Scope for Change – get involved and change the country

Today we are opening applications for Scope’s new campaign training programme ‘Scope for Change’.

Between the ages of 18 and 25 and want to learn campaigning skills? Then find out more and apply for the new programme.

Young disabled people who we speak to say there are still too many barriers in society that prevent them from doing the day-to-day things that many people take for granted.

Much of this is down to the physical and attitudinal barriers people face along with the negative attitudes towards disability.

Thankfully we know that young disabled people from across the country are passionate about making a Britain a better place. We want to hear from these people who want to campaign for change, meet new friends and learn new skills.

Rebecca’s campaigning

Rebecca Bunce is a campaigner who’s learnt valuable campaigning skills with Scope and Campaign Bootcamp.

“Scope kindly gave me the opportunity to learn exciting and valuable campaigning skills – and now I’m campaigning with IC Change on the important of issue of stopping domestic violence against disabled women. Disabled people must be represented across all campaigns, as disabled people are represented across all of society.”

Scope is working with Campaign Bootcamp to provide this training opportunity of a 10 month course which includes on and offline training modules, including a four-day residential weekend where you’ll meet other campaigners and learn new skills. You’ll learn how to develop a winning campaign strategy as well as the best use of tactics including digital and social media, film and story-telling.

You don’t have to have run a campaign before. You just need to be committed, willing to give up some of your free time and possess a passion to bring about change in your community. 

Sulaiman’s campaigning

Sulaiman Khan is a passionate activist who has many years of experience campaigning on a wide range of issues from improving public transport to increasing the voice of disabled in Parliament. He argues that the key tools for any campaigner is tenacity and good people skills.

Sulaiman wearing a suit and tie in his wheelchair“The most important thing for me as a campaigner is to never give up. However many times you are told no, keep going. If the issue is important enough to you then you owe to yourself to keep going. I would also say to your young campaigners they need to build relationships. It’s vital in any successful campaign.”

If you would like to improve your campaigning skills to help bring about the changes you want to see in your community then please apply today.

What will the Comprehensive Spending Review mean for disabled people?

On Wednesday, the Government announces its spending decisions for the next four years in its Comprehensive Spending Review (CSR). These decisions are likely to have a big impact on the lives of disabled people in this Parliament.

Here are three areas that Scope will be looking for the Chancellor to address.

Support so that more disabled people can find, stay and progress in work

The Government has set out an ambitious – and very welcome – aim of halving the disability employment gap. This was something that Scope had called on all Parties to do in the run up to the 2015 General Election, and both the Prime Minister and Iain Duncan Smith have said this is a priority for the Government.

Right now, the difference in the employment rate amongst disabled people and the rest of the population is 30%, and has remained static for a decade.

We know disabled people want to work, and are ready to do so. But this gap remains for a range of reasons – from a lack of suitable and available jobs, poor attitudes from potential employers and a lack of appropriate support to enter the workplace.

But if this gap is to be halved, the Government needs action which matches this ambition. For example, current back to work programmes have poor outcomes in supporting disabled people into work and these must be improved to ensure specialist, tailored support is available.

As the Chancellor is expected to give more detail about the ‘Devolution Revolution’ it is critical that this opportunity connects disabled people to local jobs and growth if he is also to ‘halve the disability employment gap’.

Tackling the extra costs of disability

Life costs more if you are disabled. Our research shows that disabled people spend an average of £550 on disability related extra costs each month.

Disability Living Allowance (DLA) and its replacement, the Personal Independence Payment (PIP), are in recognition of this. Scope very much welcomed the Chancellor’s commitment in the June 2015 Budget to protect these payments, and we will be looking for him to reaffirm this commitment.

But the Chancellor can also go further in making sure these extra costs are tackled and reduced. Last year, an independent inquiry by the Extra Costs Commission made a number of recommendations about how these extra costs can be driven down through action by Government, businesses, regulators and disabled people themselves. The Chancellor should use this opportunity to adopt some of the Commission’s recommendations to support disabled people as consumers and drive down these extra costs in areas like taxis and insurance. He could also adopt the Commission’s recommendation to get more disabled people online, supporting them to take advantage of online offers, information and advice.

