Episode 5 – Interview with Pam Duncan Glancy and Lindsay McCurley
Last updated: 20/10/2022
Our fifth episode features Pam Duncan Glancy MSP, the first permanent wheelchair user to be elected to the Scottish Parliament, and Glasgow-based single parent, Lindsay McCurley, who is a full time carer for her autistic son. We explore the barriers that single parent families who have an adult or child with a disability face when accessing employment and training and discuss what needs to be done to overcome these barriers.
Listen to the podcast below.
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Phillipa Kemp, OPFS 0:00
Welcome to Episode five of the OPFS podcast. Today I’m joined by Pam Duncan Glancy, Labour MSP for Glasgow Region and the Shadow Cabinet Secretary for Social Security. She’s the first wheelchair user to be elected to the Scottish Parliament and has been an MSP since 2021. Welcome, Pam.
Hello, thank you for for doing this and looking forward to it.
Philippa Kemp, 0:33
And Lindsay is my second guest. Lindsay McCurley is a single parent also from Glasgow and she’s a full time carer to her autistic son. Welcome, Lindsay.
00:00:33:14 – 00:00:36
Thank you so much for having me.
00:00:36:19 – 00:01:00
And thank you both for taking the time to join me today. So today’s podcast will focus on single parenting. We’re going to have a particular focus on disability. Pam, you are the first permanent wheelchair user to be elected to Scottish Parliament. Can you tell me a little bit about your journey to becoming an MSP and what sort of barriers you’ve come across?
00:01:01:15 – 00:03:56
Thank you. And the barriers, I have to say, for a disabled person in politics are numerous. And not only do we have the difficulty of accessing politics in the first place, which actually is quite a difficult thing for anyone to get involved in, and particularly because of the state of the national debate around politics, it’s really hard for women to get involved and as a disabled person and as a disabled woman that’s compounded.
And when people say ‘what is it or what are the barriers? There are some that are related to the parliamentary process themselves, some are about the party, what parties do and all parties have the same problems, my understanding is. And some of it’s just about society in general. So if you can’t get out of bed in the morning because you don’t have enough social care or that social care provision isn’t isn’t addressing the fact that you also want to participate in society and enjoy your civic duty.
And if it doesn’t recognize that, then you can’t go anymore, you can’t participate. And so for disabled people, the barriers are numerous and actually quite complex. And all of the barriers that disabled people face in general in society, including transport, social care and accessible housing, and then add into that attitudinal as well with some of the difficulties of getting into politics for anyone.
00:02:12:10 – 00:02:21
Mm hmm. And do you think yourself being now an MSP in the Scottish Parliament has changed attitudes or has come some way to changing attitudes?
00:02:22:03 – 00:03:56
I’d like to hope so. I don’t want to to to over-egg that though. But I would like to hope so. And someone said to me recently that it’s almost like – this kind of struck me – in a way that the Chamber hasn’t had before. It’s a little bit like you’ve got Jiminy Cricket on your shoulder because they’re not just talking about other people.
They’re talking about someone who’s in that room. And whilst I wouldn’t, eh, suggest by any stretch that I’m the first disabled person in Parliament, I’m not that that’s the case. But sometimes by by just recognizing and noticing that that there’s a wheelchair user in the room can be a little bit different and it means that people are not just talking about someone else.
It’s not the other person. It’s actually one of them. And that’s important for all protected characteristics. We’ve seen it too with the two women of colour being elected to Scottish Parliament for the first time. And, you know, that has made a difference as well on the basis of the direct impact that it can have by just being in the room.
And I think that’s important because if you’re not in the room, you know, you’re not round the table, I heard someone say once, if you’re not round the table, you’re probably on the menu. And I actually think that’s quite, quite true. And so just by being there, I think you’ve got that sense of check and balance a little bit.
Then, of course, there’s the much bigger question about, you know, what have you done with it, with the the opportunity and responsibility you’ve been given. And so people will say to me, A, are you only going to be doing things for disabled people? Of course not. I’m elected to represent Glasgow and the people of Glasgow and I will do that and based on my ability and that means everyone.
But I make no apology for the fact that as a disabled woman, I will also make sure that everything I do in Parliament and is about promoting the rights of disabled women as well.
00:03:57:06 – 00:04:05
Lindsay, can you tell us a little bit about your own family situation and how you came into contact with One Parent Families Scotland?
