Building a movement right across the country – #DDA20

Activists Chris Benson and Joanna Owen tell us about how the campaign for civil rights for disabled people involved people from all different backgrounds from right across the country. Protests in Leeds and Oldham showed the public that disabled people wanted to change the country. 

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.

Chris Benson

Chris is a solicitor at the firm Leigh Day. In the run-up to the passage of the Disability Discrimination Act he was a support worker for adults with learning difficulties.

Protesters at Leeds City train station

I remember being in a pub with some disabled people that I was assisting. The landlord asked my group to leave because he didn’t feel comfortable with them being there. I was so shocked to learn there was no law to right this wrong. Disabled people couldn’t escape discrimination and there was nothing they could do to tackle it when it happened to them.

I’m not a disabled person. I got involved in the campaign for civil rights as a facilitator. My job was to support the involvement of individuals with learning difficulties. So, once people were handcuffed to a train or a bus, I would stash the keys somewhere and make sure everybody had a cup of coffee.

Taking control

Picture of Chris Benson taken in SalfordMy strongest memory is of disabled people taking control of lives. Quite a lot of the people I worked with had severe learning difficulties but they knew what they were doing and why they were doing it. Seeing disabled people take direct action remains one of the most positive things that I’ve ever been involved with.

It was tough being in a Northern town because most campaigning was based in London. We couldn’t get down to London too often because buses and trains were tough to access, the costs of travelling were high, and the time and energy needed were so great.

We worked locally to raise awareness of the importance of rights. One of our memorable protests was in Oldham Town Centre, where we demonstrated against inaccessible public transport. What was key about that demonstration was service managers joined disabled people in lying down in front of buses to stop them from moving.

Causing difficulty

I was conscious of a big difficulty when it came to disabled people campaigning for rights. Adults with learning difficulties were very reliant on statutory services. If anybody asked their social worker or carer to support them in going on a protest to obtain rights, it caused professional difficulty. The staff – employed by the local council – had to make a choice, and so I often chose to use my free time to support the campaign for rights for disabled people.

The idea that disabled people had adapted minibuses or that local councils provided transport dominated the public mind. Actually, what disabled people wanted was to get on the bus like everybody else at the end of their street. We made the point that disabled people can’t get on the bus and go where they want. We raised awareness about the lack of rights where people would previously have had no idea. It put non-disabled people into the same shoes as disabled people and got our message across.

Joanna Owen

Joanna is a solicitor. In the run-up to the passage of the Disability Discrimination Act she was working with the Brent Association of Disabled People in London and took part in direct actions with the Direct Action Network.

I’m generally quite a quiet person when it comes to sticking up for myself. I’m not really the type of person to shout loudly about the things that bother me. I had shied away from campaigning through direct action for a long time because I thought it wasn’t ‘me’. As soon as I got involved in the Direct Action Network (DAN), I felt so strong.

A DAN national action focused on public transport that was impossible for disabled people to use. Over 100 disabled people travelled to Leeds City Station from all parts of the country.

Chained to an Intercity train

The railway station had no passenger lift to the platforms, so disabled people had to take the goods lift. Trains had one
space per train for a wheelchair user, so wheelchair users often had to travel in the guard’s van. With both the station and trains inaccessible, we were insulted that £40,000 had been spent on a garden on the end of one platform. It was insulting that disabled people were expected to sit in the garden while waiting for trains they cannot get on.

Picture of protesters handcuffed to a train at Leeds train station

As planned, people chained themselves to the Intercity 225 to London. Everybody had a role, from handcuffing themselves, crowding around the handcuffed campaigners to stop the police from cutting them loose, leafletting the public, or chanting. The whole day felt positive as the campaign stopped a train from leaving for up to forty minutes. That protest felt wonderful.

It felt particularly good to see we had support from so many non-disabled people. It validated our message. Usually, people didn’t really know about access issues unless somebody brought them to their attention. Campaigning is a good way of achieving that.

Negotiating is important for achieving change, but it happens away from the public eye. Behind the scenes negotiations happen at a slower pace and, at that time, we had run out of patience. We wanted the railway company to realise that disabled people mattered.

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

You can light up Christmas for a family like Jenny’s

Thousands of families are expected to turn to Scope for support this Christmas, which is why we’re asking you to donate to our Light up Christmas appeal. With your help we can be there for every family who contacts us.