Supporting disabled people to live independently

Social care is the support that disabled people need to get up, get washed, and get out of the house.

The care system is currently chronically underfunded, with £4.6 billion having been removed from the system over the last five years. According to the Local Government Association and the Association of Directors of Adult Social Services, an additional £700 million per year is needed to address the social care funding gap, plus £2 billion over the spending review term.

Recently published Scope research shows the impact of this care crisis. Over half of the disabled people we spoke to who use social care (55%) can’t get the support they need to live independently. It is essential the Chancellor addresses the care crisis in the Spending Review, providing a sustainable settlement for the social care system, so that disabled people are able to receive the support they need to live independently.

The Government has also promised to do more to integrate the health and social care systems. Any announcement the Chancellor makes on how he plans to do this must consider disabled people and how integration will support their independence.

Like much of the country, Scope will be watching the Chancellor’s announcements closely. No other set piece political event over the next four years will provide a better opportunity for the Government to give disabled people an equal stake in our country’s future.

“I get one bath a week, and I often sleep in my clothes” – Rebecca’s story

Guest post by Rebecca, who has ME and is a wheelchair user. She has lost her entitlement to social care, and now gets no support at all. Here she explains how it has affected her life.

Long hours stretch out in front of me. There’s nothing to fill my time. I cannot get out of the house. I may go many days without seeing anyone.

It’s a struggle even to have a drink; I certainly can’t get to the loo on time. I can only eat things which come straight from a packet.

If I ask for help to do something that isn’t directly about caring for my physical needs, I’m told it’s not possible. No one asks if I’m happy, or if I’d like a social life.

This is the situation I have faced ever since my care package was taken from me.

Losing my social care

I used to receive an hour of care a day where I’d get help with a hot meal, basic housework and a bath.

But when I was reassessed, this care was removed completely. One of the reasons I was given for this was that I was ‘able to use a computer’.

I was told: ‘If we gave help to everyone who just needed a bit of help with their housework, we’d have to give it to everyone.’

But it’s a lot more than just housework. Without social care, I lose the ability to do the things which make me happy, and end up spending all my energy on survival.

Rebecca outside in her wheelchair, holding her dog

How it affects me

I have volunteer carers now who come in to help me when they aren’t working. I get maybe one bath a week, and hot meals four days out of seven.

I often have to sleep in my clothes. I don’t eat properly, which means my medications are disrupted as some must be taken with food.

I was prescribed hydrotherapy about 10 years ago but I have never yet been able to attend, as I have no carer to take me, push my wheelchair, help me undress and dress again.

I’m forced to wipe myself down with baby wipes rather than have a bath, because it’s not safe to bathe myself.

I choose to be happy

I didn’t choose this life, but I still choose to be happy. My cooking and loving and care-giving (which once defined me as a proud and happy wife and mother) have had to be set aside.

But my joys are of lying in my bed looking out at the riot of summer turning to autumn in the countryside I love.

My joys are my warm dog snuggled against me under the blanket, or the total trust and love of the parrot I adopted climbing on my arm, asking for his head to be scratched.

It is not an easy life-lesson to learn that no matter what happens, I can still choose to be happy. I just need more direct care, more stability, less financial uncertainty and a lot less stress.

We’re calling on the government to provide more social care funding for people like Rebecca. Find out more, or tweet us using the hashtag #carecrisis. 

My experience as a grandparent of a disabled child

Vicky Harris is Face 2 Face Co-ordinator for our befriending service at Liverpool’s Alder Hey Children’s Hospital. She believes that grandparents of disabled children, as well as parents, need access to emotional support. Here Vicky shares a very personal experience of disability in her family.  

I have been blessed in my life to have three children and three grandchildren, but I feel there may be more grandchildren to come in time! My eldest child, who’s nearly 30 was born with a very rare physical disability which at times has been emotionally challenging. She has grown into a beautiful adult who I’m very proud of.