00:04:05:07 – 00:05:09
Yeah, of course. I’m a single parent and carer to my son. He’s now 14, but he was diagnosed when he was four, five, in between nursery and school and I became his full time carer. And after that, due to lack of services and understanding and the school system and the systems connected to that, I got in touch with One Parent Families Scotland through a friend of my son’s rugby team, and I was looking for some financial advice about try to get back in education.
Now that my son is older and can handle a wee bit more responsibility and knows how to regulate, I was wanting to go back to college, but I wasn’t getting a lot of help and support from the colleges I was getting in touch with. So a friend put me in touch with a friend. That friend happened to work for One Parent Families Scotland, and they pulled me in under their wing ever since.
And they have been trying to help me go forward with the decisions and employment and education and everything else. That’s been a wonderful support.
00:05:10:01 – 00:05:15
So it sounds like you heard about One Parent Familes Scotland basically through word of mouth?
00:05:15:06 – 00:06:44
Oh, yeah. That’s that’s kind of been the story of our life. But with Nathan’s disability, it’s always been a friend of a friend or someone who recommended the service. I’ve said the whole time I’ve been speaking about any of this that I’m very fortunate. I recognize my privilege. We’ve got a wonderful family, wonderful support base, wonderful, wonderful community.
And they are the people who have put me in touch with the care centre, who helped me advocate for Nathan and support Nathan and get training in autism and taught me different ways to help him deal with his life. They were the ones who put me in touch with Nathan’s rugby team. And again, we’re very fortunate because of his two coaches, one of them an ex-policeman and one of them’s an ex teacher, so if things weren’t working right in school, the coach was like, ‘no, this is what we do, this is what we say, this is what we write. I am a policeman. If you need advice for this, this, or this. if you need someone to sign paperwork, if you need someone who is a respected member of community to stand behind you and say, ’no, this is this..’
If I needed someone to advocate on our behalf, he always steps up and again, a friend of a friend got us in touch with One Parent Families Scotland and they’ve been wonderful. But we’re very fortunate in that. But not everyone has that situation and not everyone’s had the help and support we have. So I want to help push that forward that everyone can get that, not just people who fall in it by chance.
00:06:44:23 – 00:06:55
So yeah. So rather than people finding out about services like One Parent Families, Scotland, by chance, what do you think could be done so that people are aware more of the services that are available to them?
00:06:57:03 – 00:10:38
I think there should be a bit of a middleman service when it comes to when you join the benefits or when your child gets diagnosed. And I was speaking to my parents over the weekend. My mum was a nurse for 35 years in the NHS and she kind of compared it to if you were going to an oncologist for test results, they always ask you to bring someone with you because if you get that dreaded diagnosis after you hear that word, after the diagnosis, you kind of zone out, the world changes, the floor disappears, the world shakes and you don’t hear anything and the support person’s there to get the information and help you and go forward with that.
It was the same for when Nathan was diagnosed. It was: ‘here’s the diagnosis, here’s the paperwork. Here’s a 79 page booklet on autism in all its wonderful glory, have a nice life see yous later.’ And I had then had to move forward with dealing with the school, dealing with benefits, dealing with different offices and none of them really connect or talk to each other.
It was just assumed I was supposed to know what I was doing. I was supposed to know what benefits I was to fight for, the tax credits I was to apply for. I was supposed to know how the support systems at school worked, and I was supposed to know the right words to see in the right things to do.
And at first it really felt like I was just constantly failing and as if I was uneducated and daft, I wasn’t raised in a family, that works the system, none of my parents, none of my family have ever been on long term benefits. We’ve always worked we’ve been raised that way, where you contribute to society, you’re a valid member of society, you give back to the community.
Even if you’re at your lowest, there’s always someone who’s in a worse situation and even if it’s just a kind word or a holding hand, you’re giving back. So, none of us knew anything about the system and there was no one there to really help. And the people who should have been helping were so overwhelmed. There wasn’t enough employment or there’s too many people . We would go to the Jobcentre and I would hate it because it was literally – you stood in a queue with all kinds of people and I don’t want to be offensive to anybody at all…
It would be people who are inebriated and weren’t in the best situations and I’d be standing there with my five year old and these people would be swearing and swearing and and I had to stand there with my child waiting to get advice from a jobcentre official who didn’t have the time, didn’t have the qualifications, didn’t have the paperwork, it was ‘tick the box, sign your name, have a nice life, bye’.
