“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.