Help for the handicapped – turning back the equality clock

please help spastics

The handicapped; the deaf and dumb; the feeble minded; the blind; the imbecile and the cretin – these are all terms used to describe disabled people during the Victorian era in which many were usually reliant upon charity, and often hidden away in institutions.   Recently journalists have warned that the increase in food banks marks a “return of a problem some might have thought we banished after the Depression, if not the Victorian age”.   Guardian journalist, Jonathan Freedland writes “This was why Britons sought to put the Victorian era of charity behind us, why we decided that sometimes a state service is better: because there is less shame in claiming a nationally mandated benefit than in going to a church hall, being handed a food parcel and having to nod your head and say thank you.”

The prospect of welfare provision being based upon the Victorian era of ‘charity’ is a gruesome thought for disabled people. But we wouldn’t actually have to ‘time travel’ that far back to experience a considerable reduction in our quality of life. The recent WOW (War on Welfare) campaign, championed by disabled actress and comedienne Francesca Martinez, also raises concerns around the regressive effects welfare cuts will have on disabled people. Martinez warns of disabled people falling into destitution and being subjected to humiliation.  With 105,000 signatures, the WOW petition has successfully pressurised parliament into agreeing to an independent cumulative assessment of the impact of changes in the welfare system on sick and disabled people, their families and carers. I mentioned some of these cuts in an earlier blog.

Quite rightly there has been a lot of focus on the cuts to income replacement benefits for those who either cannot find work or are too sick to work. But it’s worth remembering that it wasn’t until the early 1970s that state funding was also given to help disabled people with the extra cost they incurred because of their impairment. These new benefits didn’t hold the same stigma as the income replacement benefits and as such revolutionised the way disabled people participated and contributed to society – Mobility Allowance assisted with the costs in getting around; and Attendance Allowance helped to pay for the additional costs related to living in a disabling society. They were often used to pay for life changing specialist equipment, such as “invalid carriages”, now mobility scooters. Twenty years after their introduction these two benefits merged to form DLA (Disability Living Allowance). DLA, like its two predecessors, is based on perceived need and is not, and never has been, an ‘out of work’ benefit.

invacarSimultaneously, the 1970s also brought about greater provision of community care and rights for disabled people through the 1970 Chronically Sick & Disabled Persons Act – a ground-breaking piece of legislation described at the time as ‘a Magna Carta for the disabled’. Local authorities were responsible for providing welfare services and practical support for people in their own homes. A code of practice was introduced to increase the general accessibility of public buildings, requiring local authorities to provide parking and accessible toilets for disabled people.   Disabled badges for cars were introduced with exemptions for parking and other access. Provision was also made for “invalid carriages” to be used on public roads, footpaths and pavements. The 1970 Act also encouraged the representation of people with knowledge and experience of disability on local authority committees and other public bodies.

In the years since, further rights based legislation has extended the provisions of the 1970 Act. These include: The Mental Health Act (1983), The Disabled Persons Act (1986), Disability Discrimination Act (1995), The Community Care Direct Payments Act (1996) and The Equality Act (2010).

Last year the current Government attempted to remove the legal duties established by the aforementioned Acts – including the Chronically Sick and Disabled Persons Act – describing a council’s duty to care for disabled people as a ‘burden’. Although this was unsuccessful (for now), local authorities are still struggling to meet these legal duties because they are facing the biggest cuts in living memory.   These cuts are particularly alarming following the Government’s decision to close the Independent Living Fund – a national pot of money ring-fenced to provide care for the most severely disabled people. The government are also replacing Disability Living Allowance with a new benefit – PIP (Personal Independence Payment). Whereas the move from the 1970s Attendance and Mobility Allowances to DLA widened the scope of people eligible for the benefit, PIP will drastically reduce the range.

Meaning these crucial pillars underpinning our ability to be independent are under serious threat. Lyn Levett’s story below explains what life was like for disabled people before these pillars were put in place.

The government have repeatedly claimed that because disabled people now face fewer disabling barriers, they need less support. Whilst it may be true that access to public services has improved, the fact remains that many of us still cannot access these services without additional support. The DLA mobility component, for example, has never been a financial substitution for ramps or lifts to public transport services. This component has been awarded for a range of impairment related needs, most notably one’s ability to get to these services in the first place. The new, rather ridiculous, criteria for being awarded the equivalent PIP could potentially result in the repossession of an estimated 90,000 motability cars and scooters. This is a far cry from the allowances introduced in 1970s, which enabled people to buy “invalid carriages” to gain access to their local community.