Jenny found out her son Harry had cerebral palsy just before Christmas. She didn’t understand his condition or how to support him. Here she explains how calling the Scope Helpline was the moment everything changed and how vital your support will be to families like hers.

Two years ago, my son Harry – who was five years old at the time – was diagnosed with cerebral palsy.

Harry had been complaining of tiredness and pains in his legs. A physio told me he was a typical boy, being lazy. But I knew there was more to it.

Harry would also keep falling over, his feet turned inwards and there was other behaviour I couldn’t understand – he would have a meltdown if there was the slightest change in his routine.

Harry, playing with his toys

“I thought I’d broken my baby”

I had to fight to get an appointment with a consultant. When finally we saw him we talked for only a few minutes. He told us that Harry had cerebral palsy.

I asked, ‘what is it?’ and ‘how did it happen?’ He said I must have fallen during the pregnancy, scarring Harry’s brain . We left without any leaflets or explanations.

The information given to Jenny was incorrect. For help or information about disability please get in touch by phoning 0808 800 3333 or emailing helpline@scope.org.uk

Even though I knew I hadn’t fallen, I burst into tears. I thought I’d broken my baby.

When Christmas came, we were still in shock. Usually we’d spend the day with my mum, but instead we stayed at home on our own. It wasn’t nice.

We’d bought Harry a bike for Christmas and he didn’t want to go on it. Looking back now, I realise it wasn’t the right present, because of the pains in his legs. But we’d bought it before we understood what Harry was going through.

Calling Scope’s helpline

I’m so thankful I found Scope’s helpline number. Jackie – a Scope Information Support Worker with 17 years experience – called me back the same day.

Straight away, I realised I was talking to someone who understood. I could see a future, because Jackie could help me understand Harry’s needs and how to help him.

Ever since the day of that first emotional phone call, Jackie has been an amazing support. She understands cerebral palsy and she understands Harry. That’s invaluable to me.

With her help, we’ve adapted to Harry’s needs and so has everyone in his life. Harry is doing really well at school and we are starting to think ahead to when he moves on to secondary school.

It isn’t just Harry’s life that’s better, it’s the whole family’s. And this year, we’re really looking forward to Christmas!

Harry, celebrating Christmas with his mum

We want to be there for every single family that contacts our information and support services this Christmas.

Please give as generously as you can and light up Christmas – and the future – for a disabled child and their family.

Donate to our Light up Christmas Appeal today.

For help or information about disability please get in touch by phoning 0808 800 3333 or emailing helpline@scope.org.uk

“I can’t get out of bed, or get dressed, most days”

New research released by Scope today reveals the extent of the social care crisis for disabled people who need support to do the basic things in life. Here are three of their stories.

Robert, 63, from Warwickshire, has very restricted mobility following an accident 15 years ago. He isn’t able to get out of bed, get dressed or prepare food without support, and is in a lot of pain. He’s currently entitled to 14 hours support a week.

Robert, a disabled man in his 60s, in bed.

In an ideal world, my support worker would come for two hours a day, and he would shower me and change my bedding, vacuum my room and stuff. But if you have a week like I had last week, where I had three hospital appointments, all my social care is used up on getting me to hospital. There’s no time left for everyday care.

If I’m on my own, I don’t have anything to eat or drink all day. So life is miserable, to be honest.

I’m lucky that my wife lives with me, but she shouldn’t have to do everything for me, and without her there is no way I could live independently.

I rang up my local authority and told them I was under pressure – I couldn’t afford the water rates, and I was being taken to court. They sent me a letter telling me to get food from a food bank 17 miles away. I can’t get there, and I would rather starve myself to death than go to a food bank.

I can’t get to see my grandchildren. I’ve never visited my son’s house. I honestly can’t remember the last time I did something socially, out of the house – we’re talking years ago.

“I have to sleep in my wheelchair, and I am malnourished”

Rachel, 42, from Southampton, uses a power wheelchair and is in constant pain. Her mobility is very restricted, and some days she isn’t able to get out of bed.

Since 2010, I have had two thirds of my care package cut, from two and a half hours a day down to 45 minutes.

My social worker just said ‘We can’t do it any more, we have to make cutbacks’, and then my care was cut almost instantly. It just feels like they washed their hands of me.

