Please note transcripts are automatically generated so may feature errors
[00:00:00] Rebekah Widdowfield: Hello, and welcome to the RSE Tea and Talk podcast series, a programme inspired by the coffee houses of the 18th century, where great thinkers would come together to discuss ideas and matters of the day. I’m Rebekah Widdowfield and I’m Chief Executive of the Royal Society of Edinburgh, which is Scotland’s National Academy.
Our mission is to advance learning and make knowledge useful. And to do that we are holding conversations with some of our Fellows and other leading experts in Scotland to talk about important issues and the challenges that we face as a society. You can find out more about our work on our website at RSE.org.uk or follow us @RoyalSocEd.
Today, I’m speaking with RSE Fellow Professor, Nick Watson, Chair of Disability Research and Director of Center for Disability Research at the University of Glasgow and Theresa Sheera group, Chief Executive of Enable Scotland, Vice Convener of the Scottish Council for Voluntary Organizations and a Trustee of Inclusion Europe, as well as both being members of the RSE’s post COVID futures, commission, inclusive public service working group.
Both Nick and Theresa have a longstanding commitment and passion to improve the lives of disabled people and ensuring their voices are heard. So who better to speak to us today on disability and inequality,
Theresa, perhaps you could kick off by telling us a little bit about Enable and its model of support for people with learning disabilities.
[00:01:32] Theresa Shearer: Hi, Rebekah, thank you for having me here this morning. So the Enable group consists of three distinct charities. We have Enable Scotland, which has the initial part as a charity founded by parents and family carers, and that continues to campaign and advocate for people with learning disabilities.
Over its 67 year history Enable Scotland has changed quite a bit and we now have two very distinct and quite substantial and impactful parts of the charity Enable All which is our health and social care support services. And Enable Works which supports people with disabilities into education, employment, and training. The part I think you’re most interested in it. You’ve asked there, is Enable All which is our health and social care arm that works on a model of human rights based, self directed, fully inclusive service provision for people who perhaps require some additional health and care supports throughout your life primarily people with learning disabilities, but not exclusively and our model is very much based on the principles of choice and control.
And I do think that’s it’s fairly easy to see that Rebekah, I think what we have now is a track record. And some really strong data of delivering human rights based support in the most complex and difficult circumstances, not least throughout the past 18 months and indeed the pandemic itself.
[00:03:01] Rebekah Widdowfield: And can you just say a little bit more about the sort of human rights sort of model of care and why is that so important? And what difference does that make to people’s lives?
[00:03:10] Theresa Shearer: I think if look at social policy linked to health and social care support over the years, Rebekah, what we have seen as lots of policy changes that talk about human rights, it’s about people having choice and control about moving the people from hospitals into communities.
And the real focus here was about the move from institutionalization. But actually what we saw your house can be institution, your immunity can be an institution. If you do not have equity of support to access those assets of your community. And if you don’t have the choice and control to live, the life you choose.
And one of the things that I’m very passionate about is independent living. The idea, that people with learning disabilities, and indeed all citizens should have the right to live independently. In the community of their choice in the way that they choose. And, and you do see that, that, that that’s obviously a human rights based issue, but it’s also just very much a citizens based issue.
If we want a fairer more prosperous or more equal Scotland, then it has to start at the heart of how we treat those people who potentially have not been given access to that equity of access in the past, so it’s the. It’s a ‘raison d’etre’ it’s the purpose of our charity and we don’t have any model support other than a short space model of support.
It’s not something you can pick and choose. It’s an our DNA. And we’re very passionate about that as hopefully you were here throughout the podcast study.
[00:04:48] Rebekah Widdowfield: And that certainly being one of the strands that the inclusive public service working group with the commission had been looking. Recognising that, you know, some really good examples, I think now in Scotland of that type of model of care, but still quite a long way to go to make sure not just the level of care, but that sort of approach to public service.
Is is the default rather than an exception.
[00:05:09] Theresa Shearer: I absolutely, I did a podcast yesterday with another think tank and we were talking about trying to avoid exceptionalism when we talk about Scotland, in health and social care. I understand that, however I do look at where we are in Scotland and how far we’ve traveled and I think is quite exceptional.
I think we are. In my judgment and a much better place than other parts of the UK. And certainly from my experience as a trustee of inclusion Europe in a much better place than many of the other organizations and people that I work with across the European union. So I think there’s much to be celebrated for where we are in Scotland with a human rights based approach.
In the care and in public services, but you’re absolutely right. We are not there. And you only have to look at some of the data that has come over the pandemic and the continuing health inequalities for people with disabilities to see that. But yes, we are. Further down the road in Scotland. I think we can see confidently with this being part of how we provide health and care support, and indeed more broadly public services in Scotland.