The government have also made similar unfounded statements to justify other welfare reforms that reduce support for disabled people – and of course other marginalised groups in society. I really do hope the WOW campaign is successful because the thought of turning the disability equality clock back 40 years is a frightening enough prospect, let alone back to the Victorian era.


 lynnLyn Levett’s Story

Lyn was born in 1960 and has a significant physical impairment (cerebral palsy). She is a musician, music producer and regularly performs with the world renowned British Paraorchestra. Launched in 2011 the British Paraorchestra played alongside Coldplay at the 2012 Paralympic ceremony. They have also performed the National Anthem at Buckingham Palace. As a solo artist, Lyn has recently been commissioned to produce a score for a documentary about the Spanish paracyclists. Paraorchastra Conductor, Charles Hazlewood describes her compositions as the “most dizzyingly brilliant electronic music”.


Lyn is a credit to our nation – but her achievements wouldn’t have been possible without the community care support she received later on in her life.  Despite her music talent and intellect, Lyn left school without any qualifications and had little hope of an independent life.    She attended a special needs boarding school during her formative years, and subsequently ‘lived’ in a number of different residential homes as a young adult.   The homes, run by the charity Scope, were very structured – The smaller sheltered accommodation training places, also run by Scope, were not much of an improvement.   In one training place, Lyn recalls that the managers were using the paid staff to do their own domestic jobs instead of providing residents with care.


During the early 1990s Lyn managed to escape from these institutions and moved into her own home. This was made possible with the help of improvements in community care – improvements the current government want to reverse. It was during this period that she had the opportunity to explore and develop her musical talents. Lyn is terrified the welfare reforms are going to push disabled people back to a time where they were shut away in institutions with very little choice and control. And she knows only too well what that is like.


“It wasn’t until the early 1970s that state funding was also given to help disabled people with the extra cost they incurred because of their impairment. These new benefits revolutionised the way disabled people participated and contributed to society”





“Before the 1990s people like me had no choice about who provided us with personal care, when we got up or when we ate. There was even a ‘bath list’. We were conditioned not to think for ourselves and when we did we were often penalised for making suggestions”    Lyn Levett, Musician – British Paraorchestra


Enchanted B****cks

I am slightly embarrassed to admit that my partner and I bought our five year old daughter the ‘Enchanted Ball’ game for Christmas. Marketed as a very pink board game for girls, four plastic princesses try to win the affection of one prince. Motorized magnets move the princesses and prince around until he finally hooks one with his arm. The game is very dull (for us, and her), and gives out an extremely dubious message to little girls.

The gender bias in toys starts as young as one or two years old and can have a huge impact on children and their social play.

Educationalists and parents have reported an increase in incidences of children being bullied for liking activities or things deemed to be for the opposite gender to themselves.

Last week an 11-year-old boy tried to kill himself after he was bullied at school for being a fan of My Little Pony, because it was a “girls” programme and therefore he must be “gay”.   This shockingly sad incident has rightly raised issues of homophobia in schools, which according to Stonewall is still a huge problem in the UK.   But should this incident also question the negative impact of enforced gender stereotyping of toys and TV programmes?

CBBC has recently been criticised for gender stereotyping and promoting girls as ‘over emotional’ and ‘manipulative’.   There is evidence that gender stereotyping in toys is putting girls off maths and science, combatted to some small degree by the design of toys such as the Roominate. Research also suggests that it’s not just the potential career paths of girls that we need to worry about – gender stereotyping is also having a detrimental impact upon the behaviour and academic achievement of boys.

Phrases like “boys things” and “girls things” have crept into the minds of children as young as two and three. Young boys are discouraged from playing with toys we feminise, expected to “man up” and hide the emotions needed to developing empathy and self-awareness (such as sadness). Girls are encouraged to aspire to looking pretty and value good looks far above being intelligent. From my own personal experience, at the age of just three my daughter was quick to inform her Nana that she was not smart, she was pretty!

I have no objection to my daughter playing with princess dolls, wearing pink and going to ballet lessons – but what I do object to is her worrying she will be teased for playing with toys that she considers to be “for boys”. As a child growing up in the 1970s I can’t remember worrying about whether the toys I played were specifically “for girls”. Of course, there were toys marketed at boys and toys marketed at girls, but nothing like the extreme gender bias in toy marketing today. In the 1970s we grew up with a lot of gender-neutral toys such as Lego and Play Dough.