Nearly eight years ago my second grandchild Jack was born to my daughter Sammie who was 20 at the time. I remember being so
excited as I had a granddaughter who was two years old, and I was now lucky to have a grandson too. The first time I saw him, he looked so beautiful but I knew something was wrong. Within a wBaby Jack asleep in a blue cardigan and hateek we received the news that Jack had catastrophic brain damage. I have to say I felt devastated. Devastated for my daughter and her partner, and devastated for Jack.

I loved him so much, part of me hoped the doctors had made a mistake but I knew they were right. I was trying to find light in what was a very dark time. We spoke to the consultant and then came crashing down again when we were told he might not live beyond eight years old. He would be completely reliant on my daughter for all his needs. My daughter hurt so much, I wanted to take her pain away and make her feel better but I knew I couldn’t.

As a family, we rallied round. I remember Jack started drinking from the bottle, which the professionals had feared he may not do. This offered us hope, but sadly it didn’t last and he had to be peg fed to help him thrive. We were always looking for hope, then hopes were dashed along the way. Picking ourselves up, loving each other, caring, scared the day we were dreading would come.

As a grandparent I felt almost useless, sitting back and watching the journey unfold, knowing the outcome one day would be having to say goodbye to Jack. I know my daughter hurt, she was a wonderful mother to him. I know she loved him with all her heart, and I wondered if she’d be able to let him go when that time came.

I wanted to fix the situation, change it, make it better. Watching Jack have many fits, hospital visits, but also trying to live this normal life. Enjoying every day, loving him every day, always mindful of how precious his life was. As a family we’d already experienced disability. We knew in the grand scheme of life that disability is not the end of the world. Yes, it can seem a different world at times, but none the less a good life can be lived. With Jack it seemed so final, and we just hopeJack at three years old strapped into his pushchair, wearing a shirt and smart waistcoatd he would stay strong for as long as possible.

My granddaughter Jess loved him so much, she would pretend she was reading him a book and then poke crayons in his ears! She seemed to understand he was special, her bond with him was so beautiful to see.

Sadly, the day we had dreaded arrived all too soon. Jack had pneumonia and was on life support for 10 days when it was agreed it should be withdrawn. My heart broke watching my daughter be so brave in letting him go. When we said goodbye, Jack was only three years old.

I have such immense pride in my daughter, I wanted to spare her the pain, spare her the hurt but no one could have loved him more than she did. We were all blessed to have Jack in our lives, and we’ll never forget him.

Vicky will be starting a grandparents drop-in group in Liverpool next year. Would any of you grandparents of disabled children be interested in attending something like this, where you can meet other grandparents, talk about your experiences, and gain support? Please let us know. 

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Vicky has raised here, and answering your questions.

“I’m caring because the alternative was unthinkable”

Ann is one of an estimated 25,000 carers over the age of 65 who are bringing up grandchildren or other family members, because their own parents are unable to look after them. Here, she describes the impact this has had on her life.

My story began over 22 years ago when my eldest daughter was in her first year of Art College and had a psychotic episode. She never recovered and, after 22 years of being in hospitals and various hostels, she still suffers from mental ill health. This was a devastating experience for all the family.

17 years ago my daughter had a child – my granddaughter – and I became a double carer. My husband and I were still supporting our daughter and, as she was taken into hospital six days after the birth, we took on the responsibility of the new baby. My granddaughter was put on the ‘at risk register’ at birth as a consequence of my daughter’s mental health condition. She was assigned two social workers, one before the birth and another after the birth.

We were advised by the second social worker to take out a residence order to safeguard the welfare of our grandchild. We were not told it meant there would be no support whatsoever after this, as the child would then be our responsibility. The legal procedure cost us about a £1000 and a lot of emotional heartache, knowing we were taking on a role that should have been our daughter’s. We also felt a lot of pressure from the social worker as the alternative was to take our grandchild into care.

Meanwhile my husband and I were juggling caring for our granddaughter, working, caring for our younger daughter, visiting our eldest daughter in hospital daily and supporting her relationship with her own daughter with as many visits as we could. When my granddaughter was two, my husband of 33 years, left us. He said he wanted a new life which is hardly surprising given the life we had.