And it was, you felt like the lowest of the low and I want to help push that. I think a middle man service and ways to change the services like for the job centre example I just gave, if there was a day that was specifically for single parents and there was child facilities where toys were brought out things.
Because if you can’t concentrate, if these places aren’t child friendly. you can’t concentrate when talking to someone. If you’re too busy dealing your kid, you’re not going to get what you need said. You’re not going to get the right support. If there was days like that, or even like extra support for disabilities as well. If there was a day when like carers come and they told you – this is what you need, this is what you are entitled to.
That’s what we need to do. This is how we push it, because people don’t automatically know. So if there is a middle man service to connect and say right this is what you’re due, this is the paperwork we have to do. That is the people have to do. That is what we say to schools and how we help with schools. This is where you can get training and is where you can get education.
That would be such a big help for people.
00:10:38:20 – 00:10:43
Have you been a single parent all of your son Nathan’s life?
00:10:43:14 – 00:11:31
More or less. We officially split up when Nathan was one, and even that was a fight because everyone just assumed that he’s around and is supportive and paying money and they’re like, ‘Well, is he I see not helping you, is he not helping with the rent is he not helping you with school? And and then they would get in touch with him, especially the school to do with Nathan and it would be my word versus his word and the school were having to kind of balance that because they need to respect both parents opinions even if they’re not all right and again you can’t advocate to school and say ’no, this is what’s happening to me with him.
They have to legally take both sides of the parents and advocate for the child that way. But it causes such a disturbance, especially in support.
00:11:32:01 – 00:12:45
This week we’re speaking is Challenge Poverty Week. And we are in the worst cost of living crisis since the 1970s. There’s no sign of things abating. Prices are rising. Energy costs are still unaffordable for most low income families. The Scottish Government tackling child poverty delivery plan identifies six groups as being priorities in order to tackle child poverty. These are lone parent families, minority ethnic families, families with a disabled adult or child, families with a young mother under 25, Families with a child under one, and larger families of three plus children.
So if you are heading a lone parent family, you’re likely to be a woman. And you may also belong to another of these priority groups, such as having a disabled adult or child at home. So you could be triply disadvantaged in that scenario. And we know that among children in relative poverty, 40% of people in lone parent families also have a disabled person at home.
Pam, why do you think this percentage is so high?
00:12:45:00 – 00:13:50
So I think there are more disabled people in society than most of us think in, first of all. So let me start. Usually people are quite surprised about the numbers of disabled people. So when you say for example, one in five people are disabled, they’ll say, oh, and that’s because they have a perception of what a disabled person looks like, is weak, etc., and actually disabled people come in all shapes and sizes and different backgrounds and have different opinions and ideas and views and also different impairments.
And so that that means that there are probably more disabled people than we think, which is why people always surprised. The other thing as well is that it doesn’t surprise me that there is a relationship between the numbers of disabled people in families and the number of families in poverty. Because we know that if you are a disabled person, you’re more likely to be in poverty.
And that’s because of the the barriers to education, barriers to employment and an inadequate Social Security system that doesn’t identify the fact that you have additional costs as a disabled person and adequately meet those additional costs. So because of all those reasons I’m not surprised that we see a larger group of families who have a disabled person. And the relationship between poverty and disability is well known.
00:13:50:22 – 00:13:53
Lindsay, do you have anything to add to that?
00:13:53:22 – 00:14:45
I think she’s hit the nail on the head. When Nathan was diagnosed, we didn’t know anything about it. We hadn’t really thought about it because we were living in that experience. And now that we have, it’s easy to see how people can almost blase forget that disabilities and society especially if it’s a nonphysical disability, we we are constantly having to remind people Nathan’s autistic.
He masks incredibly well people forget so many people have said this since day one. ‘He doesn’t look autistic, he doesn’t look disabled’. And I’m like, we have to remember that this is a mental disability. But we’ve also kind of lived with Nathan saying it’s not an excuse for bad behavior. You still need to respect your p‘s and q’s and you have to advocate for yourself that you have this condition and that you need help and support.
00:14:45:07 – 00:15:17
But it can be incredibly hard for people in that position to do so because they just don’t feel theyt are being heard or they feel that …Nathan, the one thing he keeps saying is, ‘I don’t want to be bad’. He sees kids who get the support as the kids who are acting badly or misbehaving. And he thinks if he asks for help, that puts him in that same position and he doesn’t want that. So I think there really has to be a better understanding of disability and what it means. And then we can hopefully move forward with helping change the system.
