Paul Carter and Ian Macrae are joined by Mike Smith, chief executive of Real, Sarah Ismail of blog Same Difference, and accessible kitchen designer Adam Thomas to discuss the month’s pressing disability matters.
The Download 29
Presented by Paul Carter and Ian Macrae
[Jingle: This is The Download from Disability Now!]
PAUL Hello I’m Paul Carter. And joining me for this edition of The Download is Ian Macrae.
IAN Matters of life and death; what’s the impact on disabled people likely to be of the latest attempt to change the law on assisted suicide.
PAUL Toy Story: we hear about the successful campaign to make dolls that reflect impairments.
IAN And five more years; what hopes and fears are there for disabled people under a Tory majority government?
PAUL Our voice, our lives on The Download. Time to welcome the three guests who join us today. Mike Smith is former disability commissioner with the Quality and Human Rights Commission who is now chief executive of a local action group based in East London called Real. Hello Mike.
PAUL Mike, tell us a little bit briefly about what Real is.
MIKE So Real is a user-led organisation of disabled people based on the model for centres for independent living around the country. We’re based in the London borough of Tower Hamlets, and we’re lucky that we’ve done reasonably well in the last five years, we’ve kind of doubled in size by getting new contracts and we now reach out and support about 1,000 people a year.
IAN Sarah Ismail runs the disability blog Same Difference. So, Sarah, what’s big on your blog just now?
SARAH What’s big just now? It’s benefit cuts and back to work assessments and the madness of assessing people that are never going to improve. That’s a bigger waste of time and money than basically keeping benefits as they used to be.
PAUL And finally, but not least in any way, Adam Thomas is a kitchen designer with a particular skill in designing access solutions for disabled people. He runs his own company ‘Design Matters’. Hello, Adam.
PAUL How’s business in these austere times?
ADAM On the accessible side it’s very, very good. So we have a constant flow of disabled people, new disabled people, coming through our doors which is always good. So yes our business is booming.
PAUL Welcome to all of you. We kick off today with the ever controversial topic of assisted suicide, or as some people continue to prefer to call it, euthanasia.
IAN The latest attempt to change the law in this area ran out of time in the House of Lords following the calling of the recent general election. Lord Falconer’s bill sought to make it legal for someone to assist a terminally ill person to end their life provided a number of safeguards were in place and these included the signatures of two doctors.
PAUL Lord Falconer has earned the right to bring his bill back to the Lords later in the year. But more immediately the Labour MP for Wolverhampton South West, Rob Marris, is also bringing a bill to the Commons which will be introduced at the end of June and debated for the first time in September.
IAN Two questions arise. First, why is there such apparent determination among a number of parliamentarians to change the law which currently makes it illegal to help someone to kill themselves? And second, why do some disabled activists see this attempt as such a threat?
PAUL Adam, what’s your view on this political hot potato, so to speak?
ADAM I think the law should stay the way it is. It’s worked for centuries and I don’t see the need for it to change. I have a lot of concerns from disabled people’s perspective that if the law is changed how that is going to affect the way disabled people are perceived, how disabled people are going to think of themselves, how they’re going to value themselves.
IAN Sarah, tell us about your concerns here.
SARAH I agree with everything that Adam just said and I want to say that we’re more worried about the value that it means society places on us. So for a non-disabled person if it’s illegal to kill a non-disabled person but it’s not illegal to kill disabled people so we feel that that gives our lives less value than the lives of a non-disabled person. And we’ve fought all our lives to prove that’s not true.
MIKE I just wish they’d give up trying. How many times do we have to sit outside Parliament with our placards saying the law works give it a break. There are so many problems with potential changes in legislation. The so-called safeguards just don’t work. We’ve seen that in Oregon in 2013 62% of people who were surveyed said they felt like they were a burden on society or on their families. And that’s one of the reasons why they wanted to go for assisted suicide. Look at the cuts we’ve got going on everywhere, the withdrawal of social care support – of course people are going to feel they’re a burden on their family if they feel they’ve got no meaningful life or choice. There are so many problems with assessing whether somebody really does have six months to live or not. The Royal College of Physicians have said it’s almost impossible over two weeks. It’s a law that won’t work. And the problem is that it doesn’t even need changing because decent palliative care is available now so that no-one who can’t control themselves need suffer in any meaningful way.