[00:06:20] Rebekah Widdowfield: Thank you. And I’d like to come back a bit later to the, to the impact of COVID, but I guess one of the things that impacts on people having choice and control is whether they have the financial means as well. And Nick in your work, you’ve very much been looking at the links between poverty and disability.
And I was sort of struck by one. of your figures that you quoted in a recent article that almost a third of disabled people are living in poverty, as opposed to a fifth of non-disabled people. Wonder, could you just explain some of the reasons for that?
[00:06:48] Nick Watson: Yeah. I mean, there’s a number of reasons. It ranges. It depends what it’s, it’s more expensive to be disabled.
You know, it costs more many disabled people have to have a higher heating, housing can be more expensive because you have to have a bigger house to make it wheelchair accessible, or they tend to, they tend to have, have to be more, more expensive and just sort of aids to daily living. So it becomes, it can become.
There’s also, there’s a, there’s a, there’s a big difference in job opportunities for just so we know that disabled people are discriminated against. And we also know that disabled people are non-disabled people often is that people often get paid less than their non-disabled peers for doing the same. So that it’s built into that.
And I mean, there’s another link between disability and poverty in that disability or impairment is a, in which we distinguish between the two with disability being the social disadvantage that people with impairment experience. But impairment is related to poverty. You know, we’ve known for years, the long link between inequalities and, and ill health and inequalities and impairments.
So if you live in an area of higher social deprivation you live in poverty, you’re more likely to have an impairment yourself. I think there’s certain areas where over 50% of the population in Glasgow, certain postcodes have an impairment or would be considered to have a disability. There’s that strongly thinking in that respect, but there’s also other properties that are built in, you know, if you think about if you have a disabled child and you need a, a nursery with special needs, often these nurseries aren’t available and you can’t get after school.
Support. So that means that one of the parents can’t work. So you you’ll. And then that will go right on into the poverty. Poverty will go through to the pension and everything of that family. So it has those long-term impacts. So structural disadvantage, the structural disadvantages that are built in and pull it, pull it in.
And then there’s disabled people are also, they work fewer hours on average because disabled people get within this within having an impairment it may be that they have levels of fatigue that they can’t keep going. So there’s all of these, I think this is, there’s a whole sort of structural things that pile in on top of disability to create that poverty around that.
And, you know, the other thing has been big, big cuts in benefits, big cuts in welfare support. We know that I mean, work by DEMOS showed that in 2008, the vast majority of the impact of cuts. Were felt by disabled people. I can’t remember the exact figure, but it was a, there was a disabled people that have carried the can for a lot, for all the way, all the way through the years of austerity.
And I think to pick up on Theresa’s point about the impact of COVID, you know, we’ve seen across the country, disabled people, six out of 10, Of deaths of COVID have been disabled people. And, you know, we’ve hollowed out social care. We’ve hollowed out the provision of social care across the country. We massively reduced expenditure on social care across the country.
And this is why we’re seeing such high deaths, I think, within this, cause we’ve, we’ve, we’ve really damaged the system and many disabled people have felt that the,added costs. So I suppose that there is that it’s, it’s all built into that.
[00:10:24] Rebekah Widdowfield: And Theresa you’ve highlighted the need to prioritize investment and in social care as a key feature of Scotland’s recovery, I mean, why has it proved so difficult to do that?
And, and I guess not that you want to pitch and against each other, but the inequality between the investment in the health service, as opposed to investment in care.
[00:10:42] Theresa Shearer: Yeah, I, I I’ll come onto that one second day. Can I just try it back to something Nick said and maybe I challenged a little bit Nick if that’s ok in terms of the data for people with disabilities and how they faired through the pandemic your data is absolutely correct
and I’m not going to argue with the professor of disability at Glasgow University on that one. However I would put one caveats one that link to your area point about human rights, based health and support. We’re having some work undertaken by Strathclyde University right now, which looks at what happens when people with disabilities, who are supported during the pandemic in human rights, based high quality individualised, personalised care and support, as opposed to congregate settings.
Because I think that there’s a real distinction there Our early data and our judgment shows but whilst you cannot argue with the general date of the pandemic, there are some nuggets of excellent practice of how when you support people. What that human rights, based prism in a positive way actually some of the outcomes where less stark than that data you’re given, but it is very early days so I just would put that caveat there.
Rebekah, where do I start? About health versus social care. I mean, absolutely. We, we have in Scotland as we across the rest of UK our real focus on health and health budgets, and you shouldn’t pit them against each other. But I think if we viewed them as an integrated system, and if we look at 10 years old from testing, we are still not there, but we need to get there, which is an integrated system should be looking at preventative spend.
