Podcast: Social care with Frances Ryan

Transcript

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Cathy Lynch: Hello and welcome to The Disability Download. The Disability Download is brought to you by pan-disability charity Leonard Cheshire. I'm Cathy Lynch.

Erin O'Reilly: And I'm Erin O'Reilly and on this podcast, we respond to current topics, share stories and open up conversations about disability. 

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This month we’re giving you a very special episode of The Disability Download, we actually recorded this last summer and what it is, is a very special interview with award-winning journalist Frances Ryan. Cathy actually caught up with her last year, right before her recent book was published.

The book is called Crippled: austerity and the demonization of disabled people. We thought it was quite timely to share the interview with you especially given the recent news of the tragic story of Errol Graham who actually died of starvation after having his benefits cut by the DWP (Department for Work and Pensions) so that’s being investigated at the moment but Frances’ book really explores the impact of austerity over recent years and how it’s affecting disabled people.

Cathy: Yeah was a really interesting conversation actually, I think as well from reading the book, it is quite a difficult read in the sense that it is very emotional in at points, you know, I think it’s really important to note that it could that having your benefits cut could happen to anyone. It makes the figures, a reality that you see in the news every day. So yeah, give it a listen.

Cathy: Thanks for joining us Francis. Could you explain to our listeners what the book is about and why you wrote it?

Francis Ryan: Yeah, absolutely, thank you for having me. So yeah really the book came about from the fact that I've been working on disability and really the impact of government cuts on disabled people support for the last sort of seven years now, and it just really struck me that this is an issue that has just been building and building, as we've seen billions of pounds pulled from support that disabled people rely on by the way of social care or housing or benefits, and they've actually been covered a little bit in some really great books on for example austerity and it's been absolutely covered to a certain extent in newspapers.

It's never really been an issue that's I think really hit that sort of turning point, that critical moment where it's just really gained public attention, and I thought it was just a really crucial issue that needed to be looked at in detail, and that is really where I started, and Crippled became sort of a, I think my aim was to make excellent conversation about Britain's relationship with disability; how we treat disabled people, what attitudes to disabled people are in modern Britain and how that translates to the sort of policies that governments are able to bring in.

Cathy: So in your book, you focus on the austerity years and disability. You talk about the time before 2010; what was it like for you growing up, and what was it like pre-2010?

Francis: Yeah, I think that was a really important part of what I was trying to get across, that sense that society is sort of dependent on what governments are in, and what point of progress you're in as a society treat certain groups differently. So disabled people have been, you know, obviously campaigning through the decades to win really basic fundamental rights; whether that's their right to live at home independently rather than being in a care home, or the right to be employed or get on public transport.

When I was growing up in the 1990's, I thought that was really fortunate time to be born a disabled person because we've sort of had those key civil rights moments if you like, where disabled campaigners had been fighting for decades to get these basic rights and we had things like the Disability Discriminations Act come in, Disability Living Allowance the benefit that helps pay for the extra costs of disability had been introduced.

So it felt quite a positive time actually, to be a disabled person, and have opportunities that the previous generations hadn't, and I think that's why for a lot of people, the post-2010 era, so when these austerity steps first began to sort of dismantle this support, that was the really devastating part. It was the fact that people who fought these rights of people's equality, really it's not perfect but it got to a point where a lot of people felt actually we're the generation of disabled people that are able to enjoy much more opportunity and equality than we've ever had before.

But now due to this cost-cutting, we're seeing so many disabled people see these rights roll back in a way that we never really expected — I think that is the really crucial bit that those rights are not permanent. We're constantly having to fight for them if you like, and right now I think is a really crucial time for disabled people in Britain, because we're very much having these rights feel like they're underset again.

Cathy: Something that struck me from reading the first pages of the book, you say that you've outlined this is a national scandal — do you think that when we look back at this point in history we're going to be ashamed; do you think the government should be held accountable?

Francis: I think there is a real problem when it comes to pointing out problems and then ministers being held accountable and changing them. I think that's one of the crucial issues of why things have been so incredibly difficult for disabled people, it's that the policies have been brought in, in the first place that are damaging.

So, for example, it is quite predictable, but when you tighten eligibility for disability benefits for example that will result in a lot of people who desperately need these benefits no longer having it. If you bring in you know 6 billion pounds worth of cuts in social care that's going to quite obviously result in disabled people not being able to get dressed or washed in the morning. That was quite obvious, and yet the policies are brought in regardless.

When we see, as we have done, MP enquiries, charities, disabled-led organizations doing this research which shows very clearly the devastating impact of these policies that still 99 times out of a 100 Ministers do absolutely nothing about it. I think that's the devastating bit for a lot of people that actually everyone is really aware increasingly of what's happening.

I hope the book is a record of what's happening but we need to reach a point where it's not just about saying ‘this is happening’, it's about saying actually we need to reach a point where Ministers are pressured to actually do something about it.

Cathy: Do you discuss in the book what we as a society can do to improve and how we can tackle these issues?

