That Awkward Moment

A new romcom ‘That Awkward Moment’ has got us thinking about disability and awkwardness.

On the Scope blog we regularly hear from disabled people about attitudes to disability.

It can be serious. 

But more often than not it’s what you could call innocent ignorance.

And the results can be comedy gold.

Nothing beats Adam Hill’s line from the opening show of The Last Leg.

“I had someone ask me, when I said I had an artificial right leg: ‘Can you still have sex?’ Yeeeeeaah?! What does your husband do? Take a run up?”

Here are some bloggers on their favourite awkward moments.

Blogger Wheeler Wife lists some of her favourite Awkward Wheelchair Moments.

“Passing people in the hallway who plaster themselves to the wall in an attempt to let you pass by. Just last week a 250+ pound construction worker dropped what he was working on and assumed a body search position against one wall with arms and legs outstretched, panicking that he had not created enough space for me to get by. “Oh, you’re ok, I can get by,” I replied.”

We also like this post about a train journey from Danny Housley, the Social Media Coordinator for disABILITY LINK.

“I’m sitting by the door, getting ready to head to an National Federation of the Blind meeting and these people across the aisle from me are staring, and I mean staring hard. I’m pretty sure they were looking so hard that my face was almost bruised.  Anyway, the mother/guardian of these people (they were mid to late teens) leans in and whispers for them to stop looking.  They didn’t. Instead, they start waving and making faces, at which point I lean over and say: “It’s gonna freeze like that.” They looked horrified and the mother nearly fell out of her seat laughing (and then immediately turned on them for a scolding).”

Finally, it’s not real, obviously, but we thought we’d also stick in Francesca Martinez’s appearance in Extras…the whole episode is one big awkward moment.

This year we’re going to be launching a new bid to make people think differently about disability – we think we need to start talking about why these moments become so awkward.

To kick things off, we want to hear your awkward disability moments. Let us know below:

Honorary degree for Scope’s Chair

Alice MaynardScope’s Chair, Alice Maynard, has been recognised for her significant contribution to society by the University of York. The University, where Alice also did an undergraduate degree, has given her an honorary degree.

Alice has been chair of Scope since 2009. She is also founder of Future Inclusion Ltd, which works to encourage good governance, inclusive practice and ethical business.

Alice was previously Head of Disability Strategy at Network Rail, and in 2001 was seconded to Transport for London where she developed its first social inclusion plan.

Here is an extract from an interview with York Vision, in which Alice describes what the honorary degree means to her…

Firstly, congratulations! What does honorary degree from the University of York mean to you? 

Thank you. It’s amazing. It’s a bit like getting to the top of Everest (not that I ever have) without actually having to make the effort to get there. It was great getting the doctorate that I’d worked for, but I’d worked for it, whereas this is a real gift and an honour.

You have BA in Language from the University of York. How did your time at York help you become what you are today? 

I had a great time at York. I learned a huge amount – not just about language and linguistics. It was a time when I really became a grown-up. I began to understand what I was capable of in the big wide world. I was effectively a fairly small fish in a big pond rather than being the big fish in the small pond that I had been in the girls only special school I went to as a teenager. But I did end up using my language and linguistics. When I left York I was working in the IT industry, and my second job involved localising a US product for the European market. I found my linguistics really useful for that. It made me a valuable team member, and enabled me to demonstrate what I was really capable of and really shine. It was in that job, and the subsequent job with another US company, that I really established myself in business and laid the foundations that helped me get my MBA, set up companies, and even chair Scope.

What are the biggest challenges for disabled graduates entering the labour market in 2014? 

There are enormous challenges for any graduates entering the labour market in 2014. When I graduated, it wasn’t all sweetness and light – I had a choice between two jobs and, fortunately, the one I chose was secure. Had I chosen the other, I would have lost it straight away. They rescinded their offers to all graduates because of the economic conditions at the time and several of my student friends were affected. But I guess today part of the issue is there are just more graduates now than there were in 1980. So if you’re disabled, the competition is even more fierce, and although the attitudes of many employers have improved over the years, disabled employees can still be seen as a potential burden on the firm rather than a really valuable potential employee. Disabled graduates need to demonstrate even more strongly, therefore, what their ‘unique selling point’ is and find a company that will appreciate them. But they still need to look for somewhere they can work that they can really passionate about, though, because if you enjoy your work you’re most likely to shine – and doing something you hate is pretty miserable anyway!