00:15:18:00 – 00:17:17
One of the systems, I think that we desperately need to change and I’m sure will come on to talk about Social Security and I’ll come back to that. The education system, I think, is failing thousands and thousands of children across Scotland right now. And we know, I’ve spent a lot of the summer going up and down Scotland to talk to people about my members bill on supporting young disabled people through their transitions.
And we still see a situation where you’re six times more likely to leave school without education, training and employment if you’re a disabled person, you’re five points behind non-disabled people in terms of getting an A-C at Higher and you end up unlikely to be in employment. There’s still a 32% employment gap and all of that starts, I think, because we’re not giving young people a fighting chance in education, we need to change that.
The other thing I see an unfair debate as well, and in all the work being done on this is and you’ve described as well earlier today in the podcast, The amount of work you have to do to project manage your own life. Like with all the agencies, you need to speak to, the people you need to co-ordinate.
That is a huge, huge burden on families right at a time when they should really be planning what they want for their child and what that young person wants to do in the future. And if you’re doing that, if you’re spending time coordinating agencies and to try and encourage them to get it right, many, many people who are working in these agencies are doing the best they can.
If you’re spending your time trying to project manage all that, then the very notion that you would also they and they arebe trying to work out what are you going to do about childcare so you can get a job, what you need to get a job and is that you’re going to recognize that, you know, as a as a parent of a disabled person or indeed as a disabled person yourself, you might have different requirements and different support needs.
And all of this comes together to to really I think when you look at it, it’s it’s unfair, unacceptable but rational that disabled people are living in poverty. It’s no wonder when you look at the when you look at the fear and stress that people go through, just trying to get the rights that they’re entitled to it, you can understand why people end up living in poverty and we shouldn’t accept that.
00:17:17:15 – 00:17:23
Yeah. Do you think it’s a case of people giving up then, because it’s just too hard to navigate the system?
00:17:23:15 – 00:17:31
Well, I mean, a lot of young people and disabled people, non-disabled people, are five times more likely to just leave school than non-disabled.
00:17:31:05 – 00:18:39
We’ve we’ve started to have conversations with Nathan and encourage him to embrace failure of the system. That’s what we call it. He keeps.. He’s in third year now and starting to do Standard grades. And I’m like, if you don’t pass the standard grades, that’s perfectly okay because you have other options. There’s or college, there’s university, there’s online learning, there’s more now than what there if was.
But we’ve always said to him: ‘you’re growing up in a system that’s broken and isn’t supportive of you. And that’s okay because we’re breaking the mold going forward. We’re showing them just because the school system says you failed it doesn’t mean you’re a failure. I said, look at me. I passed with standard grades and HIghers and I was going to be a teacher and look at me.
Now I’m a single parent carer, not that that’s a downgrade, but I had the expectations that I wasn’t going to be in benefits, I wasn’t going to be home all the time, and I was going to be a working mom with a big family, a lovely house. And that’s not came forward for my life. And that’s perfectly fine because I wouldn’t change where I am now.
And I’ve told them that life expectancy changes. And just because a system has told you you’ve failed, it doesn’t mean that you actually have.
00:18:40:01 – 00:19:45
That such a neat way to look at the structural inequalities that disabled people face. And it’s also an important way to understand the actually the problem we need to fix is not individuals and or single parents or disabled people. Actually, the problem we need to fix is a system that does not recognize the ability that some people have and the responsibility that those systems have to adapt to that and in legal terms is it’s about reasonable adjustments, but it’s a bit more than that and we really have to face that.
That’s why I get increasingly frustrated, if I’m honest with you, trying not to be too political, because that’s not the nature of what we’re hear to do. And that’s that’s why I get really frustrated when neither government seems to be addressing the structural inequalities that people face. It’s just and, you know, one government, particularly UK government at this moment in time, seem to be systematically undermining and dismantling some of the welfare state.
And then the Scottish Government are, I think doing a lot of kind of stop gaps and plugs. Actually, we really need fundamentally change the way society is structured so that we can address this.
00:19:45:05 – 00:19:46
Break the mold and rebuild.
00:19:46:13 – 00:20:57
We’ve just released a report called Living Without a Lifeline, which was based on consultations with 260 single parents, one of which was you, Lindsay. The report found the majority of single parent were in work, so that was 72%, which is roughly in line with national statistics. However, there is a big difference between single parents with no disabled adult or child in the house and those who do have a child or an adult in the house with a disability.