I guess my fundamental point is you know read the UN Convention on Human Rights – there is a right to life, there is no right to death. And it’s not giving the right to death anyway, we’re all going to die. It’s a right to ask someone else to kill you. I just don’t see why anyone needs that right.
PAUL And it seems like we’re discussing this over and over again as you mention, do you think there’s an element of a war of attrition going on here?
MIKE Sure. And there are some very wealthy backers trying to propose a change in the law. I was reading a blog on this recently and someone was saying it’s going to be fine for wealthy middleclass people to go and get injections, a Bupa hospital with a glass of champagne and strawberries. But what about regular people in NHS hospitals where there’s going to be real pressure on resources, is there going to be meaningful time to have those honest conversations about is this a choice that that person genuinely and really wants. I just think stop going on about it.
We live in a society where people have more rights to choice on all kinds of things everywhere. But a right to choice should be predicated on the safety of the wider population, and I just don’t see how one individual’s right to choose for someone else to kill them can be any more compelling than someone else’s right to be free from coercion to end their life early.
SARAH I have fought all my life to prove that I wanted to have the choice to live and I feel really upset that people want to have the choice to die. I wish that they could be encouraged to live their lives, to see disability in a positive way even if they become disabled later in life. Because people that do become disabled later in life have lived with this thought that disability always has to be negative and painful and suffer, suffer, suffer and I just hate that because it doesn’t have to be that way. If you find things that you can do in spite of your limits and challenges and do them well you can have a fantastic life even with disability.
IAN But what about people, Adam, who they do feel that their lives are intolerable?
ADAM We have assisted suicide now anyway. It does happen. But the law at present says that you must not do that for all the reasons we’ve just mentioned. But the Crown Prosecution if it does become apparent that somebody has aided somebody else to die the Crown Prosecution will look at that. And if the Crown Prosecution decides well this person wasn’t coerced or they weren’t pushed into doing it then no-one is ever prosecuted for that. So the existing law works well. So if somebody really does want help doing it and they can find a friend of a family member to help them then it happens now, not on a regular basis, but it does happen.
IAN Very interesting you’re agreeing with Lord Falconer on that point actually because he says precisely that as an argument for changing the law that it is going on and the CPS just ignore it and let it go.
ADAM Well no they don’t ignore it, they look into the cases and decide that on ((passionate – 0:08:48.5?)) grounds that they’re not going to prosecute.
MIKE And that decision not to prosecute is based on the public interest ((0:08:57.3?))
MIKE So the existing law and the existing guidelines work well. And I would argue, and again this is pretty controversial, but the majority of people would have the capacity to end their own life at some point if they were really worried about the future. Even if you’re a tetraplegic and you’ve got an electric wheelchair with chin control there are still plenty of cliffs around if it was that important to you. I realise it’s stupid but people do have those choices. What they want is someone else to do the dirty work for them…
MIKE …right at the very end of their life. And if it’s so important to you that you don’t get to that stage of your life, yes I do think people do have choices at earlier stages. I don’t see why anyone has the right to demand someone else, either a loved one or a doctor – which would fundamentally change the relationship between patients and doctors – to say do my dirty work for me.
PAUL One of the things that’s always struck me around this argument is that it always seems to be a disparity in the voices concerned in this argument. Mike mentioned the wealthy backers and everything before and it is quite often that the pro-assisted suicide lobby seem to shout a lot louder than the anti-assisted suicide lobby; is that something that you’ve seen? Are dignity and dying more heard than groups like Not Dead Yet, for example do you think?