A parent led group has launched a Let Toys Be Toys campaign for gender-neutral toys. They are “asking retailers to stop limiting children’s interests by promoting some toys as only suitable for girls, and others only for boys”. This is welcome move and has already sparked leading retailers, such as Marks and Spencer, to make all its toys gender neutral by spring 2014.

Let’s hope that other retailers follow their lead.


Two Thirds Column

Care in the Condemmunity – assisted suicide against a backdrop of cuts

Recently there has been a resurgence in the campaign for the right to die, with Margo MacDonald pushing forward the assisted suicide bill in Scotland.

As a disability rights campaigner, I have always sat on the fence with regards to the assisted suicide debate. I have no idea what it is like to live with a terminal illness, be in constant agonising pain or to suddenly lose a significant amount of functioning ability. Nevertheless, I do know what it’s like to live with a significant physical impairment – I know what it’s like to receive good support and to be part of my community and I also know what it’s like to cope with inadequate support, and the negative impact that has.

Against the backdrop of  cuts to welfare, particularly palliative and social care, should we be pushing forward the right to die?  The harsh facts are that cuts to care are going to increase in the next couple of years.  Nearly 30% of hospices have already had their statutory funding cut and since 2007 there has been a 25% reduction in people receiving care at home.  Many of us have already had our care packages dramatically reduced or withdrawn completely.

Across the UK, Councils are limiting home care visits to just 15 minutes, and up to 220,000 care workers receive less than the minimum wage – flouting employment law and compromising quality.  A small glimmer of hope has been the introduction of £3.8b Better Care Fund,  an integrated social and health fund to fill the gap.  However there is concern that this fund will be insufficient and inappropriately used by councils.

Care in the Condemmunity (C) 2013
Care in the Condemmunity (C) 2013

Until we can offer people appropriate care and “right to life”, how can we ethically offer them “the right to death”?

There is an assumption that impairment makes people suicidal because it compromises quality of life.  This is particularly assumed in the cases where people have impairments which are considered “severe”, such as locked in syndrome.  But according to this survey published in the BMJ, three-quarters of people with locked in syndrome were “happy” and only 7% had suicidal thoughts.

The most common reason people commit suicide is depression, and the biggest contributors to depression are social isolation and lack of choice and control.  To put it bluntly if you can’t choose when to get up, what underwear to put on in the morning, and who helps you put them on, you will probably feel disempowered and fed up.  Fair enough, you may still feel thoroughly fed up even with all the support, but you will DEFINITELY feel utterly miserable without it.  And this is my point.

This blog is not necessarily a supporter of the Not Dead Yet campaign, however reports show that there is a direct correlation between welfare cuts and assisted suicide.  Disability rights academics, such as Paul Longmore, argue that in the US assisted suicide rates have a reciprocal relationship with welfare cuts.

Will this legislation be pushing people the Government considers too inconvenient to support into an early grave?  Can we, as a society, morally live with this?


draft hanging wheelchzir

Image from Nash & Selway’s latest photography project about the impact of welfare cuts on disabled people in the UK. – Hanging in the Balance. #hanginginthebalance


Access All Areas

Accessibility is often misunderstood as being either all encompassing, or just the provision of ramps. Accessibility is indeed far reaching and does encompass a wide range of issues (e.g. accessible toilet specifications; hearing aid loop systems; appropriate room temperature), but the phrase “fully accessible for all” is a bit of misnomer. It’s impossible to create an environment whereby facilitators can accommodate everyone’s potential needs. People could have requirements that may be very obscure, completely impractical or that would fundamentally change the nature of the service. This is why disability rights campaigners have spent a considerable amount of time working alongside politicians and architects to produce workable guidance and legislation around accessibility.

Drawing on my own knowledge and available resources, I have recently produced two basic guides for DM around accessibility. One document focuses on the practical aspects of accessibility in terms of venues, the other focuses on inclusive workshop design and delivery.

In this blog I will address a few of the issues facilitators should consider when planning an accessible workshop. The most import aspect of ensuring the design and delivery of a workshop is inclusive is the facilitator’s ability to anticipate, identify and respond to potential disabling barriers. All of us, regardless of whether we have an impairment or not, learn and communicate in lots of different ways. However, it is common for facilitators to plan workshops based on their own personal learning style. Therefore, in order to incorporate a range of learning needs facilitators should teach the way that students learn as opposed to expecting them to learn the way we teach. Taking into account the seven learning styles is a good place to start.


learning-styleCommunication between facilitators is also very important to help avoid repetitive activities. Repeating an activity, or using the same format, is not only rather dull but can also create a continual barrier for particular participants.