On my worst days I can’t get undressed properly in the evenings, or transfer from my power wheelchair into bed, so I have to sleep in my chair, in my clothes. I had to fight to get a care call so I can shower once a day. My local authority suggested that three days a week would be enough.

It’s horrible. When my arms aren’t working properly, I can’t prepare meals, so I end up just having bread. Before, I would have had my meal prepared. The last time I was in hospital, they told me I was malnourished.

“I’m getting deeper into debt just paying for basic care”

Jo, 47, from Cambridgeshire, has spinal muscular atrophy. She arranges her own care, employing support workers using direct payments.

I’ve got very weak muscles all over, I use an electric wheelchair all day, and I need support doing most things really – washing, getting dressed, cutting up food, moving my arms about to help me do things.

I need to have carers come in three times a day, and I technically get enough funding for 28 hours care a week. But the rate we get hasn’t gone up for 15 years, and there is a shortfall in how much that 28 hours actually costs when all the extras come in – holiday pay, recruitment, pension contributions.Portrait of Jo, a disabled woman, sitting in her wheelchair

You end up cutting corners with the very basic things. I might end up not washing my hair, because it means I’d be keeping the carer here too long. It might take me three quarters of an hour to have a shower, but social services say ‘Well, actually you can do that in 15 minutes.’

We are actually in debt. I’ve had to take out personal loans. This has been going on a good five years. We never clear it, it increases slowly year by year, and it just feels like it will never end.

If I cut back on the amount of care I get, that would mean staying in bed in the morning, or not going to bed at night. It really is the very basics.

We’re calling on the Government to urgently address the social care funding crisis when future spending plans are announced by the Chancellor on 25 November.

Find out more on our website.

“I’ve been in these clothes for two days now. I haven’t had a shower. I feel awful.”

Guest post by Kirsty, who lives alone and needs support to get up, wash and dress, and leave the house. She uses a wheelchair. Her social care was cut by 50 hours a week, leaving her in huge difficulties. She has asked for her name to be changed to protect her identity.

I’ve been wearing these clothes for two days now. I haven’t had a shower. My hair isn’t tied back and I can’t do it myself. I feel awful. If I can’t find care tomorrow, that will be my third day in the same clothes.

For over 10 years, I was entitled to nearly 80 hours a week of care for getting up, showered and dressed, going about my daily life, and doing social activities. I also had an on-call service at night in case I needed the toilet.

Then I received a letter out of the blue telling me that I had five days to get some incontinence pads to wear at night, because my night care was being cut.

I am not incontinent and I have full sensation, so I’d be lying there from 10 o’clock at night until 8 o’clock in the morning.

I challenged the decision and won, but that triggered a review of my whole care package. As a result, my daytime care was cut to 23.5 hours a week – from 11 hours a day down to three and a half hours.

Under pressure

It has affected every single area of my life. Before, I was independent – not in the sense that I did everything for myself, but that I had choice and control over my life. Now I feel like the structure of my life has completely broken down.

I can’t leave the house on my own, so I am stuck inside most of the time. I can’t go to the bank, or to the shops without support. I live slap bang in the town centre, but if there’s no one here to help me I might as well be on the moon.

I get an hour and a half care in the morning, an hour for tea and an hour at night, and I’m always under pressure because I cannot complete the things I need to do in that time. I have been threatened with being left naked in the shower by agency staff because my time was up.

I now employ my own support worker, but her time is restricted – she has another job, and travelling to me three times a day wouldn’t be worth her while. We often have to combine my three calls into one, but then I’m left alone all the rest of the day.

If my support worker is away or off sick, I’m expected to cover care myself using agencies. There is often no one available, and then I’m left completely alone.

Stuck inside

At the moment I rely a lot on a close friend, but I shouldn’t have to put them in that position. I don’t ask them shower or dress me, but I’m still terrified that the pressure will put strain on our relationship.

The social things I used to do are impossible, unless a friend is prepared to help me – for example, they’d have to help me get into bed, still wearing my clothes.

I do worry about my mental health. Not being able to get out of the house, or go down the road to visit a friend, or even to the shop or to get some fresh air, is horrible.

I find it really shocking and distressing that even the basics aren’t in place for me – and there must be thousands in my position. I’m being made to feel like it’s wrong to expect to be showered and dressed every day. All I want is to be able to lead a normal life.