So it shouldn’t be one versus the other. It should be. How do you stop the spend at the acute end? How do we ensure that we are putting in scaffolding? Early in people’s lives through community based assets and through health and social care to ensure that we do not end up with a disproportionate number of people, overly reliant on the acute end of our health services.
So I think if we go health versus social care as a prism, we’re never going to get out of this position we’re in today. I think you can look more positively and more broadly. At what does the positive integrated system look like with care being given equity of the scheme as health? And then start to look at the money as a function of that.
Rather than the primary driver. I think we will serve our country well, we have that opportunity right now with the emergence of the thinking around a national care service.
[00:13:32] Rebekah Widdowfield: But then you were, you were talking earlier just then about social care, having been hollowed out. So not, not only that, it hasn’t been invested in, but it’s been sort of less than, you know, actually investment has decreased.
Can you say a little bit more about that?
[00:13:46] Nick Watson: Well, I think that we saw, I mean, I don’t have the, the Exact figures to hand in, in, in, in Scotland. But we do know that there’s been, that there were reductions in, in social care. But I think to go back to the Theresa’s point that we know that people with a learning disability were three times more likely in Scotland to die of COVID than the general population.
And we know that that people with an intellectual disability were twice as likely as that. Without to actually get COVID and when they’ve got COVID, they were more likely to result in hospitalization or death. So I think that there were pockets, this isn’t to say that there weren’t areas where it worked well, but still the vast majority of people with learning disability were more exposed.
And I think that was. There’s there was real disruption to health and social care due to COVID. I think one of the big things that we saw at the beginning of the COVID pandemic and certainly our work on COVID would show that there was a switch from one of the problems we have and we have integrated health and social care in Scotland.
And that’s a really good thing to integrate health and social care, but one of the problems has been. Health dominates that integration. So the health is the dominant member of that partnership. And at the beginning of COVID, we opened up the Louisa Jordan hospital. We moved, we’ve found evidence that people who were working with learning disability were shifted.
To go and work in into the health sector, they closed down with a large government run or local authority run a day centers and day service provision was closed, was closed down and workers there got moved into different sectors. And I think that what we saw there was a devaluation of social care compared to health.
And I think part of the problem is that the minister, both in England and Scotland, They don’t have the bandwidth to manage health care and social care because the needs were so great. And I’m not blaming that the minister, because they were panicking, you know, they were worrying about how they were going to manage this impending, this potential health disaster.
And so health social care got, got forgotten about at the expense of health care. And I think this, this happens quite a lot, and I think it’s one of the problems that we have with integrating health and social care. We, it, the lessons from Northern Ireland, they integrated in 1974 are that health dominates in these health and social care integration.
And it’s a real problem about getting. People think we think about it. You know, we’ve been talking for for ages ever since the foundation of the national health service, there have been the been concerns that social care. Is devalued at the expense of health and this starting right at the beginning of the, of the health service.
And we’ve been talking about what are we going to do about it, but it never has the attraction that health has. And I think, you know Theresa’s points about a human rights based approach to to health. I think the social care, sorry. I think there’s, there’s a, there’s a need to, to just accept if we could treat social care in the same way we treat health.
Then we, that people have a right to the social care when the way that, you know, if you go to the, if you go to the hospital with it, with a bleeding arm, you’re expected to be stitched. Well, the same thing should be true of social care. That if you need that social support, you should be. If we’re going to have this, there should be that wraparound service, you should have that right.
To receive that. And I think part of the problem has been this, the reduction in that there’s been a reduction in costs, but there’s also been an increase in demand because we got a, the demographic changes and these are, you know, it’s a good thing. The increase in eight increase in life expectancy, but it’s placing added demands on our social care service.
I think that it’s, been stretched. And, and I think we need to look at new ways of also new ways of delivering care and new, new models of who’s going to deliver that support. And how is that support going to be controlled?
[00:17:58] Theresa Shearer: Well, Rebekah, you’ll be delighted, I agree with something Nick said so far, and we’re only 20 minutes in. You’re absolutely right, Nick, in terms of free at the point of use that that seemed universality, that we have in health should be applied to care completely in agreement with that.
The example you’ve given around people switching from social care, to day services are building base institutions the Louisa Jordan of course is questionable. But the other side of that coin, the positive side without sounding like Pollyanna is we have lots of examples. And particularly in the east of Scotland, you’ve given the west of Scotland example there . Where people who traditionally were utilising in my view, many institutions in some cases, in terms of not adequate day services and I have views on that as Enable Scotland actually been given support to do things in their community throughout the pandemic, all be under the restrictions of the pandemic with individual supporting care
so our PA (Personal Assistants) model that we talk about Nick, and actually those people in my judgment will vote with their feet and they will not return to traditional day services, but actually what they have had through the pandemic is the opportunity to have much more self directed human rights, based community-based support.