It is helpful to offer participants a range of ways that they can respond – for example writing or drawing or audio recording may all be appropriate methods for achieving the same outcome whilst at the same time opening up access possibilities. On a personal note, writing can be a barrier for me, however, this doesn’t mean I don’t enjoy or want to participate in activities that involve writing but simply that I would appreciate consideration from the facilitator about how these can be adapted to make them more inclusive. For example, written tasks can be done in pairs or small groups with one volunteer designated as the writer or could also be completed using technology, such as an i-pad.

There are lots of ways in which you can help people to feel involved – simple things like taking a show of hands may allow less confident individuals the opportunity to contribute to an exercise without being put on the spot. A good facilitator should be responsive to the context in which they are working and the needs of individual participants. Having an open, friendly approach to identifying barriers during a meeting, event or workshop is key, as well as preparation via email beforehand. A sense of easy communication will encourage people to share any access ‘blips’ before they become insurmountable problems. It is therefore a good idea to get into the habit of asking if anyone has any specific access requirements, and being creative about how people can contribute and express ideas.

Two Thirds Column

“There are lots of ways in which you can help people to feel involved – simple things like taking a show of hands may allow less confident individuals the opportunity to contribute to an exercise without being put on the spot. A good facilitator should be responsive to the context in which they are working and the needs of individual participants”

Indifference to difference: a feline guide to equality

As an equality consultant I find that some people assume that equality means treating everyone the same. However, equality is essentially about creating a fair playing field so that everyone has the same chances in life.  For many groups this means making adjustments, whether they are financial, behavioural or physical, to ensure they have the same access to opportunities.   Treating everyone the same isn’t always the best way to create a fair playing field, as my beloved cat, Milly, demonstrates. Like most cats, Milly lacks empathy, understanding and has a general unwillingness to make allowances for others.  Some would argue that Milly takes these feline qualities to a new extreme!

‘Slightly’ bad tempered in nature, she doesn’t take kindly to any human stepping in her path – you will be swiped, scratched and hissed at. She makes no concessions for people who may be old, frail, walking with crutches or using a wheelchair.   If you are not quick enough to dodge her angry little paws – tough s**t!

She has a very definite ‘no dogs’ policy, and takes no doggy prisoners – assistance dogs included. She once threw herself onto the back of a very gentle and sweet guide dog called Sam. In a desperate attempt to shake her off, a terrified Sam charged across a very busy road dragging his owner with him. At the time I was dating the owner – unsurprisingly the relationship didn’t last long.

She is quite happy to sabotage dinner dates (of any kind) by hissing at the guest, jumping into their plate of food or making herself sick under the table – no exception for sensitive types or anyone with cat allergy. It doesn’t matter how much attention she gets beforehand either, she wants all the attention all the time and will not let anyone step in her way.

As well as monopolising all the attention, she doesn’t like to share her wealth. She is quite happy to eat other people’s food even after she has conned many ‘food bailouts’. Her dinner stealing antics reached a new height when she managed to steal my unemployed ex-flatmate’s last meal of the week.  With no money to replace the meal my ex-flatmate was particularly perturbed – especially as she had taken the necessary precautions to protect her assets by covering her freshly made meal with tinned foil, a plate, and a tea towel. In a similar manner her toiletry habits make no allowances for ones economic status – only the most expensive cat litter will do for her business. When my partner became a student we tried to persuade Milly to try the downshift challenge. Not convinced, she decided our daughter’s new beanbag would be a much more suitable option. She certainly isn’t prepared to be ‘all in it together’.

Her many quirky hobbies lack an appreciation of personal space and she has poor cultural awareness.  She will hog the laps of any human she likes, pawing at their stomach whilst persistently waving her tail in their face.   Luring them into a false sense of security, she sometimes uses her purring charm and sweet meows to entice them into stroking her. After allowing them to stroke her for a while she will then pounce on their hand in a completely unprovoked attack!  However alarming this activity may be, it’s not nearly as inappropriate as her “head/hair biting” hobby. This hobby has included people with ponytails, long hair, short hair, curly hair, red hair, no hair, bald people with sunburn and a social worker wearing a headscarf.  She really doesn’t care how freaked out the other player (aka victim) feels or how politically incorrect playing this game may be.