We’re asking the government to fund better social care for people like Kirsty. Read more on our Social Care webpage

The photo in this post is posed by a model.

We met in handcuffs. Now we’re married! – #DDA20

Activists Agnes Fletcher and Adam Thomas tell us how the campaign to change the law changed their lives – in more ways than one.

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.

Agnes Fletcher

Agnes Fletcher worked for Disability Awareness in Action, which she represented in Rights Now!, and took part in direct actions with the Direct Action Network.

I didn’t grow up thinking of myself as disabled, although I have a number of impairments. I thought about disability in the same way that most people had for a long time – as a greater or lesser medical tragedy, to be cured if possible or, if not, hidden. I had ‘internalised the oppression’ – my difference from the idealised norm was a source of shame.

It was only after I met Rachel Hurst that I discovered the social model of (or way of thinking about) disability. Not only did my meeting make sense of my frustrations, but it transformed my wish to change myself into a desire to change society.

I started working for Rachel, and soon after went to my first demonstration. The protest was organised by the Direct Action Network (DAN) and it was scary because it involved breaking the law. Inspired by the suffragette movement and the American black civil rights movement, DAN led peaceful law-breaking, such as stopping traffic, to draw attention to injustice.

Getting arrested

Agnes Fletcher in Trafalgar Square, London, wearing a Rights Now! t shirtI was arrested and driven to a police station where I whiled away an hour in the cells then received my caution for obstructing the public highway.

It was exciting and strange – handcuffing myself to a bus, bringing traffic to a halt until the bolt-cutters came, and being locked up for it. It was amazing to replace the stereotypes of what disabled people should be – ashamed, weak, passive – with pride, collective strength and action.

It says a lot that many disabled people risked arrest or put themselves in physical danger for the cause. We felt that protests were the only way to get media coverage. Disabled people historically had never been able to control what images of us were shared with the general public – there’d been freaks shows, medical displays and charity fundraising adverts aimed at shocking people, frightening them and eliciting pity.

Changing people’s views

With direct action, disabled people could guarantee media coverage and control over the images beamed via television into living rooms.

Direct actions put disability issues in the spotlight and pressured MPs into realising that we weren’t going away, no matter how many times they rejected a civil rights bill. At the time, it felt like direct action was the only way we could get our long-ignored message across.

Campaigns can provoke debate and create political pressure. They also inspire and unite people. Alongside the demand for civil rights, DAN was campaigning to ‘free our people’ – to end forced institutionalisation of disabled people in residential homes. Some demonstrators were on ‘day release’.

Singing, shouting, chanting, blowing whistles –  we felt a sense of our power and pride in our experiences and struggles. None of us could have done it on our own but the collective power freed all of us.

If I went back in time, I’d do all of it again. It was so exciting. It’s so much a part of who I am today. I met so many incredible people who’ve become good friends that I’ve learned so much from. They redefined what it means to be brave – not brave in terms of physical or mental challenges, although many were that, but brave in terms of defying expectations for themselves and disabled people to come.

Adam ThomasAdam Thomas in his wheelchair on a busy street

Adam Thomas worked for the Rights Now! coalition and took part in direct actions with the Direct Action Network.

Life was tougher back then. Small things were a big problem. Cash machines were too high to reach from my wheelchair and phone boxes were too small to get inside. Pushing my way around London made my hands filthy, and most of the public toilets weren’t accessible or the sink taps were beyond reach. Eating with dirty hands really took the edge off an evening out!

When I joined the disability movement, I worked in Rights Now! (with Victoria Scott) as well as the Direct Action Network (DAN). In the morning, I could turn up to a DAN direct action with a pair of handcuffs – bought from a rubber sex shop on Upper Street in Islington! – and chain myself to a bus outside Parliament. In the afternoon I’d join Rights Now! people, go into Parliament and meet MPs shaken by the earlier protest. We showed MPs and ministers Colin Barnes’ research, which proved that disability discrimination was widespread.

Rights Now!

With Rights Now! we could encourage thousands of disabled people to lobby Parliament but newspapers would write one
column inch of news. With DAN, we’d have 20 people cuffed to big red buses and every reporter in the city would be covering the protest within 15 minutes and putting it on the evening news of every major TV channel.