What do you hope to achieve as chair of Scope?

At the very least, I’d like to think I’ll leave the organisation in a better place than I found it and give the next chair a solid foundation to build on. But really I want to make sure that when I step down in October this year I leave an organisation that is fit for the future and better able to achieve its vision of a world where disabled people have the same opportunity to achieve their life ambitions as everyone else does. To do that, I have to make sure that the Board is fit for purpose: that the right people with the right skills, who are passionate and knowledgeable about the issues, are round the table, and that they work effectively as a team. Then they can both support and challenge the Chief Executive and his senior team as they implement our strategy so Scope can drive the change in society that will move us all ever closer to that vision.

Using photography to challenge people’s stereotypes

Guest post from Elle Jepson, a photography student at Middlesex University in London.

Four photos of Elle's brother, with difference facial expressionsI think it’s very important to capture people with disabilities and mental health issues in a way that shows it’s only a small part of them, not entirely who they are.

Having had two profoundly autistic brothers and a best friend with schizophrenia means I’ve often battled with prejudice. When I was younger, just being related to two people as profoundly disabled as my brothers, was enough to be belittled and mocked – and I wasn’t even the person dealing with the disability.

These experiences have shown me that people have such a set idea of what it means to be disabled, influenced by what they see in the media and in things like art and photography.

Four photos of Elle's other brotherMy new project is called ‘Identity’, and it’s about how people are boxed into a stereotype once people have found out a person has a disability, and my aim is to take pictures where you can’t tell if the person in the pictures is disabled or not because it’s not about that, it’s about who the person is aside from that.

Basically my aim is to show in portraits that there is more to a person than what they may be diagnosed as, if that makes sense. I feel this project is one way I can help change the bias surrounding disability.

If you’d like to get involved with the Identity project you can email Elle at ellejepson@yahoo.co.uk. See more of Elle’s photos on her blog.

What the Conservatives and Labour say about welfare reform and disability

Today the Work and Pensions Secretary Ian Duncan Smith gave a speech to mark the 10th anniversary of the formation of the Centre for Social Justice think-tank about welfare reform.

Here is what he had to say about disability:

“Of course in the most severe cases of sickness and disability, it is right that welfare should support individuals, but even then, it must be about more than sustainment alone. It should be about helping people to take greater control over their lives.

For all those who are able, work should be seen as the route to doing so – for work is about more than just money. It is about what shapes us, lifts our families, delivers security, and helps rebuild our communities. Work has to be at the heart of our welfare reform plan, or all we will do is increase dependency not lessen it.”

Read the speech in full on the Spectator website, or with other comments on the Guardian’s politics live blog.

On Tuesday Rachel Reeves, the shadow work and pensions secretary laid out her party’s stance on social security at the Institute for Public Policy Research (IPPR) think-tank, and here is what she said about disability:

“Now it’s important to say at the outset that there will always be people who cannot do paid work, because of illness or disability.

“And it is part of our responsibility to them to make their rights a reality: rights to dignity and respect, to a decent standard of living, and to the resources and support that can empower them to contribute and participate equally and fully in society.”

Read the speech in full on the New Statesman website.

Welfare debate… what next for disability?

As Labour and Conservative welfare leads spell out a vision for the benefits system, Richard Hawkes asks, what’s happened to the debate on disability?

It’s a big week for welfare.

Labour and Conservative leads are spelling out their visions for the welfare state, vying to be seen as ‘tough but fair’.

On Monday Shadow Work and Pensions Secretary Rachel Reeves told the Institute for Public Policy Research they would force jobseeker’s allowance claimants with inadequate maths or English to go on basic skills courses as a condition of receiving their benefit. Labour estimates this will affect about 300,000 people.

Iain Duncan Smith is making a key-note speech on Thursday. We don’t know the detail yet. But on Monday he and Theresa May placed a joint article in the Mail promising a “Housing benefit ban on jobless migrants”.

But as the Telegraph’s Benedict Brogan says, “The changes each side is proposing amount to fiddling at the margins.”

Meanwhile there is a big, unavoidable question about disabled people’s living standards that politicians have to answer over the next 18 months.

