Tag Archives: Campaigns

If I was Prime Minister – #100days100stories

Every day for the 100 days leading up to tomorrow’s election, we’ve published the story of a disabled person or parent of a disabled child. On the final day of our campaign, we asked Charlie Willis, a young disabled campaigner with the organisation Independent Lives, what he would do if he was Prime Minister.

There are more than 11 million disabled people in the UK. As the 2015 General Election dawns, disabled and non-disabled people alike will be voting tomorrow for those candidates that they feel will best represent them in the Houses of Parliament.

If I were Prime Minister, I would hope to be able to use the position to improve the lives of disabled people. With this in mind, there are four changes I would immediately propose, broad ideas with one common theme: empowerment.

No. 1: A diverse governmentCharlie at a computer

Firstly, open up positions of power to different identity groups. A government should be representative of the people it supports, including identities formed around race, gender, sexuality, class and disability.

The present situation is far from this ideal: the diversity in our country is not fully reflected in the diversity of the Government.

By improving this, the country can start to champion the needs of the many, rather than the needs of the elite few, by fair and equal empowerment in terms of rights, visibility, opportunities and respect.

No. 2: An accessible country

Secondly, make spaces accessible for all. Accessibility is not just about ramps into buildings, but about all spaces being adapted to public need. Many disabled people still experience significant barriers to transport, buildings and the countryside.

Disabled people with varying impairments should always be included in the design process of new transport and the building of accessible lifetime homes.

This would work towards a Standard of Accessibility, by reviewing the accessible standards of building regulations to include hearing loops, quiet rooms or Changing Places toilets. By making everywhere accessible, people are empowered to get involved and have a voice.

No. 3: Empower peopleCharlie standing with a stick next to a poster

Thirdly, protect independence through welfare. Some disabled people are feeling the effects of changes to welfare, personal budgets and constant reassessments of need.

For those who rely on support to live their lives, the consequences of further cuts could be severe.

A tax on the richest people in the UK, and higher corporation tax, would ensure a future for the welfare state with adequate benefits for all that required it. Local authorities, the NHS and schools would have more money.

This would protect those with the most substantial need, empowering others to live more independently, being able to afford true choice and control.

No. 4: A change in attitudes

Lastly, reform attitudes within, and outside, government. In recent years disabled people have been repeatedly scapegoated and victimised in all areas of society. Representations of identity groups are linked to the behaviour towards them.

Images in the media that show disability are often manipulated and disabled people are represented as “weak”, “faking it”, or “scroungers”. Perhaps as a result, disability hate crime is on the rise.

Therefore, education needs to be inclusive of difference. The world of disability is a reality that everyone, at some point, will come into contact with, but is seldom taught about.

Representing disabled people in a more positive and radical light will end this manipulation and allow the creation of individual, empowered, identities for all disabled people.

Final thoughts…Charlie talking to a woman

Ultimately, disabled people and the organisations that empower them need to focus on the fight for independent living, and move the discussions in government towards preserving our civil rights.

Disability is a political issue. As Prime Minister, discussing issues around power, accessibility, protecting independence and our attitudes towards disability would help all people, not just those with impairments.

Independent Lives is a user-led charity supporting disabled people in West Sussex and Hampshire.   

Find out more about our 100 days, 100 stories campaign and read the rest of our stories so far

Campaigning for change is very important to me – #100days100stories

Nathan, 19, is a wheelchair user and has been a campaigner on disability issues for the last 10 years. On 7 May he’ll be casting his vote for the first time. Here, as part of Scope’s 100 days, 100 stories campaign, Nathan reflects on campaigning and politics. 

I am a young leader of the Birmingham Ambassador Club for the charity Whizz-Kidz. One of my responsibilities under this role is to lead on the Space Invaders Campaign.

This is a campaign to raise awareness of the misuse of disabled car parking spaces. I quickly realised we couldn’t simply fight the campaign on the principle that you are not disabled so you shouldn’t park here!

Instead I fought the campaign on the issue of an improved economy. If disabled people are allowed to get a parking space, they can get out to work more easily, and shop in a store freely, which contributes to the local economy. It makes sense!