Francis: Yes, absolutely. It was really important to me with the book to have that sort of sense of what we can do, to make things better. I think disabled people and non-disabled people I think now in Britain with politics can feel quite intense, quite hopeless even; there's so much going on, isn't there?

Whether it's Brexit, austerity or the rise of the far right, there's so many issues that make you feel this is this is a really difficult time for lot of people and you need to not sanitize what's happening at the same time you need a sense of hope, and a sense that actually things don't have to be this way if you do things differently the lives of disabled people can be so much better than they are for a lot of people now.

So like you say towards end of the book I talk about just sort of common sense things society can do to make to make life better for disabled people. So for example, I talk about the importance of representation — I really think that even though they seem not related, something like how many disabled people you have in positions of power like in Parliament, in the media, or just the people that you see whether or not you go to school with a disabled person, whether you see them in the workplace.

That level of exclusion versus representation and inclusion I think is really important because if you live in a society where you don't really see disabled people in everyday life it becomes really easy to get these cultural myths around us that we're not like normal people, that we don't have the same interests and needs and wants and dreams and those cultural attitudes make it really easy to bring in measures like cuts to social care that you just wouldn't do for other people.

If you believe that a disabled person doesn't go to the pub, does not have relationships and doesn't want a career then it becomes really easy to cut their personal assistance, so they have to stay in the house 24/7. I think for me stuff like representation is really important. I think we really connect, I think that is a really big issue we need to talk about the fact that, for a lot of people, they still don't really come across disabled people in every day life, or at least they don't think they have, they're not aware of it, there's still a real sort of awkwardness, a lack of interaction with disabled people in Britain I think all about really ties into the way that we see disabled people treated in everyday life.

Cathy: Do you think the discussion of disability issues is shifting and changing in the media?

Francis: I think that we've had, over the last decade, we've had I think a lot of the same people that I speak to have become quite fearful actually of some of the coverage that they've received and there's been research that shows this — the negative portrayal of disabled people has increased in the press post-2010.

You know things like referring to people who are too sick to work as 'work shy' or 'scroungers', and lots of research has shown that's increased, and research has shown that things like disability hate crime — people you are talking about in the public in the first place, it shouldn't be a case of non-disabled people talking about disabled people constantly. Disabled people should be the front and center of our own reporting.

Cathy: Reading the stories in the book, were there any stories that you were surprised by, or on a scale that you didn't imagine?

Francis: Yeah I think I think going into it I was aware of the scale of the issue because I've been reading the research for a good five years at that point, and I was just talking to people, the amount of emails and messages that I get from disabled people I think I got the impression that this was not a handful of cases. You know this is hundreds of thousands if not millions of people who are being affected by issues like disability benefit cuts and social care cuts.

But at the same time, I think hopefully that's what the book gets across. Sometimes those sort of reports can seem quite cold and abstract. You know if you read Leonard Cheshire did research talking about there's one million disabled people without the social care they need in Britain. That figure sounds horrendous but actually when you talk to people who actually directly experience it that you that you really get an impression of just what that means to people on a day to day basis.

I spoke to one woman called Rachel who is a wheelchair user. She was living independently in a bungalow in the New Forest and she was doing that with the help of a team of personal assistants. Over 2012 to 2016, she lost the person helped her get dressed in the morning, the person that help cook her meals, the person that cleaned her bungalow, the person that helped her get to bed at night. It was just cut cut cut, and in the end she has no social care at all, and that struck me despite knowing how great this is for a lot of people. The idea that a wheelchair user could be left as she was which was malnourished because she had no one to cook the meals anymore, and on her bad days she slept in her wheelchair, she told me because she did not the energy to lift herself back into bed, and the person used to help her from the council has been cut and that, absolutely, those types of stories I think, are just absolutely devastating even if you know how bad it is.

I think it's all just it makes me feel it's reached a point for a lot of people where things are happening that you don't think you ever imagine would actually happen in a well-funded, wealthy nation and I think you should be shocked by that — I should be shocked by that — the reader I hope in a positive way shocked by it, because unless we talk about it, unless we sort of say to each other this is completely inhumane what can we do about that, then these things don't change, do they?

Cathy: Another point that we found from the book was your take on the benevolent othering of disabled people and what you had to say about the phrase ‘most vulnerable people’; could you explain to our listeners what the issue is?

Francis: I think this was in a really interesting thing for me. I think you hear this idiom that we will always, as a country, protect the most vulnerable, and when you say vulnerable generally people mean disabled people is sort of the code word they're using. I think the sentiment behind it is is it positive, isn't it? The idea that as a society we should take care of people we should support people who are most in need of support, who can't necessarily live their life safely and comfortably without support from other people.

But I think actually when you break it down the idea of disabled people being inherently vulnerable is is part of the problem; I think for one it perpetuates the idea that disabled people are sort of inherently different — that we are fragile — that we are weak — that we are childlike, when actually, absolutely, many of us need support in a way that other people don't. But I don't feel vulnerable on a day to day basis. I'm just a normal person who needs support to do things.