How do we make sure that as the economy picks up we don’t leave disabled people behind?

With disabled people struggling to make ends meet and getting in debt, struggling to live independently and struggling to find and keep work it’s an urgent issue.

We know politicians are working behind the scenes on this.

Unfortunately the current political debate makes it almost impossible to focus on the real issues.

The disability debate is stuck in stereotypes: ‘hopeless disabled person in need of hand-outs’ or ‘skiving scrounger fiddling the system’.

So here are three ways we can re-start the disability welfare debate:

  1. Let’s start by seeing disabled people as individuals – not a big group of people all with identical barriers and in need of the same support. Then let’s get over the fact that some disabled people need benefits, and instead take a look at why disabled people need support. Most disabled people are facing a living standards crisis – but sitting behind this are a range of concerns – from public attitudes, to local support to live independently and simply making ends meet.
  2. How we can drive down the costs of living with a disability? The issue of extra costs has been totally ignored so far. Disabled people aspire to live an ordinary life – no more, no less. Being disabled brings with it huge extra costs, research shows it can average between £800 – £1,550 per month. This includes things like specialist food, specialist equipment, specialist clothing, accessible travel costs.   While these costs exist Disability Living Allowance – introduced by the Conservatives in 1992 –  is vital and must be protected. It creates a level playing field and enables people to live and work. Before we get stuck in discussions about eligibility and assessments, let’s remember why this support exists in the first place.
  3. How can we change employers’ attitudes? There is rightly a lot of discussion about Employment Support Allowance and the Work Capability Assessment. But the focus should be on getting people back to work. Disabled people are pushing hard to get jobs and get on in the workplace. Nine in ten disabled people work or have worked. Yet only about 50% of disabled people have a job right now. A million more disabled people could be in work. How can we make sure disabled people get the tailored, specialist support they need and how improve the work place to so that disabled people thrive?

We know all parties want to engage positively with the 10 million disabled people in the UK. We know there’s a lot of positive discussion going on. But, when it comes to welfare, now’s the time to start to address the big issues.

To volunteer or not to volunteer – that is the question

A guest blog from a volunteer at Scope’s Our Generation project.

I became a volunteer Mentor over 4 years ago after being made redundant from my job as a sales manager for a construction company. I had been doing this for over 23 years and loved it, so being made redundant was tough.

I have always felt I should try to embrace change as I have found good things can often come out of bad. I felt I needed to do something to keep my mind active so I decided to give volunteering a try.

Even though I have spent most of my adult working life being in front of people, I was quite daunted at the prospect of going to meet total strangers.

As it turned out I really enjoyed the training and met some really lovely people. My Mentees have been so varied, people from all walks of life, facing a diversity of challenges many of which I had never considered.

I do believe that the people I have encountered have made as much of a difference to me as I hope I have made to them.

I still keep in touch with several of them and meet up with them as time permits as for some strange reason they want to keep in touch with me!

So if you are in any sort of doubt, give it a try. Realise what you can give with your time and see how much you get out of volunteering!

What do people want from an online community?

Back in October we announced that Netbuddy was joining Scope. We’ve spent the last few months talking to members of the Netbuddy and Scope communities about what they’d like to see on the new joint community. We’ve done this through an online survey, emails, phone calls, Skype and face to face interviews.

Here are the common things people told us they wanted from the online community:

Shared experiences

Two women talking over coffeePeople spoke about the desire to connect with people in a similar situation, in a variety of different and changing ways. Some people came to the sites looking for emotional support, for others it was about getting practical advice – but the common need was to find people “like them”. We want the new community to help people make these connections.

The ability to help others

It’s not all about receiving support – people also had a strong and genuine desire to help others through their contributions online. We want to make it easy for people to ask for and give help by letting people discover areas of expertise, find people who need support and enable people to acknowledge when content has been useful.

Immediacy and timeliness

Neon sign which says - open 24 hours
(photo by Leo Reynolds)

With sites like Twitter and Facebook, immediacy has become the norm.

The people we spoke to expected immediate responses when they posted online so an online community can’t just run 9am – 5pm, only on weekdays! People expect their posts to be sent out immediately and be notified if anyone responds straight away. We will need to make sure people can access advice from the community whatever the time or the day.