If I’d gone to a restaurant with a black person who was denied service, we could have called on the law to resolve the discrimination. If I was denied service, it was the restaurant owner who was able to call on the law if I demanded service. I felt alive on the protests and I knew that we were doing something worthwhile.

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

Disability Innovation: A day in the life of an iPad

Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier. We are having a tech fortnight to focus on technology and hope it will inspire more innovation in the disability field.

The development of various tablets has already had a huge impact for many disabled people, making it easier for them to plan, communicate and engage. There are lots of different apps and software out there that can offer support, and although many were developed without disabled people as the intended audience, they can be used throughout the day to make life easier and give more control. The following is a possible day in the life of an iPad.

Starting the day

7 am: My alarm wakes me at 7 with a gently increasing sound, so as to not wake me with a shock. Now there is a range of possible alarms including vibrating or high pitched sounds, so regardless of your impairment you can still be up on time.

7:30 am: Using Skype or Facetime I can get in touch with my support worker to discuss the day ahead and let them know how I feel- is today a good day or a bad day? Is there anything unexpected I might need today they can bring?

8 am: I turn on the radio using my radio App to find out what’s happening in the world today, how the traffic is and what I can expect from the weather. It helps me plan my outfit, transport and activities. If you need more detailed weather information there a range of weather apps to choose from.

8:30 am: Using assistive technology from Perrero I switch open the door so my support worker can get in.

Keeping active during the day

9 am: I’ve checked emails, LinkedIn and Facebook. Whether you are working from home, checking on freelance opportunities or just staying in touch with friends and family it’s easy wherever you are.

10:30am: I’m enjoying a mid-morning relax with an online paper. Sadly the iPad won’t make my a cup of tea (yet!)

1pm: The taxi I ordered via my app has arrived to take me into town for a doctor’s appointment, and once it’s done I can book a follow up appointment online.

2pm: Just seen a great top in a shop window so I’ve taken a picture on the iPad camera so I can hunt it down online later and get it delivered straight to my door.

5pm: Catching up on my favourite TV programmes via demand services such as BBC iPlayer.

6pm: As a treat I’ve ordered takeaway from somewhere local to be delivered to my door using Just Eat. Got no cash? That’s OK because I can pay online as I order.

Winding down

8pm: I may not be going out tonight but I can still socialise online: What’s App with a friend, chat to someone new on Tinder or contribute to online discussion boards like Scope’s Community.

9pm: Quickly check my Google calendar for tomorrow’s plans and see if there’s anything I can book in advance.

9:30pm:  Chilling out watching a film online to unwind for the evening.

11pm: Back in bed I’m going to read a bit of your current book via my ereader app before a good night’s sleep.

This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.

Progress and setbacks in the fight for civil rights – #DDA20

Disabled activists wanted the same rights as everybody else. In 1994 an MP’s civil rights bill was making its way through Parliament and campaigners were holding lobbies and rallies to keep up the pressure on all MPs. Activits were left disappointed when the law was defeated. 

Former MP Roger Berry – who introduced the civil rights bill – and Victoria Scott – who worked in parliament to try and change the law – talk about their work to secure legislation. 

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. 

Roger Berry

Picture of former MP Roger BerryRoger was the MP who proposed a civil rights bill which galvanised activists to lobby Parliament and hold a rally in Trafalgar Square. The ‘Berry Bill’ was defeated.

In 1992 I became an MP by defeating the person who, two months earlier, had blocked a civil rights proposed by Alf Morris. A year later the number of second readings of Private Members’ Bills was increased from six to seven. In the ballot for these bills I was fortunate enough to come seventh. Since I had been planning with Alf Morris to persuade a lucky colleague to take up his Civil Rights Bill, I now had no hesitation in offering to do that myself.

I knew that for years the movement had been campaigning for equal rights. What I didn’t know, until we first met, was that Rights Now! had a campaign strategy up and running. This included a lobby of Parliament in March 1994, and a big postcard campaign that ensured MPs knew the views of disabled constituents.

Lobbying Parliament

TPicture of a lobby of Parliament in Westminster Hallhis lobby of Parliament was, according to MPs who’d been around a long time, the largest they’d ever seen. It provided clear evidence of the need for things to change – like most places in the Houses of Parliament at the time, it was inaccessible! Many MPs who hadn’t been engaged in the debate were being forced to address the issue for the first time.