So we found that 46.7% of single parents where there was no disability were in full time work. And that is compared to just 28.3% of single parents with a child with disability and only 17.7% of parents with a disability themselves. So the when we talked to the parents were involved in this consultation, they said that this is mostly down to systemic barriers that need to be addressed for adults and there needs to be greater support for children with additional needs.
Lindsay, I know that you’ll have a lot to say about this because you have a child with additional needs. And I think I’m right in saying that he was diagnosed with autism when he was just five years old.
00:20:57:02 – 00:24:16
Yes, he was five years old when we were diagnosed and we flung into the life that we live now where I’m his full time carer. We were promised full time carer. And I was very naive when we started. I thought we would get lots to help me to get support. And I’d always heard about learning support bases and and institutions like that in schools and I very naively thought, right, we can get him set up with A, B and C, I can go to work, we’ll live this life, we’ll deal with it. if you see I to go through all of this life will deal with that and I got hit very quickly with a very big hammer and told, no you will stay in the teeny toty box that we put you in. You will stay there and do as you’re told because it’s too much of an effort and too much money for us to change any of the systems.
I realized very quickly that the schools were under trained, under-qualified, under funded.
They tried their very best. You also need to remember that there’s people involved in the school system, too, that individuals have their own ideas and ideals and politics involved. They think they’re right, and you’re having to fight against that at times. And it’s a bit that that led to years of not being able to get a job or being able to be employed because I was having to be involved in the school and pushing forward for support and being there for Nathan.
And then once we started to learn how to self regulate and calm himself down from these meltdowns or blackouts and things, I was like, I’ll go back, I’ll get a job. And again, the Jobcentre even just looking for a part time job, was ‘if you go half an hour over the 16 hours, we need to do A, B and C, so it’s not worth my time.
It’s not enjoyable. The one thing I get is I’ve got friends I love very dearly, but there is a barrier between us because they are working parents and I’m not working. And then say you’re getting to go to school events, you’re getting to enjoy a coffee morning for Barnados, or you’re getting to go to your classes at these centers and coffee mornings and you’re getting to be involved in your child’s life and I’m having to work all the hours of the day.
What have you got to complain about? And you feel very ungrateful once it’s put to you in that way. At the same time, you’re like, you’re having adult conversations, you’re contributing to your society, you’re feeling accomplished at the end of the day. But there’s weeks where Nathan will literally be the only person I talk to to outside. Like if I’ve not had a phone call with a parent or I’ve not been to coffee morning or a class – he will be the only person I speak to in a whole week and that can be so incredibly isolating.
And you also then have like I’ve got a friend who she’s had to quit her employment because she can’t get a job or a ‘normal’ job because her son’s autistic and can’t regulate as well as Nathan does. So she constantly has to go to school and pick him up. He also has other health conditions. It means hes’ in hospital quite often, but it’s a constant fight between, right, I want to do something for me, but I’m a mother and I’m a carer that I have to do right for them.
And you of keep putting yourself on the back burner, but not until you can’t That’s that’s what we’re kind of fighting in employment just now, is is trying again to break the barriers.
00:24:16:22 – 00:24:21
And if the barriers weren’t there, what would you be doing? What would you want to be doing?
00:24:22:01 – 00:27:13
If it was back beneath my first diagnosed, I would probably be a teacher by now. That was he goal I actually wanted to be a drama teacher who dealt with disabilities. I was at college and we done a community outreach program and it was.. we had to go to primary schools, nurseries schools, high schools, places like that.
And we went to this support base at the college and it was for people with disabilities, but there was also a young man there who was 21 who had had a stroke due to a blood disorder. When we arrived, my friend and I, the people at the base were very standoffish. Being a young naive, 18 year old.you’re like..’Why are you being like this with me? Why are you so? But I know why it was. She was like: Don’t expect too much. You’re here for eight weeks. They’re not going to connect to you. They’re not going to talk to you just to you need to get your boxes checked in my base and we were like, she’s speaking to us like this?