ADAM Yes because there’s lack of funding. So obviously any campaign, whatever it is, if you’ve got a lot of money then you can make a lot of noise. And that goes through all areas of politics and campaigning.
IAN But to put this to you, Sarah, in the House of Lords now as well as Lord Falconer and his supporters we have the loud and powerful voices of people like Baroness Tanni Grey-Thompson, Baroness Jane Campbell, Lord Low, who I know, they’re all people who speak out against this. Do you think the balance has in some sense been restored?
SARAH I think there’s more support from the mainstream and when I say main–…I mean people without disability. There is more support from them for the other side of the argument. So they would be more likely to give air space and radio space and everything else to the side of the argument that they will agree with. And a lot of them have not heard our views as disabled people that are against assisted suicide. I was speaking to someone who said they’d never heard my view being disabled and being against it because they’ve been always more likely to listen to the disabled people and otherwise who are for. And that’s worrying.
ADAM And a lot of it is non-disabled people putting themselves or trying to imagine what it would be like to be disabled. And this is one of my points that I’ve made time and time again is that if we’d had living wills when I had my accident I’d be dead, I’d have been dead 30 years ago. If you’d have said to me before my accident could you live with being paralysed from high chest down having no control over bladder and bowels, not being able to walk and many of the other things. Not being able to walk on a beach, play sport again which I did a lot of, I’d had said, “No, switch me off.” And I could have been, well I was in a situation after my accident that that could have happened. And if living wills had been around I wouldn’t be here now. And I’ve had the most incredible life. And so this is the thing you just don’t know until you’re actually in the situation.
IAN The two things that people say they fear most about this are the question of decision making – who gets to make the call when it’s time. And people are afraid that a) doctors will do it; or b) other family members will say yes. Is that a real kind of threat now? Surely we’re no longer in the days are we of people having DNR, do not resuscitate, written on their medical notes?
ADAM People still do have DNR. I had a friend – I was going to mention a name but I shouldn’t do – but yeah I know somebody who’s had a DNR put on them about four or five times in their life. And that again is a non-disabled person making a judgement on the quality of that person’s life, which is wrong. And again if we have this legislation just think of the way it could be abused. We could have a system where you go to a doctor and say, “I want to kill myself.” First doctor says, “No” you’re going to go on a shopping list almost. You’re going to go down the line of other doctors until you find a doctor that will say, “Yes I am prepared to kill you.”
MIKE That’s what’s happened in The Netherlands and in Oregon where the number of doctors that are agreeing to do it have got smaller and smaller and therefore it’s now just doctors that are super suicide doctors. But I think what’s really pernicious, Ian, picking up on your point is the hypocrisy in the debate that goes on from the pro-assisted suicide types, they say it’s not about disability, but it fundamentally is because all life limiting conditions create disability whether you’re using a medical model or a social model perspective.
And the underlying hypocrisy is really amplified when if you said that anyone with a mental health condition or depression wanted suicide then everything in the system would be saying, “Well of course we should be supporting this person to live.” But as soon as it’s some other kind of disability or life limiting condition people go, “Oh of course I can understand that.” Therein lies the argument that just shows that this is not about giving individual choice this is about recognising that as a society collectively we fear those conditions.
PAUL Well it’s certainly a debate which will run and run and not just in the precincts of the Palace of Westminster. If you have anything to contribute to Disability Now we’d be interested to hear from you.
[Jingle: The Download with Paul Carter and Ian Macrae.]
IAN Now we get to celebrate a campaign which not only built quite a profile for itself on social media but also achieved what it set out to do – hooray.
PAUL The ‘Toy Like Me’ campaign was started by a small group of disabled mums who realised that their children, whether disabled or not, were unlikely to see disability represented in any of the dolls or figures they played with.
IAN For a long time now there have been dolls reflect ethnic diversity but, not unusually, disability failed to make it on to the toymaker’s agenda.
PAUL Rebecca Atkinson was one of the mums involved in starting and running the campaign and she told Ian where the impetus for it came from.
