Pam Duncan's story so far

Pam Duncan, Policy Officer at Independent Living in Scotland project, speaks about her life and experiences of the care system.
Published on 9 Mar 2012

As a younger person I spent a lot of my time in mainstream education, well, all of my time in mainstream education. My family thought it was really, really important that I would have a mainstream education but they also recognised that that wouldn't come without challenges, and we had to fight very hard - although I was too young to realise. My parents I now know would have had to fight very hard to make sure I had the support and access requirements that I needed, in order to be able to go to a mainstream school. So I attended a mainstream school and had lots of friends and did all the things that you do when you're at school: your homework and not your homework and spend you dinner money on sweets and crisps and occasionally alcohol when you get a bit older, and, you know, did the things that would be expected of a young person.

I was always very, very close to my sister and so she played a huge part in a lot of my sort of personal care that I needed: I'm unable to do anything really for myself and have support to do everything and up until the age of about 18 that was purely and completely provided my family. Mainly my mum. My dad did bits and pieces, like he would drive me to places, because the local public transport wasn't accessible, and I remember campaigning with my mum when they introduced wheelie bins and my mum saying 'I'm supposed to wheel my daughter about in wheelie bins or are you going to introduce low floor buses?' So all of these things - my family rallied round at that time and supported me to do lots of things.

And my sister did a lot of my personal care and so did my mum, partly because I was doing things with my sister, like, going out at night and my mum didn't want to have to get up at four in the morning. So, my sister would do things like that. So, for a lot of my life everything was just done and supported by my family, and I was lucky in that sense. Lucky, because they were willing and able to do it. But, also, because they didn't feel that I needed to be held with kid gloves and I wasn't wrapped in cotton wool. I got to do the things that everybody else got to do, and I got exposed to risk, that allowed me to have a healthy attitude to it and to understand and be able to make choices based on the opportunities that I had available to me.

Once I was 18 - in fact when I was about 15 or 16 - I made the decision that I wanted to go to university to study psychology. And my mum and dad at the time were like 'can you go to the local college?', and I was like 'well no, cause there are not - it was Moray - I lived in Elgin at the time - well they don't do the degree I want to do, so I'm going to have to move'. And that posed a lot of challenges and I suppose it was at that point that I became certainly a little bit more aware of the barriers that I spoke about earlier on: the barriers to my choice and control in my life and what I understand to be independent living, which I'll come back to.

So at the time, my mum supported me, and the school as well, very much so, through the education process - so they found out what I would need to be able to get to the university, and the grades I would need in my Highers and then, what support I would need once I got there.

So, I was going to be studying in Stirling, which is few hundred miles away from everything that I had known: my family, my friends, my education, my house. All of the things that I had built up around me that were supportive: I had an accessible house for example and my family provided my personal care, my dad helped me get around. That's how I was mobile. My friends supported me to be able to access social activities because they came with me. I was interested in art, I used to go to art classes. All of this, and also the pub and clubs and things on the weekend: all of these things suddenly were not going to be available to me because I would have to make new friends, and rely on them, I would have to learn new styles of learning and have support to do that. For example, IT equipment. I would need accessible accommodation when I was at university.

But most importantly, for me but not for everybody but for me as a disabled person, care and support was essential because I'd been so used to my family doing it and that process become probably the most lengthy and onerous process that I have ever been through in my entire life. And, that's saying something because since then, I've moved house and I had to apply for jobs and I've gained a masters degree. All of those things are quite big things in people's lives and I would still say that the process getting a support package to meet my needs as an 18 year old woman, at that time, was the longest, most onerous and difficult time that I had. However, it was fruitful. And, it ended up being a really good outcome, at the end of it.

What went wrong with it, I would say, was initially... the assessment itself was very much based on finances and I know that even - let me do the maths - 12 years on, in fact it was 2 years before that, it was 1998 when I started to apply. Because I got my grades for university in 5th year at school: I got 3 As and a B in my Highers and that was more than enough to get into university. I got my unconditional place at Stirling University and couldn't take it for 2 years because of the process to get a care and support package in place to allow me to take it. So, luckily the university agreed to a limited deferment for my place for one year so I was left kind of sttiing about thinking 'what am I going to do with this year? I've got my Highers, I've studied everything I wanted to study'. So I stayed on at school, so it was not too waste my time. Did another Higher, did a Sixth Year Studies and did modules and art and jewelry and such like to pass my time to be quite honest with you. At the end of that year the care package still wasn't sorted, and I'll explain why in a minute, and I was then left obviously, out of education. So, I thought what am I going to do?