Ownership

People felt strongly about the need to belong to the community. This might mean that staff will occasionally need to take a step back, and give people in the community more control over how it’s run and how it develops. Doing this research and involving people from the community in the process is the first way we’re doing this, and we will involve the community in anyway we can as we progress.

Users of the Netbuddy site told us how much they valued the site champions and experts, so we hope to continue these roles and grow the number of champions supporting people to use the community.

A safe and trusted space

(photo by rightee)
(photo by rightee)

Whilst people wanted ownership and immediacy, they also wanted to be able to use the community to suit their personal situation. This might mean discussing sensitive personal issues, not suitable for sites like Facebook, without fear of abuse or prejudice.

We’ll work closely with the community, champions, experts, and staff to make the community as safe, welcoming and friendly as possible.

Thank you

Thank you to everyone who has taken part in the research so far. We’ve learnt so much over the last few months and we will continue going through all the feedback as we build the new community.

We’ll be posting more updates here on the blog and we’ll share any opportunities to get involved. Our focus for the coming months will be on building and moving across the forums from Scope and Netbuddy onto the new Scope community. If you are part of the community – we will be in touch. Later in the year we plan to start moving the tips and events content into the new community.

Thanks also to Sam Menter and Ant Mace for conducting the research with us and providing their fantastic insight and expertise.

If you have any questions, please comment below or you can contact me by emailing community@scope.org.uk.

Your reactions to the suicide storyline in Coronation Street

Coronation Street sign
(photo by Andrea_44)

Tonight the ITV Soap Coronation Street will see Hayley Cropper, a character who has pancreatic cancer, end her life.

As the Metro says “stand by your tissues”. If the build-up is anything to go by there is sure to be a strong reaction. Here is a bit of a spoiler on Digital Spy.

Over the weekend the debate continued.

Former Paralympian Baroness Grey-Thompson says this storyline may encourage disabled or ill people to take their own lives. While Daily Mail commentator Peter Hitchens’ take on the Corrie’s storyline and the ensuing debate is “the worst thing is that this sort of propaganda by melodrama bypasses wisdom and reason”.

We asked people on Facebook and Twitter what they thought

Kevin said:

“The storyline is about suicide, not assisted suicide. Everyone already has the ‘right’ to kill themselves like Hayley. I agree with Ian Penfold – let’s help the living to live, not the dying to die. 2. It is at least a strange coincidence that the story appears just as Lord Falconer’s Assisted Dying Bill is being launched. 3. Telling some people that suicide is fine as their lives are valueless because they fulfill certain physical criteria WILL impact upon disabled people….”

But those views aren’t shared by Donna who said:

“As a severely disabled person, since birth I think it should be an individual’s choice whether to end their life with dignity. As long as that person is of sound mind. I live with constant pain as my body won’t tolerate painkillers. It is hard to explain to someone how bad the pain is. Most people think they understand pain, but take my word for it, there are many different types of severe pain, and unless you have experienced bone pain for example you can’t possibly know how demoralising it is to live with day in and day out.”

Alison’s post was particularly poignant:

“I am in the last few weeks/months of my life according to the consultants, I am only 47, I will not allow myself to become a shell of the person I am, I will not and do not want to let my children watch me struggle much more with the pain I am living with. I want the right to a dignified end, an end where my mind is sound and I have been able to have conversations with the people I love.”

Christine thinks the storyline has been “very well done” and:

“This is a case of a women who is aware of her choices and made them after careful thought. She knows why she wants to do it. It’s not like she had a bad day and then decided to end it on a 5 minute decision. This argument has been around far longer than the coronation street storyline and soaps tend to mirror real life issues. The fact is the character is going to die at some point. People with disabilities may live a long life, but with excruciating pain and loss of quality of life.”

Susan added:

“Assisted suicide was covered in Emmerdale, in a tragic storyline and the legal ramifications that followed. I can’t recollect any call for a change in the law with that storyline.

Corrie’s storyline is the suicide of a person with terminal cancer. I don’t see how the leap can be made. I’m very unsure about assisted suicide. I understand the point of view of helping somebody who wants to die but can’t do it for themselves but I can also see how it can be abused not just by relatives but by officials etc. And the way this country is at the moment I can see such a law I can see disabled people being persuaded to die when they don’t want to.”