REBECCA I’ve got two children of my own, five and six, and I obviously am partially sighted and partially deaf myself and we’ve got a house that’s full of toys, and it just suddenly occurred to me one day that none of them had any disabilities, and there was absolutely no disability representation in any of the toys that we had in our house. But also in any of the shops. I started to look around and search online and see if there were toys with disabilities out there and there was virtually nothing. So it suddenly sort of occurred to me that this wasn’t okay. So I spoke to a couple of friends of mine who have got children with disabilities themselves and they agreed that it was not on. And so that was really sort of how the campaign was born. So we set up a Facebook page and a Twitter account and we started to slowly generate interest around the issue from there.
IAN What kind of interest did you get from other disabled people and parents in particular?
REBECCA It tended to be parents of children with disabilities but also lots of adults with disabilities themselves. It’s been overwhelmingly positive. So in the very beginning we started the Facebook page and we posted images of toys that positively reflected disability. And there was about three: there was an American girl with a hearing aid, and I think there was a Moxie doll with alopecia and that was about it. So then we realised actually this campaign’s not going to get very far if we have only got two photos to post. So we started to makeover our own toys to give them disabilities. And once we started doing that and sending those out the whole thing went viral.
And there was an image of a Disney Tinkerbell doll which I made a pink cochlear implant and put that on and then we photographed her and sent that image out. And it was like a match to a firework factory, it just went bang and people were just forwarding it and sharing it and commenting on it. And overwhelmingly the response was very positive and it resonated with people. It’s like, “Oh yeah I never thought about that. But yeah you’re right there aren’t any disabled characters.” But also for adults who have disabilities themselves they understand how powerful those images are for children because they’ve been children with disabilities themselves. And they know how they would have felt had they seen that image as a child. So that, I think, propels them to share the image and just pass it on and say, “Hey have you seen this?” to their network on social media.
IAN And what about toy manufacturers what was the response from some of the big players?
REBECCA I approached a London based 3D printing doll company who very quickly responded by starting to create a range of disability accessories for their existing range of dolls. So that company’s called Makie and they have a business model where you go online and you design your own character; you choose the hair colour, the eye colour, the mouth shape, the nose shape and then they 3D print it. And in response to Toy Like Me you can now buy hearing aids for their dolls, you can buy a white cane, you can have a bespoke birthmark if you want to. They’re extending their range at the moment to include diabetic lines, wheelchairs – they’ve had a massive response globally with a lot of people worldwide very excited by their products.
And then of the global brand Playmobil who we launched the petition to try to persuade them to start producing characters with disabilities in their ranges, they have agreed to work with us and they are currently working on a series of characters that will have disabilities and also looking at how to include disability representation throughout their play sets in the future.
PAUL Adam, you’re a parent, what’s your view on this having disabled toys and figures for kids?
ADAM One of the many thoughts I had about when I was sort of deciding on the pros and cons of having a child was how would that child react to me and would it be harder for my child in the school playground etc, etc. And having spoken to many disabled parents I quickly quashed allthose thoughts. But it is interesting when I think back to my childhood there was nothing like this at all. Whereas now my daughter’s got a Barbie that’s in a wheelchair, or is a wheelchair user I should say. And there are many, many books on the subject as well. And even the school that my daughter goes to are very proactive in disability rights, and regularly my daughter is coming home talking about… I mean they had a wheelchair company come in the other day and actually got the kids trying out wheelchairs and playing sport in the playground in chairs. Things have moved on incredibly.
PAUL Wheelchair Barbie a thing that’s cool.
ADAM Yeah it’s not a very cool wheelchair, it’s certainly not a new generation chair it looks like, I shouldn’t mention the name, but it looks like one from the 1950s. But it is a wheelchair.
SARAH I mean this wheelchair using friend of Barbie’s that Adam was just talking about came out when I was 14. And I bought one anyway, I was a bit old for it but I bought one anyway because I just thought it was a fantastic idea and I was glad it was around for younger children, because if children can spot themselves in the toy shop they can realise from a very young age that there’s nothing wrong with being disabled, that they’re not unusual. They are different but their difference is recognised in all areas of life.