The last 22 years have had a huge impact on my life, physically, emotionally and financially. However despite the hardships my granddaughter has just finished secondary school and achieved 10 GSE’s plus a distinction in a BTEC music course. She plays football and was selected to be part of a centre of excellence. She has survived her difficult beginnings and is now thriving with an exciting future ahead of her.

The role of kinship carer

Kinship Care, Family and Friends Care or Connected Carers are all terms used by the social services to describe what I and many thousands of grandparent, siblings, aunts and uncles or even very close family friends are doing on a daily basis. We look after the children because we love them and know that the alternative of putting them into care is unthinkable.

It has been estimated there are about 300,000 children being cared for by other family members because the parents are unable to look after their children for a variety of reasons. The majority of those carers are, like myself, retired and living on pensions.

Once a residence order or a special guardianship order has been awarded, which are issued through the courts, we then take on the parental responsibility and more. Some grandparents are caring for four grandchildren, some have children who are disabled or who have been traumatised by their earlier experiences, and we even have great grandparents caring in their 80’s. It is estimated that around 25,000 family and friends carers are over 65 but this figure is probably greater than the estimation.

We meet the daily needs of the child, we keep them safe, we nurture them, we provide stability and love and give them a sense of still belonging to the family. We coordinate contact between parent and child where appropriate, and this can be a very difficult role especially when we are suffering the pain of knowing our own child has such overwhelming problems.

Statistically, children who are cared for within the family do much better than those in care. They may have experienced the same multiple adversities as children in care, but the benefits of remaining with their family help them overcome those traumas.

Sadly the role of kinship carers is often hidden and unrecognised. It has been estimated that kinship carers save the taxpayer £12 billion a year in care costs (if the children we look after were put into foster care). We campaign constantly for better support and recognition and some of our pleas are heard but there is still a long way to go to secure a better future for our children.

However despite all the problems and difficulties I would not change a thing. It has been a joy and a privilege to bring up my granddaughter and I would do it again a hundred times over.

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Ann has raised here, and answering your questions. Please join us!

Standing on the shoulders of giants – #DDA20

The campaign for the Disability Discrimination Act inspired a movement. It also inspired a new generation of campaigners to continue fighting for change. 

This blog is shared as part of a series of stories to celebrate the campaigners who fought for civil rights. You can find out more on our website or on social media using #DDA20.

Beth Irwin

A picture of Beth Irwin posing for a selfieBeth is an ex para-athlete turned graduate screenwriter, who is currently combining two of her passions – disability equality and screenwriting together to develop a feature film script exploring the disabled people’s rights campaign that led to the Disability Discrimination Act 1995.

As somebody with cerebral palsy, my life has been changed by learning about the disabled civil rights campaigners. As a writer, I’m always looking for that one story that people can’t forget. When I came across the civil rights campaign during my degree studies, I knew it was a story that needed to be told and I wanted to tell it.

From the early stages of writing, I knew that my project was bigger than any university assignment. I promised myself that I would take it on as a long term project after my graduation. There was never any question of should I or shouldn’t I. Growing up, there were no disabled people on television and film and I yearned to see somebody I could recognise.

If my sixteen year old self had known about the movement I would have been the confident disabled woman that I am today much earlier. I want sixteen year olds to grow up knowing about the movement. It should be a part of social history and remembered as important, not forgotten as it is today.

There’s a wonderful quotation for an unknown disabled civil rights campaigner that I believe underpins the drive behind the A picture of Beth Irwin as a baby wearing a pink hatmovement. It goes “we are not weak and we will never be seen as weak again”. In a matter of a few words it says everything and the reasons behind why direct action was a necessity.

It’s a shame we are still in that position where we need change. If I could, I would definitely have been on the frontline of the campaign in the 90’s, chained to a bus, stopping traffic, shouting for equality at the top of my lungs! Twenty years later, I knew I had to do something to be part of this collective voice.