Voting for the first time

Campaigning for change is very important to me and I am really looking forward to casting my vote on 7 May in the General Election. I believe it is vital that disabled people engage with politics, as too often our issues are not discussed.

I am really excited and it got me thinking about how 10 years ago I started my very first campaign; it has been many years of hard graft, with sometimes sleepless nights, but it has been worth it.

The start of it all

Group of people in a political setting, three standing and two in wheelchairs,Back then I remember my mother telling me that a disabled person had to be carried into 10 Downing Street.

I knew that they had just passed a law that meant all public buildings should be fully accessible and so it seemed a bit strange that the official home of the Prime Minister wasn’t also classed as a public building.

I was so angered that I wrote a letter to the then Prime Minister, Tony Blair, and other ministers. I was contacted by the Parliamentary Officer at Scope, who invited me to visit Downing Street with them.

We went down to London and arrived at the famous black iron gates where I faced my first public relations (PR) task by being interviewed for Central Tonight, my local news programme.

They asked, “What’s next for you?” I couldn’t reply with the truthful answer “I don’t know!” I decided to go instead with the stock response, “I will hopefully do some more campaigning and become an MP one day”.

It’s hard work

From this first foray into campaigning I have had to work hard to ensure that I remain at the top of my game.

It is a common misconception that the only thing campaigners have to do is stand and talk about their issue, but there is a lot more to successful campaigning.

Many campaigning skills are the same skills we all need in any work situation, including critical thinking, presentation skills and understanding of financial and social trends.

Raising awareness

I do not accept the argument that the only way to gain greater public awareness for disabled people and the charities that support us is to make everybody you are appealing to sad all the time.

Whilst I appreciate that it can sometimes be very difficult for disabled people, I believe it is better to highlight the positives than the negatives and show what it could be like rather than play to people’s perceptions.

If like Nathan you are a campaigner between the ages of 18 and 25 and would like to develop your campaigns skills further email: campaigns@scope.org.uk for more details.

You can find out more about the lives of people like Nathan and others in our 100 days, 100 stories campaign.

 “No amount of safeguarding will ever be enough”

JulietIn this guest blog post, Juliet Marlow, a disability rights campaigner and member of Not Dead Yet UK, explains why she is against legalising assisted suicide. Not Dead Yet UK is today protesting against the Assisted Dying Bill outside the House of Parliament.

Lord Falconer’s Private Member’s Bill proposing the legalisation of doctor-assisted suicide (AS) for those with six months or less to live will receive its third reading in the House of Lords today, Friday 16 January.

This isn’t the first time the matter has been debated. Every few years somebody will make the proposal only for it to be nervously put aside. But this time feels different. Despite its controversial nature it seems the idea has somehow caught public imagination and there is a very real chance that this time it could become law.

My name is Juliet. I’m 44, married, a PhD student and freelance writer. I sing in a rock/pop band and mostly love my life. I have been disabled since I was four; I use a wheelchair and rely on PAs to assist me with pretty much everything. I am also passionately opposed to the legalisation of AS.

On the surface, AS doesn’t look that unreasonable. People know that sick and disabled people have had to fight hard for control of our own lives so naturally they assume we want to control our deaths too.

Not Dead Yet

I am proud to belong to the anti-AS campaign group Not Dead Yet UK. Most of us have personal experience of disability and our reasons for opposing the Bill will vary. But our core arguments are that it is unnecessary and unsafe. No amount of safeguarding will ever be enough to protect all vulnerable people, all the time. And that is a terrifying thought for those of us who face illness and death every day.

Sympathy and fear are the pro-AS lobby’s weapons of choice. Sympathy is hard to fight because some of their campaigners genuinely want to try and prevent future suffering.  Nevertheless, I respectfully suggest they have missed the point – it is society that robs people of a ‘good death’, not illness. With proper pain medication and decent patient-centred palliative care, a ‘good death’ can be had. It’s never easy but it can be effectively managed to prevent unnecessary suffering.

Fear is much harder to counteract. People will die in pain and distress unless the authorities ensure all terminally ill people get the palliative support they need.  It is no coincidence that at a time of savage public funding cuts, the AS question has raised its ugly head again. It is because the misguided belief that society will always take care of its most vulnerable citizens has been tarnished, exposed as a lie.