The university further extended my unconditional offer, didn't require any further documentation or further education: they were really okay with that which was good. They held my place again, but by this point I was slightly exasperated by the process taking so long: I had done a year at school that was, to my view, slightly unnecessary, although in the end I ended up doing Modern Studies and I loved it, but that is beside the point.

The year out that I then took I then ended up working in a taxi company answering phones, for two pounds an hour, because there were no jobs where I was living at the time, and there was no public transport to be able to help me get to and from work, and there was no support to be able to support me in the workplace, so I ended up basically going around the corner to the taxi office, taking the job for two pound an hour. Which passed the year, and I enjoyed it, but I did spend a year doing things that I hadn't thought I would be doing. And the main reason for that was because there were arguments about funding, there were arguments about how much funding and what I would be eligible to receive from social care. There were arguments about who would fund it because I was moving from one local authority to another.

And there were arguments about what was an acceptable level of funding from my point of view and what I thought I needed, and what they thought that I needed. So we went through things like at one point ... now I pretty much need 24 hour care. I consider myself to be a completely independent woman because I make choices for myself, I control what happens to my life, I'm free to make those choices and to live my life in a way that other people do, and I can do it with dignity: all of the four principles of independent living. So these things to me mean that I am an independent person but I do have someone with me all the time, and I need someone with me all the time. So, this was the point that, although it wasn't as politically aware or articulate at the time, those were the sort of arguments I was making to the social worker. Now ... I was lucky, because my family were quite supportive and were quite good at being able to help me articulate what I needed. But you would need a lot of advocacy and support to be able to make the arguments that I made, I think, at the time. But, things were coming back to me like, okay, we'll need to have to go to the toilet. So, what we'll do is, we'll catheterise you and then you wouldn't need someone with you all day.

Of course at that point I was like well, that's not really what I need and and I don't think it's the safest option either, plus it's not something that I want to be contending with when I don't have to. I don't have an issue of incontinence, I need support to go to the toilet, someone to basically pull up my pants and so that's not ideal.

Then it was suggested that I would drink a certain level of liquid one day and they would measure basically what I wee'd out and then they would tell at the time they would do some calculation to figure what time it took and how long and how many times I went to the toilet so they could figure out the time slots that someone would have to help me use the toilet .

So again I said, I'm sorry, that's ridiculous and isn't, to me, acceptable. The other option was incontinence pads or incontinence pants, which again I said: No I am sorry, that still doesn't to me feel dignified and certainly doesn't suit the sort of lifestyle that I want as an 18 year old woman about to embark on a new career and make new friends. I wanted to have as much chance of being personally confident and identify with my own self-image as well and as being able to attend education, gain a degree, which you know pretty big things for most people. And so no I'm sorry, I wasn't going to be accepting sitting in incontinence pads and having them changed when it was suitable for the local authority to pop in and do so.

I have to say when challenged on this basis people would actually say, yep, actually you're right. So it's not like people were saying, "No, no, no, no. We expect you to go through this experience." It was just that the system itself offered them very limited ability to be as flexible as they required to be and I understand that, and I understand that people work within a very constricted system at times.

Which is why I think the system of self-directed of support - at the time when I started to go to Uni, it wasn't called that. It was, I think, just called Direct Payments, and also I was getting ILF at the time. Well, I was making an application for ILF at the time: Independent Living Fund. But those things started to open up a much more flexible system. What was still slightly inflexible was the way that it would be funded. Who would fund it, would it be Moray Council where I was living, would Stirling Council where I be moving to? And, I think what was agreed to in the end, was simpy that and Moray Council would fund it until I finished my degree, which is what happened.

A student social worker came on board. I went through three social workers because, some of it was because we weren't seeing eye to eye and some of it was because people were moving on. And eventually a student who was placed in the local authority came to do my assessment. Now I don't know whether it was because she was not constrained by the system because she was a student, so was a bit less likely to have to stick to the conditions that the other social workers were asked to - or whether it was because she wasn't maybe as, kind of worn down by the system, or because she was just new and fresh and quite innovative. But it worked really, really well, and the process ended up being where she basically allowed me to develop my own assessment and explain what I needed and justify everything and I understand why that needs to be done as well. And I was quite lucky because I've always been fairly articulate at things like that. So, I was able to justify why I needed then and I was able to do that within the terms and conditions in the systems that the social work department were working within. So it's easier for them, but that sort of process I think is essential for disabled people to have support to go through, and I think it is key to any flexible form of social care, that people are supported to be able to develop their own self-assessment.