We are yet to achieve equality. The DDA was a bittersweet victory that still needs a lot of improvement before everything is perfect. There is still a long road ahead of us both politically and socially. Yet, thanks to the DDA and the people who fought for it to happen I am not that ‘fragile thing’ that I would have inevitably been seen as before the DDA and everything that has subsequently come after it.

Lucy Ruck

Lucy is the Technology Task Force Manager for the Business Disability Forum.

Twenty two years ago I was hit by a train. I wasn’t a reckless teenager jumping on to train tracks for fun. I was on my way to college. There wasn’t a bridge at the station, so I didn’t see the fast train hurtling towards me as I moved to cross the tracks. My leg was found half a mile up the track. My right leg had gone underneath the train. I became an amputee.

A picture of Lucy Ruck as a little girl in a ballerina outfit My accident happened in 1993 and the DDA came into being a couple of years later. It was only when I entered the workplace that the DDA began to make a difference to my life. I needed to visit the hospital for fittings because there were lots of changes to my stump. My employer got slightly fed up with me taking time off quite regularly and asked me if I would be willing to consider this time as holiday. Being young and unsure about my rights, I agreed.

Then somebody told me about this new Act called the Disability Discrimination Act had just come into place and could support me if I was being treated unfairly. Knowing that law existed empowered me enormously. It gave me the confidence to say to my employer, “Actually that’s not fair that I should use up my holiday days waiting around for doctors in hospitals when this law requires my employer to make a reasonable adjustment.”

The DDA gave me the amazing opportunity to say, “No. I won’t do that. There is this law. That’s not fair.” I didn’t want to kickA picture of Lucy Ruck sat on a hospital bed after her accident up a fuss, all I wanted was the right to fight my corner for an even playing field.

We still have attitude problems. The average person on the street doesn’t quite always know how to talk to a disabled person. I think a lot of people would rather say nothing than say the wrong thing and that’s a real shame.

If someone used the wrong term or called me an amputee, I’m not going to get hung up on that. I will correct people in a polite way, but the key thing is that people don’t isolate me because of my disability.

Find out more about the activists and campaigners who fought for civil rights and about the Disability Discrimination Act

What do you want to change in the next 20 years? – #DDA20

November 2015 marked 20 years since the passing of the Disability Discrimination Act, the first piece of legislation which provided disabled people with protection from discrimination under the law.

Whilst the law improved the lives for many people and the campaign inspired a movement, there’s still lots to be done. Campaigners Layla Harding and Sulaiman Khan tell us what they want to change to make equality for disabled people a reality. 

This blog is shared as part of a series of stories to celebrate the campaigners who fought for civil rights. You can find out more on our website or on social media using #DDA20.

Layla Harding

Layla is 21 and from London and currently studying for her Masters. She’s recently got involved in campaigning on disability and equality issues. 

It’s really important that we change attitudes now. I think the media has a huge role to play creating positive and realistic representationsA black and white photo of Layla Harding. We need greater visibility in the media. Not stories that are just based on the character’s impairment as the focal point of their story line, but instead the fact that they’re disabled should be just one part of who they are.

Providing early opportunities in schools for children to learn more about disability issues is also vital to improve attitudes. Many children do not have any lessons about disability issues and so this can make make them unaware or fearful about disability and how to approach the subject of disability.

I’d also like to see more of a focus on disability equality issues at university as there is so much scope to have a big impact on attitudes there. There should be more campaign weeks focusing on various issues affecting the lives of disabled people. My university held a ‘Don’t Dis My Ability Week’  but I didn’t even know about it as it wasn’t well publicised!

I’d like more integration for disabled people. I want disability being less awkward subject to discuss.

Sulaiman Khan

Sulaiman wearing a suit and tie in his wheelchairSulaiman is 30 and from London. He works as a researcher and is also a wheelchair user.

I’d like us not to be talking about ‘disability issues’ by 2035. I’d like the lives of disabled people to be very much like those of non-disabled people. I don’t want to be talking about accessible transport or providing more social care support.

I don’t want to be saying that more disabled people should be able to enjoy careers like everyone else or that it’s odd for a disabled person to be in a relationship with a non-disabled person.

I don’t want disability to be an issue at all!