And actually, if you were to look at some of the positives that come from the pandemic, it should be, it must be that that is the default position.
[00:19:42] Rebekah Widdowfield: So, so it sounds like there’s some, some areas of good practice and models that we can point to that are working, but still some challenges in the system. I mean, you’re, you’ve both effectively about the equity of esteem and that we still haven’t got the right to social care.
I guess, as a lay person, I sometimes find it quite surprising, not least, in the context of increasing demand. The need for care is impacting on, you know, the population in a way. It maybe hasn’t been previously with caring for elderly relatives, not just people. Within impairments from a disability. Why is it so hard?
I mean, it does seem to be an issue that gets kicked down that kicked down the road. If you like why is it so hard if these conversations have been going on Nick as you said, from, you know, for decades now, why haven’t we managed to really address this at a system level, rather than an individual examples of good practice?
[00:20:35] Nick Watson: I think probably two reasons. A lack of that. It’s a really, it’s a difficult problem. You know, it’s, it’s a, it’s a major problem there. We’ve had a couple of reviews we had to do not review because one of the problems is going to, one of the problems with, with addressing is that it requires resource and it’s going to require new forms of, of income.
And so if you think back to the review which talked about taxing people at 60 or taking people payment, and this became what it, when Theresa May put it forward, this became known as the death tax or the dementia tax. And nobody wants to go into a government into, into a thing saying we’re going to tax you more.
And I think that’s part of the problem is that there is, and, you know, the recently published Feeley review into social care in Scotland, it said we weren’t going to look at it. Didn’t want to look at it. Resource because they want to look at how did you get the best? What, what do we need? And then you then get the resource to fund.
It is what it’s trying to sell it. They look deliberately, how do we create a human rights based approach to care? And then we then see how we, we sort it out. And I think there’s a, so it’s, it’s, I think it is a resource problem. People don’t want to go in governments. Don’t want to go in and say, To do this, we’re going to have to tax you more.
And I think that that to me might be part of the problem that it requires it’s going to require money and that to set it up and the government is going to have to say, we’re going to have to tax one, I think. But I personally think that people would be willing to accept that tax. It’s part of what we need.
It’s a, it’s a system that we, the people, everybody knows everybody’s got either parents or, relatives who can’t receive social care or can’t get adequate social care. And the reason why we can’t afford it, there isn’t a resource in place. It needs to be.
[00:22:29] Theresa Shearer: Yeah, you’re right. Nick, I think a systems level, it’s a resource issue, but at a systems level is also a legislative issue.
And what we have found in the social care ecosystem is that perhaps change has not been with the pace required. It’s not like public bodies where you can legislate and see, this is the change required. Therefore, we are doing this and you must follow that change that are over a thousand social care providers in Scotland, across the public sector, the private sector and the not-for-profit sector.
So trying to instill that change without legislation. It’s frankly impossible at a systems level. So I think where we’ve had integrated health and social care at a systems level, we can see that some of the legislation drove that change. So the legislation that will come in terms of establishing a national care service will definitely help.
In terms of that transformational change, I would be very positive about that. There is also the issue in terms of how you spend the resource, Nick and I think that for me is a bigger question at a systems level because if all we do is resource the current infrastructure and Feely very clearly says they don’t want to get into the money or the infrastructure of the care sector.
In my view, if you don’t get into the structure of the care sector you’re not going to meet the depths of changes required. And a simple example of that would be digital and data so we have these huge programs of digital and digital innovation in the health service which are not perfect, but they’re certainly much less fragmented than we have in terms of digital and transformation in the social care sector, where you have a thousand bodies trying to progress digital and data transformation at a citizen level, which I think is questionable.
In terms of a good use of public resources. And actually what we have to do is find a way that we don’t restrict choice and control in terms of social care, but actually take out some of the duplication that we know exist just now. And we’ll be further entrenched as we move to more digital and data driven solutions at systems level.
So I think it’s about the resources, but it’s also about the infrastructure of the sector and the legislation required to drive the change.
[00:25:13] Rebekah Widdowfield: And is that something you you’d share, Nick?
[00:25:15] Nick Watson: Yes. I agree. I think that needs to be one of my concerns about feeling and about this shift where human rights based approach is that a few years ago, a colleague who works in integrated health and social and inclusivity in schools.
So what happens is that the language around inclusion changes, but the practice remains the same. And I think there’s a real danger that what will happen is that the language will become a language of health, of human rights based approach. But the practice will remain the same and we need to implement strategic change into, into the structural changes the way that social care is delivered, and we need to get it. I mean, I’m yet to be convinced national care service, which is what we Feely review is, is gonna, is the way to go. Personally. I would rather see more local control and more localised services.