Operating a rather draconian chair tax, Milly will take ownership of any seat she likes in the house, whenever she likes. You may be heavily pregnant or a first time Mum needing to sit and feed your baby – she isn’t going to budge without issuing a penalty.  It doesn’t matter if the chair includes maternity support pillows, extra lumbar support, a collection of your child’s favourite toys or even comes with wheels. A wheelchair is not a mobility aid but rather her chair on wheels – and tipping her out of it will result in a particularly heavy and painful fine. Adding insult to injury she owns an entire free second chair collection (next door) for when she is away from her constituency. The cat is not for moving!

Milly’s ‘free spirited’ nature really does show us the drawbacks of a non-concessionary world in which everyone is treated exactly the same – just imagine what life might be like if we were ruled by a coalition of Millycats?!?


Two Thirds Column


From Paralympic sceptic to Paralympic addict

Last week I attended the largest ever disability arts event in history, the 2012 Paralympic Games Opening Ceremony. A previously unimaginable spectacle, it featured the crème de la crème of British disabled artists, scientists and athletes; the theme of the ceremony was enlightenment.  We were taken on a bright, and at times bewildering, journey of discovery with Professor Stephen Hawking as our guide.  

It’s hard to describe the sheer scale of the show. With a cast of well over three thousand and an audience of eighty thousand, the stadium felt, at times, almost unnervingly euphoric. It was easy to get caught up in the sense of defiant jubilation, but also possible to see how the emotions of a vast, unified crowd can be manipulated for good or evil.

Visual showstoppers included an enormous ‘Newton’s apple’ – representing the discovery of gravitation – and the huge revolving book symbolising the Universal Declaration of Human Rights.  A giant whale followed by a glowing ball of energy representing the Higgs Boson were also breath-taking. Disabled artists glistened and danced above our heads; a sea of beautiful coloured umbrellas spun beneath our feet.

It was thrilling to see so many familiar faces in key roles – Sophie Partridge, old school friend John Kelly, Caroline Parker and Matt Fraser to name but a few – all disabled artists I have admired and followed for several years. A far cry from the dingy student venues I saw them performing in at the start of their careers!

Many defining moments stick out – watching Matt Fraser address eighty thousand people during the warm-up sent shivers down my spine. (I first saw Matt performing to ten people at Sheffield University). At one point he encouraged every single audience member to bite into a (freely provided) apple at exactly the same moment, following a dramatic countdown. The thunderous crunch was audible even to those watching at home, but what couldn’t have come across on TV was the sweet smell of apple juice that hung in the air for minutes.

It was great to see a reproduction of Marc Quinn’s hugely influential ‘Alison Lapper Pregnant’ sculpture on stage. I also loved watching the show’s central character ‘Miranda’  (a nod to Shakespeare’s The Tempest) breaking a symbolic ‘glass ceiling’ with a walking stick.

But the highlight of the ceremony came when the Graeae Theatre Company jerked the audience out of their seats with a version of Ian Dury’s misunderstood classic, Spasticus Autisticus (accompanied, somewhat incongruously, by Orbital). After hours of ethereal pop balladry, earnest ‘new commissions’ and dirgey classical interludes, this impassioned rallying cry came as a welcome surprise.

On a negative note, I found (like journalist Lisa Egan) the ‘inspirational’ ‘triumph over tragedy’ commentary about the athletes, both during the live show and throughout the short clips, slightly nauseating and unnecessary.

It is also arguable that many of the disabled high flyers being celebrated in the show have risen to the top of their respective careers against the backdrop of a more secure welfare system. The threat that current ’reforms’ pose to disabled people was, for me, a troubling thought that recurred throughout the night.

But Professor Stephen Hawking summed up the true message of the ceremony when he said:

“We are all different, there is no such thing as a standard or run-of-the-mill human being but we share the same human spirit. What is important is that we have the ability to create. This creativity can take many forms, from physical achievement to theoretical physics”.

An unforgettable night that has certainly sparked a new interest in disability sport!

“We are all different, there is no such thing as a standard or run-of-the-mill human being but we share the same human spirit. What is important is that we have the ability to create. This creativity can take many forms, from physical achievement to theoretical physics”   Stephen Hawking 2012