I never expected the Government to do other than seek to block the Civil Rights Bill and it was no surprise when they denied MPs a vote on the Bill. There was public outcry at the manner in which the Government had blocked the Bill. For this reason the Government felt it had no alternative but to reverse its position and we now saw the remarkable spectacle of it finally embracing the principle of legislation! The campaign was having an effect.

After the Disability Discrimination Bill had been published a rally in Trafalgar Square was called to demand the real thing. At the rally many spoke: MPs, personalities, and, most importantly, disabled activists. A march down Downing Street had a profound effect, not least because the media covered it, representing the strong feelings of disabled people.

It’s important to engage with Government, but it’s extremely helpful if there are people making one hell of a fuss outside Parliament. We’re a democracy and MPs have important roles to play. But we didn’t make progress on disability rights because of speeches. We did it because of the campaign being run outside Parliament. That‘s what made the difference then. And that’s what can make a difference now.

Victoria Scott

Picture of Victoria Scott taken in front of a bookcase

Victoria was research assistant to the All-Party Disablement Group inside Parliament and worked with the Rights Now! coalition of disability activists and organisations to pass a civil rights bill into law.

It was an incredibly exciting time and Roger Berry’s Private Member’s Bill played a huge role. Ahead of a lobby of Parliament in support of Roger’s bill, I remember a red postcard campaign by Mencap to make MPs aware of the views of disabled constituents. Walking through Parliament one day, I saw a flustered MP opening his post and hundreds of these postcards falling to the floor. I got a real feeling that we were going to pass a civil rights bill into law this time.

I felt less confident about how many hundreds of people would be able to turn up to the lobby of Parliament. I was very aware of the various barriers in place – transport to get to the lobby or the need to install ramps, heaters, and induction loops. In the event, the day was monumental and historic, not hundreds but thousands of disabled people and carers turned up to make their voices heard.

Rally in Trafalgar SquarePicture of activists and campaigners calling for disability rights heading down Whitehall in London

MPs who thought they could get away with quietly opposing the Bill quickly realised they couldn’t, because their own
disabled constituents had made their way to Parliament. Seeing disabled people in the heart of Westminster was inspirational. Seeing MPs who had been strong disability advocates, such as Jack Ashley and Alf Morris, in the midst of all these disabled visitors was incredibly moving.

The rally at Trafalgar Square was memorable in a number of ways for me: the people and organisations whose doors we’d been knocking on for decades with very little success were suddenly reaching out to us, asking to speak from the stage.

I had real hope that Roger’s bill would pass. Real hope is exciting but I underestimated the lengths to which the Government would go, including underhand tactics and sacrificing their own Minister. It later transpired that the wrecking amendments added to Roger’s Bill had been drafted by the Minister’s civil servants. Obviously there was a deeply personal aspect to the campaign as my father was Minister of Disabled People at the time. It was a tough time for us, but it got the papers focused on the issue and helped keep the pressure on.

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

Disability Innovation: What might the future be for technology and care?

Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier. We are having a tech fortnight to focus on technology and hope it will inspire more innovation in the disability field. In this post we hear from George

My name is George and I am a law student at the University of York. I, like most people my age yearn for independence from my family and seek to carve a future for myself. However, achieving independence is made harder when you live with a physical disability which means I occasionally have to depend on carers to assist me with care.

While striving for this independence, I have spent a considerable amount of time wondering what the future of care will look like. As budgets continue to get tighter and tighter, I find myself questioning whether technology will ever fill the place of traditional carers and if so, how will it work? What will it do? And how should it be implemented?

What is out there now?

 At the moment there seems to have been a trend towards inventing more devices to help with care tasks. These are aimed more at the aging population, but cover many of the tasks that millions of adults struggle with every day. The first of such inventions is the Oasis Seated Shower system. This product from America allows a person to remain seated while various outlets provide both water and soap to all body surfaces. The device features a unique seating system that allows a thorough washing of areas that would normally be inaccessible on a traditional shower chair. The entire process can be controlled with either a remote control or in an automated process. This not only means that a person using the device does not need help to do so, but also means that there is less strain on carers looking after people.