Life not death

Our solution is not to control when and how we die, but to focus on life rather than death. We choose to campaign, protest and fight until the authorities introduce a cast-iron, needs-led end-of-life service that allows each of us to live to our natural end without pain and imagined ‘loss of dignity’.

The suggestion that dignity is lost through illness and can only be reclaimed by controlling the manner of your death is not only ignorant, but insulting to disabled people who have fought to build a meaningful life. If there is any loss of dignity then it is inflicted; it is not a natural state that can be avoided by dying early. I want support to live, not to die!

The pro-AS campaign claims that the Bill has nothing to do with disability. They are at best being naïve, at worst underhand. It has everything to do with disability. After all, it is only when terminal illness threatens to become disabling that AS is even considered. The high profile cases of the late Debbie Purdy and Tony Nicklinson demonstrate how much disability informs the whole issue. Ironically neither of those people would have qualified for AS under the current wording of the Bill, which gives credibility to our belief that once in place the legislation will be modified to include more people – what we call the ‘slippery slope’ effect. Once a line has been crossed any incremental changes to the qualifying criteria can and will be passed with little resistance.

Becoming a burden

Another concern is that coercion is not always obvious. It is subtle, creeping and sometimes even unintentional. The fear of becoming a burden to our loved ones is real, especially now as an almost imperceptible but tangible shift in attitudes towards disabled people has emerged. This is fuelled by the ‘shirker vs. striver’ rhetoric favoured by all mainstream political parties.  I have witnessed genuine cases where people are made to feel unloved and unwanted by those around them; they are made acutely aware of being a so-called burden on their loved ones. Once AS becomes acceptable it will then become expected, the ‘decent thing to do’ to alleviate stress to others.

Ultimately everyone must make up their own mind whether they can support AS. But for me, if even one  person loses their life through error or coercion then that’s too high a price to pay to allow a handful of people to end it all if and when society lets them down. Dignity in dying, surely dignity in living is more important? After all, if ill and disabled people have the latter, few will ever need the former.

You can also read Scope’s view on the Assisted Dying Bill, and we would welcome your thoughts too. 

Who opposes the Assisted Dying Bill?

Scope is against legalising assisted suicide – read three reasons why.

Along with the Prime Minister, disabled activists, doctors, lawyers, older people’s charities and national newspapers, we are opposed to what would be a major change in the law.

Here are some of the reasons why they are opposed to the Assisted Dying Bill: 

Action on Elder Abuse, Mencap, Scope and Veterans Association (Joint Letter to Peers, July 2014)

“An assisted suicide law would for the first time in this country introduce the idea that there are some people whose deaths can actively be brought about; whose suicide, unlike other people’s, society would make no significant effort to prevent and indeed would actually assist.”

Baroness Campbell of Surbiton

“The existing law on assisted suicide rests on a natural frontier. It rests on the principle that we do not involve ourselves in deliberately bringing about the deaths of other people. What the proponents of “assisted dying” want is to replace that clear and bright line with an arbitrary and permeable one. At the moment they say they want assisted suicide for people who are terminally ill, but for how long will that last, and who decides what is terminal? If terminal illness, why not chronic and progressive conditions?

“And, if chronic and progressive conditions, why not seriously disabled people? I am already on the list. Lord Falconer himself conceded three years ago that assisted suicide should not be offered to disabled people “at this point in time”. This sent a shiver down my spine: it is reminiscent of Belgium’s slippery slope.”

Baroness Grey – Thompson

“Why are people worried? It is because many disabled people are not terminally ill. However, many terminally ill people experience some sort of impairment and there is a great deal of confusion around that. There is a myth that our lives are so tragic or painful that we must want to end them. Just this week I was told, “You must have wanted to kill yourself many times in your life”. No, I have not. I have experienced excruciating pain. When I was 19, I snapped a metal rod off my spine that came out through my skin, but I have never considered killing myself. The fact is, however, that many people expected that I would ask for that. What if those people were related to me?”