And we were determined to prove them wrong. So what we done is we had paper masks, we made and we took them in. We said to everyone, you can decorate these masks and you can be whoever you want to be. If you want to be Batman, be Batman, if you want to be a cat, be a cat. You can be whoever you want. And when you’re ready to be you with me, we can take the masks off. And by the end of the eight weeks, none of the people were wearing masks and the women at the base was like, How did you do that? How did you connect? And I realise now back then they were just they were having to do it for funding and people were just coming and doing the bare minimum to help and then getting back out again and not bothering again. Whereas my friend and me, we’d go back at lunchtimes and we’d go back and visit and see people and I thought that is why I wanted to I want to support people, because the woman from the base was really stand offish at first as a protective mechanism for the people. I didn’t realize at the time that that’s what she was doing.
She’s like: ‘You visit here, you’re wasting my time because I’m supposed to be doing this. I’m having to deal with you’. And I now realise she was putting up that barrier to protect the people she was working with. And I thought that’s what I want to do. I want to help. So if it had been back then, I would have been a teacher to help disability children.
But now I would love to be like a counsellor who can give back and give advice and help with the training and all the stuff that One Parent Familes Scotland have done. For me, all the things that the carer centre have done for me, I want to be able to volunteer that help and that need. There’s nothing I love more than when Val at my care centre phones me and says there’s a family, newly diagnosed, the exact same situation as you. Can you come down?. And I’m like yeah not a problem. And I go down and we talk and sometimes that’s all it takes is somebody to be there. And that’s what I’d love to do.
00:27:13:04 – 00:27:18
Pam, what do you think we can do to get Lindsay into that kind of position or other people like Lindsay?
00:27:19:16 – 00:30:52
There are so many different things that I think we need to be doing. And you know Lindsay your life experience is going to be and probably already has been invaluable to so many families like yours. I can remember the very first time I was in a room full of disabled people and how empowering it was to appreciate that it wasn’t, I wasn’t inherently wrong, I didn’t have a problem, but actually society needed to change.
And that’s fundamentally why I’ve ended up in politics, because I had that burning desire to change what I could and I think we need to do quite a lot to be able to get to a position where like you and other people can do what they need to do. And when at age 16, young disabled people’s aspirations are exactly the same as non-disabled people and by the time you get to 26, they believe that nothing you can do can change your life. So whatever we are doing to young people at that point in their and their life is completely knocking the hope out of them. And we can’t do that to young disabled people and we can’t do it to parents either. And so we really need to fundamentally think we need to we need to look at education.
That’s why I have brought my bill. And I do think we need the changes that that bill will bring. I also think we need to look at childcare because if you are, particularly for families like yours, Lindsay, and I’m conscious, I don’t want to be telling you what what we should be doing for your kind of families because actually it should come from One Parent Famlies Scotland, but as the report highlights, you know childcare itself is a big issue and if you don’t have the right kind of childcare at the right time that is affordable in a place that you can get to and that works round the types of jobs that you have, it’s going to be almost impossible to do that. And it’s harder for parents of disabled children to do because a lot of childcare facilities aren’t really geared up to supporting young disabled people and it’s it doubly compounded because formal networks and formal systems are not quite there yet to support disabled people.
Also, informal networks are really difficult to tap into for this kind of thing as well, because I remember myself when I was young, my mum couldn’t send me to my pal’s house after school when she was busy doing something (my mum didn’t didn’t work, my mum was a full time carer for me). But if she needed to do something. it was hard for her to put me somewhere else or to ask a friend, a family friend to look after me because I couldn’t even get in the house because it wasn’t accessible, you know? And so we’ve got a hard enough time making sure we get accessible houses for disabled people to live in. But then our family friends might not have them either.
So you’ve got a both an informal and a formal network that really needs to and do needs to be in place so that people can access the childcare that they need. And we’ve got a long way to go to get it, I think. And we had a session through the Social Justice Committee where we spoke to parents like you, Lindsay, (in fact, I’m sure you were one of them) when we spoke to One Parent Families Scotland about what we need to do to support families, and childcare was big deal so that’s something else we have to do.
We also need to work with education providers, colleges, schools, universities to be more welcoming and for disabled people, but also parents of disabled children, to recognize that actually they do need to be a bit flexible at times and they need to be able to respond to and adapt an environment that is that isn’t just a one size fits all, because otherwise we can’t do that.
There’s no…for example, the Open University, quite a flexible means of accessing lectures and the university course. And they’ve got much better statistics when it comes to disabled people, single parents and others that a lot other institutions could learn from.
00:30:52:15 – 00:30:57
So what sort of things are the Open University doing that other institutions might not be doing?