I would rather see the emergence of more sort of Norwegian or Scandinavia model more around the use of cooperatives to deliver care and, and deliver support. That would be my, feeling at a more local control where there’s more local but I can, I might be convinced that they, that the national care service is the way to go.
And I’m not a hundred percent. I’ve I don’t know enough about that. As we move forward, but I think unless we have structural change in here and unless we see. I, I have a I suppose, concerns about the, the rather the large amount of private sector, for-profit organizations working into care. We moved a lot towards more user involvement in care, and of course, capital rubbed his hands and said, yes, we love this because all of the agencies came in to provide this care at a cost.
And we saw a lot of the private sector. And I think the Welsh government moves much more towards just doing some not-for-profits delivering care. And I would like to see the, I mean, you know, the one thing I would say about our working COVID and disability has been that the, the real role that the third sector has played in the way that it delivers care has been the third sector.
There’s a flexibility. But also I think it’s just because they they’re, they’re working for their community groups. At the heart of what they do is the interest of their community groups. And so it’s about pulling that through and working with us and they were very, very very flexible and able to change, to meet local needs.
And my concern would be that our national care service would not have that flexibility. And that the smaller third sector organizations are able to provide. So I would rather see. That, would be the way I would rather see the delivery through that. But like I said that, I think, you know, very much that it’s structural change that needs to be in there.
And without top-down direct structural change, we’ll just carry on as we have done ever since with little changes, but you know, we’ve been doing ever since self-directed support was introduced. We have been doing freedom of information requests to local authorities about the number of people in options.
1, 2, 3, and 4 these are different ways of delivering a social care option one is like where people are given the equivalent of a cash payment to purchase their own care. Option two is provided by a third sector, a third agency, and option three is service as was, which is directly provided services. And option four is a combination and still about 80% of people are still receiving option three.
So there’s been very little change in terms of the overall numbers and in some areas, this is different, but overall in Scotland, there’s been very little change. This is going to require some, this is going to require top-down, you know, systematic change to, to shift the way of thinking and get people moving in different directions.
[00:29:21] Theresa Shearer: Yeah. Can I just maybe see there’s another podcast and that Nick which is I think you become too fixated about the options it takes between one and four. And I think the thing that we discussed at length in previous conversations is our model in terms of Enable Scotland on its replicability is in some ways what the options are, false constraints.
It’s the practice of how you deliver. And I sought to find anyone to come and review the PA model whichever option did individual takes and seeing that isn’t humanrights based. It doesn’t contain choice and control, but actually that is irrespective of all of those constraints around those options, but actually around to your point, the practice, it is a practice on the ground that is absolutely essential.
And at the risk of sounding like Tony Blair to go back to the point of Scandinavian models. I think there’s a third way. And the third way, we would be local groups, local organizations localised down to the individual, but were some requirement at a national level for those things that we all need. And I really am quite fixated at the moment on digital and data and innovation and some of the great progress we’ve seen through the pandemic with that, not be lost as we built back or forward. So I think there could be a hybrid, which is a national care service to lifting those things are common to all social care providers, but still not losing out on that myriad and jigsaw of localism and activism at a community based level.
They’re not mutually exclusive.
[00:31:07] Rebekah Widdowfield: And I think that’s been a challenge. Hasn’t it? Across a number of areas is how do you get to a sort of national level of support in whatever sector. But also, but also be responsive to local needs, but without then getting accused of there being a postcode lottery.
So that balancing of the local and national, I think becomes important, I was going to come back maybe a little bit to them, to the role of the third sector. Because again, we’ve seen this more broadly in terms of the pandemic and just in terms, I think have a much better understanding across society about the critical role that the third sector can play the way they have.
Innovative and creative they’re being flexible. They’ve changed their models to support that local needs and, and the communities that they’re serving. But I guess what we’ve also seen is quite a lot of collaboration. You know, whether that’s between the government and the third sector, the third sector, the private sector and government and academia.
I was wondering Theresa if you could say a little bit about actually the role of collaboration across sectors in supporting people with disabilities and supporting good quality care.
[00:32:07] Theresa Shearer: So two things on that, Rebekah, I think in terms of the role of cooperation across the sectors, Nick is absolutely right with his word of caution about the rule of private equity and the private sector in particular and delivery of health and social care.
And the fact that we have such restricted budgets. And significant amounts of that budget. going back out if you like. The issue of dividend or privacy to returns so I do think that word of caution is right. What I would say, however, is particularly when it comes to digital innovation that actually we do need to collaborate with the private sector in terms of that expertise, in terms of.
taking what has worked at other sectors including the private sector and applying evidence-based practices to the third sector in the delivery of care. And I, I don’t want to take things down to really sort of micro operational level, but if you think about something that vexes both for the NHS and social care, it would be router management systems.
