receipt of the letter, with one month being considered a reasonable period. Helen also highlights that you should add what you would want from any action around your letter. Do you just want a change in policy, or a physical change to the building or even compensation? It’s important to note that if you faced discrimination on a special
occasion, such as not being able to access a restaurant for a family celebration, you should mention this too as it means the event is not repeatable. This is important depending on how the case proceeds. Helen has a collection of example letters available through Disability Rights UK, that you could use, but also explained that you do not have to send a letter as a first step. If you feel that the discrimination was such that you want to take it to court, then go straight to a legal company and begin the process.
BE CLEAR AND CONCISE
I learned from a personal experience that, if you can, try to get the details of any witnesses. If someone sees you being refused service or notices that there isn’t any toilet provision, ask them if they would be prepared to make a statement on your behalf. I also get sent a lot of letters of complaint by people who want my advice on what they have written. One common problem is they are far too long. Pages after pages of confused, angry waffle might help you get your frustration out but it doesn’t help make your case. I’d advise no more than two pages of A4. Write down what happened, take a day or two to calm down and then go back and rewrite it to make it as concise as possible. Be polite as well. You might feel angry as hell, but a civil polite letter will be far more effective. As Helen explained, put everything in, including your desired outcome, but make it as easy to read and as clear as possible. Maybe give it to someone who wasn’t there to see if they can easily understand why you are upset.
Lastly, don’t let it all get to you too much. Write your letter, send it out and wait. Hopefully you’ll get a reply, and may be able to reach a resolution that you’re happy with. If not, then it may be time to find a legal company that offers a ‘no win, no fee’ agreement who will take your case further. Another angle might be to go to your local press with your story and go to your local Citizen’s Advice Bureau for help in how to proceed.
Mr. Rowe, Nottingham
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AND ANOTHER THING...
Lynley Gregory is an ex secondary school teacher who became disabled following a spinal fracture three years ago. She is now a wheelchair user who spends her time raising awareness of disability through her weekly blog ‘Topladytalks’ which you can read at topladytalks.com.
THE HIDDEN COSTS OF BEING DISABLED
became disabled three years ago and in my ‘new life’ as a wheelchair user, one of the biggest issues to cope with is the hidden costs that come with it. It’s costly in emotional terms, in physical terms and most obviously, financial terms. We all struggle to ‘get by’ as best as we can, disabled or not. But if you are disabled, there is a real need for more help to make all the adjustments needed to live life again. What costs? I hear you ask and surely this is all paid for by the government? Well, as every disabled person knows, the hidden costs are everywhere and no, this definitely isn’t all paid for! There’s the cost of losing your job, because despite ‘reasonable adjustments’ it’s still too difficult for you to work. The cost of needing a better wheelchair than the NHS can provide. Now, they certainly don’t come cheap so you have to turn to family, friends or even crowdfunding to raise the thousands needed. The cost of needing a different car because your wheelchair won’t fit into the boot. Yes, we have Motability which we are so grateful for but any vehicle large enough to accommodate my powerchair has a high initial deposit and that takes a chunk out of my ever-depleting funds. The cost of alterations to your home which the council won’t fund if you have a small pension and you’re not on income related benefits (and even if you were, most councils can’t fund anything above the bare minimum). I was actually told by my OT that “being clean is not a daily living requirement” so they couldn’t fund changing my bathroom.
The cost of needing to heat your home day and night to keep pain levels manageable and the cost of extra EVERY energy to charge your wheelchair or to keep your dialysis DISABLED machine working. PERSON KNOWS, The cost of anything that has the word ‘disability’ tagged THE HIDDEN on to it. Everything mysteriously becomes twice or three COSTS ARE times the price when this happens, anything from cutlery EVERYWHERE to gloves, from rails to clothing, blankets and heat mats, AND NO, THIS anything and everything increases in price. DEFINITELY ISN’T Plus, the emotional cost of going through the benefits ALL PAID FOR! process which to those of us who have had to endure such a time, is one of the biggest costs to your mental and emotional health. So all in all, there are a lot of hidden costs that I hadn’t bargained for and combined with a drop in income, equals a very stressed and anxious me. And I’m certainly not the only one. What is the answer? I have no clever ideas; the help that councils offer seems to vary widely, depending on where you live and any benefits I get are constantly being reassessed (or so it feels). I know there is no ‘pot of gold’ and I’m no politician but I am only asking to have the same quality of life as when I was not disabled, why should it cost so much to have my life back? DO YOU HAVE SOMETHING TO SAY? Want to vent about something or someone? Then this is the page for you! We invite you to air your frustrations and share your thoughts with UNITE Magazine. Simply email email@example.com and make the subject of your email ‘And Another Thing’.
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Designed & developed exclusively by Sirus Automotive, the Ford LiNK allows you to drive from or be seated up-front in your wheelchair. With an innovative access system combining an ultra short and shallow ramp with an automated side sliding door and custom air suspension system, the Ford LiNK truly provides a new approach to vehicle conversions.
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SIRUSAUTOMOTIVE.CO.UK 28/03/2018 27/03/2018 15:27 09:47
UNITE is aimed at disabled people and those parents and carers fighting for the rights of their disabled children. We aim to highlight the i...
Published on Apr 10, 2018
UNITE is aimed at disabled people and those parents and carers fighting for the rights of their disabled children. We aim to highlight the i...