00:30:57:15 – 00:32:56
I think they’re just a lot more flexible and the way in which the person learns is much more directed to their circumstances than university. So it’s a lot less kind of mass educating and much more tailored support. And I think we need to get that that balance right because it works well. You know, there’s a reason why they they have stronger statistics on widening access to their courses than other universities.
I think the pandemic’s brought some of that on a bit, where, you know, all colleges and universities, for example, have had to change the way they do things. And I’d also like to say at this point is, well, they are working in unbelievably difficult circumstances – like the cuts to colleges and teacher places and the lack of additional support for learning teachers in schools, you’ve lost 533 additional support for learning places in recent years. That is a massive reduction when you’re also seeing an increase in pupils with additional support needs. So all of that needs to..and it goes back to the structural inequality and how we address it. And then finally I word for employers as well. We do need to get to a position that employers are much more open to being flexible.
And I think, again, the pandemic may have changed that. So pre-pandemic we would have disabled people and possibly in families as well, single parents going to the employer, often women and saying ‘I need these flexible arrangements’ and an employer saying it’s not a reasonable adjustment. I’m sorry. I think I’d like to see them argue that working at home wasn’t a reasonable adjustment, given the way that the pandemic is changing the needle on that. So there are some things that we can learn from the pandemic that I think may improve the workplace and I mean, we need to be very careful, as – some of the evidence that we’re hearing about people’s a support during the pandemic just suddenly being pulled back and, you know, you’re not able to access that kind of flexibility now. We need to be really clear about that and asking employers why not? It worked then, why not now?. And so I think we need to look at employment, education and Social Security is the final tenent and I’m sure we’ll come onto that.
00:32:56:13 – 00:33:44
Yes, I’m actually going to come on to that next so that’s a good tie in. About Social Security – despite the fact that we’re in the worst cost of living crisis for decades, families having to make very difficult choices and sacrifices, whether they heat or eat. And we’re going we’re not even in winter yet. We know that people are going to be struggling to heat their homes and to feed their children.
And there’s no sign of the UK government doing anything about increasing benefits in line with inflation. Lindsay, can you tell us a little bit about your own experience of the benefits.. so you’re you were saying before that you are not working just now because of the barriers that we talked about in terms of accessing training, education and work.
Tell us a little bit about your experience of the benefits system?
00:33:44:20 – 00:37:30
My experience of the benefits system was actually very naïve. As I mentioned earlier, we grew up in a family that wasn’t on benefits. I’m the only single parent and I’m the only person on benefits in my family on my side of the family. So it was very naïve of me that I would assume that I would fill out the paperwork, the job would get done
And I really had to fight for a lot of the benefits and a lot of the help. And then you’re having to go between systems, like we mentioned earlier. When we were doing Nathan’s Disability Living Allowance application, I was advised by a close friend, you need to write down every quirk, every bad behavior (and I say behavior sarcastically) and make it sound as if it’s all one day as if it’s happening all the time. All in one day, or else you’re gonna get rejected, and then you’re going to have to go into appeals processes and it’s going to repeat again and again and again until they finally get back. I ended up at my mum’s with a half bottle of vodka, with my mum sobbing and breaking my heart because I felt like I was betraying my son just to get a benefit, just to get money.
And there’s a there’s a piece of the back in the form that says: ‘is there additional information?’ And I literally wrote a love letter to the person reading that paperwork saying my son is an angel, my son is the best thing that ever happened to me. I love him more than life itself. He’s wonderful. He’s kind, sweet. He’s brilliant. Please do not take everything we’ve wrote inthis letter to mean he is the double spawn!. And it was heart-breaking that I had to put myself in that position to fight for a benefit that should have have been: he’s got this diagnosis, this is the support he needs, tick, done! I shouldn’t have had to beg for that. What we also found out later on was he got his disability benefits.
I was getting a benefit check up when we moved house a couple of years later because I hadn’t contacted tax credits, they hadn’t increased my income support, my income tax credits, the child tax credits, they hadn’t increased it. Seemingly there was an addition when he got his disability allowance that should have been added to our benefits. I didn’t know that and nobody had told me that.
I didn’t go looking for it up because – how was I was supposed to know that? We appealed that and they gave us three months’ worth when we’d had the disability allowance for three years. And they were like ‘we’ll give you three months worth and you’ll be grateful for that. I’m in a situation right now where the council got in touch with me to find out about my housing benefit and they said to me: ‘Why has your housing benefit not gone up in five years?’ And I was like, Was it supposed to? Because again, naively, I didn’t think I thought it was a flat rate for everyone that was equal. And you made up the difference. It turns out that my housing association haven’t contacted them in five years to let them know my rent was increasing. So they’ve been paying me £250 every month and I’ve been making up the difference of my rent. This year alone, I’ve padi £700 out of my benefits towards rent and neither one of them phoned me back now to say if I can get any of that back.