Our organization has invested over a million pounds in a state of the art auto management system, which has taken out errors and errors of dead time from our workforce to allow them to focus back on the quality of care at the front line. We could not have done that without the support of, and I’m not going to plug them here, but with the support of a number of excellent private sector organizations.
So the idea by working with the private sector, To deliver. Excellent. Not for profit care. Where there any surpluses are then funneled back into the not-for-profit world until I met demand. Nick, I think is one. You can be comfortable with that I’m certainly comfortable with, but it is working with them in an appropriate way and certain terms of digital Rebekah that has worked in my experience in care.
But to Nick’s point around disability and I agree it has worked brilliantly in my experience is the disability employment gap. So we know as Nick says, 70% of people’s learning disability, want to work in Scotland and only 7% do. Now, we will not move that dial without working with the private sector. We look at equity in its trues form in terms of higher education, we know that only 4% of people with a learning disability ever access university.
So the last year we have figures for that, and that was 2017 on the number was 56 young people’s learning disabilities. Accessing university, but that is scandalous in 2021. What we’ve done is we have a groundbreaking program with Scottish Power with STV PLC and with the University of Strathclyde for a really ground breaking programme which its first three years of inception has supported 56 young people into university and work.
And so we know that if we work together, We can actually move the dial on some of those figures. So I am very much come from a place which says we need to work across sectors. We will do more working cooperatively than we’ll ever do working on our own . But I absolutely agree with Nick’s note of caution in terms of not opening up care at large to simply the market because we have seen time and time again and never more so in the pandemic, Nick, if you, of just the market, when it comes to supporting or people and our citizens
[00:35:54] Nick Watson: Well, I agree entirely with the need for involving the private sector in employment. And I, I think that Personally, I think we should making a lot more use of things like community payback schemes, where, where large contracts are awarded for building houses or, or home home-building.
But there are the part of the contract. Is that, that, that, that, that those would protected characteristics or local people employed in there. I think there’s, there’s a lot, a lot to be said for that. And, and I, I suppose I think that, you know, we’re going back to, we’re looking at the broad problem around disability and poverty.
There is a big issue with social care, but there’s also all of the other structural issues that come into this about improving opportunities for disabled people. And then, and I think the other thing that we haven’t really talked about, but really needs to be addressed is access to leisure.
So. We’ve spoken to people with disabled people in general, you know, it’s particularly with learning these things, using gyms, they’re not made welcoming gyms. They’re not made welcome in, in, in, in other areas. And it’s about tackling that systemic discrimination that they experienced. And then perhaps the biggest thing that we haven’t talked about at all has been hate crime.
And when, you know, recently myself and Philippa Wiseman, who’s a member of the research center. I’ve been doing work on and you know, that it’s, it’s part of people with learning disabilities every day life. The people we spoke to when we spoke to them, no, they don’t get on the bus when school children on the bus.
So they don’t get on the bus before nine o’clock and they make sure they’re not on the bus between three and four when they know children are going home, because they’re just, they get so much abuse on the bus. People frightened to leave their communities, people frightened. These are , these are, this is just such a broad, terrible experience.
Eric Anderson, who writes on learning. We know that people with a learning disability die much younger than their colleagues. And at age 50, they have as many comorbidities as sorry that at age 20, they have as many co-morbidities as non-disabled people do at 50 and a colleague of mine, Eric Anderson. . He says, you know, some of that’s related to people’s impairment, some of that’s related to.
Not receiving the healthcare, and being discriminated against in healthcare, but an awful lot of it is related to living in a society that excludes you and living in a society where every time you go out and you’re frightened of being attacked, and every time you go out, you’re frightened of abuse.
And you know, the work by Mancap a few years ago, people learn to report. I think this happens to them on a daily basis, others, a weekly basis. Just becomes it. I remember I interviewed a young man and we were talking about his life and we’re talking about a hate crime. And he just turned around once and said to me, you know, I just wants to want, I just want to once get on the bus and get off the bus without being abused.
And it’s just, this is just life. And I think so we’ve got all of these things about social care. That was really important, but they all go hand in hand with creating an environment where people where disabled people don’t feel safe. You know, it’s not just people with a learning disability. It’s people with short people, people with facial disfigurement, people with, neurodiversity .
This is part of everyday life and it it’s just, these things need to be addressed. These cultural barriers that people face.
[00:39:28] Rebekah Widdowfield: That’s a strand actually across the podcasts around sort of equality and diversity and inclusion. I mean, yes an awful lot is about systems and structures, but there’s also about behaviors and attitudes.