We all must work to make disability a part of everyday life. I know that won’t be easy, but people have always been telling disabled people they couldn’t do things and then disabled people went ahead and did them anyway.

We have to take back the reins again as those disabled people did in the ‘80s and ‘90s when they were campaigning for civil rights.

I hope a disabled person my age is able to look back with their friends and family to 2015 and wonder what all the fuss was
about and wonder why it wasn’t sorted out sooner!

Who on earth would argue against disabled people being equal?

Find out more about the activists and campaigners who fought for civil rights and about the Disability Discrimination Act

Building a broad movement – #DDA20

The campaign to change the law for disabled people brought together a broad coalition of activists and impairments for the first time. Liz Sayce OBE of Disability Rights UK and Frances Hasler of Healthwatch Camden talk about how the movement drew strength from its diversity. 

This blog is shared as part of a series of stories to celebrate the campaigners who fought for civil rights. You can find out more on our website or on social media using #DDA20.

Frances Hasler

Frances is Director of Healthwatch Camden. Frances helped to set up the National Centre for Independent Living, and was a campaigner for direct payments and civil rights legislation.

One part of the campaign that I’m quite proud of is our ability to bring new people into the action, as well as the people who would always be involved.

Disability rights activists had a very different approach to the charities, and one of the reasons was their involvement in the other equality campaigns of the time. We had people in the civil rights campaign whose activism included the anti-Apartheid and LGBT movements. We knew that the disabled civil rights activists in America had learnt directly from the black civil rights and feminist movements, and we were also learning from the other equality and social justice issues.

It’s about equality for all

For me, it wasn’t about special pleading for disabled people. It’s about equality for all, so that if it’s about equality for me, it’s equality for you, too.

The movement didn’t get it all right – not everyone always felt included – but this sense about the connectedness of equality struggles was there. In practical terms, this meant having the largest possible coalition of people with a range of impairments.

One of the things that this openness and inclusiveness did was to bring a great energy into the campaign, in the form of the UK Coalition of the People Living With HIV. Charismatic people were involved in that campaign, in particular John Campbell. They brought irreverence and their own unique tactics. At a time when people with HIV were dying very quickly, and when use of retroviral drugs was in its infancy, these activists had an absolute urgency when campaigning.

Liz Sayce OBE

A head shot of Liz SayceLiz is Chief Executive of Disability Rights UK and was a member of the government’s Disability Rights Task force between 1997 and 1999. 

“Our critics are like wolves circling a flock of sheep, looking for the weakest to pick off – that is, people with psychiatric disabilities”.

So said the Equal Employment Opportunity Commissioner in the USA, where popular and ‘unpopular’ (mental health and HIV) disability organisations had joined together, to succeed or fall together, in their fight to get and keep civil rights law. Thanks to the late survivor activist Judi Chamberlin, unity held and the American law covered mental health discrimination.

I worked with Ian Bynoe, Mind’s legal director, who co-wrote the first policy blue-print for disability discrimination law in 1990. In 1978 mental health activists had called for anti-discrimination law, but were turned down on grounds of insufficient evidence of discrimination to justify legislation.

In the 90s I oversaw lobbying on the Disability Discrimination Bill which ensured that mental health and even personality disorder were covered, against everyone’s expectations. Peter Campbell, the great leader of Survivors Speak Out, led survivors in pressing for our rights, working with legal experts. They were exciting times.

Mental health

I spent much of the next decade putting discrimination on mental health grounds at the heart of disability rights thinking; and disability rights at the heart of mental health debates. Formed in 2000, the Disability Rights Commission (DRC) decided to list important adjustments to the social world ahead of more obvious physical access adjustments, all to create a sea change in public awareness of the massive exclusion of people living with mental health challenges.

At the DRC, we undertook formal investigations and found no less than a quarter of DDA employment cases concerned mental health discrimination. Commissioner Richard Exell talked of his pride in working with other mental health users and survivors around the country to promote our rights. The DRC Commissioners historically opposed distinct mental health law as inherently discriminatory – because it permits compulsory treatment of people quite capable of deciding for themselves. We thought we were making headway.