Another area where there have been lots of recent developments is toileting. While there have been many innovations in this area such as the introduction of Clos-O-Mat toilets, there has been little in the way of development with incontinence. This rather delicate area has not significantly changed for decades, however, a new product from a company called Novamed could solve some of the problems associated with this care activity. Their new Solaticare device provides a means whereby people who have difficulty transferring or are confined to a bed to use the toilet without having to wear pads. The system is able to remove waste and then provides warm water and warm air to clean the user. This once again means that users can stay in bed and do not have to depend on others. It also means that there is less need to wake up in the night to change pads or clean bedding in the case of accidents.

What does the future hold?

After a whistle stop tour of some of the products that are available, we must look towards the future of care and how it will be provided. Once again there are a number of products in the pipeline that are seeking to help disabled people and the elderly stay independent for longer. One example is the ISupport shower system being developed as part of the European Horizon 2020 event which is seeking to completely automate showering. Another instance is the increasing and experimental use of healthcare robots in Japan to help care for their aging population.

I personally feel it is up to us to be vocal about what we want from this technology. So, what would you do? What would you automate? Would you like to be helped by a machine?

Discuss technology on our community.

This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.

‘This is the only place in the entire country where you can feel proud you’re a disabled person’ – #DDA20

During the fight to change the law and to change attitudes, thousands of disabled activists took direct action to capture the public’s attention.

Thousands of campaigners turned out in force on London’s South Bank to block Telethon, a fundraising broadcast on television. Campaigners travelled from all over the country to oppose negative portrayals of disabled people and make the point that disabled people should have rights, not pity.

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.

Barbara Lisicki 

Barbara Lisicki was a disability rights campaigner with the Direct Action Network, who used direct action to fight for equal treatment. Barbara has also been a stand-up comic since 1988 and worked as accessibility manager at the London 2012 Organizing Committee of the Olympic Games and Paralympic Games.

Disability rights campaigners at a rally in Trafalgar SquareIf you’re under 35 it is unlikely you will remember Telethon. Those of us who remember contended with 28 hours of unremittingly patronising fundraising, as audiences wondered why Coronation Street or Emmerdale were not on air when they turned on their TVs.

In 1990 and 1992 the television broadcasting world was very different. Today you can flick from channel to channel. In 1990 there were four channels, and one would take all of its programming off air to swamp the public in a festival of begging for the ’less fortunate, deprived and disadvantaged in society’.

With two weeks to go before 1990 Telethon, a few young disabled people from Ealing in West London met me and Alan Holdsworth (also known as Johnny Crescendo, the singer and songwriter of the anthem of the disabled-led, disability rights movement: ‘Choices and Rights’).

These young people told us: ‘We cannot sit through another assault on our senses, our identity and our dignity for another year. This is what Telethon does to us and we want to do something’. So we did something. Within two weeks, we had printed t-shirts and leaflets, and mobilised up to 200 disabled people outside Telethon. We got coverage, satisfaction, and reaction, but not enough.

Block Telethon 1992

In 1992, we were better prepared, and it worked. 2,000 campaigners protested against Telethon. The streets were jammed, we had banners and placards, and proudly wore black t-shirts with ‘Piss on Pity’ in shocking pink. The police were unimpressed, calling the language offensive and demanding we took them off. I was willing, but told them that I wasn’t wearing anything underneath!

Alan and I had been mobilising people to join our protest over months. I had rung people, distributed leaflets, and spoken with groups around the country. Young people had told their parents that they were going to Telethon, but not saying why! Performers and speakers, sign language interpreters and support workers, all freely gave their time, all to reclaim our dignity.

Mike Oliver summed up Block Telethon in a speech to the crowd: ‘Today, this is the only place in the entire country where you can feel proud you’re a disabled person’. Mike was right.

Proud

Our argument was simple: the only time disabled people appeared on TV was in tragic and needy roles, begging for money. Why? And what damage did this do? What employer watching – and probably donating to Telethon or allowing staff to organise a fundraising event – would hire ‘poor creatures’?

‘Rights Not Charity!’ was the disabled people’s movement’s early call to arms. We were run and controlled by disabled people, unlike charities. We were sick of traditional solutions to the ‘problems’ of disabled people and demanded an end to discrimination.

Two thousand disabled people – all proud, angry, and strong – chanted, sang, and brandished banners. Celebrating our difference and challenging negative stereotypes, we stopped Telethon. It never appeared on air again.

We won then and we can win again.