PAUL So it encourages confidence I guess you’re saying.
SARAH Definitely. And for non-disabled children as well to learn from it, to have empathy towards any disabled children that might show up in their class and grow up and be sensitive if they meet a disabled person in real life, in school or otherwise. Because children that are taught about difference from an early age grow up with empathy and sensitivity.
PAUL Alright, whilst we’re talking toys let’s have a quick sweep around – what was your favourite toy as a kid, Adam? It doesn’t have to be disabled related.
ADAM Can I use names?
PAUL Yeah go for it.
ADAM Probably Lego. And I had a lot of sports equipment.
MIKE Yeah I’m afraid I was Lego as well, I was really good at building houses.
PAUL So we’ve got technically minded engineering type people here. Sarah, what was yours?
SARAH It was the Share a Smile Becky which was Barbie’s friend in a wheelchair.
PAUL Good choice. Ian, go on. Did they have toys when you were a kid?
IAN They did. But my parents were both blind and actually you’d think they’d kind of know what to buy you. My parents bought me Meccano, Does anyone remember Meccano? A load of kind of metal strips and little screws and little bolts and little nuts and you’d set out to build a model of the high level bridge or something in Newcastle. But hopeless, I was hopeless at it. What about you?
PAUL Well mine was one I never actually had, I always wanted a Mr Frostie and I never got one.
IAN What’s a Mr Frostie?
PAUL You used to put ice into this snowman, churn it up and then add flavours and it made drinks. And it always looked the coolest thing and every Christmas I wanted one and I never got one. Sad times! Now from the joys of childish play to something much more serious.
IAN Prime Minister David Cameron has once again been speaking about the government’s intentions on further reform of social security. And in keeping with their line as part of the recent coalition the emphasis seems to be very much on getting people into work, making work pay as well as tackling what they see as the iniquity of benefit fraud.
PAUL Meanwhile for disabled people the worries and concerns for the future are pretty much the same too. Amid talk of protecting the most vulnerable no-one from government has yet properly identified where the alleged £12bn in cuts identified by George Osborn ahead of the election will actually come from and what they will target. But the economic think tank, The Institute for Fiscal Studies, contends that such cuts will have to rely on doing something to disability benefits if they are to be achieved.
IAN So the question for our guests is: what lies ahead as we approach 2020? Somebody’s made the point to me, Mike, that the government never actually expected to win the election therefore they didn’t expect to have to implement the £12bn of cuts, which of course they now will have to implement. Does that fill you with hope?
MIKE I think it’s dread rather than hope isn’t it? I guess that point is a ((0:24:49.7?)) one because governments change their minds all the time so I don’t think they’re absolutely compelled to implement those cuts. But I fear that they will because they’re ideologically focused on a smaller state. And I guess what worries me about the debate most is the focus is on getting people into work and supporting people into work is great and it sounds like the right thing to do.
What sort of undermines it is changes and cuts to the Access to Work system, changes and cuts to social work, the social care support that allows people to get in and out of bed and do the other stuff they need to do to fit in around a work life. And just the general lack of recognition that most of the disadvantaged disabled people face and the prejudice they experience in getting into work in the first place is from those wider societal attitudes. And none of the government campaigns or rhetoric at the moment seems to address those other barriers, it’s all about focusing on the individual and not about the wider society.
PAUL Adam, I saw a speech by David Cameron yesterday where he pledged to protect the most vulnerable, as is the phrase, but also that those least able to work would be protected. Now as a disabled person who does work how does that leave you, how do you feel about that?