We must be inclusive

Breaking down physical barriers is crucial – and patently unfinished. But, if we are serious in using figures like ’12 million disabled people’ we must not imply access is only or mainly physical. We must be inclusive. History in the US and UK shows us that unity is strength.

The mental health movement is not a small adjunct of the ‘main’ show: it has fought discrimination for centuries. I spoke to Peter Campbell, now retired, and he said “We are still fighting on”. We must. And we have to recognise the diverse history of our distinct but increasingly linked movements.

Find out more about the activists and campaigners who fought for civil rights and about the Disability Discrimination Act

‘I don’t want the money. I want to make a difference for other people’ – #DDA20

Many disabled people were worried that the Disability Discrimination Act (DDA) was too weak to make a real difference. Others worried that disabled people still faced barriers to challenging discrimination.

Lawyers Chris Benson and Catherine Casserley tell us how they worked to give the DDA more clout. 

This blog is shared as part of a series of stories to celebrate the campaigners who fought for civil rights. You can find out more on our website or on social media using #DDA20.

Catherine Casserley

Catherine is a barrister at Cloisters Chambers. After the DDA was passed she developed the Act in the courts and at the Disability Rights Commission.A picture of activists holding a banner saying Dump the Disability Discrimination Act

Many disabled people had campaigned for civil rights and created the circumstances for the DDA to come into being.

Yet the majority of blind people I supported at the Royal National Institute for Blind People (RNIB) had no idea that there was a law to support them when, for example, restaurants turned them away because they had a guide dog.

Often disabled people who knew that they had rights didn’t know lawyers such as myself who were willing to take their cases forward.

It was a very exciting time – working in a new area of law which had the potential to change lives. It wasn’t an ideal piece of legislation – there were faults with it and that was the focus of the campaign work that I was involved in, to secure changes to improve it. But it provided disabled people with a tool to achieve change.

“I don’t want the money”

I represented a young man called David Allen in his case against a bank in 2009. David’s branch was inaccessible to David and all of the bank’s suggestions were impractical or just embarrassed him. We took the case to court, funded by the Equality and Human Rights Commission, and the bank offered to settle for £5,000.

I talked over the offer with David because the amount was a lot of money for somebody aged sixteen. But David just asked, “if I take this, will it make a difference for other people?” and I had to tell him that no, it wouldn’t. David, who could really have benefited from that sum of money, simply replied: “in that case I don’t want the money, I want to make a difference for other people”. It was an incredibly selfless gesture from a young man and it was really inspiring.

We turned down the offer, pushed on with the case, and won – the court found that they had failed to make reasonable adjustments. The court required the branch to install a platform lift, at a cost of around £250,000. David was awarded damages of £6,500, increased to £9,000 when the bank unsuccessfully appealed. But the key thing for him was his ability to make a difference for other disabled people.

Chris Benson

FISS05Chris is a solicitor at the firm Leigh Day. In the run-up to the passage of the DDA he was a support worker for adults with learning difficulties. After the law passed he helped develop it in the courts and at the Disability Rights Commission.

I was lucky to get a job in the late 1990s advising disabled people and bringing cases on their behalf. I worked at Salford Law Centre as one of a small group of lawyers with few resources, all working hard to obtain equality for disabled people.

The DDA was really new and most of it had not been tested. I wanted to use the law that I had campaigned for. At the time it felt that the Law Centre was pushing cases, pushing the boundaries of the law, because it was so new.

I was strongly of the view that we could push the law by requesting reasonable adjustments that may have gone slightly beyond what the law would appear to allow. Yet often they would be accepted because the service provider wouldn’t want bad publicity. No business wanted to be the first in Greater Manchester to face a disability discrimination claim.

Pushing the boundaries

It was clear that the campaign angle could be used as well as the law. Both together were powerful. Case law has extended the scope of the DDA far beyond what most people would have dreamed of when they first saw its passing.

I remember the effort of Hammersmith and Fulham Action on Disability (HAFAD) – or the ‘envelope stuffers’ of the movement.
When you got letters in Salford, hundreds of miles away from the biggest, busiest protests, you got so much inspiration.