David Cameron, Prime Minister

“For myself I am not convinced that further steps need to be taken, I worry about legalising euthanasia and people might be being pushed into things that they don’t actually want for themselves…”

The Church of England

“The Church of England cannot support Lord Falconer’s Assisted Dying Bill…. Patient safety, protection of the vulnerable and respect for the integrity of the doctor-patient relationship are central to the Church of England’s concerns about any proposal to change the law.”

A Joint Letter from 23 British faith leaders (July 2014)

“The Assisted Dying Bill would allow individuals to participate actively in ending others’ lives, in effect colluding in the judgment that they are of no further value. This is not the way forward for a compassionate and caring society.”

British Medical Association

“Current BMA policy firmly opposes assisted dying for the following key reasons; Permitting assisted dying for some could put vulnerable people at risk of harm; such a change would be contrary to the ethics of clinical practice, as the principal purpose of medicine is to improve patients’ quality of life, not to foreshorten it; legalising assisted dying could weaken society’s prohibition on killing and undermine the safeguards against non-voluntary euthanasia.

“For most patients, effective and high quality palliative care can effectively alleviate distressing symptoms associated with the dying process and allay patients’ fears. Only a minority of people want to end their lives. The rules for the majority should not be changed to accommodate a small group.”

Royal College of General Practitioners

“The Royal College of General Practitioners (RCGP) is to remain opposed to any change in the law on assisted dying.

“[GPs] were against a change in the law for a range of reasons, including that a change in the legislation would… put the most vulnerable in society at risk; would be impossible to implement without the possibility that patients may be in some way coerced into the decision to die; shift the focus away from investing in palliative care and treatments for terminal illness; instigate a ‘slippery slope’ whereby it would only be a matter of time before assisted dying was extended to those who could not consent due to reasons of incapacity and the severely disabled.”

Royal College of Surgeons

“The law as it currently stands should not be changed and no system should be introduced to allow people to be assisted to die.  The College does not recognise any circumstances under which it should be possible for people to be assisted to die.”

As always, we welcome your thoughts on the issue. 

“My boyfriend googled ‘how to kiss a wheelchair user’!” #EndTheAwkward #ThrowbackThursday

Guest post from Emily Yates, a 23-year-old travel writer and accessibility consultant. We first published Emily’s blog in May 2014 when we first launched our End the Awkward campaign.

As we’ve been celebrating kissing this week, we thought it was a good opportunity to #ThrowbackThursday to Emily’s awkward story.

As an accessibility consultant and travel writer currently based in Rio de Janeiro, most of my awkward stories revolve around travel – especially the joys of flying. I’ve been fortunate enough to always get off the plane and see my wheelchair waiting for me, but there is one particularly poignant trip to Dubai with my twin sister that I will always remember.

We got on the plane, settled down armed with booze, chocolate and films. I was so proud of myself for going a whole seven hours without needing to go to the bathroom. Then, with a glass of wine too many, I had to concede. After calling the attendant for the in-flight wheelchair, I was told there was no such equipment onboard. I was shocked, and was offered no extra help to get to the bathroom.

So, I defiantly crawled down the length of the aisle until I got there, with an audience both smiling in pity and gawping in disgust. After emptying my bladder, getting over my wounded pride and dehydrating myself for the rest of the journey, the real smack in the face came when the plane landed and the in-flight wheelchair was brought right to my seat… Oh, and then when we arrived at Dubai airport for our return flight to the UK with a good three hours to kill, we were ushered right past all those amazing designer shops and straight to a ‘special assistance’ bay, where we had to sit and wait until our gate opened. Pretty sure my very gorgeous and fashionable sister was put off flying with me for life after that episode!

But my ‘awkward’ experiences don’t end with travel. My boyfriend and I, who have been friends since we were 16, still giggle about his confession to googling ‘how to kiss a wheelchair user’ before we got together… I have just googled it now and, not surprisingly, got results such as ‘bend down’ or ‘lean in’. My personal favourite has to be ‘say you want to tell her a secret, then go for it’ with a winky face for added bonus points. Luckily, he didn’t follow that advice…

This leads to my next point. My boyfriend probably did that research to try and prevent any awkwardness between us, and who can really blame something like that, if it’s not been experienced before? We disabled people, with the help of great campaigns such as Scope’s End the Awkward have a little duty of our own.