Adam Thomas

Adam Thomas worked for the Rights Now! coalition and took part in non-violent civil disobedience and direct actions organised by the Direct Action Network.

I snapped my spine in a motorbike accident three weeks after my seventeenth birthday. Ironically, this happened in 1981, the year the United Nations proclaimed the International Year of Disabled People. Until I became a wheelchair user, I was going toAdam Thomas looking at campaign memorabilia at his home pubs and concerts. After my accident, I found it hard to go because the venues were often inaccessible or had inaccessible toilets.

I had no experience of the movement whatsoever. I was a kitchen designer becoming more and more political as my frustrations boiled over. At that time I had no idea about the medical and social models of disability. All I knew was that I had been injured in the Year of Disabled People and spent 15 years listening to politicians say there was no need for legislation.

I wasn’t alone

When I saw the Block Telethon protest on July 18 1992 I realised that I wasn’t alone in the world. Seeing the protests against the celebrity fund-raising gala ignited the fire smouldering inside me. It just didn’t feel right that celebrities would turn up, raise money, and everybody except disabled people would feel warm inside.

I needed my civil rights and we didn’t have them. I didn’t need pity or negative images of impairments. I saw that there were other disabled people out there who felt the same way. They had gone on a protest, had fun, joined together, and made an impact: that protest succeeded in stopping Telethons.

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

Baroness Campbell: from pickets to Parliament – #DDA20

Baroness Campbell was on the front line of the campaign to change the law for disabled people. She’s spent her life campaigning for equality and tells us how the campaigning community made her who she is today.

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. 

All throughout my segregated school days, where I was taught nothing apart from how to cook cheese on toast, make pottery vases and learn about dinosaurs, my life was in black and white. At 16 I could just about read and write and add up. I was acutely aware of the difference between me and my sister, who went to an ordinary school and got to do all the things that I wanted to do.

It was only when I went away to university that life began to turn into colour. I began to feel liberated because I started to learn. I learnt academically and I learnt socially.

It was hard because barriers to my participation were everywhere but at least I was present. I joined various uni-societies, as much as I physically could, and became an active member of the ‘Feminism Soc’.

I was a women’s rights activist long before a disability one. My Master’s degree dissertation focused on the suffragette Sylvia Pankhurst who organised working women’s suffrage campaigns.

If I could go back in time, she’s the woman I would want to be. I wanted a moment of liberation exactly like Sylvia Pankhurst had achieved. I wanted to be part of bringing about a legal watershed moment, just like she did. Little did I know then that this time would come.

Changing society 

Jane Campbell with friend posing for photo

An early lesson for me was that nothing would change without a mass movement to infiltrate every part of society and demand change. We came up with a saying in the disability movement – “nothing about us without us”. This means having a mandate to change society, so it would comply with the Social Model of Disability.

To do that, we needed to involve all disabled people in our movement, not just people in wheelchairs. who dominated at the beginning. That was quite a challenge because we had to deal with our own prejudices about other impairments.

I’ve always been struck by how collective the disability movement was and how mutually supportive we were when organising our campaigns. I think we did more than most civil rights groups to ensure that all of our activities were as accessible as they could be so everyone could join in.

Getting arrested 

I wasn’t afraid to test the law. I would be found in the middle of the street with my disabled brothers and sisters. People who used electric wheelchairs were very useful because the one thing about an electric chair is that you cannot lift one without putting out your back!

In the early days of the civil rights campaign, it was impossible to get arrested, try as we might. The police didn’t know whether to pat us on the head, give us a pound, or arrest us. They were so confused. They couldn’t get disabled people into their meat wagons, if they managed to get us to a police station, there were no accessible toilets or cells.Jane campbell taking part in a demonstration calling for rights for disabled people's rights

I remember police officers taking wheelchair users they had arrested across the road to an accessible toilet in a hotel and end up, buying them a coffee, and then letting them go.

Liberation 

All in all, my childhood of segregation, initiation into the Disability Movement and then the campaign for the DDA, was pretty much what made me the person I am today. I honestly wouldn’t have had it any other way.

The law itself and the campaign were just small parts of what came out of taking part in our liberation struggle. The experience enabled me to understand who I really was and what I wanted. One of those things was politics, which eventually led me to enter Parliament as a Crossbencher in the House of Lords. And the rest, as they say, is history.

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