Michelle said on the Scope blog:

“As the mother of three disabled children, two of whom are severe learning disabled this frightens me! I can see some state doctor making the decision to euthanize my children when they are adults as the most economical option, rather than pay the high expense to care for them properly. It’ll be a sad day for society when that happens!”

Tonight, the proof of the pudding will be in the watching. We have to wait and see what happens, but the debate will continue, and as this headline in the Western Daily Press says: “From Tony Nicklinson to Hayley Cropper, the right to die debate is not going away”.

Corrie suicide doesn’t tell us anything about the law and guidance on assisted suicide

Post from Alice Maynard, Chair of Scope

Alice MaynardWhy is it when someone who is not disabled wants to commit suicide we try to talk them out of it and offer them support, but when a disabled person wants to commit suicide we focus on how we can make that possible? That’s the question that’s been on my mind the last few days.

This week news broke of the story-line in Coronation Street about Hayley Cropper – a long standing character who has pancreatic cancer and is terminally ill. It’s compelling and heart-breaking. It’s sparked much discussion about dying. Something we don’t do enough. Unfortunately that debate has been seized on by campaigners – led by Lord Falconer – who want to legalise assisted suicide. First, let’s be clear: the issues raised in the soap – the character is taking her own life without the help of her husband – don’t tell us anything about the law and guidance on assisted suicide.

What the storyline should remind us is that death is very much final; death is terminal.  And this is why I am completely against any change in the law on assisted suicide. The campaign to legalise assisted suicide completely turns on its head the accepted approach of supporting someone if they feel suicidal. It ignores the fact that circumstances can change, pain can be managed, limited life can be discovered to be worth living.

The campaign instead feeds on the view that some lives just aren’t worth living. It plays into negative attitudes about disability that stubbornly refuse to be consigned to history. You don’t need to look very far for attitudes such as this. A Cornwall councillor last year said disabled children should be put down. Even some medical and social care professionals make negative assumptions about disabled people’s quality of life.

For disabled people the current law on assisted suicide sends a really powerful message that these kind of negative attitudes are not acceptable. But more than that they are a safeguard from anyone acting on those attitudes and turning them into something much worse

Legalising assisted suicide would mean the most fundamental of human right of disabled people like myself – the right to life – being violated. The campaigners argue that safeguards can be put in place. But these are completely inadequate.

In May politicians will again debate changing the law. Previous bills have been rightly rejected. I hope they will reject this one too. And I hope the public will similarly reject the bid by campaigners to hi-jack an insightful and valuable soap story-line.

Coronation Street’s controversial suicide storyline

(photo by Paul Walker)
(photo by Paul Walker)

Everyone is talking about Corrie.

Next week Hayley Cropper – a long standing character in the soap who has pancreatic cancer and is terminally ill – will take her own life. 

Every family experiences death, and nobody wants to see or think about their loved ones in pain.

It’s no surprise a touch paper has been lit.  The issue of how Hayley dies has become a major talking point – from the Sun to the Today Programme.

There have been strong reactions. Warnings have been sounded about copycat suicides.

Hayley’s husband is against the suicide. We wait to see what he will do.

The storyline has restarted the national debate on assisted suicide

The Sun backs a change in the law. It’s resident GP gives a heartfelt account of what it’s like to have a relative experience decline and increasing pain…and her wish to be able to end her mother’s suffering.

Meanwhile in the courts the family of Tony Nicklinson – who had locked-in syndrome – and Paul Lamb who was paralysed after a road accident are campaigning to have the right to ask a doctor to help Paul die.

The other side of the debate

However, disabled campaigners and charities, such as Care Not Killing and Not Dead Yet  oppose any weakening of the law. They are worried that it will ferment negative attitudes to disability and lead to disabled people being put under pressure to kill themselves.

As Dr Peter Saunders from Care Not Killing said on the Today Programme “The most concerning thing of all about this is the myth that suicidal thoughts in people who are disabled or sick should be managed differently from similar thoughts in those who are not sick or disabled… It panders to public prejudice in a way that is very, very dangerous.”

Scope’s chief executive Richard, explained the concerns in a blog.

This all comes ahead of an Assisted Dying Bill which could be heard in the Lords as early as May.

Scope has long argued that this is a really important debate, and even more important is that the views of disabled people are heard.

Let us know what you think about this storyline and the ‘right-to-die’ debate that it has sparked.