ADAM I’ve been in this game for too long to be honest. You hear these sort of statements and they just ring hollow. I’ve seen disabled people hammered and hammered and hammered so many times over the years since I was campaigning and chaining myself to a bus in the early mid-90s. One of the things that I found so sad is I went to Jack Ashley’s memorial service and as I listened to all these amazing people talking about all the things that he’d achieved over his lifetime, and I was thinking well we’re already going to see within five years of his death all this being unravelled and a lot of the things that he’d managed to achieve in his lifetime, with a lot of other people obviously, is all unravelling now. And I find that very, very sad and depressing. And I think disabled people should be very, very worried.
PAUL Sarah, as a disabled person how do you feel about going into the next five years of this parliament?
SARAH There’s a lot of fears among my readers and friends and I share it because I hear it every day and write it and read it every day. And there’s one question that I’ve got if they’re protecting the most vulnerable then why was there recently a case of a man who can’t walk, talk, feed himself being called for a fitness to work assessment, to a job centre? Assessing him is more of a waste of time and money than letting him keep the benefits that he obviously needs and obviously deserves.
IAN Mike, one of the options that the IFS, the Institute for Fiscal Studies, postulated was that the government could use the transition from disability living allowance to personal independence payments to thin out the numbers of recipients who actually qualify for PIP. Do you think that that is a likely scenario. Does that look like a likely scenario to you?
MIKE Well it’s already happening isn’t it? You can see people having the rates of benefit that they get dropped for no obvious reasons. It’s really important to remember that a name change was actually just a disguise for getting more people off the benefit. The whole point about disability living allowance was to address the additional cost that people incur through being disabled. It was nothing to do with your income or your life circumstances, it was just recognising disabled people with a whole variety of different impairment types have higher costs. And it was trying to create some kind of equality in society. And it was a really principal benefit.
And because disabled people’s organisations were successful in helping people understand what rights and entitlements there were, and in particularly because it was expanding beyond more conventional impairments types like physical disabilities, the costs were going up. But that wasn’t because it was fraudulently claimed or anything it was because under the rules that were set out people were getting what they deserved at that point in time.
IAN One thing I’m slightly puzzled about is this question of the government’s apparent mealy-mouthness [sic], if there’s such a word, over this £12bn cuts. Do you think any of you that that’s because they actually haven’t decided how the cuts are going to happen? Or because it’s going to be the sort of bad news that they don’t want to divulge yet?
MIKE All of the above. If you look at my local authority or any others the holes they face in their budgets now are already huge. Social care will get cut more. People were left on mere subsistence levels of support that gets them in and out of bed and little more after the closure of the ILA. And the government don’t want to say where the cuts will come because the cuts are so significant. This morning I think I was reading an article that it’s thought that most local authorities are going to have to sell all their parks to private companies because they won’t be able to afford to maintain them. That kind of, you know everyone’s going, “Oh my God you can’t close the parks” but it’s okay to leave someone sitting in a pile of their own pee all day because they can’t go to the toilet on their own.
And I think the cuts are going to be really, really draconian. I think as disabled people we’re going to have to be really smart about how we go about this. We’re going to have to use social media and wider media much more effectively in gaining a groundswell of support and spreading the word. We’re going to have to help the number of people understand just how many people will be affected and involved. And we’re going to have to use creative new tools for combating what will happen. The UN Convention on the Rights of Persons with Disabilities they’ll be doing their review in the next year; and it’s potentially the first country to have been properly criticised for failing to comply with the UN Convention, certainly the first westernised society. I believe they’ll be a review in Parliament on the effectiveness of the Equality and Human Rights Commission since the Disability Rights Commission was abandoned, and how maybe little progress it’s been able to make on disability rights issues. We’re going to have to just be really creative about how we find new battle lines to fight the battles.
PAUL Well it’s certainly an issue that we’ll undoubtedly be coming back to again and again on The Download.
That’s it for another edition of The Download.
IAN We just need to say thanks to our guests: Adam Thomas, Sarah Ismail and Mike Smith.
PAUL Thanks also to David Darlington for technical and recording support; and production was by my esteemed co-presenter. Until the next time from Ian and me it’s goodbye.
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