The idea that we are vulnerable I think perpetuates that sense as you say that 'othering', I think on a second level it suggests that disabled people are vulnerable because we're disabled but actually the only reason that we're vulnerable or we become vulnerable is when the support that we need to live a safe and dignified life is removed from us. 

To talk about Rachael with the social care — she is absolutely vulnerable now because she is malnourished because no one is helping her cook meals. She is vulnerable because she can't go to bed at night and sleep. She wasn't vulnerable before. She's not vulnerable because she's a wheelchair user. She's vulnerable because society has chosen to remove her social care from her.

I think that's the really important bit for me to talk about, that disability is not inherently tragic and miserable and negative. We can live amazing lives but we need sometimes that support in order to do that, and that's the issue — if society gives us the adequate support our lives are nothing like a life of tragedy and vulnerability.

Cathy: After writing this book and looking forward, where do you think we'll be in ten years time?

Francis: Well there's a question...! I think British politics is in a position, where we could make predictions but I think they would easily be completely transformed in a matter of months. I think this feels a bit for a lot of people whether you are disabled or not that Britain is in a bit of a turning point, I think. I say at the end of the book that it feels a bit like 'decision time' for society of what we want to do, what we want to be like, how we want to treat people like disabled people and other marginalized groups like migrants — are we going to be a society that turns in on ourselves and becomes mean spirited, are we going to be a society that actually funds our public services properly again. These sort of questions I think have never been more vital to address.

I think we're at a point where we've had this decade of extreme cost-cutting that has really gutted these services that a lot of us have relied on for years. Obviously the change of Brexit is going to be transformative for society again, for services disabled people rely on. I think it's very much a turning point of 'we can do better than this'. We can we can stop the rollback of disability rights, we can reinvigorate the welfare state, or we can continue down this path. There's only going to further reduce the rights and opportunities of disabled people. I think it's a turning point and I really hope these sort of conversations help us to transform this situation into something better - we have that potential, it does not to be like this. We just need to get there.

Cathy: What are the main things journalists and charities and other organizations in the disability sector do you think should do in the meantime?

Francis: I think that I think the number of disabled organizations and also charities are doing incredible work. I think it's easy when you look at the scale of these problems to fear as I say quite downhearted about it, and scared of what happening. I think it's really important to look at the incredible campaigns that were already happening, in the book I talk a lot about the things disabled campaigners are doing for example.

Organizations like disabled people against cuts, that they're working in protesting and highlighting the way that the closure of the Independent Living Fund and the impact that that had on and continues to have on disabled people. If we look at parents of disabled children who are currently campaigning to stop closures of respite centers that their children rely on and or specialist teacher assistance to help them and have their children in mainstream education — those campaigns and their battles are being fought and won in some cases all over the country as we speak. I think that's the really crucial bit isn't it — is to look in your local community to what the issues are and what we can do to try and help us maintain these little threads of support.

I think that that there's some incredible work that we just need to highlight some more maybe — they don't necessarily didn't get the good stuff and the passion and their campaigns don't necessarily get the front pages like a devastating story would do, but social media, for example, I think it's a great way for a lot of disabled people to connect with one another who are not only going through these difficulties but also to look at these campaigns that you can get involved in whether it's education or social care or benefits or access to venues the same opportunity particularly online to get involved in your local networks on the national networks.

It gives me hope, for sure, to see the way that disabled people can work together and get really a better result, it's a cliche but we do a lot better when we're all fighting together than just by ourselves, and I think that gives a sense of hope and solidarity for what can be stopped, and what can be changed if you work together in that way.

Cathy: So now your book is done. What's next for you?

Francis: A big sleep! I do love a nap! It's strange, it's about two years I think I've been working on that, so that's a long time. I think it's it's going to be a case of hoping that this these sort of stories that are covered in this book gets as much attention as we can, I really hope that the stories that people have so generously and really courageously told me in intimate detail in these books get the sort of reception that I hope these issues can finally get.

To me going forward, continue to working with The Guardian and the great team there, people like Patrick Butler, who do incredible work in highlighting what is happening to disabled people, I think there are so many issues that you just can't not cover. I think issues like social care is going to be just an incredible issue over the next couple of years increasingly.

Just today, I read an article that told me that people who are over the age of 65, the proposal was that they would get their personal care for free and not once in the news article did it mention that disabled people exist, let alone that disabled people under the age of 65. For me personally just as social care continues to be debated and finally we get the the paper from the government hopefully to just continually bang the drum that social care actually is relied on by disabled people as well as older people and how we can make disabled people get the support we need as well as older people, that will be for me personally one really important issue over the next year.

Cathy: Fantastic. Thank you so much Francis.

Erin: So that was a really interesting chat there with Francis and covering obviously essential topics which I'd say are very timely in the current landscape, so Francis’ book is available to buy from all good bookshops and available on Amazon as well. As always, we’ll put relevant links in our show notes so check that out if you’re interested in giving it a read.

Cathy: And we’d love to know what you think of The Disability Download, email us at disabilitydownload@leonardcheshire.org and please remember to like, and subscribe.

Cathy: I’m Cathy.

Erin: and I'm Erin.

Both: And this has been The Disability Download.

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