And that’s to speak out if we find a situation awkward, dissatisfying or downright offensive. Of course in a perfect world, there would always be a chair nearby for a tall guy to sit on when talking to someone of a shorter stature or a wheelchair user, and everyone would instinctively know how to support somebody with a visual impairment who needed extra guidance. We do not live in that perfect world.

But we do have the ability to make improvements on these things through spreading awareness. Most of all, the ability to ‘end the awkward’ by treating people with certain conditions in a way that makes them comfortable can be taught, and we all can be a part of that teaching. It is teaching like this that can ensure another wheelchair user doesn’t have to dehydrate themselves on the way to Dubai!

Read more awkward stories. If you’ve had a similar experience we would love to know about it! Submit your awkward stories, and we’ll publish our favourites on our blog and social media. 

Better living, higher standards: improving the lives of disabled people by 2020

2014 is a big year for Scope. Our new strategy is all about changing society and we have ambitious plans to make society a better place for disabled people. 20 years ago, we changed our name in a bid to take a stand against bad attitudes to disability. By ditching the name Spastics Society, we helped knock that insult out of circulation and got people questioning attitudes to disability.

But 20 years on, life is still tougher than it needs to be for disabled people who want the same things as everyone else. We’ve come a long way since our name change but there is still further to go.  There are still major issues when it comes to attitudes and these go hand in hand with policies and practises that undermine living standards.

Which is why our new report published today, Better living, higher standards: improving the lives of disabled people by 2020 (PDF), focuses on disabled people’s living standards and sets out clear recommendations for change.

Living standards are about a whole range of things that matter to people. It’s about opportunities to work, get out and about, and see friends and family.Alongside financial assets, income and jobs, we all depend on having skills we can use to learn or work. We rely on public services and on positive attitudes from family, friends and the wider community in which we live. All of these and more make up living standards for all of us.

Our report reveals that:

  • 42% of disabled people told us that they had lost out on a job because of the way employers perceived their impairment “every time” or “a lot of the time”.
  • Half of disabled people say that services they receive do not enable them to take part in community life.
  • Disabled people are twice as likely to live in poverty as non-disabled people, and half (49%) of disabled people use credit cards or loans to pay for everyday items including clothing and food. Disabled people are three times more likely to draw on doorstep loans.
  • Disabled  adults spend an average of £550 per month on costs related to their disability.

The recent recession has had an impact on living standards for many people. But for disabled people, the struggle to make ends meet has always been a fact of life. As the economy recovers we are calling for all political parties to use this opportunity to make sure once and for all that disabled people can contribute to economic growth and have the same chances as everyone else.

If we want to improve disabled people’s living standards we need to fix the problem of extra costs, poor employment opportunities and poor social care. We also need to shift the attitudes that create many of these problems.We have to see these areas as linked – we can’t fix one without the other; and we need government action that ultimately improves disabled people’s living standards.

Life can cost more if you are disabled – let’s end the financial penalty by 2020

Let’s create a society in which the extra costs some disabled people face – such as paying for specialist equipment or for taxis due to inaccessible transport systems, are no longer a barrier to making an economic contribution or to social participation.

We are calling for the value of extra costs payments such as Disability Living Allowance or Personal Independence Payments to be protected. And in June 2014, Scope will be launching a Commission investigating the drivers of disability related costs and making recommendations on how to tackle them.

Let’s get a million more disabled people in work by 2020

Let’s create a society in which all types of work are available to everyone; a society in which disabled people have opportunities to be drivers of, and benefit from, new employment opportunities arising from economic growth.

We are calling for increased options to prevent people slipping out of the labour force unnecessarily and for new opportunities created through strategies for economic growth, such as City Deals, to work with, and include disabled people.

Let’s make sure all disabled people get the support they need to live as independently as possible

Let’s create a society in which more disabled people have the opportunity to live independently in the communities they choose and in which more working age disabled people can afford the care and support they need to live an independent life.

We are calling for a new financial settlement in the next Comprehensive Spending Review that ensures that everyone who is eligible for social care will get the support they need to live independently in the community. We also want to see greater focus on improving quality of care and support mechanisms, including through the integration of strategies on employment, health and social care to keep people in work, living in their own homes and preventing crisis.