Years later, I had the privilege of taking a case on behalf of a former stuffer experiencing discrimination. The case was a strong reminder that the campaign worked because of people doing all sorts of things like envelope stuffing, mailing out letters, keeping together a movement spread across the country.

Find out more about the activists and campaigners who fought for civil rights and about the Disability Discrimination Act

“I’d like to see more disabled musicians on the world stage today”

Nicholas McCarthy, who was born without a right hand, made history when he became the only one-handed pianist ever to graduate from the Royal College of Music in July 2012. In this guest post to mark Armistice Day, he remembers the pianists injured in the World War I and the left-handed legacy of Paul Wittgenstein. 

As we remember the servicemen and women who fought in conflicts around the world, there is one injured soldier whose story will always inspire me.

In the wake of the World War I, the Austrian pianist Paul Wittgenstein made his own place in musical history through sheer determination and defiance of convention.

Wittgenstein was injured on the Eastern Front in 1914 when a bullet shattered his right elbow as his regiment fought the advancement of the Russian army. He woke up in a field hospital to find that his right arm had been amputated in surgery.

Less than a year before, the 26-year-old had made his concert debut in the opulent surroundings of Vienna’s Grosser Musikvereinsaal where he was well received by critics.

Wittgenstein had waited his whole life to make his debut. His family was one of the wealthiest and most influential in Austria at the time. His father disapproved of ‘entertainers’ and he had felt unable to pursue his ambition to become a concert pianist until the death of the overbearing patriarch.

When he awoke to find he’d lost his arm, he must have despaired at the thought that his dream had ended so soon after it begun. But he didn’t dwell on it for too long. “It was like climbing a mountain. If you can’t get up one way, you try another,” he wrote of his determination to continue to reach his career goals. Wittgenstein went on to use his money and his status to commission the best composers of the day to create new piano concertos for only the left hand.

Determination and defiance

Nicholas McCarthy staring at the camera for a press shot

For me, it’s this steely determination and defiance that I can relate to. My own story is about determination – there have been countless times when giving up would have been a much easier option.

I’m excited to perform Ravel’s piano concerto for left hand, commissioned by Wittgenstein, with the Kent Sinfonia orchestra at a Concert of Remembrance at St John’s Smith Square, Westminster on 11 November.

It will be the first time since the 1951 Proms that a one-handed concert pianist has performed this powerful piece of music. For me it is about war, loss and rising above circumstance. It’s a huge privilege to play.

Through my career I hope to inspire other young disabled musicians. I support Scope because I believe disabled people should have the same opportunities as everyone else. I want to challenge people’s assumptions about disability.

It takes a huge amount of work and determination – but my disability hasn’t stopped me achieving my dreams. I was told that I would never become a concert pianist and that I’d never get into the Royal College of Music. When I became a concert pianist I was told that I would never get signed to a major record label: I signed with Warner Music in April and my first album called ‘Solo’ came out in September.

A left-handed tradition

NM playing (2)

When I was accepted to the Junior Guildhall it was on the condition that I played only with my left hand. I didn’t realise there was a whole repertoire of left-hand only music. It was only when I started researching this that I discovered the Ravel concerto and the amazing story of Wittgenstein.

It felt like it had all been made especially for me. Benjamin Britten, Paul Hindemith, Sergei Prokofiev, Franz Schmidt, Richard Strauss and Maurice Ravel all produced pieces for Wittgenstein to play with his left hand.

Wittgenstein kept the pieces exclusively for his own use until his death. He seems to have been a bit of a difficult man, but I think he was trying to protect himself. I personally disagree with him though, I think music is for sharing and it’s always great to hear others’ interpretations. There were other pianists injured in the First World War who didn’t have his wealth or status therefore were unable to create the opportunities that he created for himself.

I’d like to see more disabled musicians on the world stage today. I hope my story and my career will inspire young disabled people to believe in themselves and to follow their dreams whatever they may be.

Find out more about Nicholas and his career and follow him on Twitter @NMcCarthyPiano.