And, and I know they’re not, not interconnected and there’s clearly a role for education, but the responsibilities we all have as individual citizens in terms of actually how we behave. And actually calling out behavior as well. Obviously, that’s been done very much in the sort of Stonewall campaigns of the past in relation to the gay people in the community.
But you know, if we could have much more of that on an ongoing basis, you know, where actually, if somebody is abused on a bus, that people don’t just sit and put their head down and we’ve all been guilty of that, I’m sure Theresa, you were going to come.
[00:40:12] Theresa Shearer: Yeah I mean I think that that’s part of the scope of the inclusive public services work, which is really echoing and amplifying voices of people with disabilities to be heard,across Scotland in a really positive way.
But I do think Nick there can be a link back into social care. If we think about good models, personalised self directed care, the prism within which your community views you, will be dependent often on the circumstances within which you live your life. So if you look at someone who is congregating in a day centre or someone who is a bus with twenty other people’s, with learning disabilities and what their life might look like.
We are a society, not systems, label, almost entrenching those differences. However, if you have a person who is living in their community independently, if they are employing people to support them, to access their community. And we haven’t touched on this as social carers as a driver of economic growth and economic, and fair economic prosperity, then actually your community starts to view you very differently.
And I’ve had lots of firsthand expedience of, of parents and individuals who are involved with, with the learning disability movement in particular, talking about the difference of going into restaurants and their young person, or they’re the person that they love being viewed a citizen of their community, a customer who access the restaurant and buy lunch as part of their community, as opposed to having lunch served to them in a congregated building institution with 50 other people with disabilities.
So for me, there’s this really strong link between how society views those with impairments, learning disabilities as active contributors to their community and social care in my view has a huge part to play, good self-directed community based social care helps break down that stigma and actually helps the prism within which we’ve view.
And we were doing a little bit of work again, early days in terms of research, of the idea of social care as an engine for economic growth in a fairer Scotland. And I think there’s something around who we communicate and message that social care is not a drain on our economy, but actually can be a positive impact on and have a positive multiplier effect fiscally.
And in terms of societiesas a whole and how we become more inclusive.
[00:42:59] Nick Watson: I think there’s, I think there’s a, there’s a very good point there. And certainly one of the things that COVID has exposed is how contingent disabled people’s lives are on on, on services that they’re not they’re living in the community, but they’re not of the community often
[00:43:15] Theresa Shearer: And we need to make them all the community.
[00:43:17] Nick Watson: Yeah. To make them of the community is that they used to. Going every day to a club of some form or other where they meet other people, their own disability. And then these were closed during COVID and they had no community. They had no friends. And when I spoke to someone who said that she had no, no contact, I spoke to her in January.
She says since last March it’s been me, the cat and the TV. And because they had drama clubs that closed and she had four groups when just before COVID she had four groups. Which she really enjoyed going to, but. What happens is I think that when these things break down, we all lost our, we all lost connections, but I think for people with a learning disability, these connections, where there were no other connections in their community, they, they didn’t have the, the sort of community groups in there to support them.
But some, some were well supported by neighbors. So I’m not saying that all it was all a disaster, but there were some people that very, very segregated and very lonely lives during the pandemic. And we learned. We have always known. And I suppose we have to start thinking about how do we provide support or day to day activities during the day for disabled people, people with, with an intellectual disability.
And also keep them part of the community. And, and I don’t think we’ve ever really finesse that there’s work. People will get work, but it’s how we can move as well beyond ill or include other forms of involvement as well. And I, and I think it’s making people of the community. That’s the issue.
[00:44:55] Theresa Shearer: Nick, if I can paint a picture imagine if that person you’re talking about, and I don’t know who she is, but imagine if she accessed her local drama club that was in her community and then COVID hits, or the local drama club closes down, but the local drama club moves online or the found different ways to work.
Then actually isolation becomes much less likely because she is off her community and often the community will have. They will level their own assets would be in order to make sure in a crisis that people are being properly supported. So, so I do think that as something for me, this connection between congregate, institutionalised settings versus community based settings that can trench that isolation.
And really my hope is that we take this opportunity. And we see lots of of it,you know, both lots of on social media within the circles we work in of people saying I’m not coming back to my day centre
[00:45:58] Nick Watson: I think I think there’s, I think there is that I’ve also spoken to people who, who live out outside live outside of the major cities who don’t have the resource, that of third sector organizations and so on too.
And don’t know very many people, but one of the things that’s happened during COVID is that the shift online, they don’t have connections from Aberdeen to Plymouth and they have friends all over the country and you speak to them and. And that, that there’s a different, they they’ve learned different things.