The recovery gives us an opportunity to think differently: employers, public services, government, all of us. It’s an opportunity to make society work better for disabled people.

Let’s make sure disabled people aren’t left behind as the economy recovers.

We’ve got to act on the Children and Families Act

“I cry every day because there is no hope and no one cares. If I had just a little help we could live a more normal and fulfilling life.”

Mum and disabled son playing in the part

This is just one of the heart-wrenching stories we’ve heard from parents of disabled children around the country during the past 18 months of our Keep Us Close campaign, fighting for better local support for them and their families.

It’s an important day for a new set of changes that many parents around the country have been waiting for. Today the Children and Families Bill will be passed in Parliament, becoming an Act (that means it’s now decided – well, almost all of it – see below).

The Government promised this would be a once-in-a-generation change to how support is provided to children and their families “stopping the ‘agonising’ battle many parents fight to get the support for their families, as they are forced to go from ‘pillar to post’ between different authorities and agencies.”

The Bill hasn’t gone as far as Scope and many parents, groups and other organisations would like, but there are some important changes that are good. And now the focus is on what needs to happen next.

What is not so good?

There is uncertainty about how much of a difference the reforms will make.

The original intentions behind these changes were definitely aspirational and felt like families’ experiences had been listened to. The Children and Families Bill hasn’t lived up to all the promises set out by Government, leading to some parents and experts asking what will actually be different?

Scope’s Keep Us Close campaign asked the Government to to ensure that local authorities promoted inclusive and accessible universal services that all families can use. This was an ideal opportunity to bring in transformational change that would mean that more families with disabled children would have access to the support and advice that they need in their local community. This hasn’t happened and feels like a missed opportunity.

What’s good?

Families should know what local support is available – and have a say in it. 

One of the big changes the Children and Families Bill will bring in is a new “Local Offer”. Your local council will have to publish details of all the relevant services that are available if you have a disabled child or young person, or if they have a special educational need. This is meant to help end the struggles parents face to know what support they can even access.

But just providing a fairly empty “yellow pages” won’t help. Parents know what support they and their children need. One of the good changes the Government has promised is that families will have more of a say in what services are provided. This is meant to address an issue many parents complain of – not being listened to – and it’s one of the biggest issues Scope has been campaigning for.

All disabled children should be included when councils plan services. 

When councils consider what support to provide in their local area as their Local Offer, they should also plan for disabled children as well. At one stage it was only children with Special Educational Needs – if your child was fine at school but had other needs, they were effectively left out of the new system.

Disabled children from birth should benefit from more joined up support.

Early years settings, such as children’s centres, and professionals like health visitors will now need to be better at identifying disabled children who need additional help right from birth and put in place the support they and their families need. And young people, right up until they are 25 could benefit from a more joined up approach to their learning and preparing for adulthood, removing the cliff edge where support falls away at age 16 to 18 at present.

What’s next?

The Bill is being passed today, but it’s just one step along the journey to change support to meet children’s and families’ needs.

The Government

Right now the Government is making the final changes to the ‘Code of Practice’ – the important practical details about exactly what will happen and when. This will be the guidance that local councils, early years settings, schools, colleges and health agencies will use to understand what they need to do next so that the reforms make a difference for disabled children, young people and their families.

How will families have a say in improving local services? How will local services work together better in practice as promised? How quickly will the changes happen? It’s vital to get the answers right to these and more issues.

Local councils 

Local authorities will play a massively important role in putting the Bill into practice. How will they make the new ‘Local Offer’ work in practice? How can they change the culture that’s leading to lots of disabled children being excluded because of negative attitudes? How else can they make sure local services are inclusive? The commitment to include families in planning and evaluating local provision is absolutely crucial to the success of the Local Offer and local authorities must really get this right.

Charities like Scope

We all need to play a part in getting support right for disabled children and their families. So much needs to improve and we’ll do all we can to help by continuing to work closely with local councils and the Government. Please check back on our blog in the coming weeks – when we know the important details of what happens next we’ll be talking about what the changes mean for parents. And if you want to at any time, please get in touch for support to families with disabled children.