And key to the outcome of that assessment: I ended up with 65 hours of support and 7 nights a week. Now the overnights were quite unique actually, because, and again another aspect of flexibility in my package, in that the person didn't sleep over with me, for two reasons. One, I didn't particularly want that, and two, because the halls of residence could only get me one place, and one bed, and therefore there was nowhere for them to sleep, and the rooms were tiny, you couldn't even fit a blow-up bed in it.

And so we had to think of a system that would allow me to have someone available overnight, that would definitely be able to put me to my bed, but that wouldn't have to do that at 7 o'clock at night or 8 o'clock at night, but could be whenever I wanted, and would be able to take me to the toilet when I needed it. So they developed the on-call system which I still use today, whereby someone is available all evening. They know they'll be called out, so it's not an on-call on a kind of maybe basis, it's a definite that you will be called out, but it will any time tonight: so it could be five in the morning it could be a eight o'clock at night and, it could be four or five times a night, although it was very rarely ever more than two.

And that system worked really, really really well and provided me with lots and lots of support to be able to do exactly what I needed to do: it allowed me to make the friends that I wanted, allowed me to study at the wee hours of the morning, you know before your essay is due at nine o'clock the next day in the way that any student should be able to do. And what was key to that outcome of that package of support was that it supported my choice and control: it allowed me to make the choices other people would make. You know, no I'm not going to go here I'm going to go there, because the package was flexible enough to allow that to happen, but it wasn't flexible to the point of being wasteful where people would be sitting about or anything. I mean my care package every minute of it was always used, but it was so flexible that it meant I could live my life in the way that I wanted to: in the way that non-disabled people can and disabled people should be able to in an equal society that respects their human rights.

And so that's why I fundamentally believe - and I suppose it wasn't until later when I gained my degree and got the opportunity to work with the disability movement and the independent living movement - that I realised the political and the politicised relevance of those decisions and that process. And I understand now very much that it is about being able to be free and to do the things that other people want to do. And that when we talk about control in disabled people's lives, it's not just about controlling who and what and how much. It's actually about not being subject to the control of external barriers. So for example, if I want to travel to Edinburgh today by bus and there's only 3 accessible buses (that's not true - there' s quite a few probably, but for talking's sake, if that was the case) the control at which time I will travel is taken outwith my hands. And that's not something that anybody else in society has to experience or endure, outwith the constraints of the public transport system for example, but there are additional constraints that disabled people face. And that's why self-directed support and independent living are so interconnected.

Independent living for me when I was younger, when I was going through this whole assessment process - I was being assessed by social workers and OTs and such like. I was always told it'll be about. 'You'll be able to put your socks on yourself. Get this piece of plastic and a bit of rope, and put your socks on on your own, and you'll be perfect, and that'll be you!' And I remember thinking, 'That is not, surely that's not what independent living is about.' I was late for classes because it took me that long to put my socks on, and it wasn't until I left home, went to Uni, got my degree and then started to work and work with other disabled people, and get the peer support from those people, and become part of a movement of people that I realised that that isn't what independent living is: it's about being free to be able to do what you want, as other people do within obviously with the constraints of a civilized society. And, do that with freedom of choice, dignity, and control. And Self Directed Support has been an essential step towards that for disabled people. But it could only be that essential step, part of that journey, if it is considered to be part of a process where the end point is independent living where disabled people can live their in the way that they want to and in the way that other people take for granted.

If it's seen as a means to an end, so, for example, somebody gets 10 hours of support provided by a day center, but nobody can direct where to buy that. That in itself is a step in the right direction but it's not the full story. It still doesn't give that person access to exactly what it means to be independent and to enjoy the same human rights as other non-disabled people in society do.

And so I suppose the most important thing for me and for the organisation that I work for - Independent Living in Scotland - and for many people in the independent living movement, is that self directed support is seen as one tool in many, that support the process of independent living and disabled people being able to participate as full and equal citizens in our society.