I spoke to one woman who told me she realised that she was being bullied in her work. So she’s not going back to that job because she was being, she’s not going to go back and put up with being treated like that because she hadn’t spoken to other people. She didn’t appreciate that this is not normal to be treated like that.
And that, and I think that there will be, there’ll be returned. Some people will want to go back to and I think that’s one of the things that we have to put, we have to put in place models where if people want to go to. A club for, people with a learning disability or people with a physical impairment or whatever they can go.
But also that they can go to clubs that they are accepted in local drama groups. And it’s not tokenistic, but they’re given the thing that they are taking on in cookery classes or they are taken on in other groups and not. So there needs to be, people can both have their own groups, but also be part of the mainstream at the same time.
[00:47:27] Rebekah Widdowfield: And I guess that takes us back to almost where we started in terms of the importance of choice.
[00:47:33] Theresa Shearer: Absolutely. You’ve just summed up self-directedness and choice and control.
[00:47:37] Nick Watson: And it is about how people having the right to make those choices themselves. And so that all of that comes through and being able to go on the bus to go to those groups and not have to rely on community transport because they’re too frightened
[00:47:51] Rebekah Widdowfield: and being facilitated and able to make the choices, not just being, being, given them.
None of us would want to repeat the experiences of the pandemic, but the post COVID futures commission obviously was very much set up on the basis of how can we emerge as positively as possible from the pandemic and making sure we do use this as an opportunity to maybe reset some things, to do things differently.
So just a final question, not an easy one, but we’ve talked quite a bit about what’s what’s being done well in Scotland and some of the things you’d wish to see change. But if you could do one thing to improve the lives of disabled people in Scotland and the quality of the lives they live. Today, what would that be?
[00:48:35] Nick Watson: I suppose that for me, it would be ensuring involvement and ensuring participation and ensuring disabled people have more say in how services to deliver it and, and working with there’s a, there’s a, there’s a big drive towards coproduction. And I think we’ve, we’ve, we’ve seen this move towards coproduction and working with.
But it’s not throughout the system. And I think we need to move that for me, there needs to be this move towards sort of a more user led, but also a co-produced. But that doesn’t mean that users know everything. But what it means is that they work with, and it’s not de-professionalising, you know, social workers and people who design policy and design systems have their own level of expertise, but it’s working with and working together so that they bring in that expertise, but they work with people that don’t .
So I think that one of the great things for me would be, would be that that recognition or more widespread recognition of, of co-production and realise actually realising that. I mean, unless we have a lot of events cause 10 years, isn’t it. Since the Christie commission and we’re still seeing with Christie laid out, you know, all of this, this idea of how we did it, but it hasn’t really been implemented in the way we haven’t achieved all that we could have got from Christie.
But I think that whole notion. Of co-production and working with communities is, is for me the way forward. And that would be, I think the one thing I would like to see and, I look at post COVID. I look at the organizations that have, you know, really changed the way that services are delivered and that they’ve involved, disabled people.
We speak to disabled people. They talk about the way these organizations have helped them. So yes, it was kind of coproduction.
[00:50:29] Rebekah Widdowfield: Thanks Nick , Theresa?
[00:50:30] Theresa Shearer: I’m going to cheat a little bit and say two, if I may Rebekah. So self directiveness is the default position that just has to be it. And whatever we do with public services self-directedness must be the default position and the funding should follow that would really push people to change.
And the second thing I think from a health and social care provision perspective could be quite controversial here and see that the de minimis position for the delivery of social care needs to be very good or excellent. That has to be the de minimis position because what we have seen Nick throughout the pandemic, our social care providers who were not providing very good or excellent support pre-pandemic, absolutely struggling under many cases, failing people during the pandemic. So this idea is as a country that we allowed mediocrity. In the delivery of social care at scale for a long period of time, I think is something we can never go back to. The spotlight on what very good and excellent looks like needs to remain in terms of the delivery of social care.
And it has to be the de minimis, Rebekah. Because if something, and we know there will be other pandemics, potentially we know that we live in a very volatile environment. We must be prepared culturally and systemically in care, not just in terms of PPE or the practical stuff. We must be absolutely culturally prepared for things that could go wrong.
And that means starting from a de minimis foundation of very good or excellent. Nothing else is acceptable
[00:52:17] Rebekah Widdowfield: Theresa and Nick, thank you so much for giving up your time today to talk with me about disability and inequality.
[00:52:24] Theresa Shearer: Thank you.
[00:52:30] Nick Watson: Thank you
[00:52:30] Rebekah Widdowfield: Thanks for listening. You can find previous Tea and Talk episodes on our website rse.org.uk. Or you can subscribe on Spotify, Apple, and Google podcasts for our latest news, details of events, and activities. Search for the Royal Society of Edinburgh on Twitter, Facebook, Instagram, and YouTube.