And when people ask, how did you not know? How was I supposed to know? Nobody told me, I shouldn’t have had to go chasing for that information. When would I have had the time in my day to go chase for that information? Why should I know? When you respectfully (and I could be very naive) to assume that people are going to do the jobs they are getting paid to do. Why should I have to chase that benefit? So it’s it’s a broken system that needs a lot of work and a lot of help!
00:37:31:21 – 00:37:33
What do you have to say about that, Pam?
00:37:33:09 – 00:39:55
I mean, I can’t add much to the way you’ve just described it, Lindsay. The the way that people are made to feel with the benefit system: I’ve described it in the past as a bit of an identity crisis, where (particularly from a disabled person’s point of view) you have to be the worst possible, you have to present the worst possible way that your disability makes you feel and and does what it does to you to access the benefits you need in order to be able to participate in society and lead an ordinary life. So you need to do that one day: present, the worst possible scenario. Then the next day you go for a job and convince the employer that you are employable and that actually they shouldn’t worry about if you are a disabled person, that you’re going to be able to do the job in the same way other people.
It’s toxic the way that that system actually makes you feel and trerats you and we fundamentally have to change that. But you mmade, Lindsays made the point a moment ago about having to navigate what is basically an opque system, and I think we had an opportunity and I think we’re going to have to use it soon (and I’m not sure that we have) in Scotland to do to do that a bit differently. So I think we could continue be looking to be much more automated in what we do in terms of benefits in Scotland so that people don’t have to rely on having a forensic knowledge of the system to be able to get what you’re entitled to.
And we’ve heard in committee about how difficult it is to reconcile whether or not people get council tax reduction and then when you dip in and out of having eligibility for that, People end up in debt because they don’t know. All of these systems need to be much, much more attuned to the end user and be basically be there for them when they need it.
That’s why we want to have a Social Security system that’s automated, that’s based on human rights and it’s adequate. And I suppose that’s the point on which I would end for the Social Security system. We have to make sure that in Scotland the benefits that we control here. So for example, disability payment and adult disability payments, we need to be sure that they’re adequately reaching and meeting the additional costs of being a disabled person or having a disabled person in the family.
Otherwise the statistics and reporting that One Parent Families Scotland have produced won’t change because the additional cost of being a disabled person are costly and we haven’t addressed whether or not the amount that is paid in benefits in Scotland is going to be enough to meet that. So we really do need to look at that and we need to get to a position where we guarantee that nobody will drop below the minimum income in Scotland and everyone will have enough to live on through good well-paid work and top ups from Social Security when you need it.
00:39:56:02 – 00:40:22
Lindsay and Pam, you alluded to this briefly that you need to have a forensic knowledge of the Social Security system in order to be able to navigate it. And Lindsay, in a recent interview with BBC, you were saying that people need to have more lived experience of a situation in order to be able be in a position of making policy decisions.
How can we get better at better representation of people with lived experience into positions of power, do you think?
00:40:22:13 – 00:41:07
By giving jobs to people who actually know what they’re talking about, who’ve lived experience. Like I mentioned on the BBC interview, if you’re the Education Minister, you should have been a teacher, you should have been involved in the system, you should know what’s right and wrong, what’s borken, what needs to be fixed. It shouldn’t just be about college: ‘I went to college and university learning about this and now I get to be in that position. It should be. If you lived it or you worked in it. If you were a niurse or a doctor, then you get to be teh health minister. by the stuff. If you’ve lived a disability life, if you’ve been a carer and a single parent, that should be the people who are in power. It shouldn’t be people who have went to university or college or fancy schools to learn about it because you don’t learn it unless you live it.
00:41:08:13 – 00:41:24
Thank you. Thank you both so much for talking to me today. There’s so many single parents and others who will be interested to hear what you both said today. And it’s so important to hear from people who’ve got lived experience of disability and of being a single parent. So thank you both again.
00:41:24:09 – 00:41:25
Thank you for having me.
00:41:25:09 – 00:41:27
Thank you. Thank you for the report and all the work you do.
00:41:29:04 – 00:41:43
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